Lily-kayda and the Tale of the Terrorizing Tumor

Adrenal Insufficiency Initiative

2011-10-24T13:02:00.000-07:00

There is an initiative to get the life saving medication Solu-cortef ready available by EMS to treat people like Lily who have an adrenal crisis and are found unresponsive or in an emergency situation. Please support us by signing the petition. This initiative could save Lily's life. The condition may be rare, but it is easy to treat with a medication called Hydrocortisone which can also be used for other conditions. Thank you!

http://www.change.org/petitions/adrenal-insufficiency-united-create-protocols-for-adrenal-insufficiency#

The Sammich Approach

2011-08-16T12:52:00.000-07:00

My husband often employs the sandwich approach in parenting. Positive reinforcement, criticism/instruction/discipline, positive encouragement. On days he is really on his game- the kids don't even know they are being schooled and I often marvel at his technique. Heck sometimes I'm even caught between criticism and postive before I realize what happened. He's gooood. It's one of the many things about him I love and appreciate. Sometimes, when I have time, I try to emulate the finer aspects of his teachings- but time has been in short supply.

The kids are back in school- we are in week 3. I have heard from 2- TWO of the many folks I emailed regarding the Storage and Administration of Medications Policy and it's obvious faults. The email went a little something like this.....

My name is Jennifer Mallory. I have 4 children and have had them in the Hawaii public school system for 6 years. Last May, a new policy was instituted that affects one of my children significantly based on her medical needs. This policy changes the way the school health aide is allowed to store and administer medication. There are only 3 medications allowed under this policy- Glucagon, Epi pen and Inhalers. There is no space, policy or provision for children who have special medical needs that cannot be treated with these three medications. In 2010-2011 SY, I was able to fill out a form 36 that would allow approval for her medication to be stored an administered at school. This new policy affords no alternative. I requested a 504 plan evaluation to ask for accommodation for her medicine and we had that meeting July 27, 2011.

In 2008, my daughter Lily had 2 types of cancer, adrenocortical carcinoma and a rare sarcoma. She has been through multiple surgeries and chemotherapy. Today she is a healthy, bright 6 year old. A side effect of the chemotherapy is a condition called adrenal insufficiency, her adrenal glands no longer function. Adrenal glands produce steroid hormones that regulate bodily processes such as blood pressure and stress response. We replace this function with daily medication called Hydrocortisone. I give her this medication daily, outside of school hours. In the case of sickness or trauma, the body releases extra hydrocortisone to help the body maintain life functions. Lily’s body cannot do this, so in the case that she develops a fever, diarrhea, vomiting or is severely injured, extra Hydrocortisone needs to be given.

Adrenal insufficiency is extremely rare. Hydrocortisone was not even on the school formulary last year. That does not mean it is any less important to the safety and survival of my child in an emergency situation. Unlike Glucagon or the Epi pen-you cannot overdose on Hydrocortisone. The injectable form, called Solu-cortef is very similar to Glucagon. Without this medication, in the case of an emergency, Lily could die. She does not fall under the special education protections that I am aware of, as she meets proficiency on almost all of her benchmarks. This policy causes undue stress and work for families, educators, administrators and the Public Health nursing system.

The solution presently is the recommendation that Lily has to go to the only school in the complex with a nurse who under this policy is licensed to give medication other than the 3 medications of the policy. This policy is discriminatory. The health aides at any public school are allowed to give 2 types of injections in emergency situations, both which could have detrimental side effects- but not allowed to administer another life saving injection? Her condition requires no more assessment than that of the conditions under the policy. My daughter would then be required by DOE policy to go to an alternate school based on her medical condition, which is in practice discrimination and in opposition to the Americans with Disabilities Act. The policy is seriously flawed. At a minimum it needs to have a stipulation for medicines other than the epi pen, Glucagon and Inhalers. There are not only 3 conditions that require life saving medications. If a health aide is qualified to give either of those injections, she is overqualified to give a Hydrocortisone injection as it requires no assessment or evaluation.

Please review this Policy. It is not sound practice and does not adequately address the issues implementing it produces. There needs to be a way to get medications approved for storage at schools for all emergency life saving medications. I have contacted EMS and with a medic alert bracelet and a letter from a physician- they can approve administration of these rare medications they do not have on hand. There are reasonable solutions to this problem that are neither taxing nor difficult to implement at low or no cost that facilitate the best care of Hawaii’s children. This policy is a disservice to families who have already faced way too much hardship and carry the burden of caring for a child with special needs. It is a disservice to the hardworking educators and administrators in the schools who have to try and keep their children safe while the policymakers tie their hands behind their backs. Please contact me to discuss any fine points of this policy that may not be immediately apparent to me.

Thank you for your time,

Jen Mallory

There are many issues with this letter. It goes against many of the finer letter writing suggestions. I think it has about 8 run on sentences. It is far too long, it uses words like diarrhea and vomit and ends on a note of sarcasm. So I daresay it gets skimmed, if read at all. There are a couple of things it does not mention. It doesn't mention storage space being an issue- it is not- the only issue is the policy. It doesn't mention the gender or age of Lily's siblings. It doesn't mention taking any legal action and I assure you I have not the funds to retain legal counsel on this matter. It is funny how one phone call can change the flow of the smoke in front of the mirrors. Here are the 2 responses I have gotten.

Dear Ms. Mallory:

I was sorry to learn of your daughter’s medical condition, however, it sounds like Lily is a thriving cancer survivor. Your daughter’s need for medication and accommodation at school is a complicated issue impacted by DOE policy and staffing. It is my understanding that your family has been represented by legal counsel, Eric Seitz. I have been further informed that a solution was found which meets with your approval. I believe the Leeward Complex Superintendent found a storage space at your child's school so that Lily can remain with her three older siblings.

I will be meeting with Superintendent Kathryn Matayoshi to discuss a range of school health issues before the end of the month. I will share with her your concerns. Thank you for bringing the issue of medication storage and administration to our attention.

Again, I am pleased to learn that Lily and your other daughters are doing well.

I immediately recognized the sammich approach and respect the skills- but unsatisfactory.

and this one is my favorite..from someone I was told by 3 different and unrelated sources is the person who made the policy in question.

Dear Ms. Mallory,

My apologies as have been out of office and tardy in responding. I hear your concerns but I am not involved in the policy and its implementation. Please continue to work with your school team and the Public Health Nurse to address your daughter's needs.

Thank you and take care.

I would like to, but the policy doesn't seem to allow for the implementation of that.

Paradise Lost

2011-07-31T10:00:00.000-07:00

I never dreamed that 4 years ago, when we were fighting to keep Lily alive and healthy- that today I would be fighting to keep her in school. Part of me says keep her home, put her in the K12 internet academy program and just have fun with her because if we have learned anything in this journey:life is too short and too fraught with sickness to take it for granted. But Lily loves people and school. She cried when I told her she might have to start school later than her brother and sisters. Not because they might get to go, and she might not- but because she was supposed to see Mrs. Saba at recess and say hi to her and learn all kinds of new things in her new class. She has been practicing addition all summer because she heard they were going to be learning that in the 1st grade.

The Economy is Failing. The School systems are failing. Our overall Health as a country, failing. Yet one of the reasons we choose to stay in this great country is for the freedoms. We are guaranteed a free public education. We are guaranteed in theory, Life, Liberty and the Pursuit of Happiness. When you face cancer- you learn that life is not in fact Guaranteed. All health institutions are not created equal. You are at Liberty to choose which institution you go to, especially if you raise your personal debt ceiling as far as creditors will allow you. Then you will owe creditors everything for the rest of your life. But you get a parent with a child whose life is threatened and you have an individual who will do anything so their child may pursue a lifetime of happiness.

The school system in Hawaii is inferior. I can not precisely tell you inferior to what. My children have attended school in this system for a collective 7 years. With 2 exceptions, they have had very good teachers. 2/7- less than 30% is not bad odds. All 3 of the kids teachers last year were not just good, they were great. Lily's teacher helped us address her quirks and gave her responsibilities in the class that suited her maturity level. Kiera's teacher took her from being below profiency in most subject areas- to being at or above all but one section! Phillip's teacher gave them a well rounded curriculum, over and above what the standards required and gave them the skills and confidence to face a new challenge , middle school. She kept in constant contact with parents, which is truly appreciated because most 6th graders are seeking independence and report their days as "fine". I tried to convince myself that poor administrators were not as important of an issue- what really matters is the teachers. I found out this past week how wrong I was.

This past week I got a lesson in politics and the legal aspects surrounding the education system. Everyone is afraid of liability. Laws are in place to protect all those under the department of education employ- Hawaii has Good Samaritan laws that protect anyone from litigation if they are trying to help save someone's life. Last year, school health aides became Department of Education(DOE) employees and not Department of Health(DOH or public health) . Homer Simpson lives permanently perched in the forefront of my consciousness, oh the irony. There was a very good reason that school health rooms were under the DOH- that is where sick kids go. DOH has nurses who have licenses to train aides and oversee their facilities. In an effort to save money, the DOE took over this position, because health aids do not have licenses- they could be paid less if their delegated responsibilities were less. So in order to do that, not only did the position have to change, the INTERPRETATION of legislation had to change. We call this policy. So the DOE changed POLICY last May that does not allow health aides to make any assessments, give any medications, store any medications or perform any life saving functions- EXCEPT 3. Health aides are allowed to give an asthmatic their inhaler and call their parents. Health aides can give a diabetic child a Glucagon shot and call 911. Health aides can give a child with an allergic reaction, the epi pen and call 911.

I talked to the DOE, I talked to DOH. DOE says public health nursing says they cannot allow health aides to do any assessment. But wait- they can assess on the 3 aforementioned conditions? DOH says that DOE makes the policy, they just recommend what is safest for the children and medically sound and their policy does not allow assessment. But you just said the aides COULD assess in 3 situtations? DOE wants to save money. DOH wants their nurses paid and their control was just taking out of the health room. I'm pretty sure I just dealt with this situation. Yes, yes I did. Bella wanted to use Lily's DS. Lily did not want Bella to use it because she doesn't know how and she will break it. Bella swears she knows how and won't break it that Lily just won't let her use it. SO if Lily lets her use it and Bella breaks it- she's out a DS- if Bella uses it and breaks it- it's chalked up to she didn't know better so she's not responsible. So I stepped in and made sure Bella knew she was responsible for her actions and her actions alone and if she broke it, she was responsible. Lily was under no obligation to share, but it was the right thing to do. Sometimes the right thing to do is risky. Far too many people choose feigned security- because if Lily doesn't share- she sets up a precedent of not sharing. The next time Lily wants to borrow something of Bella's guess what will happen? And it won't be about this item- it will be about the DS. So I say 1) always do the right thing. 2) Look at every situation in the relevant context.

I don't care about the politics of whose job is whose and how the DOE and DOH departments dys-function. I am very sorry that someone did the right thing and got sued. I am even more sorry that our "justice" system allows such careless litigation to proceed. Americans are known internationally for being litigiously careless and overzealous all at the same time. We are the butts of many jokes. I got fat- sue McDonald's, I am unhappy, sue my employer, I was lazy -sue for discrimination, I had an idea- sue the person who worked to realize it, she took my boyfriend- sue her for looking like me. It has to stop. People are responsible for their actions. Legislation cannot absolve anyone from that responsibilty, yet we continue to interpret it as such. Unfortunately Legislators and policymakers set the precedent in all the wrong ways. Until common sense starts prevailing, we are lost. Until the people of this great country stop accepting injustice as part of the policy and assuming it can't be changed- it will not change. I would love to spend my time pursuing personal happiness, but I am going to pursue change. The future starts with our children and the children of this country are being set up to fail by the laws and the policymakers who refuse to be held accountable. Write your Legislators. Write your Board of Education. Let the Governor know. Next time you pay a tax- think of all the people who use that money to provide a disservice to you and hold them accountable. When someone does the right thing, excels at their job and accepts responsibility- let's give them the praise and accolade they deserve. You will find there are so many out there doing the right thing and fighting too. There can be change. It can always get better if we make it so.

Dealing with Discrimination In the Hawaii Public School System

2011-07-28T08:10:00.000-07:00

Two days ago, a quick search on the KeoneUla school website for a copy of the school supply list turned into a veritable shitstorm. I could not find the list. What I did find was an announcement tucked away in the bottom of the page about school rezoning that will take place. As of next year, Lily and Bella would not be allowed to continue at the school they are at, despite a grandfather clause issued 2 years ago allowing them to start and complete through 6th grade there. When the initial anger subsided, I realized despite the fact the school has new facilities- they are not taking advantage of them. The administration is noncommunicative, narrowminded and at times rude. It is not a school that I wish to continue to fight for. I volunteered over 20 hours last year, often with Bella at my side assembling binder folders. Not helping kids read, do math, science or social studies, or teachers with menial tasks to save them time- but squirreled away in a room gluing and taping folders together to put in binders- despite the 8 administrative assistants that "greet" you in the office. And by greet I mean look at you when you walk in. I was done. I was ready to pull my kids. I went into the office and was greeted and asked admin assistant #1 if she knew anything about the rezoning. She did not. Of course not- the employees of the school have no worries about their kids or neighbors kids who they carpool in with being excluded. I spoke with the Vice principal who did not have details but said they were not really giving geographic exemptions out to stay in the school. So I have to figure out how to get 4 kids to 3 different schools within a 10 minute period next year- nice. Not gonna happen. I take 3 GE forms. Not to stay in that school, but to apply to a school we went to years ago before this school was built.

I call the Principal at the new school- leave a message and send an email. I let her know Lily needed medication and our situation and inquired about availability. Within hours she had called me back and sent an email- there were exactly 3 positions open in the grades I needed. I sighed relief. But it was only the calm before the storm. I got a call from our Public health nurse that afternoon regarding the new policy for Lily's medications at school. They wanted to schedule a meeting for 9am the next day- could I make it on short notice? It looks like I don't have a choice if I would like to get Lily in school for Monday and once again Phil can't be there because he is TDY.

Last May- the very last week of school I receive a letter that explains the change in Department of Education Policy for storage and administration of medications at school. I went into the office to see how I could proactively get this settled before the new school year. I was told to talk with my child's counselor- I did and I left a message- but technically no one could do anything until they went back to work at the end of July. So I was on hold.

The new policy only allows for epi pens, glucagon and inhalers to be administered at school. Yes diabetes, allergies, and asthma are the most common medical conditions in the public school population, but they are far from the only medical needs. Health Aides are now DOE employees, not Department of Health employees. They take a course, they can administer the 3 meds listed, they cannot assess any child's condition(which is utterly ridiculous- because in order to give any of the 3 listed meds- a precise assessment and evaluation needs to be performed). Only Licensed nurses can give meds, but the policy doesn't allow other meds to be kept at school. Each Complex(similar to mainland school districts) has 1 school with a school nurse. Therefore the DOE is saying that any child who may need medication other than the 3 listed, IF they approve the medication- which now can ONLY be done by procuring a 504 plan- that child with special medical needs can ONLY go to the ONE school in the complex that has a nurse. So on the very day I learn that my kids will only be allowed to go to the school they are at this year, I learn that Lily may only be allowed to go to one school in the district and believe me not all schools are created equal. I start formulating my remarks for Lily's 504 needs evaluation the next morning- knowing full well that the school adminstrator who neither respects me or my children has the power to fight for us and she will not. My only hope is that the principal of the new school was was welcoming and accomodating and willing to work with us on Lily's special needs, will.

My stomach is in knots. We fought and continue to fight to keep her alive. The life expectancy for a kiddo with her tumor is 25 months to 5 years. I ignore that. I plan life like she is a normal kid and has a normal life expectancy, otherwise you go crazy. She is on medication she will be on for the rest of her life, that is her normal and we treat it as such. In the case of an emergency, she needs extra medication or she will die. I am trying to give all my children the best oppotunities I can with the resources at my disposal. Making people aware of her condition is for her safety, I do not want her treated differerent on a daily basis. I give her Hydrocortisone daily at home. She does not require daily meds to be given at school. She is bright, meets all but one proficiency level and that one is the ability to show numbers in a variety of ways. I laugh because for Lily- it's her way or the highway, so that totally makes sense. But IF she gets a fever, starts vomiting, has diarrhea or a traumatic injury- her body will not produce the extra hydrocortisone it needs to sustain life function. That medication has to be given in that situation. Reference last May's hospitalization due to the flu.

My neighbor coerces her husband to prevent our collective 6 children from harming themselves or their worldly possessions and she comes along to the meeting as Lily's emergency contact and my transcriptionist. We join the meeting- the principal, counselor, student services coordinator and public health nurse I have worked with before. There are 3 other representatives from the district there as well. We begin discussion about Lily's condition and her needs. They are simple in my eyes, she needs medication at school for the case of emergency. She needs someone to give her the medication in the case of an emergency. And that is where the simplicity ends. It is repeatedly reiterated by the principal that the new policy will not allow anyone to administer this medication. Um yeah- that's why we are in this meeting to evaluate if a 504 plan can help and if Lily is eligible for it. Fortunately I wasn't the only one in the room who was under that impression as the District ladies suggest doing the formal eligibility paperwork before we discuss anything further. Since Lily had cancer and her current medical need for emergency medication is life threatening, she qualifies for a 504 plan. I knew this because after she was denied eligibility last year, I did my research and found out that they should not have denied her. I was much better prepared this go around- chalk another one up to experience being a great teacher. I did not appeal that decision last year because the plan was worked out and the school agreed to keep her meds and the health aide agreed to administer them.

Now comes the tricky part- deciding which accomodations we are asking for under the 504 plan. We can ask for whatever, but the final decision lies in the hands of the DOE and they can refuse it or accomodate in a way they see fit. To me it is clear cut- I want her meds kept at school and I want to be reasonably assured that someone would give them to her if the emergency occurred. I know that under the current policy the health aide cannot be required to. But the good samaritan law protects any volunteer who would rise to the occasion and save my child's life in the unplannable event that there is an emergency. I would hope that at a minimum someone would be able to call 911 and let them know Lily's condition and even though they cannot dispense her medication- at least have it on hand to know what she needs. I have 3 doctors letters explaining the condition and the necessity of the medication in different ways so that everyone could understand it. I show them the emergency kit I have prepared, with the shot, the pills and the index card with step by step pictures how to administer it provided by the NIH. I show them the Emergency care plan that I prepared for all Lily's teachers, the health aide and staff last year- it has her picture, her condition, all of our emergency contact numbers and a 6 box table that states: if you see this(fever, diarrhea, vomiting, etc) Lily needs this(pills, injection, 911). And I plead with them. All I want to know is that some concerned staff member would take resonable steps in an emergency to help my child live. I have worked too hard to keep her alive for her to get sick or die when it can be avoided. Accidents happen, kids pass out and sometime preexisting conditions are found after it's too late. Everyone always says- if we had only known. Well in Lily's case we know and it can be avoided. I find it hard to believe that in a school with 80 some employees- not one person would be willing to volunteer to save her, that they would stand idly by with hands bound by policy or administration and watch a child die when life saving medication is at their disposal. If that is truly the case- this is not an institution any child is safe in. The principal points out that an accomodation should be made to allow Lily to make up school work due to absences. The DOE employees are incredulous-that isn't the policy at your school already? I get a wink from panel member. Right on, I am not crazy in thinking that was a stupid policy. But then again, I'm beginning to think I have yet to find a policy I like.

The meeting takes the ugly turn. Debate over how the policy is written ensues. I point out it does not state that no one can volunteer to give meds. The principal says she would not allow anyone to volunteer. You would not allow someone to volunteer to save a child's life when you know what they need and have it on hand? I would not allow it, she says. Let- me -be- clear- on -this. If the DOE ALLOWS her medication to be kept at school and she is laying passed out at your feet and someone volunteers to give her life saving medication- you would NOT allow them? I would not allow them, she said. In the collective silence of the room you could hear both my heart break and the angry lava start to spill out as my neighbor shook her head and mouthed- it's over. Nope- It is just beginning.

The principal has the audacity to continue about how at her school it is always safety first and that since they cannot meet Lily's safety needs, perhaps we need to have her go to Ewa Beach where they have a nurse. I hope to God no child ever passes out or is severely injured at her school because she would not allow them to be helped. Unless of course she would just not help Lily because of her condition, but that wouldn't be possible because that would be discrimination and that is not allowed. There are policies against that. And if she truly would only act in that way because of policy then the policy itself is discriminatory by nature and also wrong. The panel would like to discuss what we do about Lily. She cannot start school at Keoneula Monday because a plan is not in place and the next 2 "work" days are furloughs. Someone points out that I should discuss it with the principal in private. I agree, that would be a better opportunity to have her sign the GE because even IF they met Lily's needs- I would not allow my children to stay at that school under her watch. That is no longer an option.

I step into her office, tell her I called Iroquois Point and they have spots available and could she please sign the GEs for my children. She bumbles around not knowing where to sign saying oh, IP is a good school, they are IB too. She tells me that she is sorry. I already knew that.

Taking Shots

2011-05-19T20:38:00.000-07:00

When Lily was diagnosed with adrenal insufficiency, we were given the emergency kit. A vial, a syringe and instructions. Phil got the initial instruction and relayed them to me in the style o Pulp Fiction. To this day he doesn't understand why I don't keep a sharpie in the kit. Because you don't give the shot in her heart, dear. That isn't to say giving the shot won't get you in the heart. Because when you have to give the shot- you are in dire straits.

So we have had the stomach flu. The good old fashioned, getcha every which way with a vengeance virus that makes you question your mortality and leaves you praying to the porcelein god. It was like clockwork. Phillip was the first hit and I questioned whether or not it was pancreatic insufficiency or just a tummy bug. A call to the doctor earned Phillip an extra emergency shot and me a lesson in advanced diabetic treatment. Usually ketones are high when blood sugar is high-you solve the problem with an insulin shot. SO what happens when a diabetic is sick and ketones are high and blood sugar is low? Problem #1 You get a lesson in advanced diabetes management. So you have to mix up this special glucagon shot which tells the liver to release all the sugars it's got stored. But since he was sicka nd not unconscious- we only needed part of the shot. Yet since he uses an insulin pen- we were never issued syringes- problem #2. A Dr. Pepper later and a trip to the drug store by my neighbor- procures us the correct equipment to treat the problem. Lesson learned. Then 2 days later- Lily gets it. Narrowing down the field of suspicion of causes- yet her immunity is questionable as well. I worry that she is having insufficiency issues. I don't get the luxury of dismissing a virus anymore as just that. For both kids, regular sicknesses can rapidly become medical emergencies.

SO Bella starts puking a couple days later. I have now confirmed it is not a bit of bad luck for the insufficient children- and by insufficient I mean Organ-izationally challenged- not that they aren't good enough. I get her on the mend and we have a whole day with no one puking. The next morning Lily wakes up with a tummy ache. Lily frequently has tummy aches- when she's hungry, when she has to go to the bathroom- when the wind blows. I take them seriously- but I also know they are fleeting at times. She tells me she threw up. I am about to question the authenticity of this when she dodges into the bathroom again. Lovely. I think this technically makes it an epidemic.

One of the problems with adrenal insufficiency is illness. The adrenals boost cortisol production to help keep all the systems in check- blood pressure, heart rate, fluid balance, temperature. Mess with the system and you get one sick kiddo. I know the importance of getting Lily to take her meds and keep them down. We try two more times. No luck. I break out the stores of her chemo anti nausea meds. I wait 15 minutes and try her hydrocortisone again. I even mash the pills up really fine and dissolve it in ginger ale. This time it stays down a half an hour which is on the cusp of counting. We are approaching lunchtime. Since she is sick, I need to triple her dose and I am not even sure she's had one. I call the doctor's office. No answer. I get distracted by repeated pukings. Next thing I know- it's almost 2. We have reached emergent status- I page her endocrinologist. We are into needing the shot territory. As I call, Lily starts to get sleepy. Her endo says get the shot ready. 2 months ago I would have been unsure of this process- but due to the presence of a certain diabetic in the household- shots are kind of a regular thing. A sardonic thought crosses my mind- everything happens for a reason. I call my sitter over to help hold Lily, it isn't too necessary as the shot is quick. I know she needed it because she hardly cries. Her endo calls back immediately and wants us to head into the ER.

We go. I hate the ER. I hate the necessity that brings us there. I hate feeling like I am faced with an indomitable challenge-parking at Tripler, or just day to day life anymore. There is one of me, 4 kids and my husband is TDY. The night before he apologized for leaving, I promised we'd be ok after all we needed the healthcare. Way to jinx it. It's not a good feeling. I would stop to cry or maybe even scream, but there is no time. My phone rings- it's the husband. I am too tired to pretend we are OK. He promises to be on the first flight home after training the following day. We'll be fine, at least that's what I keep telling myself. We get triaged and her heart rate is very high- 137. She is in crisis. They give her more Hydrocortisone. Lesson learned- I waited too long on the shot. This run of the mill virus just bought us a stay at Hotel Tripler via the better safe than sorry passage. Another night of no sleep. But that's nothing new- the accomodations are just less comfy to toss and turn in.

The nurse in the ward is new, but has been told we know our way around. She covers her bases while not going into overkill on the welcome. I laugh at having to fill out the admission questionaires- the qc for the floor to see if we can be trusted. She apologizes, but it's protocol. I fill it out joking along the way- when it asks for social support system- I put Facebook. I put a line through it with a smiley face and put the obligatory family and friends. Last time Phil was there the last question asked if the hospitalization was normal. He wrote truthfully- despite that we have done this dozens of times- it is not nor ever will be normal. I was looking forward to writing my own quippy response, but the question had changed- it was now- Will this hospitalization affect your lifestyle Yes or No? Seriously. Yes it will flipping AFFECT my lifestyle. What part of hanging out in a small cell with beeping equipment, iv lines, routine vital checks, invasive procedures and barrage of parading residents says lifestyle of choice? That disregards the reason for being here- the serious illness of my child. Something I have little or no control over here. If something beeps at my house- I turn it off. If someone knocks on the door and I don't want to visit- I don't answer it. I don't catalogue every ounce of urine my child excretes generally speaking- because it's gross. When people talk about living the glamourous life- none of those things are present.

When I am convinced Lily will live, I start pestering docs to order her CT scans inpatient style. No sense in me coming back in 2 days, making her not eat - when she currently has nothing in her stomach and is right there. Apparently this is something akin to an act of congress. But we make it happen. It takes me, my mother in law, my neighbor and finally Phil all putting in requests each time a doc walked in the room. These tests that a week ago, I agonized over. Tests that I worry will damage her already fragile system. Yet through all of this- I find a stasis. No news is good news. The CT doesn't reveal anything urgent. We will wait and see in 3 months. It is the best answer I can hope for. It is our new normal. Waiting and seeing. I don't know what it means- I don't know what 3 months time will do. I know that a lot can happen in just 2 days and we'll take it a day at a time. We take some shots along the way- but I found out I can give them too.

worried sick

2011-05-19T19:14:00.001-07:00

Sick kids should not be in school. Sick kids need to stay home and get better and more importantly not infect me and my little petri dishes with their vomitude. A runny nose , does not make one "sick". It may make one "allergic" or "runny" but that too unless accompanied by another factor does not count as an exclusive reason to be kept home from school. SO what of a runny nose AND a vomiting episode, you might ask? Well experience tells me that in a child with a diminuitive gag reflex- such factors are so intrinsically linked that they should really be counted as one then therefore NOT and exclusive reason to be kept home from school. The only reason I would keep them home from school under these circumstances was to prevent them from having to lounge in the healthroom, picking up even more vile illnesses, which has happened now- twice.

The problem with routine illnesses is not that they are present- it's just that all of the sympoms mimic those of acute conditions or induce acute conditions in special endocrine patients whom reside in my home. Which is to say- life becomes and hour by hour mess until crises can be ruled out and virus ruled in. Lily has been coughing for a week or so. One of those allergic, postnasal drip annoying, gets worse when she lays down kinda coughs. Non productive, no real runny nose, no fevers- until Monday night. The night after her sedation for her scans. The night after her doc called to say there's a blip mid femur we would like to take a better look at with another CT and xrays.

So now the worry sets in again. Like it ever leaves, it just burrows in the recesses of my mind - a cancer in it's own right. What if the nagging cough is a symptom of something more- the first sign of a bigger issue? I am so tired. I haven't slept a full night in months. I try to push the worries back and duct tape them to the corner with the knowledge that we will take it as it comes. Nothing is permanent. The worry is as damaging as the radioactive rays they want to bombard her with. I need to find the positive and harness it. Many would turn to prayer. Yet their God is on my shit list once again. Part of me feels that by the destruction of one of the major sources of evil in the world has again tipped the delicate balance of good and bad. I don't see why a 6 year old has to take on any bit of evil when there are puppeteers available with too much good. The balance seems entirely out of whack.

I don’t want her to have unnecessary radiation exposure, but environmentally we are bombarded with it anyhow. Yet the manmade versions frighten me so much more. I can’t explain it- I just know it to be the case. I guess it’s written in my DNA. Or mutated into it anyhow. I would really like to not deal with any of it. But it won’t go away if I bury my head in the sand- it might- but the fear of it getting worse chains me to this progression of events. I’m not ready to throw up my hands and let cancer win- nor am I willing to give it ammunition.

Lily's 6th Birthday!!

2011-03-20T11:37:00.000-07:00

We took a trip to the Big Island and celebrated Lily's 6th Birthday there. We got to see the sights, bowl a little and most of all wish Monkey 3 a very happy birthday.

Cupcakes for Class

2011-03-10T17:36:00.000-08:00

It was so much fun to make and take cupcakes to Lily's class to celebrate her 6th birthday. Since her birthday falls on Monday next week and the kids are on spring break, I didn't want her to miss out. The kids were so excited, it really is contagious. Bella seamlessly blended herself into the environment and even got to take part in a rousing game of Head's Up 7-Up. What was even funnier was watching Bella systematically put down a whole table's worth of thumbs and no one guessing it was her- despite that she was wearing her rainboots and clopping around like a Clydesdale. I love Kindergarteners and that the effect of sugar on their little systems is akin to crack. Much better to sugar them up and send them home!

