Well, everyone is home at last. Ok, we were actually all home Thursday, but it was pretty eventful so I didn’t have the time or energy to post until now. Thursday was the day that Eli got to meet his new baby brother (see slideshow below). Isaiah was born Tuesday afternoon in Ames while Eli and I wrapped up chemo in Iowa City. 8 pounds, 4 oz. and 20” long because I know a lot of people need to know that stuff. 🙂 I thought the anticipation of going home was going to be too much for Eli to handle, but we kept ourselves really busy in the play room and library.
Eli’s last dose of chemo ended Tuesday night at 11:30pm, but he had to be on 24 hours of hydration after it ended. So Wednesday at 11:30pm they unhooked him from the pole and we shot out of there! We got home around 2:30am (thanks for riding along to keep me awake, Jeremy) and crashed into our beds right away. Lacey and Isaiah got home around noon on Thursday. About 12:30pm the novelty had worn off and Eli was bored again. 🙂 Actually, he hasn’t been feeling too hot the last couple of days because that Cisplatin is nasty stuff. We’ve had to repeat some of his medicines because a couple of times he hasn’t been able to keep them down and he throws them all up. It’s usually blood pressure medicine, which is REALLY important, so we have to redose. He’s a real trooper, though.
So we had a roommate the first night (Friday night), but were alone Saturday and Sunday nights. Then we got another roommate on Monday night. I felt bad for them because that was the night Eli started a 24 hour urine collection. It was critical that we got every drop of pee from him, so instead of risking him going in his diaper at night which he tends to do instead of waking up, we had to get up every hour on the hour to ask him for pee. Needless to say, it was a long night for everyone. He did great, though. He actually filled a big glass jug that the pharmacy had sent up, so they had to bring him another one. He gets so much fluid pumped into him, it was no surprise he needed two big jugs for it all! The reason they are doing pee collection is to see if his kidneys are having major problems (his last GFR came back normal). His blood pressure just won’t go down. They started us on a new med this week though, so hopefully it will get back to the normal range. They suspect that removing the mass with surgery will really help since the neuroblastoma is undoubtedly causing the high blood pressure.
Anyway, they moved us on Tuesday morning because they needed more room. We got put back in the bone marrow transplant unit (you know, the ultra clean place with special air filters and all) with our own huge private room. They have their own playroom, which Eli made GOOD use out of, and it was overall really nice and quiet back there. Just a taste of the many weeks we’ll likely spend there in the coming months…
Wednesday, September 26th (my birthday) we have to go back to Iowa City for a CT scan and bone marrow biopsy. They’ll need to put him out for the CT Scan and thankfully that means he’ll be out for the bone marrow biopsy as well. Pray for a small tumor and clean bone marrow! Ok, that’s all for now. Check the photo album for more pictures!