Our oncology teams in Philadelphia and in Kansas City have never seen a child survive this particular form of leukemia that was induced by treatments after battling neuroblastoma.
When you go through a bone marrow transplant process your immune system is completely knocked out so you can accept the donor cells. You have an immune system that is less than that of a fetus.
Since, then Braden has been in isolation. He has been unable to go into places with crowds for the past seven months. Places like school, theaters, indoor play areas, birthday parties, sports games, out door places where he would be digging in the dirt or that have a lot of dust (fungal risk), and pretty much any place that there is a crowd of people.
And because of the autism, he hasn't been able to understand why he can't go. He can't comprehend "you have to wait several months before your immune system is going to be able to handle being around other people or around dirt because it presents a fungal risk before you can do anything fun in places where there are more than 3 people".
So we have simply told him that he can go places "when his hair come back".
For the past seven months, when he has wanted to go someplace that he wasn't allowed to go I would tell him that we could go, but we needed to wait until his "hair comes back".
It was going to take several weeks for his hair to grow back and it was just easier to give him that tangible way to measure when he could go do things again.
He had a wish list of things to do when his hair came back:
* Chuck E Cheese (germ enough for my skin to crawl on a good day...let alone after transplant)
* The College Basketball Experience in down town KC...his favorite place in the entire world
* The Pumpkin Patch
* And the "Fun Fair"... aka..."Worlds of Fun"
It's a pretty simple list...he's not asking for much but they were things he just couldn't do until he was out of isolation.
Well....his hair is back....it's pretty thin but it's back!
And with that hair came...
Chuck E Cheese (still shuddering....)
where he played Skee Ball and Basketball...
and we rubbed his hands every ten minutes with Purell.
We made it to the College Basketball Experience and he was SO happy!!
And the second one was with friends and we trudged through a muddy corn field breaking ALL the old rules about dirt...
And we added in a few bonuses like feeding koi fish by hand at a pond....
We decorated a pumpkin that had grown on the ground and was covered in dried mud before we washed it...again so illegal with the isolation rules (fungus)...
He even went on a hay ride with all the neighbors dressed as a purple minion for Halloween!
And yes, he even started fourth grade last week.
Okay...so maybe he's not as excited about the whole "doing work thing" at school as he thought he would be but he IS excited to see his friends again! ;)
When Braden went into transplant we didn't know if he would survive that process, we didn't know if the side effects from transplant would be debilitating, and...
we didn't even know if he would be here seven months later for his hair to come back.
What a huge blessing! We are grateful beyond words for every moment...
because it could all change tomorrow.
Braden has won all of these memories....cANCER lost every one of these days!
TAKE THAT cANCER!