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Long Term Effects Of Cancer

2011-02-24T20:24:00.000-08:00

A friend just posted a quick note about seeing a mom with a lil cancer fighter on her lap at a school event. I am not surprised by my reactions, yet they always surprise me. It was equal parts saddness, nausea and relief. I am sad that any child, any family has to go through it- it is not fair. Sad because I know how serious it is and if the disease doesn't kill them, the treatment might. I was nauseous because it's still fresh enough that I remember the stress, the day to day ups and downs and the gut wrenching emotions that you shove to the side just so you can get through. I feel a bit guilty to admit that I was relieved. Relieved that the memories that sting now are just that- memories. I actually don't think about the what if's too much. Just enough to formulate a basic survival plan- but the thoughts themselves are toxic.

When people we haven't seen in awhile run across us- the first thing they ask is - How's Lily? Lily is fine- it's the rest of us you should worry about. I see friends with their out of control children- hopped up on psychotropic meds for behavior problems. They are searching for answers in all the wrong places. I think back to a time when I had to choose the lesser of two evils- taking the chance on cancer killing her or the chemo meds and their long term effects. One drug causes deafness, the other heart deterioration, the other can cause secondary cancers, the alternative- death. Not much of a choice. Yet I know parents who have their kids on cocktails of meds because they won't sit still or listen to them. We won't mention how the protocol for treatment requires CT scans every three months and by nature of our genetic mutation- the radiation from the CT should be avoided if at all possible. Catch 22 much?

I asked the doc once about long term affects(effects?) potAto pOtato. His response in a nutshell included the pearlly wisdomous bite- not many kids with this tumor type survive long enough to gather data on the long term effects- there will probably be some. SO when you look at it all big picture-style- you come away being grateful for the imperfect package you have been given- because some people don't get a package at all and you know darn well far too many get awesome deals and don't even appreciate it.

I sit here watching Lily play Barbies- Currently Barbie is getting ready to invite Ken to her Birthday party. They will fawn over each other, they will dance and then they will kiss. Her Barbies seem to do that a lot. I started to worry. Is it hormones, should I get her checked- is she having changes? And then I thought about it- when I was 5. And 6, and 7- Barbie and Ken(which often times was substituted with a GI Joe doll or a more appropriately sized A-team type doll) I re enacted their wedding scene over and over and over. I saved for months to get Crystal Barbie. Her dress looked just like an iridescent shimmery wedding gown. They would wed- go to sleep and in the morning Barbie would have a baby. For awhile it was a mini Baby doll and then finally I procured a miniature baby out of a gumball machine. Really- how important is scale in make-believe land? The point is- she's playing normal and despite my first instinct to over react- I take a minute and realize we are on an appropriate course.

Sure she can be rambunctious. And she can be manic. And she tends toward roid rage at times. But I remember Lily was a less than happy baby with rage tendencies. Everyone else thought she was so darn cute and happy, I consider the fact that maybe it's just her personality. Yep- we called her Bi-polar baby. I admit it. But there is no way of knowing the cause. I don't even know if it's that important- if I spend less time worrying about a cause I had no control over and spend more time teaching, mentoring, and behavior modifying- the result should be a functional bipolar child. We spent all this time worrying about her being normal, acting appropriately, and fitting in when it occurs to me- all 5 year olds are Bipolar. They are ADD. They are ADHD and oppositional defiant. They talk to people no one else can see, or hear. The have intense moments of rage and/or depression over trivial items. And they totally sing off key. Lily's missing the higher frequencies of hearing- what are the other kids' excuses? By all counts- not only would they get booted from American Idol in the first round- according to the DSM IV they should all be locked up in maximum security psychiatic facilities for observation. I don't think the kids are getting crazier- I think we are.

The daily reminders of our year long vacation at cancer camp have become routine. It is more like brushing teeth now. They're about as painful too. Lily- did you put your hearing aids in? Lily ,did you hear me? PUT YOUR HEARING AIDS IN! Even the kids chime in- what are you, deaf? Everyone laughs. Especially Lily. Just like we laugh at Kiera's weird thumbs and Bella's ginormous butt and Phillip's abnormally long torso. None of these things can be helped, they are who they are and at some point in their life someone will point it out. Now they can laugh at it and move on. It's not so much about making your kids perfect- it's about helping them love their imperfections. Do I love my big butt- well not always- but I found me a man who does....and that my friends is how you deal the cards you are given.

Everyday Lily takes her meds and I have to prepare her school and our friends for emergencies. I didn't think about her playing soccer and the can of worms it opened regarding potential injury. Not only can she not wear her medic alert bracelet at the game- she might actually get hurt. Her coach works 3 jobs and coaches 2 teams- so practice has been less than consistent. Before I know it, we are to our first game and I never told anyone that she is adrenal insufficient. No one knows what it means and it's a bit of a pain to explain and when you start mentioning unconsciousness and shots- people get all wonky. I tackle the conversation with the team mom and she is very supportive. I never plan on sending Lily to a practice or game without my being there, so it's not a problem. Until her first game. Which fell on our anniversary. We are going to be on the other side of the island. I have all the ducks in a row, everything is in place. I nervously text our sitter every 5 minutes during the game. All is well- she did great- she scored 3 goals and had fun. When I get home, we watch the 13 seconds of video from the game. It's not a lot- but I rank care and keeping of the magical creatures over photographic evidence- and all were cared for very well. I notice that she skips up and down the field. I laugh- because that's Lily. La de da. I show Phil. Yeah-he says- I noticed that at practice too. I wondered if she would have any long term effects from the leg surgery- but she adapts well.

It hits me suddenly, I hadn't even thought of that. I am overcome by the familiar feeling of saddness, nausea, and relief. I hadn't attributed the skipping to her leg surgery. I just figured it was her. Maybe it is.

Permission from Death

2011-01-12T10:50:00.000-08:00

Stop looking, stop worrying. If it is death you fear, fear no more. I found it, I should say him. He who gives permission to die. Many of you may be familiar with the shootings in Arizona where Congresswoman Giffords was shot with many others. Of the 6 that died and 14 others that were wounded- I wonder if their families' will seek solace in the fact that the man who controls death is near. Dr. Rhee, a former Navy surgeon declared that Giffords has a "101% chance" at survival and that "she will not die. She does not have that permission from me." I do so love me a surgeon with a complex. I remember one from the Columbine shootings all too well. Appearances on the news and programs like Oprah only serve to exacerbate the egomaniacal tendencies. Although I am not the authority on surgeons, I have had quite a bit of experience with them- the good and the bad. Either this man has my sense of humor, which is entirely possible- or he has a God complex- which is entirely probable. Either way- I was compelled to put my 2 cents in......here's the article that piqued my interest followed by the actual email I sent.

http://www.tucsonsentinel.com/local/report/011111_giffords_breathing

Dr. Rhee,

I recently read your much publicized quotes regarding Mrs. Gifford’s status as having “101 percent chance of survival” and that she doesn’t “have permission from you” to die. I hope these comments were taken out of context, as they often are- and perhaps you have a bit of a sense of humor in dealing with the media. If that is the case, read no further and continue your important life saving work . If she has a 101 percent chance of survival- you either are making a joke of the gamble in “predicting” survival or are cockier than a spaniel in heat. I also seek to introduce myself to you as I have a genetic condition that predisposed me to many cancers and an early death and if death requires permission from you- I would definitely like to be in your acquaintance.

I remember the case of a certain retired Army surgeon who treated gallantly many of the Columbine victims. I have great respect for both soldiers and surgeons alike. To be both is awe inspiring. I also personally watched the downfall of that surgeon who thought himself bigger than life. He thought he could do no wrong and would be beyond reproach. Although a fine officer at the time and a very brilliant surgeon once- he now holds no medical license and is hard pressed to find someone to either insure or hire him in any capacity. I urge you to temper your brilliance with a little care, as no man is immune from downfall, or death.

Regards,

Jennifer Mallory

12 Days of Sickness

2010-12-01T11:19:00.000-08:00

On the First Day of Sickness, my Kiera said to me- I don't feel well as she shared her food and drink with the other three. So day by day the sickness progresses and my defenses fail. Phil laughed as I made him do shots of airborne with me at Thanksgiving- not the livin it up mommy-style he was hoping for! I think the orange airborne is slightly less offensive- but the reaction is always the same- mmm orange(or berry, or lemon) not too bad- gaaaaaag. So far I am ignoring the tickle in my throat and the headaches. SO in honor of my little germ factories.....

The 12 Days of Sickness

12 Coughs per minute
11 Loads of Laundry
10 Throat Losenges
9    Needs Needed
8    Eyes a watering
7    Sighs of exhaustion
6    Tablets of airborne
5    Cold n coughs
4    Kids whining
3    Hours of sleep
2    Days out of school
1    Tired mommy

Lily's First Field Trip

2010-11-23T22:29:00.000-08:00

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The Ties that Bind- Scissors anyone? anyone?

2010-11-06T14:02:00.000-07:00

The difference between friends and family is that you get to choose your friends. It's not until the we embark on this fun little journey called marriage that we get to choose our family. Even then, sometimes you take the good, you take the bad, you take them both and there you have....the facts of life. We have been in the military world for over 12 years and along the way have met many a friend we now label family. They are fortunate enough to not have to share in all our crazy genetic afflictions but are common soldiers in the many social ones we face. Thrown together by chance, staying together by choice. Friends you would drive over 2 state lines(albeit close states lines which technically lead out of one state and back into the other) just for a hug. Family drives 5 hours to give you a hug and then 2 hours to take you over 2 state lines so you can pay it forward. Ah the ties that bind.

When Lily was going through treatment we were very lucky to have a solid support network despite being across an ocean from any family. Our ohana here became friends and neighbors touched by one tough little monkey and the injustice of it all. Family across the ocean did what they could, which was usually sending gifts. I blogged to keep people informed and for my own therapy. Sometimes I worked through and issue by the end of a post, sometimes I just merely realized there was no resolution. You really learn a lot about other people's character when you are facing the toughest times in your life. There are those who try to make it about them and those who would never hint that they had anything but mundane going on in their life so you wouldn't have to worry about one more thing. The Li Fraumeni Syndrome conference was a great opportunity to reaffirm I am not alone. More than one person shared my sentiments. There are Givers and there are Takers. Both have had something valuable wrenched from them- yet the true character trait emerges in how they choose to act from there. You find those who never had support and never want anyone else to have to know that feeling and you have those who can't get past that they never had support. They stall in the crisis, unable to evolve.

We all have these moments every day. Some moments are bigger than others, but each one is the glue that holds our true character together. Whether the glue holds or not is up to our choices. We have choices every day. What to eat, what to wear, how to act. These choices affect what we look like, how we feel, who we relate to. When things don't pan out exactly as planned- how we react and how we react to others' reactions also tells a lot about us. Sometimes we make mistakes. Sometimes we make sacrifices. But mostly we make choices. Sacrifices and choices have gotten confused. I hear people talk a lot these days about all the sacrifices they make. The definition and use of the word sacrifice has been so watered down- it is so clear you no longer see the choice in it- but it is there. A sacrifice is

4 dictionary results on dictionary.com

sac·ri·fice /ˈsækrəˌfaɪs/
[sak-ruh-fahys]

noun, verb, -ficed, -fic·ing.

–noun

1. the offering of animal, plant, or human life or of some material possession to a deity, as in propitiation or homage.

2. the person, animal, or thing so offered.

3. the surrender or destruction of something prized or desirable for the sake of something considered as having a higher or more pressing claim.

4. the thing so surrendered or devoted.

5. a loss incurred in selling something below its value.

6. Also called sacrifice bunt, sacrifice hit . Baseball . a bunt made when there are fewer than two players out, not resulting in a double play, that advances the base runner nearest home without an error being committed if there is an attempt to put the runner out, and that results in either the batter's being put out at first base, reaching first on an error made in the attempt for the put-out, or being safe because of an attempt to put out another runner.

Oh, I see why there is confusion- it ranges anyewhere from the offering of a life to the gods to a baseball play. But my point is this, although all sacrifices are choices, all choices are not sacrifices. To make a choice that benefits you to the harm of someone else is not a sacrifice. It just means you are self centered. A person makes a sacrifice by working 3 jobs so that their children can have a decent education. They are sacrificing time with their children and at home for the betterment of their children's future. A sacrifice is not working 3 jobs so you can drive your kid to school in a mazerati. That is a choice.

When Phil made the transition to the Guard, we made a choice. In that choice, time with our extended families was sacrificed to having him home more than he would be in the active duty world. It was the right choice for us, although I'm pretty sure my mom would disagree. I started the blog for her. I started because there weren't enough hours in the day to chat on the phone and she so desperately wanted to see all of our day to day trials and tribulations. Apparently that sh@! is entertaining from the grandparent perspective. I get that, especially getting to see family and friends going through the changes of having a new baby at home. It seems like that was forever ago.

When Lily went through treatment, the blog became a lifeline to our families and friends. I didn't have to make 50 calls, I just posted a quick update. When we were dealing with the effects of chemo and couldn't find the pull-ups that held the most- boxes of them showed up on our doorstep. When her hair began falling out, hats from as far as Iraq were delivered- specially embroidered with her name and Pooh Bear. A friend ran a book drive and a stack of books taller than Lily herself became a library of quiet entertainment for those icky days relegated to the couch. Neighbors helped shield the other kids from day to day craziness and long hospitalizations. We learned who our true friends were and became forever endebted.

There were friends who didn't get the memo and felt that day to day trivial "crises" were things I needed to know. And there were quite a few we never heard from at all. It is always better to hear- we are thinking of you than nothing at all. I would be lying if I didn't say how people acted during this time did not color how I react to them today. I am aware that my perceptions at the time were severely stressed, but also pretty close to dead on. When you are ultimately stressed the triaging of unnecessary occurs and that includes relationships. I realize that I am not innocent, that I have not been in contact with many of my good friends as often as I should be. But I also know that my true friends understand and either make the effort when they can or accept my effort when it is offered.

I have also learned that life is too short and too precious to harbor certain feelings. Oh if it were only easier said than done. So it is in these times that I choose to eliminate certain relationships from my day to day life- for they were really never part of it. There are growing pains involved but I do know that for every closed door there is always an opened window and that window may be on the side of the house with a delightful breeze. The true irony also lies in that as I stand here with a pair of scissors those whose ties were severed will never truly know because they cannot see past themselves to feel the tie that could have been.

Mutants Unite- Li Fraumeni Syndrome Conference

2010-11-04T03:09:00.001-07:00

My feelings on the LFS Conference

The excitement electrified the air. People were telling jokes, laughing and filled with the expectation of finally finding answers to questions they had been waiting to hear. Some had been waiting months, from the time they announced the conference, others had waited years, from the time of diagnosis, and a very few of us had been waiting decades to learn that there was a light at the end of the proverbial cancer tunnel. It was our turn- the Last Families Standing. Some had scars they would show off like badges from a hard fought battle that ended in a draw. All had emotional wounds masked by laughter or anger. The division was clear. There were 2 sides to the auditorium as there were 2 very divisive groups brought together by Li Fraumeni Syndrome.

I was disappointed that I was so late getting into town that I missed the meet and greet dinner. Finally, for the first time ever, families who have this rare hereditary mutation were together to share their stories, their experiences and information that had been garnered by years of living, dying and fighting this cancerous monster. As I checked into the hotel, I noticed two separate tables of people in the bar. One sat heatedly discussing battles, throwing around words like cells, treatment, answers, protocol. The other was laughing like a group of old friends, comparing scars and number of cancers survived. These were my people. United by mutation, loss and fear. Surviving through determination, strength and humor. For years I tried to find other families with this mutation. Any others. I asked about support groups, I asked about contact lists. There were too many privacy issues. It’s not something you can stand on a street corner with a sign and get answers about. It’s too rare. There are an estimated 40 families in the US. Based on the fact that each family got 2 representatives- there were 70 family members at dinner- that’s about right. All of the people present were somehow connected through these few institutes represented at the conference- there are others out there. They should have been there. But it was a start. You can’t be too picky when you are starving and you get thrown a bone, there might be some marrow you can suck out of it. And that’s what we are expected to do.

I glance at the room filled with fellow mutants and I recognized a face from the Facebook LFS group, a fellow military mom in this fight. I walked over and introduced myself. We had corresponded many times over the past few months regarding screening protocols for kids, travel arrangements for the area and general health. She’s recovering from her fourth cancer. And amidst her struggles, she does what we all do- she takes the punches all the while trying to protect her children. That’s why we all are there. We are trying to protect the ones we love as we watch each one in turn fight the battle against the cellular monsters trying to invade us. Who will try to beat us down before they kill us. It takes the ones we love and leaves us alone to ponder the meaning or possible purpose for it all. They dangled the proverbial carrot in front of us with key words like current research developments and family support. We responded with enthusiasm.

Chit Chat turned to hours and we got the summary of the dinner we missed. It was heated, sheets of concerns and hopes were written and taken to conference organizers. I was flanked by my aunt and cousin, both also looking for a ray of hope. We all laugh as common jokes surface, a dark humor unique to those faced with the repeated blackness of invasive procedures and debilitating illnesses. We learn the groups split off after dinner, some driven by anger- demanding answers- demanding action some driven to be near other who share the common journey. The stories are all familiar, yet the names and types of cancers vary. Children taken before they are old enough to understand, parents lost, siblings scarred, spouses traumatized. Yet we find a reason to laugh, because our lives have been filled with so much pain and sadness- it’s the only way out.

The NIH is like a compound. Security is tight. One body cavity search shy of airport security. We manage to make it through without any major catastrophe despite my aunt yielding a particularly fierce looking set of tweezers. We find our way to the conference hall and settle in for the day. It’s a full house. The room has stadium style seating and a divider down the middle. We cluster in groups of new friends we met the night before. We each are given a binder of information and I quickly scan it. With the exception of a couple papers on recent studies, there is no new information. It is pretty basic stuff. I am mostly just enjoying the idea of it, I know it is a baby step process. What happens today could be the beginning of something great for us. The Introduction is given by Joseph Fraumeni himself. And so it begins. The conference starts with a bang. Three family members are introduced to speak on patient/family perspectives of the disease. The representatives are well chosen- each tells a story that rings true to every family member in the audience. There are tears, there are nods of understanding and there is applause for the strength it takes to get up there and bear your soul for all to see. A father who lost a child and has another facing multiple cancers pleas for answers and demands a cure. A mother eloquently takes us through decades of monsterous loss and heartache- questions unanswered and hope that someday this will not be the case. A husband who lost a wife too soon and still faces the after effects of the disease with his three children. We know the stories. We are the stories. Each one of us bears these heartaches and more. This is why we are here. We are finally being heard.

But then the focus shifts to the clinical aspects of the disease. Most of the information shared is common knowledge among the families. Most of us at one point or another have enlightened a physician with this knowledge. The day is already going fast and the speakers are rushing to cover all of their information. I am grateful for the binder of notes, yet I have filled up pages of my own- just so I don’t forget. We now are hearing from representatives from other countries and how they screen for LFS cancers. Each country has slightly different protocol. I begin to think it would have been better for all the clinicians to have met first. Some of the information is redundant, and there is never enough time for questions. I am very interested in the data from Brazil. There is a higher than “normal” incidence of LFS in a small community there. I already knew this because when Lily was diagnosed with Adrenocortical Carcinoma, I contacted a leading researcher on the disease- Dr. Ribeiro. He had extensive experience with treating this rare cancer because they found a hot spot in Brazil with over a hundred cases. And I sat there wondering- why? Why this community? Is it the water? Is there a radioactive source nearby? What? Wouldn’t that be a fabulous place to research and find answers? It led to the discovery of a unique mutation related to the p53 mutation and that was the first new piece of information we had received and it was almost noon. My stomach rumbled. The guy next to me continuously played on his phone and didn’t even bother to turn the incessant beep off. I wondered why he was even there. Imagine my surprise when he walked down to the front to speak. He was a researcher- appealing for funds. Yet he provided no new information. The subject he talked on was the psychosocial implications of testing and screening children and teens. If you have been on the LFS circuit you know this is one of THE push button topics. There are people out there who have said it is flat out irresponsible to reproduce with this mutation and I tend to disagree. There are quite a few people out there who are not equipped to meet the normal demands of parenting and so being presented with a child with cancer, multiple cancers or a child’s death is not at all feasible. But it is reality. There are millions of children out there without LFS who get cancer. Ask any 30-40 year old who has yet to get cancer in one of these families and we’ll tell you it sucks- but I am glad to be here. I am glad my children are here and I know that if I don’t make an impact in the LFS world- they will. I know that others have different feelings and that is Ok. I also learned that having a background in genetics and biology helps me to look at this syndrome in a more practical light and most people do not understand the intricacies of genomics,heredity, tumor suppression or biological pathways. It is not as simple as find the gene, fix it and you are cured. Reasearch takes decades. We can only hope that our children’s grandchildren will be so lucky as to have better treatments- I do not think they will see a cure either. I hope I am wrong. But needless to say, the mere glossing over of a MAJOR topic with over generalizations and suggestions to “do what feels right” did not leave me with any warm fuzzies. Perhaps I was hungry. Perhaps the lady 2 seats down crunching away on her second bag of cornnuts was grating on my last nerve. But I felt the important topics were being neglected. I hoped the after lunch speakers would provide some of the direction I was looking for. Latest and Future Research were on the docket as well as splitting off into groups for Support and Advocacy.

Lunch came and went. Even that was rushed to get to the next group of speakers. I and quite a few others had supplies of caffeine for the topic of research. Important, vital, imperative research- but daunting and very difficult to comprehend even for those of us with education in the field. There have been some good advances made. But mostly I learned that there is so much yet to still learn about p53 and it’s role in all this. The implications are there are quite a few other factors that researchers haven’t uncovered yet that come into play. It’s tough to hear. And really that’s why we are there- to put faces to the work. Our presence emphasizes that the research day in and day out is important for our quality of life. The day is rapidly coming to a close and I don’t feel like I have yet found my A-ha moment in the mix. We are split into groups- Families and researchers. We begin our secular discussion. I look at the topics and speakers. With the exception of John Berkley(who moderates the MDJunction Forum(www.MDJunction.com- Li Fraumeni Syndrome) there is no actual talk of support or advocacy. There are Advocates for other groups there, but even the Genetic Counselors are not present. How can there be support or advocacy without those trained in this field- those with experience dealing with the complex emotions and trauma that lives filled with multiple cancers and deaths often occurring concurrently? I then realize that they ARE there. That WE are the best support and advocacy for our group. The primary agenda that is given to us is to set up a Patient Organization. It is within the first 10 minutes here that I have my true A ha moment. We are not here so they can help US. WE are there to help THEM. This does not sit well with me. I notice several people leave. I almost wish I had the excuse of a flight to catch so that I could bail and what now feels like a time share set up. The 3 speakers talk exclusively about the technical aspects of setting up a non-profit organization in order to raise funds for research. 2 of the patient “speakers” from earlier are rallying for blood samples to get off to the sample bank for research. That is the first step they say- that is the first step towards a cure. Well if that is all that was wanted- The NIH could have saved themselves thousands of dollars spent by gathering us there and just sent out a letter requesting samples. We would have all given them. We all want answers. We are the best resource and we know it. Giving even 12 vials of blood is minimally invasive or inconvenient compared to the indignities we all suffer in the name of preventative medicine. I wanted more. I wanted someone to say- we hear your stories, we know this has been awful and you have scars to show for it- we are here to help you. Instead we get- here are board of directors members who can tell you how to raise money for our research. Yes prevail upon the people who have lost so much time and money already to this nasty disease. Many of whom may not be here next year this time, THAT is the nature of this Syndrome. I want to help. I am happy to help, but when I said we were looking for support and advocacy I was kinda thinking let’s set up a formal website with all the information and contacts in one place. A place that offers us a chance to connect with others who are also soldiers in this battle. That was the single most important benefit to this conference for us family members. The absolute best part was finally being surrounded by others who know what it is like to lose a family member to cancer, and then another, and then another and then another. Being surrounded by others who feel the impossible weight of possibly being the last of their family line. There was no offer for counseling. No offer for support. Just insurance companies lining the halls to hand out information when we were on breaks. AM I the only one who finds that utterly ironic? Of course there was the odd joke and conspiracy theorist who pointed out we were all being photographed and to be careful drinking the water- but it didn’t seem so out of line as the last meeting of the day.

I don’t like politics. I don’t like pretenses. If dealing with Li Fraumeni Syndrome has taught me anything- it is that Life is too damn short for bullshit. There is a HUGE need for more research on Li Fraumeni Syndrome. Despite the “rareness” of this syndrome and the “few” numbers that it affects- we are THE key to understanding why all cancers exist and what can be done to stop them. We want to help, we will help raise money- it is a very important cause and I am all for it. DO NOT BULLSHIT me. Do not draw me in under the pretense of family support and advocacy- fundraising for research does NOT fall under that umbrella. They are 2 very distinct things. Family support is aid, whether it be emotional, physical, educational or financial. Putting us all in the same room is a start- but you had resources at your disposal to help us, yet the motivation was money. It is a two way street. We are happy to help raise money for your research, but what do we get in return? My daughter has one of the most common tumors in Li Fraumeni Syndrome. It is also one of the tumors with THE worst prognosis. There is a village in Brazil packed with these tumors and people with LFS. This town was discovered over 20 years ago and there is no cure there yet. P53 was discovered over 40 years ago and we still don’t know how its exact role in Li Fraumeni Syndrome plays out. There are too many cancers to effectively recommend a single screening protocol that is both reasonable and successful without severely impacting our already shortened quality of life in a negative way.

I know time and funds are limited. I would have liked to see more quality of life discussion and interface between counselors and families. Most of us just want to be heard and understood. The biggest benefit was meeting and exchanging contact info with other LFS families. I hope that through these connections the true support and advocacy will be found that we all were looking for and when those needs are met- we will be in a healthier state to help raise money to find a cure for this fun filled not at all life altering hereditary syndrome.

The worms crawl in, the worms crawl out, the worms play penochle.....

2010-10-25T16:46:00.000-07:00

Everything we need to know can be found in nursery rhymes. A week ago, after checking a few concerned emails- it occurred to me I never posted on Lily's health status. Insert hysterical laughter. Make that maniacal. Nope scratch that- sleep deprivation is messing with my mind. And don't scratch that- go wash your hands.

Lily's scans were fine. Nothing to report, everything consistent. The spot matches a bug bite and they will check it out again next round. I called last week to double check because Lily has been experiencing some itchiness and some other symptoms and I wanted to rule out major issues before we try and tackle little ones.
***Warning***Graphic stuff ahead. Not for the squeamish or OCD.

SO the itchiness comes and goes. I thought it was yeast. It's not yeast. The itchiness seems to always be the worst in the evening. Bella's been waking up too. I thought it was because Phil is gone. Something keeps waking her up consistently. Oh nooooo. This whole act is familiar. Somewhere around the inception of this blog we had an episode with worms. No, no, no, no no. Flash back to Port a Potty incident at air show. Somebody put a fork in me. Now. Please. My bum starts itching just thinking about it. I grab a flashlight and sneak up to the girls' bedroom late Friday night. When I said parenting was messy- did I mention the whole bit about pin worms? No need to teach anything else in sex ed- just provide all information about these bad boys and that they Looooooooove preschoolers and Kindergarteners because this group of thumbsucking, orally fixated little germ factories also suck at washing their hands properly. Be sure to highlight the part about how they like to leave the warm cozy nest of the human's small intestine at night to lay their eggs around Uranus. So the poor little thumbsucker itches away in their sleep then sticks their hand back up in their mouth. Life cycle propagated.

Sometimes if you are real quiet , you can sneak up on them commando style. And you will actually be surprised that this particular set of night ops doesn't even wake the natives. It's a bit of a balancing act, holding the flashlight in the crook of your neck to get proper separation. Quite comical- one of those times having a spouse around would be beneficial. And I spot the lil bugger running for the hills. Oh crap I'm gonna be sick. I might take the time to be sick if I run out of bleach before morning. I check Bella too- that's another affirmative. I don't know whether to scream or cry. Somehow this is a commentary on my parenting, my hygiene, and everything about me. I could give a care less that this is described as the most common parasite in the world and estimates go as high as 75% of children having them. I don't care that after our first bout of them( when I vowed to never let a handwashing go unnoticed) that one of my good friends - who also happens to be one of the cleanest humans ever- told me she knew all about them and how to look for them. what? They are completely disgusting, but pretty common I was told. Multiple websites describe them as a nuisance and that the most damage occurs in the mind of the parent. You can say that again. I have distinct memories as a child, peering into my best friend's poo to get a glimpse of the souveneir she brought home from the zoo. There is something completely and absolutely unnerving about something living in your rear. It's wrong. It's even more unnerving to have physical proof that these little buggers are alive and well in my children. I debate just up and moving. I think buying all new personal effects is probably easier than dealing with the trauma of fighting an enemy you can't see- those blasted little eggs. My bum itches just thinking about it.

I spend the entire night wiping down every surface in the house with bleach or lysol. I am dizzy as the 3rd bottle of lysol runs out. I start laundry in the hottest temperature possible and switch the dryer heat to highest. I know that the only thing known to kill the eggs are UV and heat. I throw stuffed animals and area rugs outside. Everytime I pass a sink, I scrub my hands. They are starting to burn. By 2 am I am literally running on fumes. I decide to try and get a couple hours of sleep. I know we will be up well before the clinic opens at 6am. At 4 a car alarm goes off- I vaguely recollect thinking it sounded like my car and hope the thieves get their come uppance with a nice case of thread worms. I don't remember this thought until morning as I am loading the girls into the car- which was still there. It then occurs to me that I have a whole nother realm to disinfect- the car. Where are thieves when you need them?

I was up at 5 stripping my bed and showering. The girls peek in to see where we are going- I quickly steal the sheets off their beds. I hosed their room down with lysol the night before and wiped surfaces- but now that I pulled the sheets up- I feel the need to do it again. I know the lysol won't kill the eggs- but it makes me feel like I am doing something. Like scrubbing every reachable surface in a house isn't considered "doing" something. I am not good with sleep deprivation or parasites as it turns out. It is late morning where my husband lives and I call to tell him what's up. He is relieved. He thought something was wrong. Oh something is wrong- very very wrong. He backtracks and explains this is easy- it's curable. Easy? Easy!!??? My back is spasming, my stomach is in knots. I have a cough- which I'm sure is from huffing lysol or from parasites who are too stupid to find their way to my a@! and got lost in my lungs. I wonder how 1 person can be expected to launder 5 sets of bedding plus towels, clothes, blankets, etc- daily as well as continuously monitor 4 sets of bums and hands while decontaminating every surface they touch for the next week in addition to all my other daily jobs. Mind you each time they go to school - I have no control over where they stick their hands. I'll trade you your 2 social dinners and afternoons of football for my weekend.

