12 Days of Sickness

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

This free digital scrapbook created with Smilebox

The Ties that Bind- Scissors anyone? anyone?

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

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.....

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

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

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

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....

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

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!