Greetings! We have officially started week two of round four 3F8 Antibody treatments and I’m glad to report that there was pain yesterday and today. I know, that sounds really weird for those of you that have just recently started tracking Eli’s progress, but for those of you who have been with us for the past several months, you know that pain is a good thing as it indicates that the 3F8 is working and that Eli might still be HAMA negative (although the only thing that can prove that is the bloodwork they do after each round). I have to say that Eli kept Lacey and I guessing yesterday though, because there was zero pain until both the 3F8 and the flush afterwards was complete. He slept through the entire thing, but once the flush was done, the pain kicked in and he had to have a Dilaudid rescue. That made us feel slightly better, I’m sure we would have been pretty stressed out if he had gone through the entire day with zero stomach pain. Today was pretty intense, so it really is a “day by day” thing.
Just to give you a heads up on what is coming up this week and next:
Monday through Friday of this week: 3F8 Antibody treatment with beta glucan.
Friday of this week: CT scan in the morning, 3F8 after that, MIBG injection after 3F8. Also, we will start the GCSF shot on Friday to boost Eli’s stem cell production. More on that in a second.
Saturday: MIBG Scan (yes, they apparently do these on the weekends.)
Monday of next week: Bone marrows and temporary central line insertion. We are having a temp line put in because we are going to try to do a stem cell harvest next week. The two previous times we have done stem cell harvests, Eli’s bone marrow has been positive for Neuroblastoma. Since our last bone marrow results were negative, we want to get some stem cells that are clean “just in case” we need them down the road (hopefully not!) Since the stem cell harvesting machine can’t be run through a port, we have to get a temp line put in for this procedure, then it can come right back out.
Tuesday through Friday of next week: Potential days for stem cell harvest. Eli will have to come in every day to get stem cells harvested until we have enough. Why do we need stem cells “just in case”? Well, if we ever had to do chemo again or a certain radiation treatment and his counts don’t come back up, he might need a little boost of stem cells to get his counts to rise again. Also, if we ever had to do a stem cell transplant like they recommended in Iowa, we would have good stem cells to give back to him. We REALLY hope this is never the case, but it’s possible.
After that, the doctors will decide whether to keep Eli on the two week 3F8 with beta glucan, or move him to the one week 3F8 with the GMCSF shot. Also, we’ll need to have some oral surgery done as Eli has quite a few teeth that have rotted away from cavities. They have been ignoring this for many months, but it is getting to the point where Eli complains nearly every day about his teeth hurting, so they are going to have to get him in and get them removed sooner as opposed to later.
So that is what is in our immediate future. It’s been a rough few weeks because another Neuroblastoma child has lost her battle with relapse. Many of these are kids that “earn their angel wings” were totally or very close to totally clean at one point (much like Eli is now) and the cancer came back strong and filled their body in a matter of weeks and there was just no stopping it. Neuroblastoma has a terrible relapse statistic, so working hard to keep it away is just as important as trying to get rid of it in the first place.
Click Older for a recap on our weekend.
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