I cannot take Lily anywhere without someone reaching out to comment or touch her amazing curls. As she also likes to dance her way through every situation- be it walmart or doctor's visits- she has been likened to Shirley Temple on more than one occasion. I love her curls. LOVE them. I hate trying to tame them, wash them, and brushing them is just a pain, for everyone involved, but they are a part of her. So today when she insisted on having them shorn off, I was taken back. Back to three years ago, fighting through tears as I shaved her tiny 4 year old head so we no longer had to watch the beautiful curls fall out. She rocked bald then- it never bothered her not to have a head full of bouncy curls- she was still Lily. Just as I realized then- it occurred to me today- the thought of cutting her hair was my issue- not hers. I needed to trust what she wanted and help her in this journey- remembering a time, many many years ago when I demanded a Dorothy Hamill do and spent years unable to set foot inside any hair cuttery without a panic attack.  Just like 3 years ago- she was comfortable in her choice, even if I was not. My heart literally hurt as I watched the dark blonde ringlets tumble down  to the floor to be stepped on without care. I faked 2 phone calls and took another to walk outside to catch my breath.  I kept reminding myself it was hair, it was only hair. I reminded myself that 3 years ago, I hoped she would just make it to 5 and just yesterday she turned 7. This was only hair.

Every year, right around now- St. Baldrick's events roll around. I never understood them. I've supported many, been to one, but when asked if I am shaving my head- respond- nope- I'm sure I'll get my chance- such is life when you have a hereditary cancer syndrome.  It mystified me that people want to do this, that they have this choice. It bothered me immensely the year Lily was bald. I hated that everywhere we went- her little noggin elicited such pitiful looks, some would avert their eyes - others would give you that knowing nod and every bit of it hurt. It hurt to be on that end, it hurt to be pitied- it hurt to know there wasn't a damn thing I could do about it. Yet Lily never noticed, the looks, the pain- that was adult business- kids would just ask- why don't you have hair? It bothered me that an entire group of people would shave their heads when they were perfectly healthy and did not have to. But then I looked into where the donations went- to really good programs and research efforts. And people really have to step outside of their comfort zone to do this- and it costs next to nothing to do. So many organizations put so much money into overhead costs, printing, branding and whatnot- all of which is not going into the pockets of researchers looking for a cure or on the head of a little munchkin fighting for their life. It changed my whole outlook on these fundraisers. I really respect St. Baldrick's and those who are brave enough to shave their craniums to stand beside our littlest fighters- rocking bald.

As Lily's curls fell around her today, I again fought back tears. Those curls were more than just hair- they are 3 years of healing, 3 years of growth, they represented everything we fought to get back from 3 years ago. We cut her hair then so we didn't have to continue to watch them fall out bit by bit. Today she chose to cut them, because she wanted to. It was when she sat there grinning ear to ear that I knew this is exactly where we are supposed to be.  Once again it took a brave little monkey to show me something I had overlooked. When she turned to me I saw nothing but her big green eyes and a huge dimple, both which were usually obscured by gigantic curls. For at least 2 of the past years I fought with her daily to pull her hair back so I can see her beautiful face- today she won that fight- but then again so did I.

LIVING with Li Fraumeni Syndrome

Li Fraumeni Syndrome is something I have lived with since I was a child. It didn't have a tough to pronounce name back then- we just called it cancer. Then we called it p53. It was our family joke- no one knew what it meant, but it was our bond. It changed our dynamic, reduced our numbers, left scars and broken hearts in it's wake, so we turned it into a big irish wake. It also gave many of us an immense strength, unsurpassed bravery, and a compassion that is unparalleled.  It is part of my history, something to look for in the future and really tough to LIVE with. Some has asthma- and face many episodes of not being able to breathe- living with LFS is not like that. It can be- it knocks the wind out of you and threatens to kill everything you hold dear in record time- but there are times when you can breathe just fine. LFS is like being one of Dr. X's mutants- you spend a lot of time waiting to see what your super ability might be as a trade off for the mutation. So far the only increased power is the ability to field 10x the normal sense of urgency. Yet when you meet someone else with LFS- you get a feel for what the trade off is- you are in a select group of people with a strength and sense of humor like no other and I am grateful I get to know them.

