A number of you have offered to connect to resources or people you know who may have ideas for treatment so let me share the very little we know about the cancer. He has been diagnosed with Atypical Teratoid Rhaboid Tumor (ATRT). It is very rare and occurs most often in children younger than 3. Given that is so rare, there is not a standard treatment for it but rather the best luck is often found in clinical trials. But truth be told, the success rate is nothing to discuss. In addition, the fact that it is so aggressive and Kai’s has already spread throughout his brain and his spinal cord means that any treatment would have to be widespread and just as aggressive and this would be to maybe extend his life by some months. We are seeking out what experimental or clinical trials may be out there because we need to make an informed decision but I wanted to let you know what we are having to consider.
It is wonderful having Kai home, but he is still very sick. He rested the best he has in a while but he still can not sleep very long and this morning he’s struggling quite a bit. And as silly as it sounds, I hate medicine time – he’s not really eating/drinking much today so it’s hard to get it down and we have to restrain him and force it and to be honest I’m a little nervous if we’ve even been able to get the right dosage in him. I can’t imagine what this is going to be like for him to suffer more. We don’t know what to do. We’d give both our lives for him not to suffer. I ask for your prayers for peace for him and joy and for strength and wisdom to make the right.
And as you’re praying I’d like for you think of the life this little boy has. Yesterday when we told him we could go home, we said we can go home with Daddy and Mommy. And then Kai said “and Maya too” … Kai loves his little sister. He is such a kind and caring big brother and Maya lights up when she sees him. Maya’s little squeaks were one of the only things that can sometimes get him to open an eye or two. So I’d like to share some pictures of these joyful two little nuggets. Kai this morning told me that Maya wanted her owl to play with and that she needs her water cup – he’s always looking out for someone. 
Thank you again so much for your help, prayers, connections and countless other things – we are so blown away and humbled by your generosity and overwhelming kindness.
where to find his James train (and tell is that it is #5). He also had to tell us where to find his Hand, Hand, Fingers, Thumb book (thanks Rajiv!). Truly a remarkable kid.
