Ok, I know, I’m overdue for an update. I can tell I’m overdue when I start getting emails and phone calls asking how Eli is doing. 🙂 So the quick answer is that Eli is feeling great. He is still on fluids because of the blood in the urine, but even that seems to be clearing up lately. I’ll give you the run down on what has gone on since the last update:
We did in fact do a stem cell harvest on Fri, even though his counts had only gone up to 6,000. Unlike in Iowa, stem cell harvest is only 3 hours here instead of 6, which was nice. Unfortunately, they only got 700k cells when they were going for 7 million, so they said to continue on the GCSF shots and come back Monday for another harvest. We had to get a platelet transfusion on Fri after the harvest, so that pretty much shot our entire day. Fri night and Sat were fun times, I’ll talk about those in a minute.
Sunday we had to go in to Urgent Care to get counts done to make sure platelets weren’t too low. Sure enough, they were low, so we had to get a transfusion. There goes another day spent in the hospital. Monday we reported to the donor room go get the harvest done, but found out that Eli’s white blood counts had been DROPPING despite the triple dose of GSCSF (we were expecting them to be 20-30k by Mon and they were 3,700!) No one could explain why. They went ahead and tried the harvest, but once again only got 700k cells this time, putting us at 1.4million of the 7million they wanted.
Lacey had a theory that the GCSF we had shipped from Iowa possibly was ruined in freezing transit, so we decided to come in to get the GCSF shot Tues morning before harvest. So this morning we came in, got the shot, headed down to do the harvest and they said, “Come back tomorrow, he went up to 8,000, but that’s really not high enough either.” At least the counts were going up! We decided to get his shot done at the clinic again tomorrow morning in case our shots indeed are no good. It’s the best explanation we have since it doesn’t make sense that his counts went down when he was on so much neupogen. SO, in theory, tomorrow we are doing the harvest AND an MIBG injection so we can do an MIBG scan on Thurs. I assume they will do bone marrow biopsies on Thurs. as well since he’ll already be knocked out for the 90 minute MIBG. We’re anxious to see these MIBG scans because they are not as “fuzzy” as the ones done in Iowa and are more clear (we’ve seen examples of NY MIBG scans next to Eli’s scans done in Iowa and they are significantly clearer here).
The CT Scan last Thurs went well. Last night the nurse practitioner said that there was nothing new to report and that the head and brain showed negative for cancer. Last night, that was a, “ok, well good, it wasn’t there before, so what?” However today I found that some new friends of ours had a CT scan done this week as well and even though Neuroblastoma was never found in their son’s head before, the latest scan showed he had relapsed and it was in 4 places in the head. He undergoes emergency surgery tomorrow! This is such a nasty and scary cancer, I can’t even tell you how unsure it can make parents feel at all times. Thank God that He is an unfaltering rock we can put our trust in. I have no faith in the medicine, the doctors, or the protocols compared to the faith I have that God will work out His perfect plan in Eli’s life.
What’s the #1 question we get asked? “Are you going to be home for Christmas?” If you mean that house out in the country we haven’t seen much of since July, probably not. We will be together, though, and that’s the important thing, right? Most likely we’ll be in NY for Christmas since they’ll want to either start Round 7 of chemo or Round 1 of 3F8 right away after all the testing is done. Please pray for 3F8! With 3F8 we get to come home for 3 weeks in between treatments!
Click Next to read about the fun activities from this weekend (and you know us, they were big activities)…