Most days you feel like you are in the middle of a lightning storm, feet firmly on the ground- you look perfectly rational except you seem to be holding a kite with a metal key tied to it. This could be a sign of absolute genius or mental instability and you won't know for sure until the lightning strikes.  You could be brilliant, but you might be a crispy critter- it all depends on if radiation treatment is called for or not. Every headache threatens brain tumor, the flu hints at stage IV stomach cancer- but could also be a brain tumor. Is this a bug bite or sarcoma?

So you feel like an evil scientist after reading more than your average bear on every cancer known to man, being ready for potential symptoms and signs- you start the experimentation process. YOU are the experiment. There are no set protocols to screen for the plethora of cancers that could befall your meagre human form and doing the individual scans and tests to cover every body part that might be affected takes 2 months- I've done it. I found out a few things along the way- like I am clausterphobic. VERY clausterphobic- which is not good unless you consider that mri machines look like gigantic powdered donuts and the sight of both now gives me cold sweats-it might be a good diet plan along side the go lytely(or swiftly and furiously) and the fasting for bloodwork and scans- but somehow, through great dedication and perseverance  I still manage to keep my weight up. I'll blame it on the other positive side of the gene pool that gave me this mutation- the stress eating gene.

 If you think about it- what doctor in his or her right mind would stand behind so many screenings and tests in a person who has an 85% chance of getting cancer in their lifetime- machines are bound to be run by humans- if the machine doesn't miss it- the human might. Good doctors will.  If you support the screening and the cancer isn't detected- who's neck is on the line? The only person who really loses here is the LFS person. If you recommend that LFS folks dedicated a huge chunk of their already limited time on this planet to lying in cold sterile rooms that make awful noises while enduring sometimes undignified and uncomfortable procedures- with the hope they might catch a cancer early enough to treat it, provided that it is even treatable- does it make a difference in the overall survival? Sometimes hope is the biggest key to survival and I've found that depends on the person. Some people want to know and spend a lot of time taking control of the situation and regularly get every scan imaginable. Some watch the signs closely and go into a provider at the sign of trouble. Some just want it to go away and wait to the very last second and often it's too late. Only one group of these people will a set protocol help to find their comfort and control in a bad situation. But the point is it will help people, so why not?  Because they don't know if it works. Technically ALL cancer treatments are still experimental and few are PROVEN to work. Patients are presented with information and given the choice to undergo treatment. It's a game of odds. I know LFS is rare , it will be next to impossible to get the sheer numbers for numbers sake to "show" that screening works. But the odds are in favor of survival the earlier cancer is detected- this seems like a no brainer to me.There are so many negatives to this situation- let's harness the positive. Let's encourage our best odds.

It's tough enough to have a family history of cancer. It's tougher being told you are probably going to get cancer and not only once but many times- but that's only if it's not one of the bad cancers because those will kill you quickly.  I see why no one wants to say anything- it's a no win situation- so take it back old school. Forget the bells, whistles and fancy names. You have a family history of cancer. Ok, let's watch you closely for known cancers in your family- and take into account other possible cancers. Then you have to trust your gut.  You have to know your body and what is normal and pay attention to things that are not. When Lily had a lump on her leg, my gut told me over and over again that it was not nothing. I've talked with enough LFS survivors who have said the same thing- some lumps didn't bother them and others they just wanted out and those ones usually end up being some rare fibrous or atypical something or other. So when it comes down to it- the best screening method is you. And then you have to fight to survive which in the case of LFS is sometimes a fight to get screened and then a fight to get that paid for. But you would be hard pressed to find many people who won't fight to survive once they have been diagnosed with cancer, I'm saying kick it back a notch and fight to survive before you have cancer. It's not easy, no one ever promised it would be- but it will be worth it.  It is possible to LIVE with Li Fraumeni Syndrome.

