NED.
Our scans and labs looked really good. We don’t see any tumors, which is excellent. We are terrified of ATRT. It takes too many little ones and there’s no rhyme or reason. The doctors are perplexed as to why some kids get some relief and others don’t. We are still in a scary place. After Kai’s ATRT was considered relapsed, ie. the tumor in his posterior fossa came back after being removed and 2 more showed up in his brain, 1 on his spine-his chances went from a published 10% rate of survival to nearly zero. It’s a hard place to be, but we are determined to enjoy all of it.
Kai was ordered by his team to stop all chemotherapy as well as his other meds that have various jobs, one of which was to keep new blood vessels from forming because tumors need these in order to grow. So we have stopped it all. The reasoning is that there is no evidence to show that continuing the protocol we were on helps once you’ve gotten a couple of scans showing it’s gone. Also, and more importantly, Kai’s body was showing us that it could not tolerate the drugs anymore. His numbers were dipping much lower than usual. He couldn’t fight off colds anymore, we had just destroyed his bone marrow and it was time to stop.
Does this mean Kai is done with treatment? Not necessarily. He simply has a high risk of it coming back. So in the meantime, we will use Cannabis, because we believe it it’s healing powers. We will work to get him to eat a better diet and continue to get him all the multiple therapies he needs in order to thrive.
And most excitingly (and bittersweet for mom), Kai is going to start going to an in-home daycare for 3 hours a day, 2 days a week. That’s all we can afford at the moment and I also want to take it slow. He has never been left in anyone's care like that, it’s just been him and I in the hospital setting since he was just shy of 7 months old. It may take some time, but this is where Cruz went and THRIVED and we are excited for him to feel more independent, make some friends, and be exposed to more than just his little bubble.
We continue to lean on this community and we are grateful for it. We send all our love and will keep you posted on how Kai is progressing.
One love.
#keepfightingforkai