We get to the clinic behind a young man who apparently fell and split his chin open. I wait for the desk clerk to act disgusted as I tell him why we are there. He nicely informs me that he will check everyone in so everyone can be treated. I wish I didn't know the procedure to this. Not how I wanted to spend my Saturday. The doc is nice and despite his reassurances that I am not a failure at parenting, hygiene, and life- I feel disgusting. He continues to tell me that this really is common. Especially in the girls' age group. We probably won't need a second dose- but check in a week or 2 for evidence of new hatchlings. Awesome.

I stop by walmart to get industrial sizes of bleach, paper towels, soap, disinfectants and of course more lysol. I brief the children on the operating procedures for the next week- at a minimum. I hand out meds. We shower in the morning. This washes away any eggs laid at night. Towels go directly in the hamper. ALL dirty clothes are put in hampers. Undressing only happens in the bathrooms. Any time you itch anything- wash your hands. Every time you go to the bathroom- wash your hands. Before you eat- wash your hands. When in doubt- wash your hands. Only use paper towels for now. Notify me immediately after BM's so that I can disinfect the bathroom. Sheets will be washed daily- do not fluff them. No one wears skirts. Or night gowns. Shorts and underwear are worn at all times. Bella makes a point by immediately pulling her shirt off. She smiles a goofy smile as I glare down upon her. I know she is suspect #1. I know she will be my biggest challenge in this ordeal. I begin round 2 of disinfecting and continue to tackle the mountain of laundry. I don't even want to think about our water or electric bill this month. This is a recycling/conservation nightmare. I read about homeopathic cures. Apparently garlic works- I put 5 cloves in dinner. Unfortunately it is supposed to be used as a suppository. Um no. I'd love to hear Lily explaining THAT one to her teacher. A night in police custody is kinda sounding like a vacation right now. I'll stick with the traditional methods. The girls are outside roasting marshmallows on sticks over an invisible campfire they set up on my living room rug. I want to throw buckets of bleach at them, but realize that would be wrong. It would totally stain the rug.

Love Bites

2010-10-09T13:35:00.000-07:00

I'd have to say I've been dreading the scans for awhile. Well over a month. Probably close to 3 months. It was right after we finished her last scan, of which I thought we wouldn't have to do again for 6 months- and her doc kindly corrected my thinking by saying- oh no no no- we need to scan every 3 months for a full year following chemo. yaaaaayyyy. Oh well- it's just another year. It's really only 4 scans. And 4 sedations. And 4 days spent at the hospital. Well 8 if you count having to come in for the pre-sedation physical and the follow up. But it will get better and that was my line of thinking right up until I saw the radiologist with 2 students in tow- buzz on into the MRI suite. Crap.

It was an early morning, 0530 out the door to get to the hospital. As much as my stomach disagrees with the stress, I realize that in a few hours it will be over. Lily talks nonstop in the car about this and that- she is either as nervous as I am or sensing my nerves. She's got her grandfather's personality- she talks a mile a minute when she's nervous. I am just thinking how much I miss him when traffic stops. I sigh and survey the cars around me. To the left, the windows are too dark to see, I assume they are picking their nose. To the right is a woman talking on the phone. I metally lecture her on the safety issues. Front right is a truck with something hanging out the cab. I am grateful it isn't a person like I often see here. I recognize the shape. It's a yellow floor buffer. I smile- it's a sign. I would often accompany my dad to work on Saturdays in Toledo and then on business calls around Colorado, I knew the machine. It's not something you usually see in the back of a truck and for some reason here it was. Call it coincidence, I feel the warmth almost like a hug. Sometimes it's a rainbow, sometimes a butterfly- sometimes an industrial floor care machine that reminds you that there's something greater to the plan and to ride it out.

One of the enormous benefits to arriving at the hospital at this hour is the abundance of parking. Three days ago I wasted 40 minutes of my life waiting for parking. I thought about calculating how much time I've spent waiting for a parking spot at the hospital, but realized it would be too depressing, so I didn't. I just try to leave extra time and plan on visiting with our nurse friends if by some rare grace we find a spot in under 30 minutes. I could waste more time being angry about it, or I could adjust and find a way to make it work. I spent the time filling out a comment card online about the insufficiency of parking and for question 7. No. No it definitely NOT meet my needs in a timely fashion.

I get Lily checked in and it occurs to her that she has to get a poke and she no longer has a port. She was familiar with that routine, this is new- different. She does not do well with different. I start preparing her for how it will go down, incorporating some of the techniques I saw Miss Julie use time and time again in our early days of chemo. I don't promise that it won't hurt, I know it probably will- even with the numbing cream. I can promise that it will be quick. The anesthesiologist asks if I would prefer to dart her. No, but I would like to take some of those home with me. This is something she is going to have to do, the less additional chemicals we pump into her and the quicker she learns it's part of her norm, the better. She asks if it would help to call the child life specialist down, of course. Miss Wendy is paged. We play in the playroom while the numbing cream works. Pretty soon they are calling us over to put the IV in. She is chanting - I don't want to do this, I don't want to do this. The nurse is trying to distract her and they are looking at a picture she drew in the playroom. She sees the needle come out and her eyes get big, as if on cue- Miss Wendy walks in. Lily is distracted by the greeting and her nurse takes the opportunity to poke her. She yells at him and 2 little tears escape. I ask if it hurts right now and she pauses. NO, but it really really really hurt when he poked me. I know- but it doesn't hurt now, it was a quick hurt- now you will be ok. She nods. Within minutes she is out cold and we walk down to radiology. I give the anesthesiologist my number and ask the MRI tech which scans they are doing and how long to expect. They are doing full body , brain and abdomen... it's gonna be 2 hours. We just did brain. I wonder why they are repeating it this time. Well, she's sedated anyhow, better safe than sorry. The anesthesiologist asks if I had breakfast. Ah, my cue to go.

This is the worst part. Knowing that in the next 2 hours we will be relieved or crushed. I need to get hearing aid batteries and a flu shot. No time like the present. I go upstairs, grab the batteries and wander over to immunizations. It's a mass vaccination day. There's a line. Just my luck. Oh well, at least they will have plenty of vaccine and it's 0830 so they won't be rationing yet. Or so I think. Two doctors ahead of me are discussing the benefits of shot v mist. Everyone I've talked to says they feel crappy after the mist. I generally don't like the flu vaccine anyhow, but when Lily was in treatment- her nurse pretty much told me I needed it and went and got it for me. That kinda changed my view. I figure with Phil being gone- I should try and avoid the flu if possible. The doctors are doing the usual bantering pros and cons of each. I have already decided on the shot. The tech informs me that unless someone in my house is immunocompromised- um duh- I have to get the mist. I knew I should have checked those boxes dishonestly. I explain our situation and they say unless she had a bone marrow translpant or organ transplant I am stuck with the mist. Really? Yeah you can blow it out right away if you want. Just a little will do the trick. Seriously? Does anyone else see how ridiculous this is? Yes, but we have a shortage of shots. You are having a mass innoculation and didn't plan on having enough supply? She starts in on how vaccinations are made- I put my hand up- spare me. Mist is better than flu- I guess. If I could get a damn signal I would be filling out a customer satisfaction survey right now. Looking back I should have demanded an ice card and pen and filled it out right there with mist dripping out my nose. Part of me realized it was the stress of the day tempering my attitude. The tech squirts the mist in my nose and I feel it running right back out. Did it get into your throat? Um yeah, sure. I can give you more. Um No thanks. I wipe away the trickle and she goes for the other nostril- I don't even bother tilting my head. I leave and head right for the bathroom and blow the offending nonsense out. I wonder at the efficacy of any of this.

By the time I get to the shoppette I feel dizzy, flush and completely woozy. Apparently a little totally does the trick. Maybe I'm just hungry. I grab a book, fruit plate, tea with vitamins and a bottle of multi vites just for good measure. I need air- I pay and go outside. The sun feels better. I chug two vitamins with the tea. Now I won't know if the stomach upset is flu, vitamins or stress. I look at the time- all of my errands took less than a half an hour. An hour an a half to kill. I don't like being far from the scan so I absorb a little vitamin D and go back to the bowels of the pink castle of despair. I read for awhile. Watch 4 other MRI patients come and go. I feel like one of those movies that they time lapse waiting with people traversing by. Two guys talk football and blowing various joints out and I glance at the tv. No wonder they are not watching it- it's an infomercial on the ugliest looking full coverage bra I have ever seen. I go back to the book. Then a familiar face rushes through with 2 students in tow. Dr. Rooks. The pediatric radiologist. She is a wonderfully nice, smart woman- my experiences with her have been bad. From bad pancreas to adrenal tumors- if you see her- it's not a good omen. Maybe she's just reviewing the scan before they call it quits- they do that- it's also a good teaching opportunity and she has two students in tow. But tumors are also good teaching opportunities. Damn. Damn. Damn Damn. I try to read but realize I am just looking at the words while I wonder the best way to lie to my husband that everything is fine. Since I can't lie to him, I am actually just trying to lie to myself for awhile. I feel like my bad feeling is justified, but I wanted to be wrong. I am a worry wort. The anesthesiologist pops her perky red noggin through the window- we are going to rescan her leg- it'll be a bit longer. I look at the time- it has been 2 and a half hours already. Here we go.

A little while later they roll the gurney out of the room and we are off to CT. We pass a gurney with a woman who is unconscious, her husband obviously worried. We exchange sympathetic smiles. I settle into an unoccupied row of seats and I watch two kids color quietly without supervision. I am impressed by their behavior. My kids would be having a WWF event between the rows of seats or trying to turn it into a track and field event. Their dad returns, it's the man I passed earlier. Sometimes even kids know when something is wrong and just shut up and color. I say a silent prayer for them and Lily is done. In the elevator I pick their brains. I know they know what's going on. I am told there was a spot in question on her leg, it probably is just a bruise. We look at her leg. There is a small bug bite she scratched open. surely the MRI wouldn't pick it up? They are very sensitive she says.

It's almost noon. Lily is snoring away. I would rather her sleep for a lil while after sedation than cry, but I feel gross. Darn Flu mist. If I get sick I'm dropping my kids off with that tech in immunizations and finding the nearest treatment room to occupy. Lily starts to cry. She has to pee. I lift the covers, it appears that she already has. We get a bed pan and she is screaming how big girls go on the toilet. She lapses in an out of consciousness and fotunately her body takes over when she is asleep- unfortunately her brain doesn't get the memo and she screams everytime she wakes up that she will only go on the toilet. I have a bed pan that proves otherwise- but I know that under NO circumstances will I win this arguement. I let her cry and soothe her the best I can. This goes on for an hour. She buries her head under the sheet and pushes Pooh away. It's not Pooh's first scan, his feeling aren't hurt.

Finally she has a popsicle and we convince her she can stand so we can go home. The nurse brings her a pair of hospital pants. I laugh. She begins telling him all about how she will NOT wear those pants. She decides she still has to go to the bathroom. We take her, the nurse waits patiently outside while Lily berates me on multiple levels. She does not have to pee. We stay there for a half an hour. My head is throbbing and my throat hurts. I cough and wash my hands for the 85th time this trip. She finally decides she is done trying. I hand her toilet paper which she throws at me and yells that she DID NOT pee. Awesome. So I look at her in her little green eyes and tell her I don't care how brave she is and what medicines she's on and how icky she feels there is no excuse for being rude. She hugs my leg and says sorry mommy, I just want to go home. Then let's go. The nurse has the paperwork ready to sign and says to follow up with her doctor. You betcha. We are out.

We miss her doctor by five minutes. Which buys us a trip back in on Friday. I am almost grateful for the flu mist because I feel so icky thursday night , the only option is to sleep. I take her in Friday and her doctor examines her. He starts grinning and tells me this was exactly what he was hoping to see- the bug bite is right where the spot on the scan was. The redness matches the margins. We'll check it again on her next scan to be careful, but he isn't worried. I wish I could say the same. I ask him if scans can be THAT sensitive? He says yes, and sometimes thats the problem. But try not to worry. He is a dad so he knows that's easier said than done. We sign up for the Halloween party and say our goodbyes. I text Phil to let him know the good news. I try to enjoy the good news and not start to worry about the next round.

Adrenal Insufficiency in Kids

2010-10-05T11:58:00.000-07:00

Lily has Adrenal Insufficiency. Fancy words for her adrenal glands don't work right. Some kids are born with the condition. Two years ago I was hoping for that diagnosis. Congenital Adrenal Hyperplasia, Addison's, Cushing's Syndrome-anything but a tumor. She now has no tumor, but no adrenal glands either. One was taken out, one was killed off by mitotane- a nasty little insecticide that they found helped dogs with adrenal problems- which for some reason is fairly common. Give it to kids, call it chemotherapy- but when it comes right down to it- toxic is toxic. When I started researching mitotane- I found all kinds of veterinary info on it.

We weren't prepared for the adrenal crises. Nights of throwing up, fevers, stomach pains. During chemo- you just attribute it to the nasty toxic side effects of the drugs. The doctors were very upfront with us- These drugs will cause nasty side effects- at times it will seem like we are doing more harm than good- but this is the best way available right now. The side effects were almost immediate. But we had no idea if it was the chem or the lack of adrenal gland- only one was taken out surgically- so looking back- the sicker she got , the better evidence of the mitotane doing it's job.

We weren't thinking ahead to what this meant for the future, because we just wanted Lily to have a future. Those are the tough decisions you make as a parent. Sometimes you don't understand other parent's decisions- but if you are a parent- you definitely understand how and why they got there. Your heart plays funny tricks on your mind. Watching your baby struggle is painful, even when your mind tells you it is necessary. Yesterday I took Lily in for her presedation physical and since we were there- stopped in to get Bella a flu shot. The older kids will get them at school. A mother with a 4 month old was in tears because her child just had to have immunizations and he cried. Welcome to the world. There is pain- and a lot of times the pain is necessary to prevent something worse. Until there's a better way- that's how it is. I wanted to tell her to suck it up, but I was actually glad she was there getting him vaccinated. Too many parents hide behind fear or religion to escape vaccines and epidemics are beginning again. I'm not saying there aren't government conspiracies and yeah they probably are injecting our children with mind controlling chemicals so that they can form them into an elite army later- I'm ok with that - I just wish they would give me the code so I can practice on them. I kid.

There are a couple of options for meds that Lily can take. Hydrocortisone is the most natural replacement- it performs the catch all functions of they myriad of steroid hormones that the adrenal gland. She also take Fludrocortisone which helps keep all the minerals in balance. She takes both in the morning and a 3/4 dose Hydrocortisone in the afternoon. If she gets sick- vomiting, fever- icky stuff- or hurt badly she needs extra cortisone because the adrenals would release extra cortisol. That is where the training comes in- I gotta know when this would be needed and respond accordingly. Now steroids have been in the news on and off for their performance enhancing capapbilities. I ahve seen this. Lily is a little hulk. She is big, she is sturdy and man does she dance angry. Now that I think about it- the Hulk is a perfect metaphor for how she acts. She can be sweet and caring and bubbly but can change on a dime. Then the roid rage sets in- the hitting, the tantrums. Not so appealing in an oversized 5 year old. We are learning the ins and outs of things. Mostly I am learning it's an imprecise science. The human body is a pretty amazing thing- it saddens me how badly some people treat it.

I am really grateful for the support groups I have found. MDJunction is a site that has tons of different groups for any condition you ever could have. It is run thread style so I have a very tough time finding specific information unless the discussion is titled that- and it is people's experiences which you ahve no references or background on. There is also a newly formed group for parents like me on Facebook. Parents of Adrenal Insufficient Kids. It's amazing how much better a person feels when you hear- I have experienced the same thing- you are not alone. No you are not going crazy- we went through that.

It's a cozy little group. I love that when I post a question, I get responses with in the day. If you know someone who may have a child with this rare condition- direct them our way. Lily presented with pre-pubertal changes but that was due to the tumor- general Addison's(adrenal insufficiency) is characterized by general fatigue, muscle weakness, loss of appetite and weight loss. There can also be a characteristic darkening of the skin. It's not a common disease, but can be fatal if left untreated. Seems like your body really needs that crazy gland on top of your kidney. With kids and their ever changing chemistry and bodies- and sickenesses there are many unique challenges we face.

http://www.facebook.com/home.php?#!/group.php?gid=108310522525740

Giving Kids the World

2010-10-02T14:56:00.000-07:00

It's been a year since we had our Make a Wish trip to Disney. We spent an amazing week at a fun filled village called Give Kids the World. The village was the life long project of Henri Landwirth, a hotelier who heard the story of a young girl named Amy who was dying of Leukemia. Her dying wish was to go to Disney World, yet there were problems lining up accomodations and she passed away before an opening came up. Henri decided he would ensure that this would not happen again, that no other child's dying wish would be left unfulfilled. After all, Henri himself had lost his own childhood to the concentration camps. It began as a building and now is a Village of quaint fairytale houses, A gingerbread house, a theatre, an arcade and my kids' favorite- the carousel next to the Castle of Wishes.

It has been 2 years since we started this journey. It's been almost 2 years exactly when I got the news that changed our lives forever. I remember when Lily was nominated for a Make A Wish trip. I spent an afternoon in her hospital room hiding tears because it's never a good sign when your child is granted a dying wish. The Make A Wish people were kind enough to rearrange my thinking- they are no longer considered dying wishes- they are incentives, silver linings for amazing lil people who have to face something average kids don't. I remember having a specific conversation with Lily's doctor and then our good friend(and child life specialist) about timing the trip. I didn't want to take her when she was sick. Could we wait until she finished treatment and was feeling better. They both were reeling from 2 recent deaths- one child passed before she was well enough to have her wish, they other's wish completed only weeks before she passed. Both said the same thing, Don't wait. I had read up on the very few cases like Lily's, the signs weren't good. Usually there is recurrence between 2-5 years. We're there. This week we have her scans. I cross my fingers and hope. Phil is again gone, a bad omen according to our track record. But I take it a day at a time and tentatively make plans. Plans for conferences, plans for holidays, and each time I write something on the calendar I pray it's not something I'm going to have to rearrange.

Lily's surgeon again invited me to speak with some new residents a couple weeks ago. I hadn't made the early morning commute to the hospital in many months, and I was grateful. Grateful for where we are now and the good care she has. I am grateful for the family and friends who helped us through one of the worst times a parent can have and grateful for the organizations who helped us navigate the tricky waters of the disease. As we wrapped up, Lily's surgeon and I chatted about her and how she is doing. I have to say I dread each scan. She mentioned she is so happy to hear that Lily is good, that she is surprised Lily is doing so well despite such an advanced stage tumor. I know what she means, but it still scares me to hear. Because in my world- science speaks. Scientifically speaking according to the statistics- Lily might not be here in 5 years. But she could be in the small % that is. And that is what we are working towards. So every few months I encourage the kids to give back. We had our lemonade stand to support cancer research, Last week we volunteered at a Make A Wish fundraiser at Cold Stone and just this week I signed Lily up to be a virtual runner in A 5K Fun Run at Give Kids the World. I have also encouraged my husband to drive the 8 hours over there and run his hiney off- but the Air Force might have other plans so we'll just wait and see. Phillip and Kiera have agreed to give their allowance for the month of October(which is pretty convenient for me- I generally forget to give it to them.)

This week we learned that one of Phil's good friend's from the Academy is battling cancer and cancer has returned to haunt a sweet 16 year old who has been battling it for over half her life. Once touched by cancer, it is part of you. It is a shadow that threatens to overtake you. You turn towards the sun and sometimes the only light left is the one at the end of tunnel. It taught me to cherish the little things, fight the battles that are important and look at the big picture. The big picture is that cancer is something our family is going to have to deal with. The battles that are important are the ones that make a difference if not for us, someone who walks the same road after us. And the little things are the smiles, the laughs and the crazy memories that crowd our minds and hearts.

We were excited to get Lily's G-tube out right before we went on her wish trip. She spent months referring to the strange sensations in her belly as "the frog". On our last night before we left Give Kids the world- a shiny green frog hopped up on the wall- scaring the bejeezus out of Bella. Lily started Laughing hysterically and suddenly declared it was the frog from her belly. We all agreed it couldn't have picked a better place to live.

http://www.firstgiving.com/teammallory

Well Burst my big fat Normal Bubble....

2010-08-26T13:07:00.000-07:00

I can't believe Lily has been in school for 2 whole weeks. It makes no sense because my house is still a mess, my laundry is still unfolded and I definitely don't feel rested. Maybe next week will be the week.

The first week of school was a riot. Lily was excited every day and we established a routine, which is paramount for the lil monkey. We get up, get dressed, eat breakfast, brush hair and teeth and walk to school. In that order. Every day. Since Phil is off this week, he's been trying to give me a break and get the kids off to school. Let's see, today is Thursday. He got up this morning, instructed me not to wake up and locked the door so the lil ones couldn't wake me. About 20 minutes later I hear whimpering outside my door. "mom!" comes a soft whisper in between whimpers. It's Lily. I am guessing dad broke routine. She does not do well with broken routine. I was hoping that school would ease her into accepting change. I open the door to a tear streaked face and a great big afro. Oh Lily. " Dad did my hair wrong" another tear trickles down. She was instructed not to bother me, so she knows what will happen if she is discovered- but to her, the norm is worth it. I spray some Leave in conditioner in and scrunch it back down. She grins and skips off. I meet her downstairs. I instruct Phil that once the hair is combed out, it needs to be scrunched down. He shakes his head, I can do that! Unfortunately Lily's communication breaks down when she needs it the most.

The first day of school was uneventful. I went in early to give her teacher a little light reading about adrenal insufficiency and what to do in an emergency. I had an identical packet for the health room with a form that was signed to allow Lily to keep her emergency meds at school. I drop both off and let both know I don't expect any problems, these are just in case of an emergency. I get home to a call from the Public health nurse who informs me that Lily's meds can't be kept at school because they are not on the formulary. I of course, in the least sarcastic tone I can muster- ask what we need to do to get them on the formulary because she needs the meds in case of an emergency. She suggested calling Lily's doctor and confirming if she actually needs them at school and get back to her. Seriously. I am pretty sure Lily's doctor thinks she needs them at school because she filled out the DOE HRS form 36 which requests the storage and administration of meds at school and pretty clearly stated the need. But I make the call. I speak with a nurse I trust at Tripler and she emphasizes the need for the meds at school. She enlightens me to some of the red tape I will have to deal with and gives me a couple buzz words which will be the scissors needed to cut through said tape. I call the PH nurse back. She is a very nice woman, but I definitely get the feel that the first response is always to deflect then consider. She gives me the number of a doctor on the board who will have to approve the change in formulary and requests my doctor speak with her. I immediately make the call to the board doctor and leave the message with all pertinent information. The next day is Friday, I want this ball rolling fast enough to get through the weekend- otherwise it will get lost.

My phone beeps- it's a reminder for an appointment with Lily's endocrinologist the next day. Talk about impeccable timing. As I was reading the fine print on the form 36, I stumble across the need for all meds to be marked with FOR SCHOOL USE. Oops. That can be fixed. I then put the phone down and it rings, it's the school health aid, they cannot store the meds and I need to pick them up. I tell them I will get them after school. I spend the rest of the afternoon assembling another packet of information on adrenal insufficiency, including all the details of why it is necessary to have meds on hand. I'm not sure who will need this packet, but I am pretty sure it will be needed.

I pick Lily up and she is beaming. She loves school and her teacher and her friends. I make sure her teacher knows there will be no meds at school until we figure the paperwork out and to call me if she has any concerns about Lily's health. I don't expect any problems and I want her to be treated normal, but in case of an emergency she has special needs. Lily's teacher is mild mannered and experienced and the perfect lady for the job.

The next day I let the kids know that I will pick them up directly from school to go to Lily's doctor's appointment. I am catching up with laundry when the phone rings. My heart sinks, it's the school number. "Hi Mrs. Mallory, we have Lily here in the healthroom." Oh god, murphy's law. "It seems that one of Lily's classmates accidentally stabbed her in the hand with a pencil, it's a little deep but I cleaned it out. She would like to go back to class. " Ok, great. I see how this year is going to go. I might have flipped out. I might have panicked, I might have demanded to know what kind of child stabs another child with a pencil, but instead I said- Ok send her back to class. My first thought was- karma. A week prior, Lily was practicing writing her name and Bella leaned over to see. Lily went to push her away and managed to jab Bella in the face with her pencil. I spent 30 minutes cleaning the wound. At least Lily's was on her hand. When I called her dad to let him know how her 2nd day of school was going, he said- Karma. Later when Lily showed our neighbor, who was consulted in the face wound cleaning adequacy- she too said it- karma. I would have to say, I have not seen Lily swinging aorund a pencil since then. She also tends to favor crayons and markers these days too.

After a few more days of back and forth about meds, the PH nurse finally got the approval for the pills to be kept at school. Apparently Lily's doctor was a very nice lady who was adamant that Lily have meds accessible at school- duh. The biggest thing was that Lily's doctor was also adamant that an emergency injection also be kept at school. This was a problem for the school because there is no one at the school qualified or willing to give the shot if necessary. So now we had to have a formal meeting to discuss the emergency procedures and options. The reccommended option was to put her on a 504 plan which would label her as being disabled- despite assurances that no labelling would officially occur- sha ok- so that she could have an injection at school. So much for normal.

Day 3 at school, I get another call, from the health aide. I don't think my nerves can handle this. "Hi Mrs. Mallory, we have Lily here in the healthroom." Before I can stop it from escaping "what happened?" "Oh it's not bad, her slipper broke and we don't have and spares." Ok I'll be right there. I grab the first pair of shoes I see and Bella and I are off to deliver. This is one of many reasons I wanted to be close to their school. The next day we have a parent meeting, the day after that we have Lily's emergency procedure meeting. If I had any doubts about them knowing who I was on campus, they are gone. The meeting went well. As Phil put it- it's not a big deal, the injection- tell em to just watch Pulp Fiction. And yet I find that highly amusing. Darn it I forgot to put the purple sharpie in her emergency kit. Anyhow. They agreed to keep the shot at school, even though they don't have anyone to administer it and they will call 911 in any situation they can not get a hold of me or Phil. It's not ideal, but the bases are covered and all necessary parties are aware of her condition and prepared to call 911 if there is any question. At least my packet came in handy. It seems to make more sense to have a nurse on hand, but that is not the world we live in. That would require a 504 plan and they think that's not the best fit option. I could throw a fit and demand they hire a nurse, but that would really pop Lily's normal bubble- so we are going with the hopes that her guardian angels are working overtime and we won't have any problems. SO far she is unaware of any of these shenanigans, which after all makes me successful as a parent at least in this moment. And on another positive side- I get bumped up to automatic chaperone for any of her class field trips. It's official- they put it on the form and everything.

Port Removal

2010-08-05T18:04:00.000-07:00

Almost 2 years ago, with her second surgery, Lily received a Port a Cath for her chemo treatments and bloodwork. The accessing of said port reduced many of us to tears on multiple occasions. Several occasions involved kicking. At the time I remembered telling Florence that by the time we get this accessing thing down- it would be time for the port to come out. She said, that's not such a bad thing. And here we are.

The removal was set for Friday, but Phil got a call yesterday from Doctor Edwards with a proposition- if we could come in today(Thursday) the procedure could be done in the pediatric sedation center treatment room and spare us the 3-4 hour general surgery admissions process. Sold- I said.

So not only did we not have to get up at O dark thirty- the whole process was streamlined, which I have acquired a great, great appreciation for. I decided not to tell Lily about the schedule change until this morning, since she's shown quite a bit of trepidation about the whole event. Who can blame her? Just about everything to do with the darn thing involved some sort of owie. So last night after she was in bed, I let Phillip and Kiera know we were leaving early in the morning, Lily and I to the hospital- them to Monica's house for waffles and then to school. Bright and early this morning, I was fresh out of the shower when Lily meanders in sleepily demanding to know where her father is. I explain he is at work and take a deep breath for her panic when I tell her we have to go to the hospital today. She beats me to the punch,

"But daddy has to take me to get my port out, he can't be at work. " Hmmm. Maybe she has her days confused. I explain that the doctor called yesterday and we have to go in early- but the good news is that daddy will be home tomorrow and they can do something fun. That appeases her and as she is leaving, Bella comes in chatting on my phone. She is explaining to whoever is on the other line that Lily has to get her port out and she and Phillip and Kiera are going to Monica's for waffles. I wonder who spilled the beans as Kiera- my little soicalite wanders in, completely dressed- ready to go. I think I have an idea of where the legumes got their nudge.

We arrive to the sedation center and Lily is nervous. I don't know if it's the extra hydrocortisone she required to deal with the stress of surgery or just jitters but she is acting goofy. Wendy- one of our favorite child life specialists is entertaining her while I complete the paperwork. Within the hour, she is prepped and being wheeled into the treatment room.

The procedure was quick and Lily's wake up was a little rocky, but an improvement. Dr. Edwards let us keep Lily's port for show and tell. Lily was generally pissed off that it was removed and disagreed with the usage of a see through bandaid(dermabond). She demanded her old skin back. A call to dad at work improved her disposition and soon we got to leave. As always, Lily got to pick the lunch- this time she surprised me with Subway- I thought for sure we would be having panda bear. As a treat for this monumental occasion, she got to pick a treat from the shoppette and she found a great necklace- a dolphin jumping through a lei.

As always, I am moved by the toughness and resilience of kids. The child will spend hours refusing to wear pants and within an hour of a surgical procedure be skipping down the hall in wedge heels. That wardrobe choice was completely missed by me this morning and I am grateful no ankles were injured in today's production. All in all, it feels a bit strange but really good that this little piece of plastic is no longer a part of my child. We're not sure yet if we are going to frame it or bury it under the tree in the back yard though- in any case it will definitely have to wait until after her first show and tell in Kindergarten!

What a difference a YEAR makes.

2010-06-25T11:06:00.000-07:00

A year ago I was putting the finishing touches together for Lily's Chemo Independence Day party. At the time I thought we would make it a yearly tradition to celebrate her accomplishment. What a difference a year makes. We celebrate her accomplishment every day, by doing normal things. Yesterday she had her scans and they all looked normal. We still have to wait for the final report, but I'll take normal.

