Friday, January 26, 2018, Day -12 (That’s read “day minus 12”):
Tristan was admitted to CHLA right after he had his central line put in at Kaiser. Everything went well and the surgery took no longer than an hour. By the time he woke up from anesthesia, his bed was ready at CHLA. The toughest part was having to tell him to say good bye to his sister and that he won’t see her for six weeks. At two years old, he tried to understand but he didn’t fully get it as to be expected. He just knew to say “Bye, I love you Sis.” This got us both choked up.
For patients with CGD, there’s a 10% chance that goodbye could mean for a very long time. There are a lot of factors that play into this – the child’s body was exhausted from the disease, the donor wasn’t a perfect match causing issues, and, the riskiest of them all, graft versus host. Graft versus host is basically where the donor’s bone marrow attacks the new body in which it lives in. To help prevent this, the recipient is put on more chemo after the transplant. This helps the recipient’s body to slowly accept the new bone marrow and to allow the new bone marrow to acclimate to it’s new host.
Jon stayed with him. This was the first time I had ever been apart from either of them since we had gotten married. It wasn’t fun. I just didn’t like it. But we chatted on Hangouts and that made things a little better for all of us.
Saturday, January 27, 2018, Day -11:
When we had taken him in on Friday, we didn’t know that we could bring his plastic toys and a couple of blankets. So I spent the morning bleaching, sanitizing, laundering everything I wanted to bring to him to make him feel some sense of normalcy. When I brought everything in he was happy to see me, but within 10 minutes he was asking for Dad and Sis. He was confused as to why we can’t all be together and why he can’t put on his shoes and leave. This sucked. I feel like me popping in for an hour just made things weird and hard on him. I soon left and Jon stayed with him.
Sunday, January 28, 2018, Day -10:
First day of chemo. It started at noon and was expected to go six hours. In preparation, they gave him Benadryl, Tylenol and some steroids. Within an hour, he was not handling the chemo well. Pain, headaches and rashes are normal responses but how does a two-year-old tell you if he hurts or is in pain. He was crying and whaling and arching his back. He was inconsolable. Even Jon couldn’t calm him down. So they paused the chemo.
After allowing him to rest a little while, they gave him more steroids and started the chemo up again. This was about the time I walked in. Mommy’s turn to hang with our little superhero. They started the chemo at half the rate and slowly increased once they could tell he was responding better this time around.
The rest of the afternoon he did really well. No crying. He ate carrots with hummus, grilled cheese, tomato soup, rice, and French fries. We played swords. He talked to all his grandparents on FaceTime. We had a dance sesh with his nurse. And he even got a little workout in by showing off his planks and pushups! Haha. This guy was too funny.
Now, he’s finally asleep and I’m sitting a few feet from his crib on a couch that conveniently turns into a bed. We start back up in a few hours at 4am so I’m going to try to get a few hours of sleep in. I will keep you posted! Goodnight!