January 2022 part 1
It’s been one year since we took Kai to his pediatrician for a check-up after noticing some changes in his stability, he was just shy of 7 months. This year has brought so much heartache, uncertainty, and a steady stream of a constant worry. It has also brought a lot joy.
Today, I write from a place of complete awe. If I didn’t already have an idea of just how strong our baby boy was, he has yet again shown us what he is capable of.
I last wrote in Oct., and we were still on the MEMMAT protocol, which is was tolerating ok but not great. He was on so many medications and was fussy (a lot). It’s impossible to pin point what is actually “bothering” him at any given moment because 1. he’s a baby and can’t tell us and 2. He’s got cancer and it can be a hundred different things, and it’s awful that I’m unable to help, every time.
We had scans in November, right before thanksgiving and those showed no additional spread, but a continued increase in the size of the originating tumor, near his brain stem and the other two small tumors at the front of his brain. Since his relapse in July, it has grown by 2mm every 2 months. And this was with chemo, injected directly into the ventricles in his brain, oral chemo, and chemo via his port.
When we got the call from Seattle that a spot may be open for him (if we qualified) our CHLA Neuro Onc team said it was our best way forward. Since we are dealing with the fact that there is no cure for ATRT and not enough knowledge about it, there is only so much the medical community can offer. This route, although unknown, scary and all the things, does not include chemo or radiation. Chemo has definitely taken a toll on his body. He is still not walking, coming up on 19 months now. His gaunt is off on the right side (the stroke side). We are working hard to get him into P/T soon, but with all things healthcare related right now, COVID is throwing a wrench in availability.
In December, once we achieved the 30 days of chemo clear out required for the next step at Seattle Children’s, we got a date (last minute, on Christmas week!) to fly up to Seattle and do apheresis, which included surgery to insert a catheter around his collarbone that ran into the ventricle of his heart. The next day, he would be attached to the apheresis machine that would pull out blood, separate out the T-Cells, and collect what his body might allow. He has to have donor blood given simultaneously because his body is too small to have that much blood removed without it being replaced immediately. We were there for 3 days and it took a toll on him. They had major issues once he was attached to the machine and they were not getting any cells after hours of struggling. They called it and when they removed the catheter, it was determined that Kai had a faulty catheter in him (it was severely kinked) and was not allowing for blood to come in or out… we would have to try again, but it would have to be a certain amount of time later.
The first week of January, Kai and I headed up, alone this time to try again. We arrived and to my surprise, Kai tested positive for Covid, so we had to juggle all the plans to make sure we were protecting the hospital and everyone in the hospital, so we were given an isolation plan, which included arriving to the hospital at 4:30 am to ensure we were the first case and they could use the OR for isolation and protected air, etc. and we moved forward. It was not a perfect system, but we got through it. Thankfully, Kai had zero symptoms and handled surgery like a champ. We did the apheresis the same day (!!!) so we spent 12 hours together, hugging and crying and we made it out. They got what they needed. Now we wait.
The turnaround time for them to work on his T-cells, genetically modify them, test their safety, etc. is around 24-28 days.
Since he can’t be on anything to protect his body from being attacked by his cancer, we decided to ask about Cannabinoids. Our CHLA team referred us to a pediatric specialist and supported this exploration. The same day we had an appointment with Dr. Goldstein, we started him on a CBD/THC dosing. The improvements we saw were immediate. He had longer, happier awake time. He had wonderful energy. He was far less fussy. His appetite was strong. He was trying to walk, and seemed stronger. Mind you, this was in the 4 days we were tasked to log his behavior to submit back to the doctors. The difference in our child is night and day. We could not be more grateful for this option. He is not taking any of the pharmaceutical drugs he needed daily, Zofran (nausea) Tylenol, Benadryl-he is off it all. The fact that other kids experiencing this terrible journey don’t all have this option is heartbreaking to me.
We have a ton more updates…I’ll be sharing in an additional post.