Early last week I had finally had enough of waiting- waiting for Simon’s eyes to go back to normal, waiting and doing nothing treatment-wise.
So I nagged the team and we decided to start round 4.
I hooked up Simon’s pump this past Monday (May 7th) and we started the IL-2.
The IL-2 basically helps the antibody (ch14.18) be stronger to help the body attack the neuroblastoma cells. Because it increases his white blood cells he gets more achy. A tired, flu-like, achiness.
We’re on day 3 and he seems to be doing okay. Definitely a bit more tired but not enough to slow him down during the day.
He has discovered a LOVE for board games over the last week. It’s been fun playing Life, Dinosaur World (a game my grandparents gave me when I was about 8 that you create a new dinosaur species), and others with him. In Life he won and was a millionaire. He told me “Don’t worry Mama, you can visit me in my lobby.”
We have been trying to do some more fun things before we are inpatient again.
We went to the zoo a couple weeks ago (somehow in Utah, in April, it was 86 degrees!).
This weekend we are going away for a few days to a local resort. It’s supposed to be colder, around 50 degrees, but we plan on just hanging out, not doing every day stuff, playing board games, and maybe do a bit of summer clothes shopping. Simon has grown SO tall that a lot of his shirts fit around his skinny body but show his tummy.
Same with Meg except she isn’t skinny- 95th percentile for her weight. My chunker 🙂
So things are going in the right direction for now.
We are finishing the immunotherapy because we would rather say we did all the treatment that to finish early and relapse happening then blame ourselves.
But relapse WILL NOT happen.
Simon has too much to do.
He’s too stubborn, too sassy- to allow it.