A couple of weeks ago, Phil and I snuck away to Vegas for our first 5 days ALONE together in I don't know how many years, 11 maybe. As I gathered a file of information for our neighbor, I got to look back at Lily's extensive medical history and consider how best to recap it, In case of emergency. I began stressing. We don't have a good track record for trips to vegas. I wish I could say it was due to wild and crazy behavior caused by overindulging in spirited beverages....but generally it was just poor luck.

My first trip to Vegas, I was pregnant with Miss Lily. Very pregnant. We were on a 2 week car trip from Florida to California. I had never been to Vegas and we were going to visit with our good friend Kellie for a couple o days before we crossed the ocean to Hawaii. Somewhere between Colorado and Nevada, this cough developed. Each time I coughed my throat would burn all the way down to my lungs. Being pregnant- I wasn't sure that I could take anything and I really didnt want my Vegas experience to be the inside of an ER. We called our resident OB, my long time friend Jaime- who also happens to be Kellie's sister. She told me what I could take and fortunately it was something that somewhat relieved some of the symptoms. I trekked around Vegas- with my ginormous belly- coughing a fiery cough because I didn't know when, or if, I would be back there. The next night Phil woke up in a cold sweat and he too, by morning had the cough. I lay there hoping this wasn't an omen for our move. Maybe it was just Vegas. Kellie would eye us cautiously, but was the most gracious host to us and our hacking.

Less than 6 months after we got settled in Hawaii, it was back to Vegas for Phil. We were expecting miss Bella this time and since Colorado was closer to him than Hawaii- I packed up the kiddos for a 4 month respite at my mom's. We stopped in Vegas for a quick visit with Phil on our way to Denver. Again we stayed with Kellie, who had just moved into a brand new town home. We spent the first day seeing some of the sights we missed the year before. That evening we sat around watching tv and I just didn't feel well. As was the last time I was in Vegas, I was 8 months pregnant and attributed all general aches and pains to said condition. I turned in early. Not long after, I was laying in bed with horrible stomach cramps when I hear Lil Phillip call me. Phil went to check on him as the wave of nausea hit me. I spent the next few minutes disposed, then composed myself enough to check on Lil Phillip. As I helped Kellie try to clean Phillip's vomit off the entire length of her new couch, Phil dodged into the bathroom. Obviously what goes on in Vegas stays in Vegas- I didn't realize that applied to all culinary delights as well. We spent the next 24 hours quarantined in Kellie's guest room. The day of our flight, I disinfected Kellie's house from top to bottom- feeling horrible for descending upon her, again, with the bird flu. What a difference a year makes.

2 months later, Phil and I had a couple of beautiful days in Vegas when he graduated from weapons school- since Bella was brand new- she got to make the trip with me. And even though I was still getting puked on every so often- it was a delightful trip. Kellie even offered to hang out with Bella- in the hotel room.

2 years later, Phil and I were making arrangements for Kellie's wedding in Vegas. My mom was coming out to watch the kids and I was so looking forward to seeing our friends and spending some time with my man. alone. And then we found Lily's tumors. I was beginning to think there was some sort of curse involving us and even thinking about going to Vegas.

2 weeks ago, as I sat quietly on the balcony of a room at the resort in Vegas where Kellie got married, I pondered how our lives had all changed in the past 2 years. It occurred to me that within weeks, we would be to the 1 year cancerversary of Lily completing chemo. That damn mitotane. There is no party planned. Last year we had no idea how this year would go. We waited every 3 months for those scans to show nothing. I definitely underrated how great normal is. It's not that we aren't proud of all that Lily has accomplished- but she is more than the cancer she battled. It's time to move on. There may come a time when we have to revisit this in one form or another, but for now I am choosing normal. It will never be as if it didn't happen. We have daily medications that remind us of our journey, and those daily reminders make me grateful for where we are. My celebration comes daily as Lily hugs me and tells me I am the "best mommy ever"- like she has a vast list of other mommies she's fired. My celebration is watching her excitement mount for Kindergarten and knowing that she will thrive and the world is a better place with Lily in it , for however long that may be. And mostly I am grateful for the difference a year makes.

The Cause of Cancer is.....

2010-04-24T12:16:00.000-07:00

one little cell who loses it's way and decides to run amok. That little cell then takes food and resources from good cells which then start to die. The bad little cell then takes over the dying good cells and starts to reproduce. Since the bad little cell has no regard for the cell rules of procreation or any sense of responsibility at all (enough is enough- time to stop- in the biology world it is called apoptosis.)they just keep going, and going, and going. When cells go rogue they have a programmed response for suicide. Cancer cells don't have this response. They are sociopathic little buggers. And each one of their offspring is even worse. And those cancer baby cells go off and create even more baby cells whose problems are even greater(more mutations) than it's grandparent generation.

What makes these otherwise healthy cells turn into monsters you ask? What exactly causes this cell to lose it's way? It depends. On A LOT of things. Sheryl Crow, a breast cancer survivor, recently weighed in on her beliefs. She reminded people not to leave bottled water in the car or sun because it causes the release of chemicals into the water. There is an email that circulates periodically with this warning. A quick check on snopes.com reveals what my gut instinct and 4 years of Biology and chemistry told me- this is not entirely true. Sheryl Crow did mention not leaving bottled water in the sun because docs have actually been saying this. It makes sense, have you tasted bottled water that's been left out in the sun? It tastes like the bottle. I, as a rule, do not like to taste my water. I am a big fan of the cool, crisp, wet nothingness taste of the beverage that is water. But the claim is that heated water bottles release dioxins which on it's own just sounds bad. Dioxins are known carcinogens and includes a couple different chemical compound complicated biproducts and are formed from industrial manufacture and can also be found in....wait for it....cigarettes. It is also "organic"- but that I will have to leave for another discussion. Now technically bottled water bottles(soda bottles, etc) are made from PET- and do not break down to release dioxins. That is not to say that when left in the sun, chemicals are not released into the beverage. But your body is programmed to get rid of chemicals. There are chemicals and chemical biproducts in everything. Your body manufactures, converts, stores all kinds of chemicals. You don't want to consume nasty chemicals that cause cancer, but common sense also has to prevail. Was it the bottles of water left in the hot car that caused Sheryl's cancer or was it the years of breathing smoke filled air while performing? Hard to say, maybe she just had a rogue little cell that could and it did and couldn't stop. I mean have you seen the woman's body- obviously she takes care of it. Sometimes you can do everything right and the cells go wrong. And sometimes someone can smoke and drink for 60 years and never once get cancer. SO what's a person to do?

If you are on the go, you can grab a bottled beverage. Water is a healthier option but ohhhh nooo- what if it travelled on a truck that wasn't cooled and the bottle broke down chemicals into it? You could go for soda- but really- what IS soda? I mean technically it is "natural" in a literal sense but other than water and high fructose corn syrup...what do you recognize in the ingredient list? High Frustose Corn syrup has also recently been revealed and glucose's misfit brother. What about the Phosphoric acid? Yummy- it's what gives cola that syrupy, tangy quality as well as the ability to remove rust.... If you are worried about your sugar intake, you might choose a diet soda. Because the only thing better for your body than sugar is aspartame....mmmm some of the primary biproducts in your system are methanol and then another on of the further breakdown products is formaldehyde. Why not get a jumpstart on preserving your internal organs for the afterlife??? I LIKE soda. I know it's a chemical minefield. I don't drink it every day. That is the key. If you drink 6 sodas a day- your body is being exposed to all kinds of icky chemicals and byproducts it doesn't need. Water, even in a bottle that may or may not have been on a heated truck/boat/plane will have less negative impact on your body. Moderation.

All these issues beg the question- what responsibility does the government have in regulating these products? Well with certain health care reforms, we may soon see. As seen in European countries- if taxpayer dollars get funnelled into healthcare, taxpayer representatives are going to get a say in what and how what goes into those taxpayers bodies. I personally feel that people are responsible for what goes into their own bodies. Sure I believe in full disclosure on food items, and I try to choose healthier options. I am responsible for what goes into my body, not the government. I can make choices. I already have one mutation in my cells that predisposes me to cancer. The average person could drink soda all the time, smoke some cigarettes and have a drink of alcohol a day before their cells might acquire what my cells already have going for them. Mutants. I am hoping that with more government "involvement" in healthcare we might see some more funding for research. Not just for cancer, but for so many of the conditions that affect quality of life moreso than quantity of life. Maybe they will find a cure for stupidity...oh but I digress. An ounce of prevention....

And sometimes, no matter how good a start you give them, whether you give them the best nutrition, keep them away from bad chemicals and too much sunshine- cells go bad. As always, the best thing to do is live life the best you can. Embrace the good and hurdle the bad. Are you telling me that in all our quests to find portable, lower calorie, lower sugar foods so we can eat more of what we love with no nutritional benefit to our bodies...the result might be BAD? NO way.

The Results are In

2010-03-25T21:49:00.000-07:00

Monday was what shall henceforth be referred to as Scanfest. It involved 2 hours of prep, 2 hours of scans and 2 days of worry. Lily impressed us by exhibiting about a quarter of the stress level I felt. Phil offered to take her so I could clean. Basically, so he could read Sports Illustrated in quiet for a couple of hours. He's seen me at these things and realized that I could better channel my nervous energy around the house as opposed to wearing a new path in the halls of radiology. I refuse to leave the waiting area. What if she needs me? Instead, it is much more productive for me to remove all the drawers in the kitchen- empty and clean their contents. One would suppose that simply doing routine cleaning would suffice, but one would be wrong. Such routine work would leave portions of the conscious mind available to wander to what ifs. Doing a spring cleaning maneuver such as total drawer removal in conjunction with keeping Bella entertained definitely passes time most efficiently.

Lily did much better with the anesthesia this time. We didn't super stress dose her with steroids- because Phil and I both suspected this was one of the main causes of her post sedation rages. It worked. She woke up happy. It could have been that she was sedated so much longer this time, that the meds were able to wear off a little better, but we shall see. Unfortunately this will not be our last set of scans. I am hoping to try it without sedation soon to alleviate some of the levels of nasty meds we keep pumping into her.

She had a full body MRI series with contrast- brain, spine, everything. She then had her routine abdominal CT series. The doc called Phil last night and reported that he went over the scans with the radiologist and the only oddity that they could find was that she was missing an adrenal gland. Phil and I said the same thing....just one? She had the right one surgically removed- and the left one had essentially disappeared as of the last scan due to chemo. There was not much to it, but they could see it. Another one of those double edged swords...if it grows back- she may not have to be on as high doses of maintenance steroids. But if it grows back, other things might as well. But that is something we will just wait and see. The good news is that for now, her scans are clean. We carry on.

Specifically I focus on preparing for the dozen or so little monkeys who will invade my home Saturday for the big birthday celebration! Someday I will get more pictures downloaded!

2010-03-12T11:37:00.000-08:00

It's funny how you think you are getting back to normal and then a few things happen that convince you that you aren't as far along as once thought....and that wasn't too darn far to begin with.

We had Lily's check up last week. She is doing great and treats these appointments like mega visiting hours at the hospital. The biggest problem was that we had to get her caught up on vaccinations, which meant 5 shots. In addition to her port access and flushing. Even Lily was like"cant they put those(vaccines) in my port?? Poor monkey. But 5 down 2 to go. The nurse even said- you all are in here often enough, we can do a few at a time for the next couple of visits. I said- um no, we'll knock out as many as humanly possible today because I'm gonna have to drag her in kicking and screaming next time. Lily took the first shot like a champ and then as they get the second shot ready, she says "I think I'm good, we can do that one next time".

SO we are gearing up for her next round of scans. They will be on the 22nd and this will be the full body MRI. Her sarcoma took a back burner to the adrenal tumor, now it's time to make sure there are no signs of metastasis or recurrence. We don't expect to see anything, but it's stressful until we get the all clear. This is the new normal. Phillip had some headaches last week. Which of course, concerns me. I need to get his eyes checked, but now he has a runny nose- which is actually a relief because I know that they were sinus headaches. One night, I was making dinner after basketball, which is generally when he has the headaches. I think it's the big grassy field....and he quietly says -Mom, you don't think it's a tumor do you? -And that is our new normal. My heart broke into a million little pieces. I let the dinner go and had a chat with him and reminded him that we just scanned his brain and it looked great. He had forgotten, he was relieved. It's this weird place where I want them to be cautious and understand they have to pay attention to their bodies signals, but I am terrified that they are going to live in fear and when you live in fear, you forget to live.

So I had a girlfriend the other day who was traumatized by her daughter's bad haircut. We've all been there. The bad haircut, not necessarily the trauma resulting from it. I had mine when I was 5. I wanted the Dorothy Hamill haircut that was all the rage. That is right up until I saw it in the mirror. It felt wrong, it looked wrong and I hated it. I sat and cried on the bathroom counter. After that, a bang trim was a stressful event. Until I was in high school. I had a bad perm that was the result of my hair being waaay too long and the stylist being waaayy too inexperienced. I ended up with shorter hair and months of intensive conditioning treatments and I learned a valuable lesson. Hair grows back. I watched my dad and brother lose their hair clump by clump going through cancer treatments. It felt pretty vain to vest all your interests in something like hair.

I have always cut little phillip's hair at home. I used to cut Phil's brothers hair, and really it's not a big deal. No it doesn't always look professional, but then again- it grows out and you try again in a month. Phillip doesn't so much enjoy being the hair dummy. This stems from an unfortunate incident when he was 3. I had been halfway through cutting his hair when Kiera came bounding through. I had just taken the #2 guard off and was going to put the #3 guard on for the top. I tended to Kiera and went back to finish his front. Yeah- I took a 1 inch strip of hair off the front, with no guards. He had a bald spot. Not only that, it clogged the clippers. I dragged him down to my friend's house to borrow her clippers and the resulting "do" was very high and very tight. He looked like a miniature marine. With a bit of a bald patch in front. He was miserable. But guess what? It grew back. SO I could relate to my friend's experience, but not the 2 days worth of ranting over how her 3 year old's self image was destroyed. The only way a 3 year old's self image(of which they have very little- I have found.)can be destroyed is if you convince them of it. They have very little theory of relativity. Example #1: 3 year olds believe magic markers to be an acceptable substitute for make-up. Example #2: If allowed to dress themselves- 3 year olds will pick their 2 favorite pieces which will happen to be a crazy floral print skirt in pink and a polka dot shirt in the hues of green, yellow and blue. Example #3: 3 years is the age generally that kids take the scissors to their own hair resulting in learning one of life's biggest lessons- never cut your own hair. Or let a 3 year old cut hair. Basic stuff. If a 3 year old thinks she looks ugly because of a haircut, it is because someone reacted to the haircut in such a way to convey this. Of course my biggest disappointment was that all the hair that got chopped off probably could have gone to an organization called Locks of love that makes wigs for kiddos with alopecia.

I was so worried about Lily when her hair fell out in chemo. Her big hair was famous. Yet the people it was hardest on was me and Phil. She was cool with it- after all she and dad had matching haircuts then. She hardly ever wore hats to cover it and wasn't bothered when you touched her noggin. She periodically asks me to cut her hair like dad's again, and I refuse. If for no other reason than 3-4 year olds tend to be impetuous and they tend to make 3 year old decisions. So needless to say, I have a slightly different perspective when someone complains that the bob and bangs weren't what they wanted. In Boulder, every March they do a St. Baldrick's fundraiser to benefit childhood cancer research. People donate what they spend on a haircut(which is a lot of money these days) and the good sports get their head shaved. My good friends go on over every year- it's a cause near and dear to their hearts as their son had cancer too. He recently went in for a check up and they found nodules. And part of me knows that one of these times when we go in for scans, it could be us.

So this is what I try to remember: Don't sweat the small stuff. A bad haircut isn't the end of the world. There are many moms out there watching their kids lose hair clump by clump who would love the luxury of giving their child a haircut versus shaving it off so you don't have to watch it fall out bit by bit. And there are many moms who have lost a child who would give every last inch of their own hair to run their hands through their kiddos hair one more time.

Scans and such.

2010-01-26T21:44:00.000-08:00

We had the abdominal ultrasounds today for Phillip, Kiera and Bella. This is part of their "routine" screening now since they have a sibling with an abdominal cancer. I am pleased to report that all parts that should be there are and nothing that shouldn't be. The only point of concern was Phillip's pancreatic duct which is still dilated from the trauma it received 2 years ago. The good news though is that the dilation has decreased some from his last scan. This shouldn't cause any problems but we'll keep an eye on him. We still have to do an ultrasound on Lily's belly before we can get her port out. It was entertaining that at one point all available exam rooms of the ultrasound dept.were occupied by Mallory children.

Since they had to fast for the ultrasound, we all fasted this morning- and we were all rewarded with a big breakfast at Big City Diner. Bella requested candy for breakfast- I think chocolate chip pancakes with whipped cream counts.

Oh Brother.

2010-01-25T16:25:00.000-08:00

It's funny how sometimes unrelated events get tied together and how simple words evoke certain feelings. I had a conversation with a girlfriend this past week about tumors and such. We talked about Lily's size and how when I was pregnant with her, her abdomen was discovered to be unusually large and they monitored us closely for the last couple of months of pregnancy. I have often wondered if the tumor was there then, waiting. We'll never know. That led to a conversation about my dad and brother and the various tumors in my family. I sometimes forget that there are little ears listening and processing.

This weekend we called grandma to chat. Lily waits patiently for her turn(read as: jumping up and down screeching "I wanna talk to gramma next!"). She gets her turn and I always am amazed at what she deems important to tell grandma about. Sometimes she goes around the room describing things, sometimes she tells of atrocities that have happened to her at the hands of her siblings, and sometimes she just sings. Often she walks away and I forget she has the phone until I suddenly remember and hope she hasn't laid the phone down somewhere while she plays. Nope not this time. She opens the conversation with : My mom's brother had a rock in his head! He died. He's dead.

I look in horror to my angelic child who is so proud of her declaration and is grinning ear to ear. Not only did she use two different tenses of a word correctly, It's like she just figured out a great mystery well before her years and wants everyone to know. I wonder how mom is faring on her end..I don't get the chance to ponder that as Lily announces " My mom's dad had a rock in his head too." She gently pulls the phone away from her ear and places her little hand over it- "Your dad is dead right?" I nod slightly as she returns to her conversation "Yeah, he's dead too." She then launches into a discussion about something entirely unrelated and gives each of her siblings a turn talking. By the time I get to talk with my mom, I have forgotten the incident although later it cause me much pontification.

It finally dawns on me, one of Phil's brothers' birthday was this past weekend. Last week we were talking about it in the car one day ( we talked about making cards- it never did happen) and Lil Phillip asked which uncle. I told him and he said- Is he a pilot? Nope- he's gonna be a brain surgeon. Phillip pondered that for a moment and looked sad. "It would have been nice if he would have been a surgeon when your dad and brother had their tumors". I am always amazed at the combined simplicity and complexity of children's thoughts. We had a pretty indepth discussion on tumors and surgery and the trickiness of brain tumors. Lily looked puzzled and says- " Uncle Bob had a rock in his head?" Yep. "But he held me when I was a baby. Did he have the rock after that? " No honey, he had the rock when I was still a kid, he died before you or Phillip were born. "So he's dead?" Yes. "And your dad had a rock too?" Yes. She ponders. "Uncle Bob held me. He did." She has that look of determination that often ends in a fit.

I don't argue with her. I've learned that there is no sense in it when she is adamant. I have also learned that she is often right, I just don't understand what she is trying to tell me. I understand what she is saying, but I interpret it with years of experience. The problem is that she is saying it through a 4 year old mouth- there is no veil of political correctness. There is no concern for how uttering certain words like death may cause twinges of emotion. Because in a 4 year old mind- death is the equivalent of sleeping. They don't have permanence. Maybe her thought processes aren't so random after all, maybe they are very purposeful. Sometimes it's not how we see things, but more about how things are seen through other people's eyes. And sometimes we learn that sometimes when you see things as they are, it's really not so complicated at all.

2010-01-05T23:39:00.000-08:00

Lost somewhere between wanting more and just going with the flow is where I linger. The battles have internalized. I've been trying to sort things out for months. Sort the laundry, Sort out homework, sort out routine and sort out feelings. I should be ecstatic. Life right now is exponentially less complicated than it was a year ago, yet my emotions are more so. I go from embracing the purity of the moment to trying to plan for the future to agonizing over the what ifs, to just getting through the day, to realizing another year has passed.

We found our new routine. I still forget Lily's meds from time to time and feel horribly guilty when a nasty tantrum brings it to my attention. I forget to put in her hearing aids before we leave the house and usually curse myself as I have to repeat almost everything 3 times for her. I forget what day it is. I remember when I could recall key pieces of information at will- now I fumble over my own children's names. Other moms reassure me this is normal and to just be glad we don't have pets or I'd be calling the kids by their names too. I think we should get a pet, and I will name it Dammit. Come here dammit. Dammit, Stop chewing on that. Better yet, I could legally change all their names to Dammit. George Foreman was onto something there- and I don't just mean the brilliance of indoor grilling.

I spent the past few months trying to find balance where I don't think there is any. I try to write and it goes round and round. I try to clear my head, but the haze settles back in. Even though I don't want last year to define us as a family, it has left more than a few permanent marks. I feel like I have been catapulted into a mid life crisis. I don't even believe in mid life crises. I used to think Mid life crises are for those who don't know what they want. I just realized they are for those who know what they want but are feeling the pressure of mortality to achieve them. It's when the weight of reality starts to taint your dreams. It's the weight of balancing what's important and what's necessary. The hope of doing something more that is beyond yourself merged with the realization that there aren't enough hours to accomplish the basics.

There aren't words to describe the conflict of emotions that surround recovery. I know it's normal. This is the processing time. I want to channel the experience into something positive- but wonder if there is a way to do it without living in it. I love how music helps sort this out. I was trying to come up with an upbeat playlist to improve both mood and exercise time which actually feed into each other. I recently downloaded a new Alicia Keys song that Phil and I both enjoy very much. I always marvel at how he can listen to a song 50 times and only hear the beats or the riff. I cannot listen to this song without getting chills. I don't know if she captures the feeling or if the feeling is captured in me. For me it embodies the moment you realize it's gonna be okay. That is not to say the pain is over, but you realize it is what it is and the only way to go from there is up. SO as I am compiling my playlist of upbeat grooves- Phil says _ Hey! How about that new Alicia Keys one? I laugh and once again he looks at me like I have lost it. What? It has a great beat. He is unapologetic. I know we have listened to the song in it's entirety no less than 5 times together. Have you ever actually listened to the words? No, again he says- it has a great beat. Yes, but the title is -Try sleeping with a broken heart? Oh, maybe not. But it got me thinking. It's a song that makes me feel. Something that a lot of times I had to push to the back to take care of business last year- so for the past few walks- I listened to it and felt. I highly reccommend it. It captures a certain element of loss. Sometime you lose time, sometimes love, sometimes a friend, sometimes innocence- but you find a way to make it. And in the process you gain something invaluable. Sometimes you gotta do that before you can carry on, Dammit.

Calendar Girl

2009-11-24T21:04:00.000-08:00

Here she is Ladies and Gentlemen....MISS JANUARY!

She even signed a copy for us!

A few months ago, Lily was asked to take part in a photo shoot for a fundraiser calender for some of our favorite furry friends at the hospital. The Therapy Pets always cheered Lily up during treatment and we were thrilled to help them out. Proceeds go towards special vests for Dogs on Duty in Iraq!

What a Difference a Year Makes

2009-11-23T11:43:00.000-08:00

I just read through a few entries to find a story in the blog that I never wrote. I guess it wasn't time. A few weeks ago I got a call from the clinic. They wanted to know if it would be OK to nominate Lily to light the hospital Christmas Tree. Of course last year's tree lighting popped into mind because it was Phil's birthday, so I let him go home for the night and Lily and I were hanging out. The nurses helped me get Lily bundled up in her robe, put her mask in place because her counts were low and gather all associated nee nees, Poohs and necessary items for the trip down stairs to watch them light the tree. We got out there at dusk. We found a seat on the grass away from people. She couldn't get comfortable. The band was playing but the ceremony hadn't started. Finally she looked at me with her sick little eyes and asked "can we go back upstairs now?" So we went back upstairs and she fell asleep. Later that night she woke up and I carried her across the hall to look out the playroom window at all the lights below.

This year she gets to light the Christmas tree and she's very excited. It's a good reminder of no matter how tough things are you will get through. Last year we were going from hour to hour. I don't want to delve into those feelings and those memories, but they have shaped who we are. I am truly Thankful for all of those who have helped us through this year and have done so many things to make a difference for us.

If you are out and about on Monday November 30, the Tripler Tree Lighting Ceremony will be by the flag, Oceanside at 1730 hrs. Anyone is welcome to join us as Lily helps usher in the holiday season at Tripler.

Got Panda?

2009-11-20T23:17:00.000-08:00

The whole "preventative screening" term is a bit of a misnomer. I'm pretty sure these tests don't prevent anything except a good night's sleep or two. "Early screening" definitely applies as Bella and I had to be to Spa Tripler by 0630 on Thursday. Phil got the big kids off to school and brought Lily in after that. On the schedule: Lily and Bella's MRIs. Bella had an MRI of her brain and Lily had her routine followup scans. Both required sedation as anyone who has preschoolers knows- they can't sit still for 2 seconds much less 45 minutes. Bella did great, although I could tell she was quite uncomfortable with being the "patient". We had their pre-sedation physicals on Tuesday and while Lily was being weighed and measured - Bella heard the nurse say- Oh we get to see Isabella today too! As I turned to smile at Bella, I noticed that she was quietly slinking out the hall and climbed into the stroller. She didn't seem too keen on being included in this "sospital" stuff. She was pretty lightweight when it came to sedation too.

Lily has her port, so that access procedure is routine. The nurse practitioner was telling me they would like to dart Bella. She seemed to be taken aback as I laughed out loud thinking of the many times Phil joked how he wished he could toss a tranquilizer dart at the kiddos...later when I relayed that to him that they actually "darted her" he asked- what did she try and run away? At first I balked at the premise of sticking her twice when once would do it, but the dart is quick and to the point, where as the IV takes precision to get in and then however long to hook the meds up. So after about a minute, Bella hands me the toy she was playing with and goes completely limp against my chest. While she was in her MRI, I ran over to the clinic where Lily was getting accessed with both Child Life Specialists and a handful of her fan club. Then it was back to the MRI for me to wait for Bella and up to sedation for Phil and Lily. We have since agreed along with Child Life Services that Valium should be standard issue for children's sedations. They were just getting ready to leave for her scans after Bella started waking up so we high-fived and gave the other kids kisses and got back to business.

The problem with mind altering drugs is that they, well, alter your mind. Whereas an adult might make infantile decisions, kids make neophyte decisions. Bella can't yet fully command her eyes to open, yet is demanding breakfast. I had promised when the MRI was over we would get breakfast- she wanted me to make good on that. Fortunately she settled for a pink popsicle. When she finished that, she started fine tuning her muscle control which meant she tried to sit up, but while she was focused on that, she forgot to hold her head up and it would pull her back down. We did this catch and release dance for about an hour when she finally started being able to talk coherently again. At this point she wanted to play with bubbles and well she would blow and although I saw no bubbles, she apparently did and promptly yelled at me for not popping them. After that, I got to look like the altered one as I popped imaginary bubbles. She finally seemed to be sitting up and in control, so we ventured to the playroom. She would sit and play and then randomly fall over. I would have video taped it with my phone but I was too busy catching her. When Phil and Lily returned from her scans we hugged them and came home to be here when the other kids got home from school.

Lily woke up screaming as usual and ordered a purple popsicle. There were no more purple popsicles so she chucked the red one across the room. She then proceeded to yell for an hour and 20 minutes until it was time to leave. By the time they got to the car, it was well after lunch and Phil asked her what she wanted for lunch- how bout panda? in her most innocent, I didn't just chuck a flavored icicle at your head voice. So of course she got her Panda Express. Girlfriend can pound some chow mein and orange chicken after a sedation.

Phil and Lily actually beat Phillip and Kiera home. Both kids walk in and immediately balk- why don't WE get Panda? Well- when you have YOUR scans, you can get Panda after. BUT we ARE having our scans- tomorrow. Yep. So we get Panda after? Sure. OK.

We spent quite some time preparing Kiera for her MRI. She was mostly worried about the noise. And the clausterphobia. We watched videos and listened to the sounds it makes on you tube. It didn't seem to help. The next thing I know- Lily has Bella laying under the chair at the desk- she's tied a rope around the chair and is humming loudly- just like the MRI video. Whatcha doin? I ask. -Takin pictures of Bella's belly.

So this morning we didn't have to arrive so early since Phillip and Kiera were going to do their scans without sedation. We met with Miss Julie who kept one kid occupied while the other was being scanned as well as providing pre and post scanning debriefing for all parties. Phillip went first and we were delighted to find that Tripler actually has the movie goggles . That made all the difference. Phillip was like a statue- much like at home when placed in front of television. When he was done- he bounced right off the table- of course that may have been because he had forgotten to go to the bathroom before the scan. As he was returning from the loo, Kiera had just walked into the room. She took one look at the MRI machine, spun around and yelled " I am NOT doing this! There has GOT to be something else!" And she makes a bee line for the door. Fortunately she bounces right into Phillip who grabs her and holds her. We explain to her how it all works and that she gets to watch a movie. And-Phillip tells her- after you're done, we can go get Panda. She looks like she would rather shoot and stuff a panda right now over this, but after a few minutes she climbs up onto the table and I swear I can see her little heart beating right through her shirt. Once we get the goggles on, she's good to go and does fabulous. And of course as she hops off the machine the first thing she says is " Can we go get Panda now?"

Am I 4 or am I 8?

2009-11-09T12:26:00.001-08:00

Silly question, most would think. But the ironic thing is that she is a 4 year old in the body of an 8 year old with the experiences of an adult- so lets face it we have no idea how old you are. I don't know when she got on the kick, but she asks me at least once a day- am I 4 or am I 8? We tell her she's 4. I mean chronologically, she is 4. Sometimes wise beyond her quaternary years, she says so many things that make you go hmmmm. Sometimes I feel like it's the calm before the storm, sometimes I snuggle in the warmth of the ordinary marvels of a child.

