ROUGH DRAFT ONE
- Artifact One: Blog Post for my sister's Treatment
- background of my sister's cancer
- background for specific surgery
- significance her diagnosis had on my family
MONTHLY ARCHIVES: DECEMBER 2011
2012 is Gonna Be a Great Year!!!
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Happy 2012 from the Burnettes!!! I just have a this feeling that 2012 is going to be a year full of hope and peace! As I look back on 2011, it has certainly been a crazy one, but a year that I’ll never forget. And I don’t think I’ll have bad memories from it. I honestly believe that this year has brought more clarity and reason into our family’s lives. We’ve learned to appreciate each other more, to cherish all of the precious moments we have together, and to just LAUGH and smile a lot more! 8) It’s crazy to think about how last year on New Year’s Eve, the four of us were up in New York City. Ashley, the day before, had just endured her major surgery to take the largest tumor out of her abdomen. Here’s a photo of Ashley from that day…
New Year's Eve 2010
Pretty sad to see, huh? The four of us had to spend it apart…..Hunter stayed in the PICU that night with Ashley who was heavily sedated, Olivia was up at Leigh’s apartment celebrating, and I was in bed at the Ronald McDonald House with a sore throat and fever. Pretty depressing. I could hear the fireworks booming all the way from Times Square at midnight for about 30 minutes and I remember thinking to myself….”Wow! Look where we are!” It was a surreal feeling and to be where we are at this point, I feel truly content and hopeful.
So…..it appears that unless something “totally crazy” happens, which happens too much in this crazy cancer world, we will start the first round of the ch14.18 antibodies treatment on Monday, January 9th!!! Last night, Ashley started taking preventative capsules for neuropathic pain to get ready for the treatments. This Tuesday, we will go into surgery at UNC to get her central line replaced…..we’ve noticed some blood around the insertion site lately as if it was pulled out a little, so to be on the safe side, the pediatric surgical team just wants to go ahead and put in a new one. Then on Thursday, we will go back to the clinic for baseline bloodwork and other tests, and then on Friday, she’ll get her first of many GM-CSF shots. On Sunday, January 8th, she will be admitted to the Pediatric Intensive Care Unit (PICU) to prepare for the first infusion of the ch14.18 antibody on Monday. She will get an infusion over approximately 10 hours on Monday, Tuesday, Wednesday and Thursday and then if all goes well, possibly go home on Friday. From what I’ve been told, during the daytime she will be given a good amount of morphine and other pain meds to help with the pain. You see, neuroblastoma is cancer of the symphathetic nervous system, so the antibodies are made to go in and attack the cancer cells. However, while it’s attacking the cells, it’s also attacking the nerve cells, which can cause her a great deal of pain. 8( So the pain meds are given to help relieve this pain. Due to this, I hear they often sleep throughout most of the day because they’re so drugged up and then are wide awake overnight. Plus, the PICU is not the quietest location in the hospital, so sleep is something I’ve heard we won’t get much of. 8) Oh well, we’ll deal with it! It’s ALL worth it!!!
Basically, we’re looking at 6 rounds for this antibodies treatment:
Round 1: 4 days in the PICU getting the ch.14.18 infusions, then home 2 weeks on Accutane
Round 2: 4 days on 5 Children’s (the 5th floor of the Children’s Hospital/cancer floor) getting the IL-2 infusions, followed by 4 days the following week in the PICU getting the ch14.18 infusions, then home 2 weeks on Accutane
Round 3: 4 days in the PICU getting the ch.14.18 infusions, then home 2 weeks on Accutane
Round 4: 4 days on 5 Children’s getting the IL-2 infusions, followed by 4 days the following week in the PICU getting the ch14.18 infusions, then home 2 weeks on Accutane
Round 5: 4 days in the PICU getting the ch.14.18 infusions, then home 2 weeks on Accutane
Round 6: Accutane at home for 2 weeks
Because her blood cell counts will be affected by the treatments, we’ll most likely spend some of the in-between weeks at UNC on the 5th floor with fevers and neutropenia. They do scans at various levels throughout the treatment and if there is ever any progression of disease or if she has trouble tolerating the infusions, they’ll stop the treatment. If all goes okay and carries on according to plan, all of these treatments will carry us into May. We’ve heard from many of our friends that have already gone through it or are currently going through it, that this is the toughest part of the treatment plan for neuroblastoma for all involved, but the proven results make it sooo worth it! It’ll be a tiring half of the year, but I am SOOOO READY to post on here that Ashley is CANCER FREE and hopefully I will be able to do this in 2012!!! I’ve got my toes and fingers crossed so tight you wouldn’t believe! 8)
Thank you for continuing to stick by us and for continuing to care about Ashley. Please keep the well wishes and prayers coming in hopes that our first round of this treatment goes smoothly! Our hope is that we will learn to navigate through this new round of treatment with ease and that our family will be able to continue to laugh and smile throughout. Please pray that the treatments aren’t too hard on Ashley and that Olivia feels our love and support during our times of absence. Please pray for all of our friends that are currently fighting their own battles in this pediatric cancer world in hopes that they too will be cured in 2012……namely Taylor, Johnathan, Franklin, Dylan, Jenna C, Jenna W, Cooper, Shemar, Connor, Zach, Xander, Grayson, Collin, Patrick, Harrison, Graham, Dimitri, Wesley, Grier, Marrett and Samuel…….and please keep those families that have unfortunately lost their loved ones this past year in your hearts as they will NEVER leave ours. 8) Wishing you ALL a HAPPY NEW YEAR!!!! XOXOXO
- Two: Chapter from Wonder
- how i cried first time reading this
- significance this movie holds to my family
- how my life truly mimics Via's
- how her cancer pushed me into a silent hole
- Space Oddity significance
Via
"Far above the world
Planet Earth is blue
And there's nothing I can do"
—David Bowie, "Space Oddity"
A Tour of the Galaxy
August is the Sun. Me and Mom and Dad are planets orbiting the Sun. The rest
of our family and friends are asteroids and comets floating around the planets
orbiting the Sun. The only celestial body that doesn't orbit August the Sun is
Daisy the dog, and that's only because to her little doggy eyes, August's face
doesn't look very different from any other human's face. To Daisy, all our faces
look alike, as flat and pale as the moon.
