Hey everyone, couldn't get back into my account and I'm sorry I haven't updated here, I think since the original diagnosis. My wife has done an amazing job updating on the Facebook group through this entire journey:
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I look back at when I wrote this post when they first told us she had cancer and it feels like a lifetime ago. We were totally clueless, I remember putting CCMC into my GPS and we still ended up at the wrong parking garage. I probably had to GPS it the first 10 times.
We joined a bunch of wilms tumor Facebook groups, most them of them had pretty happy endings from what we could gather. Wilms being not common but the most common and treatable childhood cancer.
Right away the team of oncologist had a solid plan in place with a high cure rate. One surgery to get the kidney out and 8 or so weeks of chemo to get any other little bits. Maybe some radiation on the lungs.
Scary as hell but we knew what we all had to do and we could see the finish line.
That was 3 years ago and that wasn't the finish line, it was barely even the start. In hindsight I know now that cancer doesn't really end, in remission you just hold your breath until the next scan but try to live like you arnt.
A lot has happened between first treatment and now. The worst was when she was in multiple organ failure from a fungal infection band the doctor's had to ask if we essentially wanted to just ease her passing. Kendall surprised them all and walked out of the PICU just a week or so later.
The last numbers I could find from my wife's post
5 central lines placed
250 doses of chemo
6 surgeries
120+ nights in the hospital
100+ MRIs/CT/X-rays/ultrasounds
40+ blood and platelet transfusions
4 transfers to the PICU
10 days of radiation
1 trip to Boston childrens
3 relapses
She’s had her kidney removed, parts of her lungs and most recently a portion of her IVC. She gotten radiation to her chest and abdomen. Been in pulmonary failure, kidney failure, heart failure and had seizures from fevers that were too high.
She has autism, we've dragged her through hell half her life and she doesn't know why. She doesn't know why she lost all of her hair at least twice or why she has a rubber tube sticking out of her belly.
She's small for her age now, has barely grown since round one of chemo.
She's in first grade and loves it.
She has one more week of first grade and I don't think there will be a second grade.
A few weeks ago they told us the cancer was back for the third time. They did present options. Our first reaction was to get right back to it, cut it out and chemo.
Her one kidney is badly damaged from years of blasting chemo at it. Kidneys really don't get better, more often they get worse, hers is getting worse.
We could drag her through another year of hell and end up on dialysis and ultimately there still is no cure to be had.
What would she choose if she had a voice?
We made the hardest decision we will ever have to make and that's where we stand now.
She's been off chemo for a while and is feeling the best she has in years. Almost starting to gain some weight.
We've already visited the cape in May, we are currently on a lake in Vermont right now. At least another week in Vermont coming in July. We plan to dedicate this entire summer to memory making.
Everyone knows that she's dying except for her and as strange as it is, I'm thankful for that. She can live whatever time she has left without that burden and a few times each day I sorta forget too.
Thanks everyone, sorry if this is a jumbled mess of an update, the latter half of this I think I wrote for myself as much as for everyone here. I've been hiding in the cabin bathroom for almost two hours writing this, looks like we have a couple beautiful days coming up to get the boat on the water. Time to get out there!