Lily has also discovered there are sometimes medicines and 'for ever and ever' medicines. We have been battling an atrocious cough for weeks now. I gave up on cough medicine over a week ago. No sense in taking stuff if it doesn't do anything. One morning as I was doling out the hydrocortisone and fludrocortisone, she asks- why do I have to take this- I'm not sick anymore- as she wipes the thick stream of snot across her cheek. I reminded her she had a rock in her belly and when they took out the rock, they took out her adrenal gland and now the medicine keeps her healthy. A bit too much information? Maybe. But it's important for her to have because she is always going to have to take meds and more importantly let us know if she is feeling sick so we can up her dose. So, she looks at me square in the eye and asks- is this a little while medicine or for ever and ever medicine? For ever and ever. Oh, she pauses, Ok. She hops down off the chair and goes about her business.

The next morning I am languishing in the comfort of my bed(read as: coughing so hard I am laying in the fetal position as to a. not wet myself and b. keep my insides from ejecting themselves.) Phil lets me know he is leaving for work and gave Lily her meds. Apparently they also had a long talk about for ever and ever meds. I guess it's sinking in. Then this morning her Ariel doll had to undergo a series of scans and we regret to inform you that Ariel has a frog in her belly and a rock in her leg- but Lily assures me she will have a cut in her belly and her leg but she will get better. Phil and I look at each other and shrug. She's working through it. Like the rest of us, it happens in its own time. She also found a card she got from her Grandma after chemo was done. It's one of those musical ones( which she plays over and over and over until they break) this one is 'Celebration' by Kool and the Gang. I hear her in the other room. She comes running in as I am writing this. Her new favorite outfit is a pair of khaki shorts and the 'No owies" shirt with her name on it that my cousin Shannon made her. I just like that she is wearing clothes- a fact that has been duly noted in quantity of laundry. The khakis are around her ankles, she's got the card held open in one hand and is holding the bottom of her shirt in her teeth while pointing at her underwear. I wonder if she's doing a rather poor imitation of 70's dancing, but what's with the pants? She tries to talk and the shirt falls out of her mouth. She stuffs it back in and is mumbling through. It sounds like she's saying "Cheese Mash" After a few minutes of seventies stripper charades, I get what she is miming. She is wearing Dora Birthday underpants. Dora and Boots have party hats on and are holding balloons. The song is "celebration"- the card matches her underpants- "These Match". Okay maybe she is pretty 4 after all.

103 degrees in the shade....

2009-10-21T16:07:00.000-07:00

Lily bugged me all yesterday morning about making her "punkin patch". In our house they are no longer pumpkins, they are "punkin patches". She wanted to carve her punkin, but I convinced her we could do arts and crafts punkins instead. I figured that homework time would be the best time- you know keep them all busy at the same time. Lily stuck features on hers and while I was helping Bella, she fell asleep on the couch. I was worried because earlier she had complained that her neck and head and legs were hurting. I was hoping it was a growth spurt.

In adrenal sufficiency land, illness is tricky. A simple cold could knock her out if we don't get the cues and up her meds accordingly. She woke up screaming and when I felt her, she was burning hot. The mommy thermometer guessed 102. It was 103.7. I stripped her down and called the clinic. It was 4:06pm. No one was there. I gave her a triple dose of hydrocortisone and called the on-call doc. I knew what he was going to say- take her into the ER. UM, yeah . H1N1 anyone? No thanks. But he says he will call ahead and that should expedite the process. Any of the other kids, I'd throw them in a tub and ply them with tylenol and wait an see. Lily is the great unknown. It could be an infection in her port, it could be an adrenal crisis, it could just be a virus. So just on the tail of a great big talk with the kids about how I will be proactive at treating Lily no differently than them....there you have it.

I call Phil, he is on his way home, he offers to take Lily. Um Ok. I suck at ERs. Plus he always gets out of there in 1/3 of the time I do. He gets home grabs her and they are off. I begin the disinfection process which keeps my hands and mind busy from the negative worrying I would be achieving in the waiting room. I have also decided that all I need to do when someone spikes a fever is walk around them saying emergency room, doctor's office, emergency room, doctor's office and the fever will immediately disappear- or fade within 42 minutes which is how long it takes to get to the hospital with moderate traffic flow. Phil calls from the hospital- her fever was officially 103. I don't know if officially means "done by medical staff" or "in a place we prefer to not have things stuck" but obviously Phil was not chanting on the way to the ER. That is probably why he gets out quicker- they think I'm mental and have to observe me for awhile to determine if I am safe to send poor recovering cancer patient home with. So in cases like this we are still under the oncology umbrella. Until she is at least a year out, we call the onc docs first, act later.

I was nodding off as they returned almost 6 hours later with 103 degree fever, tylenol, and the handy ER print out that tells you how to care for your child with "URI (upper respiratory illness) also referred to as THE COMMON COLD". Really? Are the bold letters necessary?We didn't take her in with a flipping runny nose- she had almost a 104 degree temperature- and that was "officially" . She did get antibiotics though. Last time we took her in they didn't give her any and her onc doc about had a coronary. I guess it's protocol with these patients to antibiote now, ask questions later. That lets you know how quickly things could go south if she gets an infection. Fortunately she's not immunosupressed at all and other than her lack o adrenal hormones she has been pretty healthy. You know other than that and that pesky cancer.

WE tuck her in and I try to sleep since I had a meeting this morning at Tripler at 0dark00. Bella is coughing non stop and since they sleep together I check on them every so often. I finally fall asleep and hear Lily yelling for me. She's thirsty. And wants to watch spiderman. By the time I get water and Spiderman, she is back alseep. I feel her and she is on fire again so I wake her up to take tylenol and get ready for my meeting. Of course by the time I am out of the shower- all 3 girls are up, requiring breakfast and liquids. I get a later than planned start out the door and am rewarded with 2 accidents and a stalled vehicle on the commute. It is just one of those days. The meeting went well- it was an informal session with residents about parental expectations and professionalism. Although I felt like I really didn't have a leg to stand on with the whole- be on time advice, so I let that slide. All the while I am glad that I have an amazing husband who is at home with the sickie and offers to go to the ER even if the house looks like a hurricane hit by the time I get home. I also was reminded what an amazing surgeon Lily has, she coordinated and led the meeting. I was thrilled to see she is mentoring? guiding? I don't know the right word there these young medical professionals. She is the perfect mix of brains and personality and I couldn't think of a better doc to be teaching about professionalism.

I get back home and there is a random call from our auto insurance company. Apparently the girl who bought Phil's beater piece o metal back in April crashed the bad boy and thought it would be a good idea to claim it on our insurance. Like I said, one of those days. It does not bode well that it is only noon. In about an hour, Lily and I will head back to the clinic to see if she's going to live. I suspect she will, for now. For now. Plus I the 2 hours I spent in the car this morning gave me lots of time to debate whether it was the changing of the blog or overusage of the word normal that landed us in this little predicament because for us there is no longer such thing as "just a virus".

Monkeying around.

2009-10-18T16:27:00.000-07:00

I've given it a lot of thought. Since we are post treatment and the updates on Lily are further and fewer between- I'm going back to my old blog. It was Adventures in Potty Training and since we are done with that chapter in our lives(mostly-ish) I have renamed it Monkeying Around. I will keep this one and use it to update Lily specific stuff....If you want to see what's up with the Mallory's- come on over and check it out! There will be a link back here in the side bar which will say when the last update was.

I have also been toying with trying my hand at turning Lily's Blog into a book. If for no other reason than to have as a personal record. There would be much cutting and pasting, editing and some new writing involved. I want to do it while it's still fresh, and now that we are out of the throws of it and I have sooo much spare time on my hands(haaaaa haaaa haaaa) I started reading through it. Yep. It's still fresh. I do have to say though I am a much "better"(funnier?) writer when I am extremely stressed, slightly sleep deprived and totally annoyed- all internal editing goes out the window!

Anywho- check out the less life threatening day to day nonsense we call life in the Mallory house!
http://mamas4monkeys.blogspot.com/

Cancer Awareness

2009-10-17T11:44:00.000-07:00

I find it hard to believe that anyone does not know that cancer exists. But of course that may be because it is an ever present factor in my life.

We had another check up for Lily last week- she is doing very well. Her doc assures me that she looks normal and her face does not look 'moonlike'. She is an eating machine and is growing like a weed. Her doc also mentioned that we need to get going on screening for the other kiddos. Ugh. An evil necessity. Screening for cancer is 100 times worse emotionally than a gyn or turn your head and cough exam. But early detection is the key. So we will do it.

For the kids, it will be minimally invasive and based on immediate family history. They will each get routine bloodwork and Brain MRI's as well as abdominal ultrasounds. The ultrasounds are nothing- Phillip is an old pro- he also showed no concern about the MRI- his comment was"As long as they don't have to shove that tube down my nose, I'm fine". Kiera's eyes got wide and I used a cookie cutter, little people and my phone as an example. Her biggest concern is that it not be louder than daddy's music. I can pretty much guarantee that, but I personally would prefer daddy's music. Phillip and Kiera are going to do scans without sedation, but Bella and Lily will still require sedation. I don't like that part. Again, necessary evil.

It's part of our new routine. I am treating them as a routine doctor's appointment. We have to, this is going to be their routine. I don't want them to live in fear of doctor's or cancer, I want them to be aware. We'll be starting in November. Of course my concern was that both my dad and brother were diagnosed in November and I may be tempting fate- or I may be relying heavily on my angels to come through. There never will be a 'better' time.

The psyche is a funny thing. I never understood the bury your head in the sand approach until I was about 2/3 the way through my dirty dozen. The dirty dozen is what I refer to as the tests reccommended for screening as adults. It includes a routine physical, bloodwork, a gyn appt, dermatology appt. endoscopy/colonoscopy, Mammogram and abdominal ultrasound . It's A Brain, spine, breast, and screening MRI. And last but not least the PET scan. For those who have asked- isn't there a test for cancer yet? The PET scan is the closest thing to it. It's not useful in children due to the way it works. You are injected with radioactive glucose. It's low dose- really short half-life. The idea is that glucose(sugar) is taken up more quickly by rapidly multiplying cells- cancer cells are rapidly multiplying cells. In kids- too many of their cells are rapidly multiplying since they are still growing. This is the test that put me over the edge. The test itself is like a standard MRI or CT- a little bit trying for your average claustrophobic, but it's the hour of complete motionless, quiet time you are forced to endure after being injected with radioactive glucose. Time that you pray for every day suddenly becomes a curse as all you can do is pray for an hour that none of your cells latch on to that glucose. It became abundantly clear to me that I wanted to live. Not in the live or die sense, but that I didn't want my life to be on hold for all these tests. The stress alone of them could take months if not years off the big picture. I don't want my kids to go through that. Experience is ever enlightening.

The best answer I've found is to treat this as normal. No sense in treating it like a major production if it's something that's got to get done. Getter done. It's more of taking life philosophy and injecting it into the situation. Everyone has a routine that works for them. Each routine includes things we would rather not do, but have to nonetheless. This is part of our new routine.

Cancerversary

2009-10-08T11:49:00.000-07:00

Lily has survived cancer for one year today. 365 days ago, Lily, Phillip, and I walked into an ultrasound and came out with the weight of cancer on our shoulders. There were moments that time stood still and tomorrow couldn't come fast enough. Yet here we are.

A few months ago, I thought about this day. I thought...we are going to throw a big party and celebrate. But here I sit not so sure I want to celebrate this day our lives were changed forever. I am not so sure I want to celebrate the thing that made this year the toughest year I have ever had- and I've had a couple really tough years. DO I want the kids to celebrate this thing that put a cloud over their year? Do I want Lily to celebrate the thing that caused her so much physical and emotional pain? As we plug along finding our normal again, I'm not so sure I want to celebrate something that takes us back to that day. Had I not been adamant that something was wrong, Lily may not be with us today.

And then I think, why shouldn't we celebrate? Lily is a survivor. We are survivors. We live on with the disease and embrace life. We celebrate life. Cancer is horrible, but no one lives forever. Accidents claim loved ones every day. Other diseases and sicknesses ravage people all the time. If anything, Cancer is a reminder to tie up loose ends and keep them tied- you never know when that knot will become your life line. But like any other anniversary or celebration, is one day a year enough? Why not celebrate everyday? As any survivor will tell you, reminders of the disease are everywhere. Pink ribbons, yellow bands, lemonade stands, and fundraisers. These reminders are symbols of survivors and memories of fighters in a battle that is far from over. We walked into Chili's a week and a half ago and every wall, the back of every booth, and every window was covered in colored chili peppers. I had to fight back tears because every chili pepper represented not only a generous donation to St. Jude's but someone whose life had been touched by a survivor or a fighter.

So, I've taken a few moments and reflected. Cancer is part of our lives now. But it will have to wait in the wings for now- we've got too much living to do. I think the best way to celebrate today is to have a regular average day. Have you hugged a survivor today?

Heigh Ho, Heigh Ho...

2009-10-07T17:02:00.000-07:00

The kids are watching Snow White, so I have just a few minutes to rest. I have countless entries sitting in a queue. They tend to drone on and on about trivial stuff. It's not very entertaining. The good news is that is much appreciated. For now I will have to make up entertaining stuff and that is Ok by me.

Lily had her hearing appointment. Her hearing has not gotten worse. Yea! She also had a flu shot and blood drawn, and the flu shot was way more traumatizing than anything. She is round and bubbly and I am just enjoying having Lily back. There are major ups and downs and some residual goop from the past year's exploits- but all in all I think we are fairing pretty well.

Our first roadblock to tackle (and in Lily's case, retackle)was night-time potty training. I am furiously knocking on wood as I announce we are done potty training. That is to say, I have been trained to not give them fluids after a certain time, ensure they void all liquids before bed, and not worry about losing sleep over bedding changes. I do believe that kids potty train when they are ready. I believe that most kids will be 3 before they are ready. More often than not the training that occurs before hand is that a parent is trained to read the cues and usher the child into the loo. Either way, when both parties agree on readiness, training is complete. In our case, we ran out of bread, milk, and pull-ups. Night time potty training took a seat on the backburner a year ago. I asked the girls if they were ready to be big girls and sleep in their under wear. They agreed. That was a week ago and every morning they have woken up dry. I'm sure we will have our moments- but all will pale compared to trying to keep Lily dry and hourly bedding changes through chemo. And That is my excitement for this week! Yea!

Medically Speaking....

2009-09-28T12:05:00.000-07:00

I wish I could get organized. I figure if I ever get organized or finally accept the chaos as my own, I will be moments from death- so for now I go with the flow and try to find balance.

I have gotten the kids caught up in school, (not too tough considering of the 10 school days they missed- they only missed 5 days of school) celebrated Phillip's birthday and planned my first homeschool preschool lesson. One of my neighbors, a friend and I have decided to attempt our own little co-op of preschool once a week. We alternate weeks. I decided to throw Bella into the mix so I get 2 days a month. Not seemingly a big deal. On the cusp of what I refer to as standard Hawaii School Board idiocy- I am feeling fairly animositastic towards the school system. You can tell my level of annoyance by number of words I make up. You get what you pay for and unfortunately for students in Hawaii- that's 3.5 days a week of school. The teachers have been furloughed for most Fridays to meet the budget. Great plan. How bout we furlough teacher meeting wednesdays? Time to triage. How bout we furlough all the school related BS that's not directly related to providing children this thing called an education? Hard to plan the swim forward when you don't have the strength to tread water.

I have already come to terms with the fact that I have to supplement my children's education at home if I hope for their education to meet my expectations. It's that or get a really good job to put 4 in private education. But I'm a proponent of- if you want it done right- do it yourself. I don't want it done right enough that I undertake ALL of their education. That's sheer insanity. Plus, With a rare exception, the kids have been lucky with their teachers- which allows my to overlook the administrative corpses that stink up the building. The Hawaii School board birthed a mentally and physically challenged school system and left it in the corner to drool while teachers, parents, and students gently sneak it food and hugs- trying to keep it alive. I think many schools across the nation face the same treatment.

As is the nature of the world. There are those who chose to turn their back on the child, saying it is a substandard specimen. Instead they purchase an education, because they have the resources- or find the resources by sacrificing other luxuries. Like everything, education is a luxury paid for by the desire to learn. You can accept a handout, but you must realize- it will not be a 2 or even 3 course meal. There are those who accept what is given and are grateful for even that, aware than in many places a mere slice of bread is considered a hearty meal. Some bring a little meat, others share their cheese and before you know it- the meal has been transformed. It may not be a Monte Cristo- but that really is just a sandwhich soaked in fat and fried. You feed that to the child in the corner, and it will get sick. Some don't have the money to buy meat or cheese, but offer to take the time to feed the child, that time is all they can spare. Those providing the meat and cheese are grateful, for they don't have that time to spare. It takes a village. Sometimes access to the child is blocked or becomes difficult. It is during these times that is we work together for what is right- the child isn't left to starve in the corner because it's parents are self centered fools.

Along the same lines we have this healthcare hubbaloopitydoo. I don't know enough to spew a nicely thought out metaphor, analogy or opinion. So I won't. I will say though, that I have been asked by 2 different departments within the hospital to speak with their residents about how to treat patients and what patient expectations are. I have said before- general care within the military realm is mediocre. Once you get into the specialized care circle- it's a whole different world. If you don't like conveyor belt health care- I suggest you get really diagnostically ill- generally a life threatening but not terminal condition and you will get the best care. Triage. If you do something insane like bruise your pancreas- you will see a constant flow of specialists and curious onlookers - which will provide you the audience who can diagnose the underlying problems. Don't think that universal healthcare will be any different. You want to pack up and go see the BEST- that's fine, but you will be paying for it-privately. You want to try your luck with Dr. Schmo - who is perfectly qualified and way over tasked- you will be just fine- but don't expect that extra warm feely because he just won't have the time. There will be up sides. But the grass is ALWAYS greener. That won't change. Until a little more common sense prevails...there will be BIG problems. You can't have everything and pay for nothing. If you get everything and paid nothing- it was given by someone else who makes the rules. You either follow their rules or make your own money to buy your own stuff and then you get to make the rules. Kinda like being a parent. You can teach a child to fish- but as long as they are fishing in your pond- it's your fish. You can give them all the fish they catch- but then why would they bother to go fish anywhere else? Ahhh welfare.

I don't know the answers. I don't think any one thing will fix these problems. I don't thing that any one thing is THE solution. You definitley can NOT please everyone. I don't know how many old adages I can squeak in. I do know that some of the greatest minds are trying to work it out, even if it means that nothing is getting done. I do know that if the current system isn't working, it's better to try and find something that will work. If at first you don't succeed...right?

Happy Birthday Phillip!

2009-09-22T10:18:00.001-07:00

Ten Years ago today, I fell by chance into the greatest interview of my life. I spent months preparing, nauseated by the enormity of it.

It was a sunny morning in Del Rio Texas, a dry desolate place that had become my temporary home. The interviewer was late. A week and a half, late. I was losing patience. I waited anxiously in the sterile meeting room.

We called the interviewer, begged him to come to the meeting. After much cajoling and extraneous help, he finally found his way to our meeting.

I knew we would be a good fit as he fell into my arms. He was still angry from the uncomfortable conditions of his journey. As soon as we began to talk, he knew I was the one. I knew that there would be a lot of work involved in this job, but his gentle way assured me that the perks would far outweigh the struggles. Not only did this job become my life, it became a career and eventually a cause. We have expanded 3 times and each time presents new challenges and benefits.

Today we celebrate the 10 year anniversary of when I met Phillip Robert Mallory. The big surprise that guided us onto the path we were destined to travel. And we wouldn't change a minute of it. Well, maybe a couple- but the end result would still be the same.

Happy Birthday to the 2nd love of my life. Whoever said there could only be one guy for every girl, was not the mom of a sweet boy!

The Wild Side of Disney

2009-09-21T15:36:00.000-07:00

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It's Notazoo! You can ride a safari- coast to the top of everest and do nature treks, Disney style! Again the weather was not on our side when we were at Animal Kingdom- but we didn't let it slow us down. We decided the rain pelting your face on the Everest Roller Coaster added a cool realism to the ride. The best thing to do when it rains at disney- is go with it and consider it one of their 4D effects. Plus a lot of the crowd clears out and it actually is cooler.

We got to visit with a lot of our favorite characters including Lilo and Stitch. We didn't know how big of a Stitch fan Bella was until she started hugging him and wouldn't let go. We have often said she is stitch in her own right- but when he took her hand to take her to get an iced coffee- we knew they were 2 peas in a kukui nut pod. Of course we stopped their escape, but it was funny none the less.

Just Keep Swimming....

2009-09-20T14:01:00.000-07:00

Yeah, we went to Sea World too. I'm not crazy about the fishy scene. Don't care for the smell, not a big fan of wet n slimy. It's just me. I know, I know. I've gotten the looks of horror when I say it. I'm not disrespectin those who love the swimmy kine- I am just not one of them. Apart from Dori n Nemo. But we were gifted tickets and it would have been a shame for the kids not to see it because it's not my cup o chum. I'd have to say that it was a lot more fun than I expected. The kids liked the show, the best part was watching Bella use half of my supply of wet wipes to clean the bleachers. Guess she sides with me on the fish front. She also wanted no part of feeding the dolphins, nor did Kiera. Yeah, that would require touching fish, dead fish, but fish none the less. I had to walk to the other side of the feeding pool. Good spot for pictures too.

There was a great kiddie ride area. I liked that all the lil rides were clustered so one of us could hang out with the girls while the other took Phillip to ride the big rides. It was a good day.

The down side was that I couldn't eat the entire day- the plus side was that there was a Chick Fila on the way back- AND it was date night at GKTW(which they call Kids' Night Out) so Phil and I snuck out for Olive Garden. It all worked out swimmingly.

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Yo Ho! Yo Ho! A Pirate's Life for US!

2009-09-19T10:33:00.000-07:00

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In honor of Talk like a Pirate Day! Arrrrrrrgh!

Treasure Abound! Shiverin our Timbers at the Pirate's ride and Party at Give Kids the World. Logged a lot of time at the Pirates of the Caribbean Gift shop- go figure!

POOH Corner!

2009-09-18T19:20:00.000-07:00

This one was really fun! I hadn't realized how much Baby Pooh and Big Pooh got to tag along. We first saw Pooh in Animal Kingdom- down a windy path in the woods. We were early and were on the way down the path when we heard footsteps behind us- sure enough it was POOH! Lily ran to him and started telling him all about her trip and she was on a plane and her best friend was Maggie. He nodded the whole way.

The second visit was at Epcot in a store in Great Britain. The Beatles began playing outside and the girls got to dance with Pooh and friends!

Most days we either had Big Pooh or Baby Pooh with us. They got plenty of hugs and kisses from characters we met along the way. The best was- and you know I've been dying to say this...Mater ate Pooh!

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Universal Fun.

2009-09-18T12:39:00.001-07:00

That Mallory fam, That Mallory fam.
How so they enjoy green eggs and ham.

To Universal they went, to find the Cat.
And there they found him with his giant Hat.

And Sam, 2 things, the Grinch, and the whole fish set.
Don't ride One Fish Two fish, unless you want to get wet.

A Seussian Carousel, went round and round.
And then onto a train, high above ground.

Oh the places we went, oh the things that we saw.
Over to to see spidey, who enforces the law.

Wolverine, Captain America and Cyclops stood near.
Phillip rode the hulk roller coaster without fear.

Through a park, of the Jurassic kind.
We flew like pteradactyls, up in the sky.

A great dinosaur roar, made Bella's feet race.
Mom had to chase her across great space.

A chat with Donkey and Shrek.
So many places to trek.

Curious George and the man dressed in yellow.
Turned out to be a quite nice fellow .

Scooby dooby doo and his pal Shaggy.
And visiting with the Simpson family-especially Maggie.

Oh the places we will go, Oh the things that we will see.
We had so much fun, Universally.

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The Princess Diaries

2009-09-16T17:36:00.000-07:00

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Our first full day in Florida, we went to the Magic Kingdom. We no more than get into the park, and it starts pouring. Not Hawaiian kine- wait three seconds and it will pass, but good old Florida downpour with no end in sight. We take advantage of the sheltered lines and ride the important rides- Peter Pan's flight, Pooh, It's a Small World and then we head towards Toontown where I know there is a tent with characters. There used to be 2 lines- one led to a room with the princesses, the other friends from Pooh corner. We finally make it to the tent. No strollers are allowed inside and it is literally raining sideways. We stow the ponchos and completely cover the stroller with another and Phil makes the dash out to the "stroller parking". I notice that one line is for the princesses, the other is for Tinker Bell and the Fairies. The wait listed is 70 minutes. Ugh. The line attendant sees Lily's Make a Wish button and ushers us through. We walk right into a circular room with three satin draped areas of different colors. Cinderella waltzes up to Lily and says " What took you so long? I've been waiting for you!" and leads her over to her special nook. At this point I am still dripping from the rain and can wipe the tears away without notice. The kids are all visiting with different princesses- there is no way I can capture it all. I stick with Lily who is chatting Cinderella's ears off like they are old friends. One of the cast members is quietly instructing Phil on how the visit will go, where we will go after to see more characters and giving him this photo pass which is a credit card thing that photographers all across the World scan after taking pictures and put all of our "professional" pictures into the system that we can look at at our convenience- Brilliant. A machine I tell you. I notice Phil has that look he gets when the Broncos are on and I try to talk to him. It really is a different World at Disney. Some people don't get it. We are Disney people. I think Phil is vying for his turn with Cinderella. I'd bother feeling jealous if my emotions hadn't already been maxed out- but let's face it I wanted a turn with Cinderella. The cast member has ushered out all the other guests and is gathering the princesses together. He turns to Lily and says- we have a special treat for you. She climbs up on Cinderella's lap one of the photographers snatches my cameras because like I said, this doesn't happen, it's a magical place and I got a little verklempt. Then the other kids all get a turn and then all 4 with the 3 princesses.

After our visit, we are guided into Tinker Bell's forest with her friends Fawn and Silver Mist. The wait to see her is over 70 minutes long and we are taken right in the back door. It's a strange feeling. It's wonderful not having to wait. I hate waiting in line. And mostly when I saw the wait time I figured we'd see the princesses and skip the Fairies because it was just too long. And I guess that is the point of the Access Pass, because they know many of us practical parents would skip the wait and move on to something else so they don't want the wish kids to miss out. Plus as a good friend put it- we spent our time waiting in the hospital- it balances out.

Bella loves Belle, but until then I had no idea how much she loved Tinker Bell. As the kids are hugging and chatting with her, Bella is practically vibrating. She is doing the hoppy dance she does when she is excited. Finally she spots an opening and grabs onto Tinker Bell's leg like it was a life raft. Very cute.

We did the princess breakfast experience. Usually Snow white is tough to find, but with the dvd being released in October, she's everywhere. We also got to see Ariel with her land legs, and the same Cinderella we met with on our first day. She remembered Lily and was incredibly sweet. Phil and I had much discussion over how they choose the princesses. Cinderella is the Alpha princess as Phil calls her. The PIC(princess in charge), he was amazed how the other princesses would step back for her. They are generally beautiful, but we did see one Ariel and one Alice that gave us the shivers but then they had the perfect voice and mannerisms so I guess it works out. Except for pictures- because you just don't hear the perfect voice in the picture. The only "princess" we didn't see was Mulan and we scoured China at Epcot doing the Kim Possible experience mission thing.

Giving Kids the World

2009-09-15T22:32:00.000-07:00

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During WWII, Henri, a small child and his family were imprisoned in concentration camps such as Auschwitz. Only he and his sister survived. He spent years starved and maltreated. He finally escaped and immigrated to New York after the war ,where he began working in hotels. He ended up managing the Starlite Hotel, becoming friends with Apollo astronauts and through a series of lucky encounters, made a comfortable life and embodied the spirit of the American Dream. Henri always helped less fortunate souls, having been helped numerous times himself during dire circumstances.

In the 80's. Henri Landwirth was woring in a hotel in Florida when he heard the tragic story of a little girl named Amy who died while waiting for a room to open up for her Make A Wish trip to Disney World. He gathered donations from his friends and partners and vowed not to let this happen again. Give Kids the World was born.

Families who stay at Give Kids the World are fed generously because Henri remembered the horrors of being starved. Travel arrangements are made, all creature comforts are provided so the family can focus on having fun. Tickets to local theme parks are generously donated. On site there are multiple options for food an entertainment. Everything is kid sized and decorated for pint sized amusement. A huge carousel sits under a mushroom cap, attached to a Castle of Miracles. Inside the castle, there is a salon for girls to get manicures and make overs, boys can get tattoos or face painting. A magical well grants wishes and each wish child who passes through writes their name on a star that will shimmer on the ceiling for all future visitors.

Each night a different theme is celebrated with the village mascots, the Mayor and Miss Mary. There is a birthday bash, Christmas party, Pirates and Princesses night, Parent's night out and Village Idol. There is an ice cream parlor open all day. There is a theatre, complete with popcorn, ICEEs and treats. The Amberville Train station has not only a kiddie train, but a miniature electric train city with endless buttons to push. There are rides, arcade games, pool, and bumper boats. There is a mini golf course, a pool, and a stable with horses. Henri's only wish is that families have the time of their life and no strings attached. A major corporation offered a million dollar donation but wanted a plaque in each guest villa. Henri said no. No strings attached. He didn't want recognition or publicity. The Village is staffed, cleaned, maintained by volunteers.

I had not ever heard of Henri Landwirth or Give Kids the World, and that was purposeful. Major corporations and small contributors do so anonymously. That is the spirit of giving. Families like ours are not asked to repay anything. Not that we could, the gift was priceless. Watching Lily write her name on the sparkly little star and putting it in a special box for the Star Fairy who hangs it on the ceiling of the castle while we slept. Knowing that there were so many before her, who wrote their names on their stars that twinkled above our heads. Knowing that many of them lost their battles, yet their memory shines on. They all leave their mark.

Like Disney, Give Kids the World is a well oiled machine. Run by the dedication of good people who spend their time helping others. Phil and I agreed that when we are able, someday we'll go back and volunteer. On another note, every year I see the thermostat thingy ma doodle at the gate to base with the words "Combined Federal Campaign" on it. Never really gave it much thought as I was trying to get through to the commissary with screaming toddlers. I asked Phil what it was about and he told me it was a charitable donation program. Since we donate to other causes, we usually don't contribute. I figured it had to do with base programs and such and wasn't really sure where the money went, but it is so much more. I know that the next time the sign is up, we will be helping out because the Combine federal campaign sponsored our Make A Wish trip. So if there are those out there like us, who weren't sure where the money goes and hesitated to donate...don't. It truly does make a difference. If there are those out there who have contributed, thank you.

Back from Never Never Land....

