Day -3: Tuesday June 22 (continued)
Our new friend Elisa knew that Eli left his dice for Magic the Gathering back home. We couldn’t find any at the grocery store to which she had given us a ride on Monday, so she looked on Amazon. She found some, that ended up being free because of an Amazon Prime deal, and they arrived on Tuesday. She brought them by the apartment. Thank you Elisa!
Day -2: Wednesday June 23
Last day of chemo. More elevator adventures. More rain, mixed with sun.
Day -1: Thursday June 24
This was our day off, so we didn’t have to go to the hospital. We slept in, then went to the Natural History Museum, thanks to our friends Elisa & Steven, who had passes and provided transportation. We checked out a wheelchair for Eli to mitigate the inguinal pain from the swelling. I think his favorite part was the gems and minerals exhibit. It made me think wistfully of my Grandparents who used to go to a gems and minerals show every year (I think) when they lived in Trona, California. Grandpa died last year.
Day 0: Friday June 25
This was the day we were working towards. T cell infusion day. Time to get a little “cancer repellent” (that’s what Eli called it).
I did a video of the infusion process. The infusion is exciting and boring, but Eli tells jokes to the staff, which was pretty entertaining.
Day 1: Saturday June 26
After a long week, we just hung out at the apartment building and explored the courtyards. Eli’s temperature was hovering just under a fever most of the day.
Day 2: Sunday June 27
Eli’s temperature continued to hover under the fever threshold. By the afternoon, it went up, so we went to the Emergency Center. The expected response when the T cell infusion is working is a fever, but they are very careful to manage it and make sure it doesn’t become an untreated case of cytokine release syndrome (CRS). Eli was admitted to the hospital for care.
Day 3: Monday June 28
Eli worked hard to get into a condition where the doctors would be willing to discharge him. Sadly, even his bargaining skills fell short of the desired outcome. However, he didn’t have a fever all day, so that was a step in the right direction.
Day 4: Tuesday June 29
Eli really hoped to go home today, but after discussing it with the doctors, we now know that the plan is to stay long enough for the last dose of a special medication that is used to manage CRS. The physician on the floor today has only ordered this medication a few times. A rare medication for a rare child. The last dose will be given Wednesday morning. Then we can go home.