So here we are, on what I call 3F8 Eve. The night before Eli’s first ever 3F8 treatment. I thought I’d give a highlight of what 3F8 and HAMA is again for the sake of those that are recent members of Eli’s CarePage.
3F8 is the reason we came to New York. It is an antibody treatment that is only done here at Memorial Sloan-Kettering Cancer Center in Manhattan. It is an antibody that is made up partially of mouse DNA. This antibody seeks out and attaches itself to the neuroblastoma and triggers your own white blood cells to attack the cancer cells by highlighting them. Unfortunately, it also triggers your them to attack your nerve endings as well, so the kids feel like they are in excruciating pain. For this reason, they really medicate the kids to help them deal with the pain so they theoretically won’t remember anything. The kids aren’t really getting hurt, but their brain is telling them that they are because the nerve endings are being attacked. In 20 years, there has never been damage done to the nerves or the neurons in the brain, but it is theoretically possible. They have had a handful of kids have to go to the PICU because they stopped breathing, but they have never had a death caused by 3F8.
3F8 is a liquid that will be administered via Eli’s new port. It takes about 30 minutes to administer, but the whole process goes from about 8am until 2pm or so, maybe longer on Monday since that is typically a very busy day for them. Once Eli is feeling ok again, we can return to the Ronald McD House and we do it all again the next day. This is what we’ll be doing for the next 2 weeks. Early in the week, the pain usually sets in pretty early on. By the end of the week the pain typically doesn’t set in until there is only 10 minutes left of the 3F8 administration. Every kid is different though, so we’ll have to let you know how it goes for Eli. It will be interesting getting him back to the hospital for Day 2 of 3F8. 🙂
HAMA is Human Anti Mouse Antibody. Eventually, a kid will get an immunity to the mouse DNA in the 3F8 and it will stop being effective. This is called HAMA. Some kids get it immediately and some kids can go up to 2 years on 3F8 treatments without getting it (we heard of a kid yesterday who is on round 15 of 3F8). Our hope is that Eli doesn’t get HAMA for this 4 round protocol with beta glucan and we can get to June when the next shipment of 3F8 is due and start doing high dose 3F8. That is where they give them 10 times the dose of 3F8. A typical treatment for kids like Eli that go into the treatment still having evidence of disease.
The beta glucan could be going better. It takes Eli the full hour to choke down the liquid. It’s pretty stressful getting him to cooperate, but the important thing is that he gets it done without needing an NG tube.
Last night was a fun Italian Carnival night at the Ronald, followed by watching the HBO PPV of the World Heavyweight Championship boxing match on the big TV in the dining room. I won’t spoil the results for anyone who was hoping to catch the free replay, but it was far from the most exciting match I’ve ever seen. Tonight we scored free tickets to the Rangers game with a few other families. Eli, Kody, and Zach were the bald boys battling Neuroblastoma and Jonathan was the older brother of Cody who didn’t go and is fighting Rhabdomyosarcmo. Cody is 3 months older than Isaiah and Jonathan is 3 months older than Eli. We witnessed something we haven’t seen for many months. Eli was playing and interacting with kids his own age tonight! He has always been too sick, in the hospital, or not in the mood to play, so seeing him play tag and hide and go seek with a couple of other boys really made Lacey and I smile. Eli and Jonathan were sitting in the back seat of the minicab taxi on the way back from The Garden and were just giggling the whole time.
Thanks for checking in on us & for praying for the effectiveness of this 3F8 and that Eli can endure it.