2009-09-15T07:14:00.000-07:00

What an amazing trip! We successfully acclimated to the Florida time zone, so when we arrived home last night- we promptly went to bed. This morning my little Lily ray of sunshine woke me up at 3:20 am, starving. Now that I have the little ones fed- I can try and catch up with blogging.

Every afternoon when we were taking our mandatory rest(read as collapsing into the air conditioning and summoning energy for dinner) I thought about downloading photos and blogging and usually got as far as downloading photos...I finally decided that blogging at home would be a good way to recount our amazing travels and give me time to organize(and select from) the thousands of photos we took.

I gave Phillip our old camera and he was really into taking his own pictures. The girls each got a disposable camera, which they filled the first day in line waiting to get into Magic Kingdom. I am very impressed with Phillip's pictures. It's like seeing the trip through his eyes and he captures things I didn't even think of which is really interesting.

The first week we stayed at Give Kids the World and kept busy because in addition to going to the theme parks, there were always fun activities there to participate in. Every afternoon when we arrived back from the parks there would be presents waiting for the kids in our villa. We ended up filling a whole duffel(the big green military kine) by the end of the week. The second week we stayed at the new Bay Lake Tower by the Magic Kingdom. It was fun to be able to just walk to the castle, although getting to the other parks required taking the monorail or a bus. I think the toughest part was just not having enough energy to go go go, but we definitely got to do the things we wanted to. Lily took a couple of days to adjust to the change. There were some tantrums, and it's tough to publicly discipline a child wearing a big make a wish button as onlookers stare in horror. But we definitely got to reconnect and spend some great quality fun time with each of the kids. Each child got to pick things they wanted to do each day. Lily and Phillip always picked rides. Bella liked seeing characters and swimming, which surprised us- we figured she'd be terrified of the characters, but she loved them. Kiera wanted to shop. That was the hardest request to fill. It's not like there are a shortage of shops, but the actual act of shopping for things when there were so many fun things to do- was the tough part. She was mostly afraid of rides but by the end we had dragged her onto so many she had gotten into it. We even got her on the new Everest roller coaster at Animal Kingdom. With a huge duffel full of presents, I didn't feel the need to shop for anything. Phillip saw a light sabre he had to have. After completing Jedi training at Hollywood studios- we began a long search that ended steps from where we stayed. The other elusive item- a Jasmine costume in Lily's size. We finally found the sabre in a light cart in MK, the Jasmine costume will have to come by mail.

We all now have colds, which is unavoidable I think being around that many people. Today I have to get some groceries, get the kids caught up in school and put away the 5 things that Phil didn't already unpack. He was the only one last night who didn't crash immediately and I woke to find the bags unpacked and anything he didn't know where to put categorized into piles. Love that guy!

Oh bother!

2009-09-05T14:47:00.000-07:00

Hello from sunny Florida! Our trek across the ocean and the continental us was interesting and a good reminder why we don't travel by air more often. Upon arrival we immediately were offered a trade in residency with a volunteer here and we are very tempted to take it. Give kids the world is astounding! we are in the new fairytale houses right across from an amazing playground with a life size candyland game.

We have been to magic kingdom, universal studios and animal kingdom. we,ve visited with some of lily,s favorite friends including pooh! We had a very special visit with Cinderella, belle, and aurora. I got a little verklempt and one of the cast members had to take my camera lest I take blurry pictures. Every night here at the village there is a special event, tonight is a huge birthday party. We are exhausted from the fun, which is a much better feeling than the alternative!
We don't have internet in the house here, so when I get a chance I will download pics or instruct Phil to! He's been up at 5 every morning checking on work. He has been chastized and now claims he is checking up on fantasy football. I apparently got Ocho cinco and mcnabb. Chiiiile please. I might as well kiss the baby now.
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Training: Exercises in Parenting

2009-08-30T22:32:00.000-07:00

Phil is currently creating his Disney Trip mix: he who knows Buddha knows that life is a series of mixes. It is surprisingly techno from what I have heard- a bit heavy on the Hannah Montana for my taste- oh wait that was Kiera's mix. Never mind.

The other night after bathtime, Kiera comes downstairs-her shirt streaked with blood. I do the initial scan for the source. She has 1 earring in, one in her hand, dripping with blood. In the past few weeks, Kiera managed to lose all but 3 of her earrings. A copper pair(mismatched, Sophia made her 2 sets, thee are the remains) and a single lonely post earring without a back. She decided this particular evening that it was time to put earrings back in after a short respite(meant to read- weeks, possibly months). Kiera's ears were pierced on her birthday- In April. Her holes had obviously healed. She tried to repierce them. As I looked at the situation, Blood was dripping down the "successful" side.

I retrieved the bottle of rubbing alcohol and proceeded to try and disinfect her as much as possible. All the while she is crying, not because it hurts, but she wants to wear earrings. I agree to buy her a new set of stud earrings, put them in, and she will probably have to wear said set until adulthood or she decides to be responsible, whichever arrives sooner.

So Kiera goes to spend her Saturday with her adoptive family and we run through a lengthy list of errands. Lily decided she needed to wear a jacket and pants, and about an hour into the session- I realize she is dripping buckets of sweat and her mood has deteriorated and she is laying on the floor in the mall refusing to communicate. I ask her if she wants to help pick out Kiera's earrings. She says she wants earrings. I agree to get her off the floor. We go into Claire's at which point Phil asks Bella if SHE wants earrings. She does. Like Kiera's. Phil and I look at each other and shrug- if a hole in a child's stomach heals in a couple days(+ or -, sort of- ball park reference here) two little holes will be fine in Bella. Bella did not witness Kiera's piercing, she has no idea how it goes down. Right up until the little white guns shoot earrings into her little lobes and she lets out a blood curdling shriek- I think one of the mirrors broke. Phil grabs her as one little tear streams down her cheek to check out her blingy new reflection. All is forgotten.

Lily wants 'earring aids' too. We tell her she already has them. NO! she demands Earrings! Ok, climb up. Is it going to hurt? -Yes. A lot? No. it's a quick hurt, like your port. I don't want to. Ok, let's go. By the time we pay for Bella's earrings, Lily has developed a twitch, waiting for someone to spear her earlobes. Yet by the time we are out the door she wants earrings again. Now. We turn around. No, maybe not. The result was 40 minutes of her screaming in the car about how much she wanted earrings, followed by her passing out on the couch. Phil and I weren't technically sure she is allowed to have metal spikes in her ears yet, but again applied said hole into stomach reasoning this morning when she woke us up demanding earrings because we might have mentioned something yesterday about going tomorrow as I was punching a hole back into Kiera's ear. SO we pack up the troops and do round 2. I tell her if she chickens out- she will have to wait until adulthood to get earrings. She tells me- I sit in your lap, go OWW! and then look in the mirror and I have earrings, right? right. Ok.

She climbs up in my lap. The lady asks which ear he wants. I say- SHE wants both. Unfortunately earrings will do nothing in the way of decreasing gender confusion for Miss Lily. The lady is confused. She proceeds anyhow. In her defense, the only information given in addition to the 12 signatures required to get a child's ears pierced is their name. Pause. The review the paperwork carefully. Pause. And the child sitting there has a deep purple velvet dress on and purple and pink hearing aids. Pause. We carry on. Lily says ow! And daddy takes her to see the result and all is forgotten. Now I have three little sets of earrings running around looking at themselves in the mirror. Actually, Bella and Lily have completely forgotten they have them until Kiera sees theirs and reminds them that they need to clean them and they can't take them out.

I am excited that my next blog will be from sunny Florida! In the event that any ears end up infected, I will erase all evidence of aforementioned proceedings....

Make a Wish Barbie

2009-08-25T23:00:00.000-07:00

We had a special visit this weekend from 2 very special volunteers from the Make a Wish foundation. They came to personally grant Lily's wish to go to Disney World! They brought balloons, a special Make a wish bag, t-shirt and button and a very special edition Make A Wish Barbie. We were given our itinerary and travel information and will be staying at the amazing Give Kids the World resort for a week of our trip.

As always Phil and I are completely blown away by the generosity of this gift. Travel arrangements, car, lodging and food as well as tickets to the theme parks for a week for six of us- the only questions asked were what are your birthdates(needed for airline purchase) and any special needs? EVERYTHING is taken care of for us. It is amazing. And overwhelming. The only expectation of us is that we have have the time of our lives. It's astounding that for 2 organizations who you rarely ever see soliciting donations, continually give so generously to families like ours. The gift is not prorated on our financial circumstance, no strings attached. It is a gift. Until we were awarded Lily's wish, I had never even heard of Give Kids the World. A resort for kids like her. We wanted her to be healthy enough to really enjoy this. Another part of me fears that since she no longer looks sick, we might feel like we don't belong. Someone asked me once if we had to pay Make a Wish back if she doesn't die. My first thought was - I'd be happy to pay them back 3 times over if she doesn't. But Make A Wish is very clear- these gifts are for any child who has faced a life threatening illness, it does not have to be terminal. I will again point out that life is terminal. So I started researching Make A Wish trips. I wanted to know what to expect. And just like researching Lily's illness, sometime too much of anything can be -too much. I read families' stories and blogs, one woman used the word nightmare 8 times in describing their trip and from what I could tell, the worst part was that it rained while they were there and their "free" accomodations weren't as spacious as they'd have preferred. The paperwork clearly points out that Make A Wish Foundation can not control the weather. Another woman's child began to decline quickly while they were there and had nothing but a positive attitude and praise for their trip. In one QnA, a cast member(Disney employee) when confronted with a tirade by a woman in a wheelchair upset that a Make a Wish child got front of the line priveledges and she did not ,answered; the upside to being a wish child at Disney is that you get front of the line priveledges, the down side is that you have to have cancer. I laughed so hard at this answer that I started to read it to my husband; I was about halfway through when I began sobbing. It has become such a part of our lives, that we forget it is not normal. We're in Cancer purgatory. We see normal which seems like heaven, yet part of us will always be worrying if and when it will be back, tying us to the cancer. I'm looking at this trip as our unfinished business. The birthdays we had to skim over last year, we will celebrate. The times we were too tired to go to the park, or we couldn't go out to eat because Lily was neutrapenic- we will get our chance now. The holidays we were too tired to put in the extra magic. We have been given such a precious gift. The chance to be together. 11 months ago, I laid next to Lily in her bed fearing she would be gone before I was ready to let her go. Now I know that I will never be ready to let her go. I know that if she goes before me, I will never be the same but I will go on as I expect others to go on. We gained perspective on life and love that many don't learn, until it's too late. We get tired, I still yell, we make mistakes. This is what we fought so hard for.

As Lily demanded her special limited edition Barbie be taken out of the box, I didn't flinch. It occurred to me that Barbie dolls are like children. If you leave them in a box, they might be protected and stay clean, but never realize their potential. So much more can be attained by playing with them, loving them. They might get scuffed up and their hair will get tangled and sometimes cut in a strange fashion, but they are still the same doll. And even though it might be nice to let someone else play with them every now and again, you still take them home and tuck them in, loving them more with a fresh perspective.

2nd Belly Button

2009-08-22T11:20:00.000-07:00

Fortunately Phil has been home for bath time the past 2 days. He took care of bandage changes. There really hasn't been any leakage. Lily's been eating normally and even went swimming with her bud Maggie yesterday. She let me take a picture so you could see. It is now referred to as her 2nd Belly Button. It really is, if you think about it. Looking at it still gives me that crawly feeling in my stomach, but it is healing nicely.

ICK ACK EEK and UCK.

2009-08-20T18:37:00.000-07:00

Today was a big day. BIG. HUGE. Lily got her button out!

Tuesday night we got a call from the automated appointment system that Lily had an appointment on Thursday. It would be TOTALLY useful if they would include WHERE said appointment is, so Wednesday I called the appointment schedulers to see. It is with her endocrinologist. I have this overwhelming feeling I am forgetting something so I also call Florence at the Onc clinic to see if there are any orders or notes or anything in Lily's file that says I should be doing something. She laughs. I guess I am officially in the getting back to normal phase- which includes forgetting things. I have less to keep track of, so I forget to write things down. I think- sure 1 appointment, surely I can remember that. Apparently not.

So we mosey on into clinic-say hi to the fan club. Get vitals taken, visit some more. Dr. P jokes that we are having entirely too much fun at the hospital. I tell him- this IS fun comparatively. That earns me a hug. We go to see the endo doc. Everything looks ok. Lily hasn't grown at an astronomical rate. She hasn't gained weight, but she is more active and is eating fine. Lily and Bella are having a carpet picnic of Doritos and Juice boxes while we talk. Did I get the labs drawn? Aha! That is what I forgot. She is easy going- just get them done next time she's accessed. How's 10 minutes from now? Perfect. Yea.

Back to the other side of clinic. Lily was a champeroni. She laid for the accessing and just held my hands. Miss Angela- one of our fave nurses was fabulous. I was stressed that Lily wasn't bundled- but it was one of those situations where you raise the bar and they clear it and you wonder why the bar wasn't there all along. And then you remember the last time she kicked the bar clear off and we said- maybe next time. SO her doc pops in and checks her out- let's get the button out.

Um. Ick, ack, eek and uck. But doesn't that require stitches and she needs to be swim ready for Disney World? Apparently it requires taking the button out and a band-aid. My stomach is churning. I can deal with bodily fluids. I've cleaned them all up. Puke, poo, blood, pus- the gamut- but open access to the stomach and it's contents grosses me out. My knees already feel wobbly. Miss Flo calls a surgeon to double check, yep pull it out, put a band-aid on it. If it's still oozing in 2 months, we'll stitch it. 2 months! YGTBSM! Ick, Ack, Eek and Uck . Florence assures me that stomach contents should only leak for a couple days. No no no no no. That will not do. I am given special dressings for swimming. Swimming? But there's a hole in her stomach. No different than swallowing pool water. It doesn't increase her risk of infection- it's just that pools frown upon people swimming with open sores. Really? Ya think? Ick, Ack, eek and uck. Here's me frowning at my daughter having a open tunnel to her belly for days.

Lily is climbing up on the table and laying down. C'mon mom! It's pretty impossible to hold her hand and not watch. The tube comes out, as she breathes the little hole closes and opens. She laughs when she realizes it doesn't hurt- a piece of orange oozes out. Oh god. This is heinous. Ick, Ack, Eek and Uck. It's gonna be a long time before I'll be able to eat Doritos. Lily won't let Florence clean it- she wants me too. I DO NOT GET PAID ENOUGH. So I am relegated to cleaning off day old belly boogers mixed with Dorito digest all the while the damn hole keeps winking at me. I get it clean enough that Flo can slap a dressing on it and I can pretend that my daughter's stomach didn't just wink at me. When the nausea passes we will celebrate accordingly.

If you are interested in the procedure. Here's an at home demo of a little girl name sadie. It is way simpler than one would guess. And a lot more disgusting in person. But yea LILY!

http://www.youtube.com/watch?v=2lbwypqyPLk

Silly Lily

2009-08-15T21:42:00.000-07:00

A friend sent us a care package all the way from England! Inside was a special poem just for Lily that I have to share..

There once was a girl called Lily...

Who's hair was all wild and Frilly...

Whether up in a 'fro,

Or a hawk of faux...

She ALWAYS looks Stylish, not Silly!

This very special lady and her husband came into my life a few months back. I was searching for answers, looking for statistics to calculate Lily's prognosis. Trying to make order out of the chaos that was my life. All the papers said this cancer was very rare and had a poor prognosis. I had been talking with my cousin who casually mentioned running across someone online who had Lily' tumor when she was little and also has LFS. I immediately asked her to pass along my info. I had yet to find an adult survivor of adrenalcortical carcinoma. I read the scientific papers, I joined the pediatric ACC group online. One paper mentioned 1 survivor at the ripe old age of 28. I Found a couple survivors in their teens which was a positive. All I really learned was that this was indeed rare and the prognosis was poor. I wanted to know what to expect. 'You can't always get what you want, but sometimes....'

This lady is amazing. We chatted by email, then instant messaged and finally had a "proper" conversation via skype. She is one of those people that as long as I live, and probably after- I will be glad our paths crossed. She is real, and inspirational and knowing her gives me hope. Her life has not been easy- she has faced cancer after cancer for 31 years of this uphill battle that we who have this mutation share. But she has hope and she loves life, embraces love and she has a spirit about her that is kindred to me. She reminded me that there is a person behind every statistic. And each of those people has a story.

So I have been wandering around wondering what now? Should we just float by day to day? Dare I make plans for the future? Should I start that book you all keep saying I need to write? Maybe I should clean my house? By aging 7 years in the past year, I have been thrown head long into a mid life crisis. By Connolly standards it's more of a 2/3 life crisis, but I digress. I realize that I'm hopelessly out of touch with friends and that facebook is a really crappy substitute for a phone call. I realize that last year my life came to a stand still and the world kept swirling around me. Now I have to catch back up. Part of me wants to know what the hurry is to catch up. I am here for a reason. Most days it's to play referee between my children. Some days I am tempted to let them fight to the finish and then I remember how hard we worked last year to keep them around. And so I intervene. Begrudgingly. Only to have to repeat it in 5 minutes. I look to my partner, my best friend, the love of my life- he has answers that keep the computers, tv, and phones running- but he can't get the children to behave either. We sink into the couch, ignoring the almost tribal yells erupting around us- gaze into each other's eyes and smile, and wallow in the normalcy we once craved. Basking in the every day nonsense that gives me the cause to ponder- what are you gonna do next?

I'm gonna go to Disney World. :)

BurgerKane...

2009-08-11T12:32:00.000-07:00

We saw multiple hurricanes in our years in the Florida panhandle. Kiera used to call them Burgercangs. She now calls them hurricanes and Phil and I still call them Burgerkangs. I get a good idea on how much prep I need to do based on what they do with the jets. If the jets leave, it's gonna be big enough to worry. The jets are still here. With the exception of the contingent still in Singapore- stuck due to the typhoons in that region. SO we picked up the backyard, yeah it takes a major storm to inspire that and got some extra food and water from the store. I learned in Florida just to keep a big thing of water and a Hurricane kit up in a closet- so there isn't really anything big to run around and look for.

I was folding laundry yesterday and Bella came and sat on a freshly folded pile, I really don't know why I bother. If you see me and my shirt looks like it's been crumpled under a heap- you will know I have finally given up on the cause. "It's gonna wain momma". Yeah probably tomorrow sweetie. "And wind is gonna blow." Ok. "I'm gonna be scary" It'll be fine Bell. That's her way of letting you know she'll be scared. She's nice enough to warn us when she's gonna be scary. You know she's scared when you hear the shrill scream. "Ok, love you too momma" and she ran off leaving a trail of clothes behind her.

Kiera was like a broken record- we need to watch the news. My teacher said. Mind you it's sunny and apart from 3 more clouds than usual- there is no hint of the storm coming. We took bets last night as to when they would cancel school. Phil and I recounted the number of times we waited for school to be cancelled with like 3 feet of snow on the ground and we still had to go. He's usually good at adding- and it was both ways up hill, in snow shoes. He's sooo my lobster. But the storm slowed to a tropical depression- so now it won't hit until later Tuesday. We still had to watch the news this morning with Kiera to make sure school wasn't closed. Again, sun was shining brilliantly even though there were some dubious clouds to the east- I wouldn't go as far as to call them threatening. I walked them to school. It's still sunny, Phil's capitalizing on a little extra surf and then he is going to take Lily to her Ultrasound while I go to the library and get the kids from school. The ultrasound is to double check her abdomen. We don't expect to see anything.

I'll let you know how the storm pans out. I was thinking this morning abut storm chasers. They had the hurricane trackers on the news. It made me think of the different types of people in hurricane prep terms. You have the chasers- who go flying into the storm to see how bad it is and see the damage first hand-they are in the action but merely observers. They let everyone know exactly how bad the storm will be, so they can prepare. After the damage is done they don't stick around, they are off chasing the next storm. Then you have the evacuees- people who see the storm coming and get outta dodge. They will come back eventually to pick up the pieces, that is of course if there are pieces to pick up. They will be safe. And then there are those who batten down the hatches, look the storm in the eye, some loyal, some reckless- all determined. They will be the first on hand to help clean up the aftermath. Of course there are always those who close their eyes real tight and keep saying "there is no storm, there is no storm". Just a thought. Jack Handey would be so proud.

No Evidence of Disease

2009-08-01T18:41:00.000-07:00

The official radiology report came out and Lily's doc called right away. I'm sure it had nothing to do with her mysterious 104 degree fever....but I was extremely grateful for the call nonetheless and moreso because of the results. There is no evidence of disease in her chest or abdomen. Yea! Rinse and repeat in 2-3 months.

Other BIG news- Lily is back to swallowing her steroid meds- which is hugely convenient. It means I can pack just pills when we are out and about and not pills, syringes, extension tubing, and bottled water.

Let the Disinfecting begin.....

2009-07-30T15:10:00.000-07:00

Right after I blogged yesterday, I looked over to find Bella curled up on the couch- an unusual flush to her otherwise pale pallor. Uh oh. I felt her leg, since her head was further away- and yep it was warm. Why is it instinct to feel a forehead? Is it becasue that's where our mom's felt? Is that because when you are all curled up that is the easily exposed part? The clinic calls and needs to see Lily, so I begin the babysitter search. I don't want to drag Bella into the hospital when she can rest. I take Lily into clinic and they cannot find a thing wrong with her. I, at this point, KNOW it was a bug because it obviously is contagious. But better safe than sorry.

Bella generally sleeps when she is sick. It was entirely too cute to hear Lily apologize over and over- I'm sorry I got you sick Bella. I'm sorry. Lily never threw up, but then again she hadn't had anything to eat for 24 hours when the virus hit her. Bella was tucked in and Phil and I went to bed early- both anticipating less than a full night's sleep. Bella was up by 1030, and then at midnight. Around 2 she just climbed in next to me and I had to remove the covers as she was steadily heating up and essentially panting- her little body's way of dealing with the bug. At 245 she sits straight up and demands to go downstairs- I would silently thank her later for this determination. I get her a cup of water and she immediately throws it up over herself. I don't think the water actually made it down to her stomach- but I throw her in the tub anyways- I need to get her fever down and she really won't be keeping tylenol down at this point.

The water cools her skin, she curls up on the couch and drifts off- only to wake every 20-30 minutes to dry heave for the next 4 hours. What's entertaining is how she feels the need to hop off the couch and do this bouncy little dance as she declares that she is gonna "trow up". I have to physically restrain her while she buries her head in the bucket and I can feel her little belly just heaving. "I don't wanna trow up momma." Obviously doing your little no trow up dance is not working so let's stay laying down. Some time after 6, the sun starts peeking through the window and I decide I must get some sleep. My head is throbbing and my stomach doesn't feel quite right- I nudge Phil as I crawl back into bed and he rolls out. I brief him on the need to restrain Bella when she declares she's gonna puke. I don't think he believed me. Oh well, he'll see. I'm just glad he goes in late to work today. When he comes back in, somehow what feels like 3 minutes is close to 3 hours. You were right, he tells me and proceeds to imitate Bella's puke dance perfectly. The puking has subsided, but she's demanding oatmeal. So far, she is still settling for water and keeping it down.

So much for the week of fun I had planned. The kids go back to school tomorrow. But don't you worry- they have next Friday off. Yep that's right, they go back to school on a Friday- and they have the following Friday off for a teacher work day. Must I comment further? It would make sense if they were given individualized school supply lists from teachers and then you would have a weekend to take care of it. I have to go check my inventory- but that's pretty much how it's going to be for us anywhoo.

The entire house has been lysolized and when we all end up with lung cancer- you will know why. Laundry is beeing processed and the rest of the cleaning will commence upon my completion here. Anyone wanna put money on when Phillip and Kiera will get it???

Wilted Lily

2009-07-29T10:34:00.000-07:00

The scans went well, if you consider constant nausea, headache, grogginess and a trip to the ER in the middle of the night- well. We have learned that a certain anesthetic is Evil, with a capital E. Lily had a really difficult time waking up, which although not unusual- was particularly bad. There was much screaming and writhing and general malaise. By the time she and Phil got home around 5 pm(for a scan at 11......) she still was very groggy only to wake to complain of aches and pains.

I think by 7 she requested to go to her bed, continuing the same behavior. I've talked with friends who have had similar experiences with this drug and was warned the effects could last up to 8 hours. She felt warm to me, so I took her temperature- it was 99.7 under her arm. Ugh that means 100.7. Technically a fever. Phil and I agreed to wait and see. I put cool cloths on her, gave her a double dose of hydrocortisone and laid down for a midsummer's nap as she drifted off- it was about 3 winks until lil Phillip was shaking me. Mom- I heard Lily cry. I got up- by the time I got to her room she was asleep again- but one touch to her head and I knew we were in trouble. I rinsed the cloths and laid them over her whole body- which woke her up- which was fine, I needed an oral temp. 104. Mother beetch. Time to go. I page the on call doc. Phil comes in- what is it? 104. Yep she needs to go to the ER.

By the time the bag is packed I hear the beeping of the thermometer again- it's down to 102.5. Still very, very bad. We never got a call back, Phil pages the doc again. Still no call. Off we go. The ER was efficient and ran cultures and blood counts and took samples- no cause to be found. They give her some fluids and more tylenol and hydrocortisone. The fever breaks. Her sodium is a little low- but that's it. Unexplained febrile condition. great. It wasn't an adrenal crisis, which I feared. The ER doc said if it was crisis, she would have been throwing up, a lot. At 02:30, she was back home and drifting off on the couch- at least coherent in between naps. We are to give her triple doses of hydrocortisone- I'll probably throw some salt in there too. Poor monkey.

The scan results should be available in 48-72 hours- at least the official report from the radiologist. The ER wanted us to follow up with Peds, but we will prob follow up in oncology since they know her better.

I'm the map, I'm the Map....

2009-07-28T10:34:00.000-07:00

Phil made it home! Bella spent the drive to base chanting " I wanna cwismas twee". I finally looked at her and said "what?" and then she mimed opening a present- aaaaah you want a present! "Yep daddy brings me pwesents!"

And that he did- each girl got a faux diamond ring from Singapore, which goes really well with the fauxhawk Lily is sporting these days. There were tshirts, and maps which ultimately stole the show. Very much like the phenomenon of kids playing with wrapping paper and boxes that toys come in, they played with the maps all afternoon. Lily slept with hers. There was some drama when it sustained usage damage- but all in all- scotch tape mends everything but the emotional wound it left.

As I got ready for bed the stress started building. Scans. Lily has her CT and MRI today. The hormone tests all came back normal- and if there were tumors causing her "symptoms" they would expect the hormone levels to be raised. Phil and I had the cursory debate over who would take Lily in. He asked me if I wanted to go. No. No I don't want to go. I need to go, I should be there- but do I WANT to be there, no. I want to be there for Lily. It's a complicated mix of feelings- but scans are exhausting. It's emotionally draining- battling her fears, while suppressing yours running around, getting the paperwork in order and then waiting for the scans. I usually take a book and reread the same paragraph 800 times until the tech or resident comes out and walk to recovery with her- and then the real fun begins. The screaming, the crying the I wanna go home-ing. Phil suggests we let Lily decide in the morning. That's fair.

She gets up at 0530 and drags me downstairs. She's thirsty and hungry. The other downside to scans- NPO status. Fortunately since it isn't major surgery she's going into and just a scan- I adjust the stringency of adhesion to rules accordingly. I fix her some toast and water and she ends up consuming neither. Another lesson learned previously. I could spend an hour telling her every three seconds that she can't eat or drink- or put a small something out and she doesn't eat it anyhow- it's availability appeases her. She can have clears until 8. But I would like her to have something little in her tummy before I give her a triple dose of hydrocortisone for the stress.

She runs the gamut of questions- are they taking my button out? No. Are they going to poke this?(she points to her port) Yes. Oh. Am I gonna sleep there? Kind of- you will take a little nap and then come home. No- I don't like that, she's starting to panic. Ok babe- it's ok, you'll wake up happy and we'll get you whatever you want for lunch. OK.

Phil comes downstairs and immediately asks who she wants to take her- you. She looks at me- I want daddy to take me-can two of you take me? Well, someone has to stay with Phillip, Kiera and Bella. Ok, you stay here with them, daddy will take me to the sospital. And I am relieved. It's like a last minute pardon. It's so much easier to clean and do laundry while stressed than to sit in a waiting area with dozens of other stressed people- the air of stress is tangible. We don't get the results right away anyhow. We still have to wait for that. I usually have to call and ask. When they call you, it's rarely a good sign. She grabs her map, packs her backpack and she is ready to go. Where are we going? She points to a spot on the map. Apparently the hospital is in Singapore now.....

Oncology on Canvas

2009-07-25T18:25:00.000-07:00

Make a Smilebox scrapbook

We got to participate in a wonderful workshop this morning called Oncology on Canvas. All of the oncology patients in the hospital and their families are invited to come and express their journey through art. As we walked in, a few of the volunteers introduced themselves to the kids and immediately supplied them with plates full of sugar. As they were carb-overloading, I was secretly hoping the sugar crash would coincide with the rest of my afternoon. The kids were provided with any type of paints, colors, markers that they could imagine. I was encouraged to join in the fun.

I had taken the kids , thinking this was a great outing for them while Phil was gone and it included minimal clean up for me. I think what I took away from the experience was far more valuable than anything. I watched families in various stages of cancer all trying to find answers, closure, expressions on paper to what they have been through. Each was different. Some were empowered, positive- others were beat down- all represented through art. There were islands, and mountains, dark caves and beautiful moons- there were flowers and turtles and knifes and ribbons. It was so interesting to see. Talent was not the point- healing was. Far more meaningful that million dollar paintings and way more valuable was this experience. It showed me another glimpse into my kid's thoughts- Lily clearly misses daddy as every paint stroke was yet another item for him. At 4, she lives in the moment- and this moment she is not a cancer survivor- she just misses daddy. Kiera was very intent on her art- yet all she really wanted to do was take it home. For Kiera, it is all about showing her friends. Bella did everything that Lily and Kiera did, with her own quirky twist. And Phillip got lost in trying to perfect Phineas and Ferb- wanting to quit when it wasn't perfect. I finally convinced him that it was his drawing, and as usual he was his strictest critic. Don't know where he gets that from. As for me- it started as an idea of the frog in Lily's belly. I could handle that- maybe sitting on a lilypad- with a purple Lily. I drew the outline of a body,of what was initially thought to be Lily- and inside the chest was the Lilypad with the frog. Yet the frog was more inside the Lilypad- I never was any good with depth and position, ugh- but then it took shape in my mind- the Lily pad was shaped like a heart- the frog in the belly of the Lily- the person holding the Lilypad was me. And there my friends is art therapy. What it starts out as is rarely what it turns into and what it turns into tells you way more about what you start out with than you originally thought. Hmm.

