As you have probably gathered, my updates are fewer and longer in between when we are at home. I guess I would say that the cliché “no news is good news” applies. Things are going well at home. Entertaining a busy body like Eli, plus getting in all of his meds, feeding his ferocious appetite, and going to twice a week blood count checks are keeping us busy. We are thankful to have had no fevers while we are home so far. Hopefully we can keep it that way!
Eli is officially NOT neutropenic anymore, which is great. His blood counts went through the roof because of those daily neupogen shots (which we’ve been able to stop now). We were also able to escape needing a blood transfusion, which was nice. Equally nice was that his blood pressure really came down, so we were able to cut one dose of his nightly blood pressure meds!
I have so many people asking when we are going to be out of town and what we’ll be doing, so as some of you may have noticed on elihorn.com, I have posted a tentative calendar of Eli’s scheduled treatments. It’s very tentative, but as things change, I keep it up to date. You can see it at http://calendar.elihorn.com. They have moved our Round 3 chemo back 1 week because they didn’t want the stem cell harvest time to fall during Labor Day when there wouldn’t be anyone around to collect them. We are heading in next week to get some scans done. It’s important for us to know if the chemo so far is working at all. If it isn’t, it’s critical we change the plan sooner as opposed to later. So next Tuesday and Thursday we’ll be in Iowa City doing outpatient CT, MIBG, bone, and marrow scans. Round 3 is scheduled to start August 22nd. It’ll be 5 days and then recovery time.
One fun thing this week was that the Make A Wish ladies came to ask Eli what his wish was. At first I did NOT like the idea of Eli getting a wish because I thought Make A Wish was only for terminally ill kids. I wasn’t ready to call his Neuroblastoma terminal, but then I found out that any kids with cancer pretty much automatically qualify. Make A Wish makes a good point that if it was only for terminally ill kids, not many doctors would ever recommend a kid for a wish as it would be like giving up hope. So, anyway, Eli’s wish was, get ready for this, that he wanted to go to a Dinosaur Zoo. 🙂 I’ll be interested to see what the Make A Wish group comes up with for that one. He wanted to see the dinosaurs in cages. Wisely, they asked what his second choice would be if he couldn’t go to a dinosaur zoo and he picked Disney World. We went last November, and I can honestly say he REALLY loved it there, so that would be a good pick too. No idea when we’d be cleared to go, but they said there’s no time limit, so it could be several years from now if that’s what works best.
I had to split this updates into two posts, so see below for the rest.