If you are new to Simon’s story read the ABOUT section.
Simon went in for his second stem cell transplant on October 4, 2017.
The first day is considered day – 7 (negative).
One thing to note is that side effects from the stem cell transplants are from the CHEMO, not the stem cells themselves. Stem cells go in like a blood transfusion. It’s very simple, has low side effects (the main being an allergic reaction to the preservative and the other being a smell for a few days from that preservative. Dad says it’s creamed corn and I think it smells like warm milk).
It got worse to the point that on day +7 he was transferred to the PICU late at night (the night that Grandma Williams happened to be there and both parents were home). I ran up in the morning.
My mom went home and within an hour or two they found fluid around Simon’s heart. He went right into emergency surgery to place a drain by his heart. It was awful to be alone and know they are putting a needle right next to his heart.
but he made it through and they had to intubate him as he couldn’t breathe through the mucusitis and the swelling.
He was intubated until October 25th, day +14.
Luckily he engrafted between day +10 and +11.
So his white blood cell count and ANC started climbing.
Normally this would help his mucositis go away quickly.
But the breathing tube agrivated it and at day +17 he still has the mucositis.
It is getting a bit better but still makes it near impossible for him to talk, swallow, and get comfortable.
He was still so tired but was making more eye contact.
This was Sunday night.
Monday was a better day as well. A bit more time being awake, more eye contact.
Still not able to sit up, stand up. Very low energy.
Tuesday was Halloween and his energy was all but gone. However his liver numbers started to decrease that day! His bilirubin went from 5.2 to 4.5! A huge decrease. His eyes were still yellow but he was keeping less water weight on.
Wednesday I got him to laugh in the morning by watching old home videos of himself. His bilirubin went from 4.5 to 4. He was starting to look almost skinny again. he was able to stand at the side of the bed to use the “cup.” And in the evening he wanted to walk to the bathroom and use the potty. We had to support him a bit but he did it!
Today is Thursday, day +22. Bilirubin is at 3.7. We are almost to the non-scary level which is around 3. They have stopped the bumex which is a medication to get the water weight off him. His tummy is looking more normal sized, though still a bit stretched out but very soft.
He is having panic attacks in his sleep and screaming.
During the day he has these as well but we’re able to calm him down with some back rubs and tickles.
He’s still not talking but makes his wants known with grunts. We’ve developed hand signals of thumbs up/down and the “ok” sign.
Our goal is to be home a few days before the 13th (this is our personal goal, not the doctors) as Simon has a special event coming up for The Real Justice League Kids.
Dad is up there from last night and will be through Friday, November 3rd. Then I go up for a couple days.