Focal Proton Radiation
On March 16, Kai started his radiation. In Kai’s case, due to his young age and the fact that his brain is still developing, focal radiation was our only choice. Both of Kai’s posterior fossa tumors (one in late Jan 2021 and one in Feb 2022) occurred in a close area. The fact that BOTH tumors were given 10+ different chemo drugs and didn’t respond to any of them-they just kept growing is called “chemo-resistant”, which meant that radiation was our only option to try to kill the cancer cells rapidly growing in that area.
If you remember, from my previous blogs, the rest of his tumors (“sugar coasting” all over his brain) 2 small on the “frontal horns” and 1 on his spine responded to the CHLA protocol, MEMMAT. This was after the 4 months of really BAD chemo (on a bad to really bad scale) at St. Jude which, unfortunately, did nothing but allow it all to come back and with more vengeance.
Kai was prescribed “45 gray”, 25 treatments. The Radiation Oncologist wanted to go on the “safer side” so that if (he thinks it will be when) but IF we need FULL cranial/spinal radiation in a year or so, we are less likely to create necrosis in the brain. Let’s hope we don’t have to go here…ever. Like really, hope. It’s an ugly, ugly way to “treat” (severely damage) these young kiddos.
Kai was sedated every day M-F early in the morning. He was unable to eat past 1 am each day of treatment which is hard when a baby is asking for milk in the morning and you have to say no. (insert a lot of sad faces throughout this part). He had to get accessed each week, which at this point, in his very sweet voice he says “no” and “no more?” and “all done?” over and over while he screams and cries and begs for me to pick him up and cuddle him. Instead, we have to hold him down for about 10 minutes while we are cleaning and accessing his port. He did get to love each of the nurses, which were absolutely amazing with him. He lit up each morning before he cried because he had friends to play with. Honestly, that proton center knows its job and the people are first class!
Our child life specialist, Dani, was unbelievable and tended to Kai with the love that she was chosen to give kiddos. She helped me a ton too (not surprising) she’s gifted and oh, I am thankful!
The anesthesia he was given, gave him stomach issues. Since we have been getting sedated more than anyone should since he was 7 months, we knew how to help. They gave him nausea meds and fluids in recovery to keep things moving. We continued to administer medical cannabis, closely followed by that MD. We could not be happier with that choice. There is scientific data that shows it not only helps with all the side effects, but it also increases the efficacy of the radiation, while helping to protect the healthy cells that are being damaged by the radiation.
We had many days (25) of complete chaos. Holding my breath to see which “Kai” would wake up from his sleep after having radiation beams shot into his head. Hoping we might have a good day and work on things like his motor skills, strength, learning, and my goodness, PLAY! There were a few of those good days but mostly not-so-good days.
On April 19th, he rang the bell. He didn’t wake up particularly happy but we had our little celebration and we headed home right after. It felt so good to have that over and know that we could heal at home. As I type this, I’m “behind” so I know what’s next…which doesn’t allow me to speak in an optimist and present voice. We knew he might experience some of the LONG list of potential, after the fact, side effects, so we were ready for them. Or so we thought….
I'll post more about this, but the next couple of weeks have been filled with more digestive issues, low appetite, MAJOR mood swings, MAJOR issues dealing with simple things-like being handed a toy or milk when he doesn't want it, that will cause him to spiral if not managed correctly, skin breakdown, losing his hair in the areas where the beam entered...just to name. a few. We just were not fully prepared for the swift in our boy.