Right there.

2009-07-24T00:35:00.000-07:00

Thanks to all who have been so supportive. You can't pick your family, but you do pick your friends and sometimes you luck out on both counts. I have the most amazing friends- and gosh darn it I love you guys! As for my family- you're pretty awesome too.

Phil is trolloping about Singapore these days- sorry honey- I meant to say working dilligently to further friendly international relationships ;) We have been doing video chat, which the girls find this to be a great way to be silly. We take this opportunity to do a geography(aka situational awareness) lesson- which Lily seems less than interested in. Phil: Lily- do you know where I am? Lily: Daddy watch this....(insert goofy face) Phil: Lily I am in Singapore. Can you say singapore? Lily- Daddy watch this(insert goofy dance). Phil; Lily, where am I? Lily: You are right there, watch this.....

Our Wish.

2009-07-20T06:28:00.000-07:00

Lily's wish to go to Disney World has been granted. We will be going in September. Phil and I are overwhelmed by the generosity of this gift. It has been a constant throughout this process, an incentive when the going got tough- a reward for getting through when the going got tough- and a beacon of light for our little family that every day was forced to get tougher. I never thought there would be a down side to it.

I have been also humbled by the support and interest so many have shown in being a part of this wish trip. So many who just want the chance to give us the hugs, distance has not allowed over the past year. I truly do not wish to hurt the feelings of those who selflessly offer their support and love, but others are not so selfless. I can't tell you how much consideration and thought we have given this. I have gotten earfuls from different sources. Which led me to my decision. A decision a good friend of mine offered up 2 days after I told her of the wish trip many months ago. We have depleted our emotional resources during the past year. We have tried to grasp moments of fun and rest whenever possible- but I have no idea how long it will take us to recharge. All I know is that we need a vacation. We need to get away from our immediate responsibilities and obligations and regroup, reconnect, and refuel. As much as I would love to have a reunion with our many supporters- this vacation is not the time or the place. I don't want to plan it, nor would I like anyone else to plan it for us- we just want to be us and go with the flow. The more fish swimming around us- the less likely we will be able to go in the direction we want. The six of us have all sacrificed a lot of ourselves throughout this process. Phil and I have had to let certain aspects of our relationship and our relationships with our kids to slide or be pushed aside, merely to survive daily life of dealing with cancer. We have a lot of catching up to do with each other and with them. We will at another time welcome, cherish and help coordinate visits from friends and family. But for this trip, we are kindly requesting to be allowed the time and space to put the pieces back together during this trip.

Pieces of me.

2009-07-17T18:50:00.000-07:00

I have had the luxury of going for walks 3 mornings in a row. The first morning was exhilarating. The breeze along the beach at Koolina- fresh with the hint of plumeria in bloom. The view breathtaking as the waves crashed along the lagoon rocks. I remembered why I loved walking, it gave me time with my thoughts- to gather them, to rearrange them- create them. This is where I find clarity and happiness- I make sense of what is confusing, peace from what is infuriating.

The second morning, I walk along the familiar streets of our neighborhood. The weight in my chest, crushing my heart. I don't know why it seems so intense now- it should be getting better. I should be working through this. I am less than a half a mile from home, and my eyes are leaking. I am not crying, I am leaking. Crying is an active reponse to a stimulus- this- this is a flipping fountain. What is wrong with me? I am not sobbing- but I feel like I can't breathe- it's not the pace of my walk- it's the pieces inside my heart shuffling around to make sense and heal. It doens't matter how deeply I breathe, I can't catch my breath- but I keep walking- looking for the peace that seems to elude me. I start sorting the threads of thoughts- looking for the answer. This feeling is all too familiar. It's somewhere in the middle of what I could compare to the runner's wall. It's my emotional wall- something I am all too familiar with. The wall that flings itself up around the loss. Protecting it until I have the time to deal with it. The tears are the response to this stimulus- the collection of fear, hurt and anger of the past year. My body is letting go, despite my resolve to keep it together. This is sheer silliness. This is a good waste of alone time. Pouring about like something is wrong. I finally make my round and march through the door, right up the stairs and into my room. I take a few minutes- a few splashes of water and I am presentable. Phil knows immediately something is wrong. Damn, thought I was presentable and the faucet is on again, oh blast it to hell. And just like that I am surrounded by 3 of my favorite people in the world- in one heckuva Mallory sandwich. Phil is my rock- holding me up, if only he was the typical male oblivious to any internal struggle of mine- I might be able to hold it together- as usual-Lily wants in on the action - never one to be left out of a group hug and lil Phillip with obvious concern. Phil explains that we've had a rough year and sometimes a good cry helps to release the stress. Oh if only that were the case- you'd see me sobbing everywhere- but I have yet to find that it does anything but make my eyes sore and seriously reduces the life of my contacts.

Phil hesitantly leaves for work, throwing cautious glances at me when he thinks I don't notice. I try cleaning- but I don't feel like it- so I immerse myself in a book. I know at some point I will have to come up with a good reason why I sprung a leak- but I honestly don't have one. I wasn't thinking about anything. I haven't had much alone time to think- the few afternoons I've had to myself- I have kept so busy that I didn't have time to think. Perhaps it's the cumulative effect of all the times the past year I have tucked away feelings because there wasn't time to deal and now they have started to come out of hiding. I wish I could feel like it was over. Phil feels it too. Fortunately it brings us together rather than drive us apart. After all these years- he amazes me by accepting my wackiness- and part of me thinks he actually LIKES it. It also makes my wacky feelings feel less crazy when I realize he feels the same way- it makes them real- less imagined. It makes me wonder how anyone would be willing to settle for less than their soulmate . I wonder if it is because people value different things. I can't imagine not having someone by my side who didn't understand completely- I am so lucky in that way.

Day 3, I am handed his Ipod set to a playlist with upbeat music- and the instructions to not think. Perhaps that is best for now. I make it through the walk with out a single tear. Really the thinking isn't the problem as much as the feeling. The feeling that something is wrong, the waiting for the confirmation. Realism says go about your business, no sense in worrying- but intuition is just that- not so much controllable. I could pretend we are normal- but right now that takes too much effort. I know eventually it will be so second nature that we may actually feel normal again- but for now it just feels like work. I don't feel like cleaning. I don't feel like doing anything. I feel like I should be doing something, I have no excuse now. Other than the constant mood swings and the emotional wreckage- I have no excuse. Yet I am tired. To my core. Tired of explaining that yes chemo is over, but no we don't use the word cured at this stage- we have to get through a year's worth of scans first. Some don't say cured for 5 years. But we are still left with the remnants of the storm. I am grateful for my sisters in battle who confirm the phenomenon- that we are not alone in our feelings- they feel it too. The exhaustion, the guarded hope, the constant worry. And every night, I do my rounds. I stop and pause to watch them all peacefully sleeping. I wonder at how they have changed my life in such a short amount of time- how I can't imagine ever loving anyone more than I do them. I miss the innocence, the easier times and try to keep the illusion of childhood alive for them. I know it will get easier. I am eternally hopeful. In their own ways- each one of them has given me gifts I would never physically hold and therefore would not and could not ever lose. They are my life.

I have written many entries, never published. Some things are just too personal. It is what it is. I am not fishing for a barrage of concerned emails and calls- I am safe within my walls. I am letting you know that when you see the scars of cancer, there are much deeper emotional scars that take longer to heal. I don't want to dwell, but I can't pretend it's not there. We are forever changed, and not always in the best way.

Tripler Post Chemo Marathon

2009-07-09T18:32:00.000-07:00

Lily and I have begun our post chemo marathon testing training. Let's see it's Thursday and we've spent 3 of 4 days at the pink palace. Aaaah, it's like old times. insert me rolling eyes. *Fortunately* this is my new sarcastic designation- think on it, reflect on it- it's very reminiscent of the good old finger quotations...which also were usually sarcastic. Ok, I digress. *Fortunately* Phil is night flying this week, so he has been available morningish- to early afternoonish - ish for help with Bella. We had Lily's endrocrinology appointment which led to a battery of other tests. Her "bud" development has continued, as has her furriness. Her hips are also widening. Our oncologist *reassures* us that any course that had started before chemo, will resume- so it is not unexpected for her to continue furryfying. And somehow here's me...not feeling reassured in the least.

So we(endocrinologist and I) conference with the oncologist, who is now back from somewhere far far away. Mid conference we begin a sidebar about mitotane since this is our first meeting in weeks. The endocrinologist is off trying to coordinate tests and such. Oncologist- so, um , by my calculations we should have been done with mitotane on the 29th. Maybe the hugging her and telling her I loved her was a bit over the top- and slightly caught her off guard- but I KNEW I wasn't crazy. I feel like it most of the time. When you go in 12 directions at once- you can't possibly be committed to one direction- but I was definitely in lust with the direction we just passed. Yea me. So we are officially officially done with the mitotane phase of this journey. Yea Lily!

We are scheduling her post treatment scans which will include MRI, CT and an Ultrasound of her belly. These will be repeated every 3 months for the next year. Today we had to do a blood test to determine something. That's all I know so you'll just have to go with it- that's what I do. Our endocrinologist is very good in a lot of ways, and she has a unique personality. It was during the last visit that it occurred to me that the storage closet with the ancient measuring devices in it that she trusted implicitly for consistent measurements- was in fact, her office. As Phil put it, she could pull 12 pencils from her hair and he wouldn't be surprised in the least - and I feel that is an accurate statement. Piles of books and papers and files everywhere. She doesn't trust the scheduling computer system and schedules everything herself- and I actually like this. She always has to be paged for our appointments- but it works. If you know me, I like to know what scan, test what ever we are doing, why, what it tells us, how often it needs to be done, etc. You have to be on top of things with this whole multidisciplinary treatment thing. But the words used to describe the test and it's purpose could not find residence in my brain- and really I should have asked today as we were doing the test- but quite frankly I was tired and hungry because Lily had to fast and I felt it would be rude to eat and there wasn't really time to eat without her seeing - so it didn't happen.

The test required accessing her port- drawing a fasting blood level- as well as 4 other vials for various other tests- followed by a shot in her leg(yeah THAT went well) and another blood draw(out of her port) 40 min later. I was just relieved it was 40 minutes to wait as opposed to the 3 HOURS I was previously told. This test apparently will tell us something about her hormone levels and yeah, well something I will eventually figure out. Right now her hormone levels are too low to indicate her being in puberty, so we have to rule out other causes(aka tumors) causing these changes. A lot of it is our new "routine" testing, some of it is being extra careful.

Lily's Chemo Independence Day Party

2009-07-06T00:17:00.000-07:00

Make a Smilebox slideshow

Harnessing independence.

2009-06-30T09:29:00.000-07:00

There are many things that I said I would never do before I had kids- that when I had kids I realized were not the end of the world. Matching clothes- overrated. Dirty faces-inevitable. Still won't drink out of a cup after Bella though- ick. The child is the opposite of a particle filtration system, which in my beverage is not a welcome thing. But I will not leash my child. As a younger person, I always thought-if you want to walk something on a leash- get a puppy. I have four of them. 2 of which run in opposite directions when we are in public. That's why I bother taking the older two, so they can help corral the little monkeys when they break free. People out there will not put a leash on an animal - but put a friendlier version on and call it a harness. There is a child equivalent- if you haven't seen it- you probably don't have rope burns on your legs. Here's how it works..It is a fluffy backpack, inocuously disguised as a frog, or teddy bear. And attached to the backpack, is a leash. SO your child gets an additional 3 feet of grazing space before you can yank them back into your bubble. It's like hands free parenting- leaving your hands open to juggle shop items while your child is 3 feet away also "juggling" shop items, or clotheslining some poor unfortunate soul.

Don't get me wrong- I don't think leash parents are bad parents. Strapping a child into a stroller isn't much more than a comfy restraint system with storage and a cupholder, it still seems less demeaning. Everyone has their personal choice. I more often than not choose not to go out as opposed to battling toddlers or leashing them, that's my choice.

Unfortunately for the past 6 months, Lily has spent a huge chunk of her time leashed to some sort of contraption. Every night we hook her up to her feeding tube which is about 5 feet of clear tubing attaching her belly to the pump that delivers nutrition. The plus side- she doesn't starve- the down side- she is stuck. She can't get up in the middle of the night to go potty, she can't get out of bed and wander or get a book or a drink of water. On the plus side- she can't get out of bed and wander. So she would sit in bed and scream at the top of her lungs moooooommmmmy!!! And when my heart climbed back into my chest- I would run and see what the crisis was. I learned not to show my face when she yelled for daddy- which was problematic when Phil was at work. It was Ok though, after a few tries, she switches back to moooooommmmmmy.

Now that she is done with the inpatient chemo- we have weaned her from her feedings at night. She is eating like a normal kid again and even resumed her love affair with ketchup. It has been an interesting experience. We started by gradually decreasing the quantity of her feedings at night. When she would wake up nauseous, we'd up it a little the next night. We got down to 10 mL per hour- which ends up being about 90 mL a night- which is not much- it's a few swallows and we established that nausea was no longer a problem. The problem was her attachment to the routine, the hooking up of the tube and having that with her at night. This past weekend- Phil packed up all the paraphenalia in the little back pack and some cans of formula- but she requested not being hooked up. Score. As soon as we got home, Phil dismantled the pole the feeding machine hung from and took all associated machinery out of her room. She saw what was going on and did not like it. That first night was rough. She didn't want to go to bed. But she finally did, and it was a treat to have her walk in our room the next morning and declare that the sun was awake so it was time to go downstairs.

We still use her tube for medicines 4 times a day. I have started reducing her anti nausea meds (we are down to half her usual dose)and haven't noticed a major change. We had a little field trip to radiology today to do her bone age to see how it has progressed since the last time. Other than that, I am party organizing. As for the party- it is fenced and kid friendly so feel free to leave all leashes at home.

You take the good, you take the bad...

2009-06-27T13:18:00.000-07:00

You take them both and there you have it. I've been finalizing arrangements for Lily's big party, so it only seems logical that things should blow up. Food- ordered, waterslide and bouncy house- taken care of. But her final day of mitotane, I just can't figure it. I counted days, weeks, calendar months. It doesn't make sense to me- 3 out of 4 ways of counting and I have her done Monday this week. Yet the "official" word is that she will not be done until July 17th. F%$! Not much we can do about it. I know I'm right, but the study doc said 8 weeks after the final chemo. Well her final chemo started the 20th and ended the 24th of April. Add 8 weeks- that puts us to June 15-19th. Ok- Maybe from the end of THAT cycle- that would be May 11- add 8- that puts us only to July 6th. Counting actual weeks of mitotane- we are done with week 32 on Monday. I know it seems stupid to be upset over 2 weeks. But that's 56 more doses of mitotane. I could be the perpetual optimist and say it couldn't hurt- she just reached therapeutic levels 2 months ago(ironic eh?- 8 flipping weeks) so the more the merrier- kill those little bad ass cancer cells and hope the craziness and neuropathy it is slowly but surely causing as the blood plasma concentration goes up is truly temporary. And people worry about giving their kids food that has red dye 40 in it. I wonder how adrenal cancer cells feel about red 40? You take the good, you take the bad.

As I am all grumpy and weepy over it, Phil looks at me rationally and says - Are you upset because she's not going to be done or upset because she's not going to be done by her party. Both, but mostly I want her to be done with this phase. It's time. Her party is to celebrate these months of bravery and strength , to celebrate her and our amazing little family and the amazing group of friends that have helped us through it. It doesn't matter as much when. Talk about a major case of senioritis.

Friends are on the island, so we took a last minute opportunity to have a little getaway. Recharge all of our batteries. My camera is worn out too, and I forgot the charger- so these memories are stored in my memory banks. This would also be the good- sitting back- enjoying the weather- the breeze- and realizing life is too short to sweat the little stuff. 3 more weeks. It'll be done before we know it.

A frog in her throat.

2009-06-23T22:22:00.000-07:00

Lily's frog hopped from her belly to her throat and is now biting it. Her fever broke this morning so we avoided an admission to the spa on Tripler Mountain. They did a strep test, but we won't know the results for a day or so. I don't think it's strep because the other kiddos all got better within a couple of days, but we shall see. All in all, we hung out for 6 hours and don't really have much more information than when we went in. It's not a bad thing to not be the most pressing case of the day.

Our primary oncologist is out of the country for a few more weeks. Unfortunately there was no definitive stop set for Lily's mitotane when she left. The pharmacy says to finish the prescription- but that takes us to July 17th and that's more than 3 weeks longer than I calculated. SO of course I came home, researched, recalculated and have decided that this week is it. The study dictates 8 months of mitotane. 4 weeks in a month, 32 weeks of mitotane. We started Nov .17. Theoretically then, Monday ends week 32 of this journey. I'm sticking to it. I specifically asked the doc months ago if they would extend the mitotane if she didn't reach therapeutic levels because she was no where near therapeutic levels and she said no, she may not reach therapeutic levels- but 32 weeks was it. I'm pretty sure the pharmacy is not going off of the clinical trial protocol, which I reread- but were going off of the mitotane they ordered.

All of our usual friends came by to see Lily. Miss Julie and Ms. Barb spent lots of time reading to and distracting her. The access went well, despite her having to get 2 pokes. The first one wouldn't return blood so it had to be redone. I am pretty convinced that she feels the poke- but it's not a horrific pain- it's mostly scary for her- and rightly so. She still screamed like a maniac, but all in all there was no kicking or thrashing. She ended up getting a course of IV antibiotics, just in case and we got to go hang out in the pharmacy for amoxicillan- just in case.

We rounded out the visit with our endocrinologist who will be seeing us back in a couple of weeks. We will redo a bone age for Lily and they ran a panel of hormone tests to see if we need to put her on hormone therapy to stop whatever changes are starting.

It was a long day, I definitely do not miss doing this 3 times a week- sheesh. I do miss our friends we have made there and it was so nice that they all go out of their way to spend extra time with us while we were there.

Snippets of time

2009-06-22T20:37:00.000-07:00

Yesterday

Lily has the virus Bella had last week. I am watching her closely as her fever is hovering around the point she gets a trip to the spa. Since I am not allowed to meander further than the kitchen to replenish juice rations, I have been piddling around on the computer all day. I wish I could say I accomplished anything but for now she just needs mommy. Not all job products are visible- but no less important. In between , I do computer chargings and loads of laundry when she drifts off to sleep.

Today

There was puking involved last night. Phil spent the 1st part of the evening on duty and I took the second... I thought her fever broke last night. It did not. Going into clinic today to flush her port and do routine bloodwork. Hopefully we will not have to stay....poor monkey.

It's 2 am.

2009-06-19T05:43:00.000-07:00

I do not like 2 am. Or 2:30am or 2:45 am. I am pretty sure I will feel the same about the rest of the ams for the rest of the day. I knew Bella's late nap would bite me in the bootay.

She crashed on the couch shortly after 7. I worked dilligently towards getting the other children in bed, knowing that early to bed, early to rise. Lily, also having indulged in a late afternoon nap- was not feeling sleepy in the slightest. So I let her pick out a tv show and I start running a bath- for me. We have a discussion on how I would like to take a bath by myself, I don't want to hang out and chat or have a little fish hop in with me- it was mommy's quiet time. Ok mommy. Please just watch tv. Ok mommy.

3 seconds later...whatcha doing, you taken a bath? Yes, remember we talked about mom needing a few minutes of alone time. Oh, Ok mommy. You have fire? Yes, I lit some candles. Is that the smell? Yes, they smell. You are drinking in the bath? Yes, I do believe a glass of wine is indicated. Hmmm. Ok, bye mommy. 1 minute later.. in walks Lily with the mini Barbie piano blasting one of the prerecorded songs. You need some music. She moves to set it down out of reach- no thank you Lily- I like the quiet. She admonishes this declaration with a look of disgust. She quickly pushes the button to switch the song and declares she will turn the volume down. She then proceeds to park herself on the bathmat next to the tub and serenades me, off key with a rousing rendition of jingle bells... Which causes me to laugh to the point where tears are rolling down my cheeks and this somehow pleases her as she packs up her instrument and leaves- another job well done. And somehow that ranks as the best bath I have had in ages, go figure.

I get Lily squared away in bed and feel Bella, she's still warm- I think my night will be short so I rush off to get a few winks. By 130am, I hear Bella yelling for daddy. I wonder what that's about- there must be a monster involved- he's the resident monster checker these days. She is sitting on the edge of the bed and declares "I'm scared" as I feel her forehead. She's burning up- time for some more tylenol. I lay with her for awhile, she declares strange things- Like the fireworks scare her. I realize that she is awake and staring at me and in hopes of her not waking Lily with her chattering, we move downstairs. I pour her some juice and she requests macaroni and cheese. I am not making mac n cheese at 2 am. We can go to the store! Um no, short of sleeping, we are not going anywhere. Oh. Ok. The blinks are getting longer- I am hoping we will be off to bed soon. I can hope.

No News...

2009-06-18T21:42:00.000-07:00

Is good news. I am pleased to report, there is not much to report. It's kinda like the aftermath of a hurricane, really. There's tons of clean up which keeps me busy. On the positive side- the girls wear more clothes now- the down side is I do A LOT of laundry. Our 1999 washer and dryer keep plugging along- and I am doing everything possible to drive those bad boys into the ground. I'm not looking forward to shelling out the deniro for a new pair, BUT word on the street is that I could reduce my number of loads by at least half. Time is money.

I am surprisingly not stressed about Lily's party. Very uncharacteristic, yet true. My biggest worry is that after about an hour and a half, Lily will have a meltdown and that will be that. She likes to be the center of attention, but not directly. Fortunately I have had a few girlfriends offer help and I know that by the end of next week when I start to panic, there will be reinforcements.

Bella has the bug that Kiera and Phillip had last week. A fever and general malaise. Always wanted to use that word. All I hear all day is- MOM. I don't feel good. Mom, I don't feel good. Mom, I don't feel good. Hey Bell? Yeah? DO you feel good? No, I don't feel good. I get that. It did buy me a 30 minute nap this afternoon(it was her second). Lily crashed on the couch and I heard wimpering upstairs- she had gone up to get something and never returned. I found her huddled under her monkey blanket-Mom, I don't feel good- so we curled up and caught a nap until the quiet woke Lily and she sought us out.

I wonder how the laundry got done when Lily was sicker. I think Phil must have done most of it because I have done laundry for 3 days running and it keeps regenerating exponentially. You'd think I was doing laundry for 6 or something.

We're still swimmin....

2009-06-11T09:19:00.000-07:00

I have been able to catch up with friends a bit these past few weeks. Cleaning always goes faster when chatting with a good friend. I guess it's the biggest downside to the blog, everybody knows the ins and outs of our days, but I have fallen hopelessly behind on what's going on with all of you! I truly appreciate the consideration of our circumstances, and I know the past few months we have been completely absorbed. I am looking forward to continuing to catch up with everyone.

This week was filled with summer fun and family. We went to the pool, the beach, visited with Aaron and Grandma Sandy who is finally back from Iraq. To round it out, Phillip caught the bug that's going around and is still out of commission on the couch, so I have been catching up on laundry and all those towels that need to be washed!

Special Lily K?

2009-06-09T16:42:00.000-07:00

We all know Lily is special- but is she special in a way that gets her into state funded preschool? No. She MAY qualify for special ed services once we enroll her for Kindergarten, but right now her learning is not impaired enough to get her in the special pre K program. I have mixed feelings about this. I'm glad she's not developmentally challenged to the naked eye and she adequately answered perplexing questions such as- How old are you? and Do you want to color? and then she spent the rest of our "interview" chanting- I want to go home. I want to go home. I want to go home. At one point she got up and was counting the blinds on the door while chanting- I want to go home.

Apparently you have to have 2 "disabilities" to qualify OR one disability that interferes with learning. Apparently a 4 year old with hearing of only half the sounds in the english language doesn't qualify especially in a place where ESL is standard in the average home. I also got the " well how long are you going to be here for?" implying that my husband's military status and our position here is temporary. I explained that he is Air National Guard- meaning this is our home. Regardless- how is this part of the equation? Standard.

Please bring her in Mrs. Mallory if she has more profound hearing loss that interferes with her learning or if her speech development suffers. Yes, let's not cut this off at the pass, let's wait till we're in full downward spiral. So now I guess I go to the social worker at the hospital and see what services are available in the wake of all this. We'll see if that does anything for us. I guess it could be worse. I guess we go back to normal.

So I sign her up for Maggie's dance class as part of this reintegrating into society thing. She did pretty well- it was Bella that was a roving maniac. 15 minutes into class and 3 trips to the bathroom later- Bella continued to race back and forth across the dance floor. I have flashbacks of our 1st attempts at dance class with Kiera. Not good. Every now and then she stops and appears to be doing what everyone else is doing, but then the fancy passes and she is off fluttering around. About 30 minutes into it I hear Lily pleading with the instructor that she wants her daddy, she misses him sooooo much, he has to work. The instructor says with no sympathy, how sad- now find your spot. I think it's rather funny. Lily shrugs and finds a spot- who's to say whose spot it is- but at this rate it's a spot. She spent most of the time admiring herself in the mirrors and they get to the end of class where they tell a story through dance- today's story, Little Red Riding Hood. Maggie, being the only child in the class who has actually listened to any of the instructions- lands the role of prima ballerina. A little boy lands the role of wolf and the rest of the chorus are relegated to trees and flowers. Lily decides she is going to be a flowering tree and plants herself next to the wall. Bella on the other hand is scattering flowers and continues to run around like a maniac- which actually is part of her role in this play. Apparently flowers run around in the ballet. I am exhausted from the emotional torture of vacillating between silently willing them to behave in public and commanding them to behave in public. Neither seemed to make a whole lot of difference. Fortunately this is a small studio with a very relaxed staff and all reassured me that in a few weeks they'd get the hang of it. I hope so.

Lily's Chemo Independence Day Celebration

2009-06-08T22:30:00.000-07:00

Make a Smilebox scrapbook

A Blossoming Lily.

2009-06-05T13:23:00.000-07:00

I love Lily's new hair. It is so soft- I sit around and pet her. Fortunately she doesn't mind and I usually get a hug out of it. It's still sticking straight up and blonde. She also has been wearing her hearing aids nonstop for the past few days. It has been great. She seems a lot less frustrated. Last night she pulled one out before bath time and it came apart. I almost lost my mind. Not even a week. YHGTBSM. Ugh this means a call and a trip to Tripler, and we just spent the afternoon there. I look at it- I don't think I can fix it. I call Phil- of course I imagine him in the bar, couple of beers under his belt so he is calm and rational and he tries to calm me down- she's 4- there's gonna be a learning curve says the rested parent. Lily takes her bath and is sitting there watching tv and losing her mind- she wants to hear it- she can't just wear one- she wants both- so I shove the 2 pieces back together and miraculously they stick and it seems to be working. Add Hearing aid mechanic to my list of possible occupations when I recover. She starts complaining of the waterfall sound. I am starting to stress this means the aid is still broken and she's hearing feeback- she keeps turning her head from side to side- finally she points at the oscillating fan- THAT'S IT! That's the waterfall sound! I turn it off and that makes it all better. Phfew!

After Lily's last appointment her bipple, as it is called around here- was very irritated. She is sensitive to the adhesive and there is usually irritation- so I make a mental note and file it away. This past weekend I notice the redness has gone, but she seems to be swollen- It may just be her port which is less than an inch away(and has often been referred to as her 3rd bipple)- 2nd mental note, filed away. Then on Tuesday she had a dress on- I could see her lil nubbin poking out- oh mother b*&#!. She is just starting to wear clothes again. That's the 3rd notice- this needs to be investigated. Ugh. I ask her if her port bothers her- nope. Can I touch it? Are you gonna give me a shot? No. Sure then, you can touch it. So I feel around- the port seems intact- it doesn't feel like a hard cyst, it feels like a little lump. Under her bipple. There was much surprise early on that she had not started to develop- but I wouldn't expect one nubbin to come in- I would expect symmetry. Supposedly we also have killed off the adrenal glands and hence their ability to produce these hormones. I have that pit in my stomach. Why couldn't I have noticed it when Phil was home last week- or in a few days when he gets home. I'll sit it out and see what he thinks when he gets home. I'm not gonna tell him, he will come home- as much as I want him home- I need for him to have a job. I spend days randomly bursting into tears and battling anxiety attacks- when we are out and about- it's all I can do to not burst into tears when someone asks me how she is doing. I don't want to be the hypochondriac parent that medical professionals don't take seriously, but I also don't want to sit on something that needs to be fixed. I finally decide having it looked at by her doc is better than waiting. I call and Florence immediately recommends bringing her in. We almost made it 2 weeks.

Dr. K is absorbed with another patient, so we are stuck with a resident until she gets there. I could be hanging around waiting- instead I get to recount her medical history with a resident who I think probably has a personality in there somewhere if he would just loosen up. And then it occurs to me- this is the resident that Phil had words with about waking us up at 4am. Now it's just amusing to watch him squirm. I hope he doesn't choose peds as his specialty- but maybe he can be trained. The upside was that when Dr. K finally got there- he was instructed to show Lily how to play xbox so we could talk- the guy has now been adequately punished. Of course my heart only skipped like 8 beats and I must have gotten pale because she immediately says- I think it's just breast tissue. Oh just breast tissue. That's all. In a 4 year old. No biggie. UM- does anyone else have a problem with this? If she's starting to get nubbies- then other things could happen- and although it would TOTALLY explain the moodswings- I am not equipped for my own monthly battles- how on earth could a 4 year old be expected to- yeah- um no- what are we going to do about this?

Of course the endocrinologist is out for the week- because she would be our next stop. So a call is made to radiology to see if an ultrasound would help rule out tumor tissue- and of course the answer is no. Breast tissue is too fibrous- that's why U/S is not readily used for monitoring the breasts-probably not much more success with MRI and something that size- a surgical consult is best. Dr. K calls Dr. E directly and she says send her on up- one question though- Is she wearing clothes today? Oddly enough Dr. K tells her- she is. Off we go.