I'm used to the way this universe works. I've never minded it because it's all I've
ever known. I've always understood that August is special and has special
needs. If I was playing too loudly and he was trying to take a nap, I knew I would
have to play something else because he needed his rest after some procedure
or other had left him weak and in pain. If I wanted Mom and Dad to watch me
play soccer, I knew that nine out of ten times they'd miss it because they were
busy shuttling August to speech therapy or physical therapy or a new specialist
or a surgery.
Mom and Dad would always say I was the most understanding little girl in the
world. I don't know about that, just that I understood there was no point in
complaining. I've seen August after his surgeries: his little face bandaged up
and swollen, his tiny body full of IVs and tubes to keep him alive. After you've
seen someone else going through that, it feels kind of crazy to complain over not
getting the toy you had asked for, or your mom missing a school play. I knew
this even when I was six years old. No one ever told it to me. I just knew it.
So I've gotten used to not complaining, and I've gotten used to not bothering
Mom and Dad with little stuff. I've gotten used to figuring things out on my own:
how to put toys together, how to organize my life so I don't miss friends' birthday
parties, how to stay on top of my schoolwork so I never fall behind in class. I've
never asked for help with my homework. Never needed reminding to finish a
project or study for a test. If I was having trouble with a subject in school, I'd go
home and study it until I figured it out on my own. I taught myself how to convert
fractions into decimal points by going online. I've done every school project
pretty much by myself. When Mom or Dad ask me how things are going in
school, I've always said "good"—even when it hasn't always been so good. My
worst day, worst fall, worst headache, worst bruise, worst cramp, worst mean
thing anyone could say has always been nothing compared to what August has
gone through. This isn't me being noble, by the way: it's just the way I know it is.
And this is the way it's always been for me, for the little universe of us. But this
year there seems to be a shift in the cosmos. The galaxy is changing. Planets
are falling out of alignment.
- Three: lyrics to "Waving Through A Window"
- Dear Evan Hansen
- struggles with anxiety
- how this musical helped me relate and come to terms with my anxiety
- how anxiety was caused by my experiences as a cancer sibling
I've learned to slam on the brake
Before I even turn the key
Before I make the mistake
Before I lead with the worst of me
Before I even turn the key
Before I make the mistake
Before I lead with the worst of me
Give them no reason to stare
No slipping up if you slip away
So I got nothing to share
No, I got nothing to say
No slipping up if you slip away
So I got nothing to share
No, I got nothing to say
Step out, step out of the sun
If you keep getting burned
Step out, step out of the sun
Because you've learned, because you've learned
If you keep getting burned
Step out, step out of the sun
Because you've learned, because you've learned
On the outside, always looking in
Will I ever be more than I've always been?
'Cause I'm tap, tap, tapping on the glass
I'm waving through a window
I try to speak, but nobody can hear
So I wait around for an answer to appear
While I'm watch, watch, watching people pass
I'm waving through a window, oh
Can anybody see, is anybody waving back at me?
Will I ever be more than I've always been?
'Cause I'm tap, tap, tapping on the glass
I'm waving through a window
I try to speak, but nobody can hear
So I wait around for an answer to appear
While I'm watch, watch, watching people pass
I'm waving through a window, oh
Can anybody see, is anybody waving back at me?
We start with stars in our eyes
We start believing that we belong
But every sun doesn't rise
And no one tells you where you went wrong
We start believing that we belong
But every sun doesn't rise
And no one tells you where you went wrong
