OT: My little UConn fan could use some prayers | Page 8 | The Boneyard

OT: My little UConn fan could use some prayers

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My heart aches just reading these updates. Having kids similar in age to your daughter I cannot even wrap my head around having to go through what you and your family are experiencing. Stay strong, we’re all fans of Kendall and the rest of your family!
 
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Thanks everyone. So far we've already had a pretty packed fun filled schedule. Cape cod, Vermont, an amusement park.

Her school did a trolls dress down day for her today too.

IMG_20220615_213706.jpg
 
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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:


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!
She is so cute. And happy. I know a ton of Husky fans wish her the best. Enjoy her.
 
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View attachment 77190

Still time to get to Kinsmen Brewing for @Bryan L ! Lots of raffle prizes and good beer. And it’s about 40 deg colder in here than outside.
Thanks CTA and everyone else who was able to make it!

The event was awesome, met at least one yarder for sure who I actually already knew but had no idea he was on the yard, he bought be a husky hops naturally.

The turnout and support was jaw dropping, couldn't have asked for anything better. 75% of the room was people we didn't even know personally, the kindness of our community throughout this entire ordeal never ceases to amaze me.
 
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As a new parent myself I can’t even begin to imagine what you and your family are going through. My thoughts and prayers are with you all, especially her! She’s so tough and brave and an inspiration to us all. Enjoy your summer with her, make those memories and enjoy every minute and keep posting pictures and updating because seeing her happy makes us all happy! Whatever the future holds, keep solace in the fact that you left no stone unturned and she’s enjoying her time without any fear and seems to be a happy child!
 

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