AS I walk up to the surgery clinic desk- I realize that we don't have an appt. This is totally going to be a problem. Receptionists do not respond well to-"just call the doc" so I try to convey what
I want. I get the "smile" and " well, it could take some time for the consult to come through and then I have to make an appointment- remind me in 15 minutes to check" Oh good lord...we have a seat as instructed and I am trying to find a signal to call Dr. K when I hear Dr. E asking if Lily is here yet. God I love that woman. The receptionist says she is waiting for the consult to make the appointment then she'll send her back- Dr. E laughs and says"there won't be a consult coming, we don't really need to make an appointment, do we? I'll just take her back real quick- it's just a visit." Sigh- snip snip computer tape.

Lily is pushing the umrella stroller with pooh in it and runs at full speed down the hall. She apparently owns this clinic as well because everyone stops to say hi or give her five. I repeatedly remind her to walk as she cruises by the exam room. Lily has figured out why we are there and has her shirt up over her head before she even settles on the exam table. She is giggling hysterically because this will be the 3rd time today she's been felt up and she seems to enjoy it- ugh- mental note- have talk with Lily about who is allowed to touch her. Dr. E immediately smiles- I am pretty positive it is breast tissue. There are no hard spots- it's centrally located- I would highly recommend against biopsying it- in fact I would not biopsy it at this point. The reason is that when breast tissue comes in- all the tissue you ever are gonna get- is in that "bud" if you biopsy it- you will end up with a severely deformed breast later. I think we should limit deformity at this stage of the game. I do not like that my 4 year old is getting nubbins, but radical mastectomy at this point isn't called for either. She reminds me that my 4 year old's body thinks it is 7 and with all the exposure to hormones from the tumor- this is not entirely unexpected. How to proceed is back in the endocrinologist's court. I suspect we will be adding a repertoire of medications to our regime to postpone these changes for awhile. Mostly though I am still relieved that it's not a tooma. Even if it means our Little Lily is starting to bud. Ick. I can hear it now- Kiera when she notices(and she WILL notice) MOOOOOM!!! Why does Lily get boobs before me? ...Well dear, she's an overachiever- do better in school and you might get some too. hee hee hee.

Grumpy Old Women

2009-06-02T17:29:00.000-07:00

So maybe getting old and grumpy is not the way to go. Maybe this LFS thing saves us from wandering around decrepidly until we have worn out our welcome here on the planet. The more I run across people who are miserable and make those around them miserable- I wonder....why? We all have bad days. We all have to deal with people we would like to slap up side the head and tell them to get a clue. There are productive ways to effect change in society and then there is manhandling a 4 year old who has no relation or connection to you.

Last week, my friend Tracey mentioned going to the aquarium. We haven't been since Lily was an infant, it is a small building with only a couple rooms. A great mini outing to test out the new hearing aids and gradually work the monkeys into model citizenship. I am halfway to pick up Tracey and Maggie when I realize I forgot my camera and Lily's hearing aid remote control. I grab our carpoolers- we go back to get the forgotten items. We are halfway out of the neighborhood when I can't remember if I shut the garage door or not...so we head back. My whole sense of routine has been shattered. Mama needs to get her groove back.

We endure Lily and Bella screeching and touching each other since they are in much closer proximity in Phil's car- until Lily realizes her hearing aids are itchy and then we listen to that complaint. I'm pretty sure Tracey will opt for 2 car ops next time- if I even get a next time...

We make it to the aquarium, get the children watered and pottied and wrangle them away from the gift shop where they have brilliantly placed tons of aquatic squeaky toys directly in your path. We sit through a 5 minute video about saving coral and not putting trash in the ocean- nothing holds 3 and 4 year olds attention like public service announcements- fortunately there were brightly colored fish involved. As we are finally rounding the corner to the first tank- the kids rush right up to the window. There are little carpeted ledges that tempt children to climb up- and no signs admonishing such. 2 kids are already perched up there and Lily squeezes past 2 adults to climb up. She literally has one leg up and this little old woman starts pecking at Lily's shoulder and wrenching her down all the while yelling at her. I was about to correct Lily's behavior- so I am taken aback and about to pounce on the old bitty who has her hands on my child when I hear "How rude is that?" Before I know it the little old woman whirls around and she and Tracey are facing off. I start counting to 5. Talk about the mommy instinct- I was glad Tracey stepped in- I may have had to throw down an old lady with 2 different school field trips looking on. In this corner we have Granny Grump Alot- 5'2", yielding a mean metal cane- In that corner we have Protective Mama, 5'4, wielding pride and indignancy. Oh wait- Tapout Tracey is in the ring...It's gonna be a tough match. I grab the kids and move away- I'm holding on too tight-I've lost the edge- but I think Tracey has this one in the bag and although Lily is not fazed, Bella and Maggie look like they are gonna cry. I really want to go over there and give her a piece of my mind- but Tracey seems to have found her flow- she's laying out the "You NEVER touch someone's child, who do you think you are? She is a CHILD!" The old lady counters with "I don't want her to trip over my cane..." Tracey shoots back " Are you threatening a CHILD?" Wow- what alternate reality exists in the aquarium? I Knew there would be Lily-centric drama on the trip- I had NO idea it would go down like this. The old lady turns away- the TKO goes to Tough mama Tracey.

6 months ago I probably would have reamed that woman up, down, sideways and backwards. I would have thought it made a difference. As the scene settled down, I saw a variety of parents looking on with abject horror- their gaze following Lily. In a month- she will start look like any other 4 year old with a bad haircut- but she still looks like a cancer patient. Later on in the day- a man actually asked me if she was the cancer patient on all the commercials-( they all look the same you know. Pale, bald, sickly.) The fact that someone would touch my child and reprimand her after all she has been through infuriated me. To the point that if I starting giving her a piece of my mind- I may not have been able to stop. All the injustices I have felt and put down , would come crashing down around this insensitive rude old woman who lost her situational awareness. I don't know what her situation is, or why she is so miserable. I felt horribly sorry for her that she felt she had to pick on a 4 year old to exert her authority. How little control must she have over her life- that she chooses a sick child to reprimand- not the 2 perfectly healthy ones perched on the ledge that had been there well before Lily. Or hell- just be an adult and move away until the annoying lil buggers pass. I believe it takes a village to raise a child. I am all for my children being publicly corrected if they are doing something that affects others negatively. I draw the line at grabbing my child when they aren't in danger or posing a threat to someone else. Maybe it's exhaustion, maybe it's maturity, I'd like to believe it's the latter- but I almost felt like this woman wasn't worth my time- and I was damned sure not going to let her ruin my day. You can tell people like that they are wrong, but they won't hear you. Whatever in them allowed for them to manhandle a child, would prevent them from seeing they were wrong. So where is the justice? In the fact that we did not let it ruin the day- and it could have. In the fact that I have a friend who would throw down for my child as if she were her own. It is a reminder that you will be treated how you treat people. You will reap what you sow.

My hope beyond all hopes is that in a few months- notwithstanding a few wicked battle scars- Lily will look, act like, and be a normal 4 year old. The average person will assume she is just spoiled, and not spoiled because she is going through something terrible, possibly terminal. She will wander around places like she owns them, because that is her personality and not because it's the first time in a long time she's be out in public. On the plus side- we had no major meltdowns- and Lily seemed much less emotional today. She logged over 3 hours of hearing aid time. She also got to witness her first WWE event and seemed entirely unimpressed.

I Don't Like Mondays

2009-06-01T21:59:00.000-07:00

I never used to have anything against Mondays. Monday wasn't that different than any other day of the week. Mondays used to be my cleaning days. I tried to do that today. After the kids wouldn't wake up and I had to chase them out the door. After the van wouldn't start and thank god Phil got a ride to the airport when he left- so I just had to reload the children into his car. After I got home and established that probably among other things, my battery has finally gone on to battery heaven. After 3 hours of refilling juice cups, providing snacks, wiping bums- I almost had the kitchen to the point I would refer to as clean. And I really enjoyed it for the 5 whole minutes it stayed that way. I was in the midst of contemplating why I couldn't keep up with it as Bella decided to rocket her lucky charms and juice cup across the floor. And still today was easier than any given day in treatment. I'm just tired. The children have post midnight bed vacancy sensors. When dad is gone- they feel compelled to keep me company. The first night it was Phillip after Bella. Then Bella and Kiera. Last night was Bella, who eventually told me that Lily's' port was beepin 'and when I turned it off, she went right back to bed. The machines seem to go in cycles and last night was one of those nights it just felt like beeping. By the time it got it out of it's system, Lily was awake and wanted to snuggle and channel surf- which fortunately she agreed to do in my bed. That at least bought me until daylight. Right around the time the other kids should have been getting up, she was ready to go back to bed-which could not be allowed and made for a grumpy Lily. Still better than having to wake a Lily.

By the time I got the kitchen clean, it was time to go get the kids from school. On our way out the door I spotted what looked like a double headed lizard. I leaned closer and the noggins froze- I clearly had interrupted an intimate moment. Lily jumps over to see what I am looking at. "Look mama- they're all tangled!" I instruct her not to move so I can grab the camera. Of course by the time I get back, she had scared them off. Where'd they go? "they went under there- they're still all tangled!" I guess we'll have more lizards soon. At least somebody was having a good Monday.

First Water park Solo mission.

2009-05-31T23:05:00.000-07:00

As usual, Kiera spent the weekend with her adoptive family, our neighbors. Yesterday the kids were bouncing around like caged monkeys, so I decided today I would take the other 3 to the waterpark. Phillip's friend Kale came along and was really helpful with Bella. After about an hour, Lily starts to get tired and pretends not to hear me. This escalates to nasty looks and tongue protrusion, which requires me to park her butt on the side and have numerous talks about public behavior. We take a break for lunch and she perks up a bit- but soon gets back into her "tired" behavior. I would have left earlier, but the boys and Bella were having so much fun. As a result, I tiptoed around Lily trying to keep her happy until it was time to go. And this was for fun. Mostly it just makes me miss Phil. The rest of the afternoon was spent dealing with what I will refer to as aftershocks. They will be expected to continue through tomorrow. Phil is convinced it's the mitotane. I don't know yet. I guess we'll see in a month.

While we are at the waterpark- Phil sends me pictures from his adventure today. He must have been homesick- he went to the San Diego Zoo. Didn't have to go all the way to CA to see monkeys wrestling and a tired mama bear.

Time for a change...

2009-05-30T13:53:00.000-07:00

The other layout was too fall-ish....I finally took the time to make it Lily purple!

Do you hear what I hear?

2009-05-30T10:40:00.000-07:00

Big day! Lily got her hearing aids. I have already noticed a difference, now it will be a matter of her getting used to how they feel. She wore them for an hour yesterday which required bribery in the form of Dr. Pepper and ice cream. They are amazing lil apparati.

We haven't seen Miss Julie for weeks, so she met up with us right before Lily's appointment. Lily had just fallen outside on the sidewalk and was still carrying on about how her legs weren't working when we spotted Julie. She mentioned a boy who would always spike fevers before he had to have treatment and how Lily seemed to always fall on the way into the hospital. Lily tends to fall everywhere- but the problem is moreso the curb that Lily feels compelled to "balance" on. Needless to say- her balance isn't so hot.

It is also interesting to see the interaction between a child life specialist and other fields that she doesn't usually get called in to help with. Julie is by far one of the most overtasked individuals in the hospital. They finally hired another child life specialist because it is impossible for one person to be everywhere all the time. The peds ward is usually busy and they are always calling on her in clinic, in radiology and the ER. When Lily's audiologist arrives, Julie is in the midst of talking to Lily about her new aids and tries to get Miss Amy involved in the prep. Miss Amy kinda laughs- as she does every session, of all the things Lily goes through- these appointments are minimally invasive and not even uncomfortable. So Julie continues on, and this is one of the reasons she is so good at what she does. It is important to her that kids are prepared and given tools to deal with any situation in the hospital- even if it seems silly to grownups or practitioners.

So Julie gives us big hugs and is off to some appointment we have probably made her late for, and we go into the hearing aid fitting. Lily is on the emotional upswing and now her legs are starting to work and she is talking a mile a minute and asking Miss Amy every question under the sun about this part and that part and what is that lady doing, what is that room for, where is the bathroom....Miss Amy fits the plastic earmold to Lily's ear and files down any parts that might rub. The earmold part is clear with pink and purple glitter inside it. It connects to the hearing aid by a clear tube- the hearing aid itself is pink. When she gets older, she may want it to blend- but for learning purposes right now- it's probably good for it to be visible. While Amy starts to program the aids- Lily plays Silly Lily Bug with her molds. At this point she has regained full function of her legs and wants to check in on what Miss Amy is doing.

The audiology clinic is a series of sound proof rooms, each one connected by a 1 way mirror to the office of the audiologist. Lily hops out of the stroller and gallops to Miss Amy's office. As she hops in- she declares- I farted! And giggles like a mental patient. I remember the days when this would mortify me- now I laugh and offer the socially acceptable apologies. Man what did I feed the child- Miss Amy fortunately has a mini room freshener- "just for these occasions" . Yep that's what working with kids teaches you- you need patience, hand sanitizer and air freshener.

We put Lily's aids in, she hooks her up to the computer and it starts programming. We will wait a couple of weeks for a hearing test, they are set low and that will give her some time to get used to them. We go over the details, operation. I ask all the questions I can think of- think that it seems simple enough, what could possibly go wrong? We leave and by the time we get to the car she is demanding to take them out. She is holding a drippy ice cream cone that was reward for her aggreeing to wear them all the way home. The Dr. Pepper, which was my reward for having to sit in traffic on the way home- now becomes her incentive to continue wearing them. I see how this isn't the best parenting technique and the inconsistency of it- but frankly I'd rather be thirsty than listen to whining the whole way home. The problem was that as she was hopping into the car- she realized that the aids are in her ears. When she rides in the car- she likes to suck her thumb and shove her nee nee in her ear. This presents a problem. In the future we may have to go to 1 aid ops in the car- but I would like to set a precedent here. Precedents are very important when dealing with Lily. Hence the bribery problem.

I had loosened the Dr. Pepper lid for her. Apparently as she was getting into the car- she shook it, dropped it and probably agitated it in many ways. As we are getting to the highway, she has tired of the ice cream cone- which I fortunately had the foresight to leave a baggie in the seat next to Lily, for her to dispose of. She opens- well starts to open the Dr. Pepper- see you all see it coming- I am in the front seat- I see it coming- and there it is- Old Pepperful. I am chanting -put the lid back on- put it back on! She gets it closed and is dripping. She starts howling and then realizes that if she licks herself- it tastes good. That buys me enough time to get a successful merge onto the highway. She then realizes it is wet and cold and starts wiggling out of her dress- all the while trying to suck on the dress. Ick. She tries again 3 times before she can successfully open the beverage. I listen to Lily on auto repeat for 45 minutes- I need to take a bath. I am sticky. I have to take these out(aids) so I can have a bath. I need to take a bath. I am sticky. OK rain Lily- GOT IT.

We stop to pick up dinner and the aids are out of her ears before I even get my seatbelt off. They are making this horrible screeching sound- which I was told they would not do. Lovely. I put them in the case and will deal with it later. Apparently that made them happy- they stopped screaming.

So this morning, the plan was to keep the tv turned down to acceptable decibels for the rest of us, and when she asked to turn it up- present the hearing aids as the only option. 2 tries later- no hearing aids on and she is resorting to tormenting everyone. Just keep swimming. Just keep swimming. I quasi put them in my ear to see if they are working-I think the noise is the high frequency amplification for her- but it's annoying. I realize how little I really understand about this whole process. Ugh. I am going to try turning the volume down - but the problem is that if the volume is too low- she can't hear and they are more like ear plugs so she wants them out. I don't think it's too high because Amy said she purposely undercut it so that it wouldn't be too loud while she was getting used to them. I know Phil is lamenting not being here to play with the new electronic gadgets- and I really am wishing he was here- because all this trial and error and figuring out stuff would actually be fun for him.

It was fun to watch her run around the house when she first put them in this morning and I could tell she was listening to things like the scuffling of her feet and things. But the feeling of them in her ears is going to take some getting used to. We may have to put them in and go for an outing so she can be distracted by new sounds. My goal is to have her wear them for at least an hour and a half today. It may be in smaller chunks, but that's the goal.

They also have a remote. AND the remote uses the same charger as my phone- BONUS. The remote looks like a ghetto ipod nano. So I was playing with it and Lily asks me " Can you put songs on now?" and points to the remote then her ears. I tuned the tv to music on demand- but she only lasted 1 song before she pulled them out. Logged: 5 minutes. 85 more to go.

Beyond Thunderdoom.

2009-05-29T08:37:00.000-07:00

We walked over to Lily's friend Maggie's house the other day. 2 of her old buds from preschool are getting ready to move, so we wanted to say goodbye. Lily and Bella took turns riding a bike and I had the stroller as a back-up. I've done this before and gotten burned- pushing two kids on bikes for a half mile is murder on your back. We had a nice visit and as we stepped out the door, it starts to pour. Normally, I would just walk home in the rain- but my friend had a big ol suburban- so we caught a lift. It's probably just as well- Bella ended up with sniffles by the time we got home.

I also noticed Lily had trouble listening(hearing) me while she was riding her bike. A BIG problem safety wise- so I put a call in to the audiologist. Last word was that they would call when the hearing aids came in. That means if I don't call, we may never hear back. I have called a couple of times, but never reached a human. I have very little faith in messages being returned- but I left a message yesterday. Lo and behold, in the afternoon I get a call from the scheduler who would like to schedule an appointment for Lily today at 3 pm. Man I should have left a message weeks ago. Of course there was no knowledge of a message- so we have to chalk it up to one major flippin coincidence....and I'm pretty sure everyone cuts out as early as possible on Fridays- but whatever. The point is we are going to get Lily hearing better.

We had a talk about helping her hear and she keeps telling me she hears fine. Of course when I point out how loud we have to make the tv - she just giggles. I am really excited to see if this helps. I think it might remove a lot of her frustration,and mine. They will probably take some getting used to- and we all know Lily isn't great with change- but it's all gonna work out. And once I again I have to be extremely grateful for our military health coverage- because these puppies are crazy expensive. I started looking online just out of curiousity and wow!

Phil leaves today for his 1st TDY since Lily's diagnosis. I'd have to say my anxiety levels have been pretty high regarding this trip. Usually when he goes- it's tough not having a break, but I get the kids on a good schedule, at night I put them to bed and either do things around the house, scrapbook, read or just take a bath. Previously, we have had some pretty bad luck with kids getting hurt while he's gone. I am trying to be positive, but part of me hopes that if I expect the worst- then Murphy will prove me wrong and terrorize someone else who might be in a better place to deal with his shit- cuz I'm pretty much still over it. I am not exactly sure how long it will take me to recover from the past few months. I know a lot of people never recover. I don't feel impending doom most of the time now.

Dog Days of Summer

2009-05-26T19:05:00.000-07:00

Talk about a busy day! And we were "done" by 12 noon. We left early to pick up Phillip at Stew's house. He needed some "guy" time and got to have a sleepover there last night. I got the girls dressed and myself showered and dressed and then gave Lily her meds. She promptly projectile vomited it. She was a doll and deflected it so that although I did not get drenched- while she was bathing I had some heavy duty cleanup. I worried about her not getting her hydrocortisone dose- mostly since we had a bunch to do- so I packed it and made it out the door.

Although Bella hinted at it over the weekend- she is officially "over" her fear of Aaron who is home from West Point for a short break. She also warmed right up to our friend Ed and when Stew comes over(without Jackie) she makes herself a fixture on his lap. This means that she periodically will end up with food or drink in her hair- as we have found these guys eat constantly! All is fair in love and eating though because I have caught her dipping her hands in their drinks or licking chips and putting them back and I just giggle to myself. But I digress.

We get to Stew's house and Bella grabs her bag, hops out and immediately tells everyone goodbye. Allright that isn't exactly how it happened. I was finishing up a quick call and I saw the kids file out of the car. So I head into the house- greet the guys- make chit chat- see 3 of the kiddos running around- wait- where's Bella? "I dunno" shrug the boys we didn't see her. Oh crap- I left her in the car. I start running to the car, expecting the neighbors to be standing around in disgust as my lil redhead screams in anger...but nothing. I open the door- she's sitting quietly sucking her thumb, she looks up at me "I wanna come too mama." Ok love, let me help you out of the car. So this is the point that she grabs her bag and hops out. I guess I can't be surprised that she didn't want to hop back in the car to go to the hospital with us. Aaron's report was that they went to the park, she said she was done they went home and she fell right asleep on the couch. Since he was doing me a huge favor by watching her- I was glad she was easy for him. I even forgot to tell him to hide the markers and scissors.

We get to the hospital and find a spot. Phil and I are already lamenting how much we will miss our temporary handicap parking placard- but will not miss the handicap of really needing it. First up is our photo shoot with the volunteer dogs. I was only expecting Indy- but there were 4 of them. It was like an afternoon out with my kids- but furrier. We got right down to business and Phillip and Kiera and I had the job of watching. It was a riot watching 4 people, try to arrange 4 dogs around Lily while she just sat there with this silly grin. Of course I must've hit the dial on my camera at some point because all the pictures are slightly blurry-but I got a great one of her and Indy- which is what I was hoping for. Apparently the photographer got some good shots-At one point I asked him which was easier dogs or kids- he said "neither". Ahhh a still life kinda guy.

One of the things I've noticed is that even if there isn't a lot of background noise- if there's a lot of activity- she can't hear. In a situation like this- she has no idea what we are telling her to do because since we don't have a puppy(other than Bella- and I don't believe in leashing humans even if they do exhibit puppylike behavior most of the time) Lily doesn't know much about dog lingo- hence making the words confusing to her. Note to self- call and check on hearing aids. sheesh.

So we head off to clinic and are greeted with the usual fanfare. Everyone is shocked at how fast her hair is growing back in and how blonde it is. Phil still contends it's not blonde, it's white and it's sticking straight up because of all the stress she has been under the past few months. She was very brave for the port access and since she is on the upswing- and while Lily was going on and on about how she didn't want to take the needle out- Florence drew the blood she needed and immediately pulled the needle out not even giving Lily enough time to yell ouch! And she didn't fuss about it either. Fortunately she wanted to stay and watch a movie because Phillip and Kiera both had apointments with "the feelings doctor". Whenever they have a day off that coincides with a Lily appointment- they take turns meeting with a child psychologist. I figure it just defrays their out of pocket expenses they'll have to shell out later for therapy as adults.

After she talks with them- we talk about how they are doing and what we can work on. The past few sessions have been about death and their worries, as each was very saddened by Elikia's death. They also talk about feeling left out and all the "normal" things that go along with being in our situation. They still are coping very well, which is good to hear. I did chat a bit with her about the kids being positive for the p53 mutation and kinda if we were heading in the right direction. Basically we have decided that we will do preventative screening, nothing invasive at this age- but we are going to treat it like normal screening- because for them- it will be their normal. There is no sense in giving them the nitty gritty details, because they can't understand the overall implications and it will scare them. She agreed whole heartedly. They know we have a family history of cancer and that helps decide which tests we have to do- some people do other tests and some people don't do many at all.

Lily's bloodwork is good and we are cleared off for a whole month. In a couple months it will be every couple of months and then a couple times a year. Right around our next visit- we will be done with mitotane. According to my calculations we are done on the 29th of June- but Dr. K is gonna crunch the numbers to be sure. For those keeping score at home- this is week 28 of treatment. We are done after week 32. Which means I have lots o party planning to do! I'm tempted to start counting down days- but I will wait for the official count before I do that.

Sunday, Spongy Sunday

2009-05-24T15:22:00.000-07:00

Dare I say things have been going Ok? Despite Bella, again getting a hold of the scissors and chopping off a few more of her beautiful strawberry blonde locks(I'm starting a collection to make her a wig) and Bella getting a hold of markers and coloring everywhere(Thank God for magic eraser), and Bella taking all of her clothes out of the closet(they're still on the floor- why bother- she'll just take them down again- and WHY is she still naked?)- We haven't been up to much.

Phil took the 2 littlest monkeys to the waterpark - which is now a wet n wild- so they got to see spongebob! Lily's a fan. If you couldn't tell by the smile. I imagine that Bella was literally attached to Phil while he was trying to take a picture- brave move to bring out the camera phone at the waterpark while holding a wild Bella- but apparently worth the risk as opposed to coming home and me saying- you didn't get a picture????? That's my bud! Well played.

Phillip and Kiera ditched us for their respective friends. I kinda like this age- they can do things for themselves(if given detailed instructions), they only want to be around you sometimes(usually when you are swamped) and they love going out with friends(which gives me this rare thing called "alone time") It's this amazing period of time where no one is asking you for anything and there is no one in your personal space. I keep feeling like I am forgetting something though. Kinda like when I go someplace with less than 4 kids- 1,2,3..where's?..oh yeah he's at a friend's house. The mini stress moments keep me alert and the hair dye companies in business.

Lily goes in Tuesday for routine bloodwork and she gets to have a photo shoot with one of the volunteer dogs for their annual fundraiser calendar. She and her lil bud Adam are good friends with a yellow lab named Indy(short for Indiana Jones). He's a sweet dog with some really fun tricks. He would come visit Lily when she was in the hospital and always cheered us all up!

Adam's mom had us over for some yummy BBQ last night and it was hysterical to watch the lil baldies play while we got a chance to compare chemo notes in a social setting. It really is a crazy bond that brings us together. He is a year and a half and has neuroblastoma which is treated very similarly to Lily's cancer- and incidentally they think his originated on his adrenal gland. So His mom is pretty well read on adrenal cancer, which you don't see every day. He is another amazing little personality with these great big blue eyes. He kept sneaking the girls' food, and Lily finally took to feeding him to control her dessert theft.

Chemo Independence Day Celebration

2009-05-22T11:55:00.000-07:00

We have officially started planning :

Lily's Chemo Independence Day Celebration!

Save the Date: July 4, 2009

I feel like I am constantly knocking on wood these days. We have picked a place, put a deposit down and are starting to plan our big celebration! It will be the afternoon of the 4th. It was tough picking a date, Lily doesn't finish mitotane until the end of June and Phil is slated to go TDY the 2nd week in July- so it really only left a couple days to choose from! What better day to celebrate independence from chemo, but Independence DAY!

This is a way for us to get together with our family and friends here who have been so supportive throughout Lily's treatment, to say THANK YOU and to celebrate moving into a new phase of our journey.

Stay tuned for details!

Klaus' Surgery

2009-05-19T10:58:00.000-07:00

Today our little friend Klaus Heiman is in surgery to remove the Plexiform Histiocytic Tumor from his jaw. Unfortunately ,once the surgeon got in there, he decided it was best to remove part of Klaus' jaw bone. This means a bone graft from his fibula and a pretty extensive recovery. He and his family live in Colorado, but found the best team for the job in New York and will be living there until his recovery.

Please include Klaus and his family in your prayers and thoughts and send positive vibes their way.

Silly Lily Bug and Bella in a Box

2009-05-18T19:47:00.000-07:00

Call now and you too can have a Bella in a Box- it's the latest craze. All the cool moms have one. It's part puppy, part monkey, part kitten and very low maintenance when it's sleeping. Move over Sea-Monkeys- here comes Bella in a Box.

Today, Lily also got one of the coolest books I have ever seen. My friend Leesa, who always seems to find the best gifts, sent it for her. It's called The Silly Lily Bug Book and it's a personalized book with Lily's pictures and all. It even has purple tiger lilies. The creator is Jennifer Hess and she has other books too that can be personalized. I'm always on the look-out for great gift ideas, so I thought I would pass this one along.

sillybugbooks.com

Catharsis

2009-05-18T09:09:00.000-07:00

I tended to the yard the other day. Something I have not done since October. Lily and Bella played in the sprinklers while I hacked and cut and removed most of the bushes in our backyard. They were overgrown and I had a lot on my mind. Then I discovered bugs, their fate was sealed. 7 bags of foliage later, I figured I let my emotions get the best of me. Better the plants than my hair. Kiera came home and with a shocked expression declared- The yard is bald! Phil merely said, I didn't realize we had so much fence. I guess bug spray and a little pruning would have sufficed. Oh well, bug spray probably causes cancer. Actually it causes reduced adrenal function. Mitotane is isomerically linked to DDT. It was discovered to reduce adrenal function under initial trials as a pesticide.

Phil helped me tackle the front lawn this weekend, but I think he was merely protecting the shrubbery. Then, having maxed out our productivity inclination for the weekend- we took the girls to the water park. Phillip was at a birthday party so Phil was feeling the abundance of estrogen. It was a good time. Our theory was that it was a public place doused in chlorine- hopefully that would be 'safe'. Yet after about the 85th time of yelling at them to stop drinking the pool water- I realized our logic had been faulty- very faulty. We all hung out for awhile in the wave pool, then I got to chill and hang with the littler ones in the keiki area while Phil and Kiera had some quality time on the big slides. It's always fun to watch them have fun.

We also reinstated game night. We had purged most of our games a few weeks back since they were missing parts and pieces- so when I spotted a self contained clue game at Target- I decided game night was back on. After explaining the premise to Kiera- we started. She did not like to go into the rooms, or guess who dunnit, she just kept moving her piece around. I was wondering if she was really grasping the concept, but was pretty sure I had figured out the mystery when Phil made the accusation: I think Miss Scarlett did it in the Study with the Knife. I guessed Miss Scarlett and Knife- I wasn't sure about the room. He looks at the cards- KIERA! do you have the knife? She looks at her notepad then her cards. Oh yeah I guess I do. I thought Phil was going to explode- he's very competitive and she sucked the victory away from him. Allright round two. Each time Phil asks her specifically if she's sure and tells her to look at her cards to make sure. He is more hesitant this time- I thought it was fairly bold for him to make the accusation this time- but he was sure- I think it was Professor Plum, In the conservatory, with the revolver. Again, he looks at the cards, again I think he may just explode. KIERA! DO YOU HAVE THE CONSERVATORY?!! And with a completely innocent befuddled look- Kiera says - what? as she proceeds to look at her cards. I am laughing hysterically at this point. She totally has the conservatory. I now realize we have to play a third game and if Phil doesn't legitimately win- we will be here all night. He managed to pull it off. And later, while we were debriefing the game- he says "I think she just wanted our attention." Well duh- when was the last time Kiera got the exclusive attention of both of us- it definitely wasn't at the talent show- we could have been trying to land a lunar module and she wouldn't have noticed- but she was as content as could be pretending to play with us. Now if we can convince her how much fun it is to actually PLAY we'll be onto something.