Li Fraumeni Syndrome Support Group

Li Fraumeni Syndrome is caused by a mutation to a tumor suppressor gene. In even the best case scenario- a mutation here is not a good thing.  p53 has been called the "guardian of the genome" and plays a HUGE role in making sure cancer doesn't go haywire. It makes sure DNA damage gets noticed and repaired,it makes sure the cell isn't reproducing like a bunny while damaged, and if it can't get a cell repaired- it makes sure the cell dies. It's a pretty cool thing. Except when you don't have it. Then you have p53 envy, you find you have a huge risk of getting cancer- and not just one cancer- many cancers over your lifetime. Kids who have the p53 mutation get more cancers than those who don't and I'm not the first to say- nor will I be the last to say- Kids should never, ever get cancer. It's just not right. That fact, especially when the tumors are brain or adrenal,  is actually one of the BIG flags to doctors that a family might have a mutation like the p53.

I learned about Li Fraumeni Syndrome in the late 80's, early 90's. My brother had just been diagnosed with a brain tumor, months after my cousin had been diagnosed with a brain tumor. An aunt and an uncle were also diagnosed with cancer during these months. Our first thought was- stop drinking the flipping water- but then an amazing article hit the newsstands about these doctors in Boston who were studying family cancers- especially brain tumors. My grandfather died of a brain tumor- so my mom grabbed the phone and started making calls. She talked with a young doctor named Frederick Li who sympathized with our situation, but my brother passed too quickly to be helpful to their studies- there was no biological material. It was mentioned that if my dad were to get a brain tumor- that would be an interesting case study and please let them know. 3 years later, my mother had to make that call. My father was tested, he had the mutation. There were many sleepless nights spent discussing the implications for me and being tested. They let me have the choice. In true 17 year old fashion- I said- um No, thanks, can I go out with my friends? I didn't want to know. I wanted to live, I didn't want to be shackled with the burden of knowing that I was going to die of some rare painful cancer. From what I saw with my dad and brother- knowing vs. not knowing didn't change the outcome one darn bit. That harsh reality came crashing down around me in 2008 when my 3 year old was diagnosed with adrenal cancer. I thought for sure she had a brain tumor. I had gotten a degree in molcular biology, I studied genetics- we talked about Li Fraumeni Syndrome- I never processed that adrenocortical cancers were one of the main syndrome cancers. I had done my research. Before it was Li Fraumeni Syndrome, it was called SBLA- but not in any circles that I was in. It was a wikipedia article that I stumbled on when I was looking up adrenal hyperplasia that brought that to light. It happened to be the day before my son's surgeon called with a referral to an endocrinologist for his pancreas injury-I asked her about my daughter's symptoms and told her our family cancer history and she gave Lily a referral to endocrinology too. This after 2 pediatricians told me not to worry about precocious puberty in a 3 year old- it could happen.

So I called the doctors that studied my family in the 90's and I asked what to do for my other kids, I wanted to know the benefits of testing them. They were supportive and helpful and I also learned about an upcoming conference the following year. It had been decades, but my assumption was this was so rare- there weren't very many other families out there. I wanted to be there. I wanted to meet the others. I wanted to see if they learned to laugh through the tears like my family does- because sometimes laughter is the only medicine.  I wanted to see what progress had been made and where things stood. I wanted hope that my children wouldn't have to watch me die from cancer and I sure as heck don't want to see any of them go through it over and over. At this conference I met others who wanted, like me- to help support each other and work together to find better treatments, screening and ultimately a cure. We are tired of watching our families suffer. We want to help bring together all the different facets of knowledge, research, and experience with this syndrome. We want to be the link the connects the disease to the cure. We are that link. It will take time, and sometimes more time than those with LFS are given. I was so saddened to hear that a lady I met at the conference recently passed. It was agonizing to lose a friend in December who I met because of this disease. But these were two amazing, strong women. 2 women who brought so much love and light to those around them and who both had so much more living to do, but couldn't because of LFS. Since we started in 2009, we have hit lots of bumps and several new cancers in our group. That is the nature of the beast. But through people with Li Fraumeni Syndrome is a better understanding of cancer and through this understanding will be a cure!  If you are interested in donating time to a great cause- check out our support groups at Facebook- we welcome help with open arms. There is one for those with LFS and one for Friends and Family.  But most of all I have to thank my monkeys and my husband who have dealt with a pretty messy house and a scattered mom- but do so gracefully so that I can try to help create something that will do so much good.

https://www.facebook.com/groups/90503981891/ 

Adrenal Insufficiency Initiative

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

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

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

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

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

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!!

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.