Well, days two and three of this round of 3F8 are under our belts and we are looking at only two more days this round! Eli’s pain is still pretty severe, but it seems to be lessening a little each day, which is pretty typical for Eli. One new unwelcome development tonight is that Eli has been having pain in his feet pretty bad. Residual pain in the hands and feet is a common side effect with older kids, but Eli has never had a problem with it until now. We’re not sure what the next two days will bring, but we’re hoping it isn’t going to get worse. We did have an MIBG scan this morning, which went pretty well. It’s two scans that are 26 minutes each and Eli has to lay absolutely perfectly still the entire time. He fell asleep for the first scan, but woke up 10 minutes into the second one and was ready to be done. I had to keep talking to him to keep him from getting too upset, but the tears were coming as he said his head was sore, but he wasn’t allowed to move. When he was done, he got a smile on his face and started wiggling all over. I’m so glad I don’t have to do that. Just knowing that I couldn’t move would instantly make my nose itch terribly I’m sure.
We don’t have official results from the MIBG yet. Tomorrow we have the CT scan at 8:20am, 3F8 immediately after that, and then an MRI of the brain at 1:30pm. We’ve never done an MRI before, but we know that it’s just a part of the standard workup now since so many kids relapse in the head, it’s not being done because they are specifically concerned about something in Eli’s skull. Friday is 3F8 and bone marrows and that wraps up scan/3F8 week for us!
On Monday we have to start Eli on a medicine called Accutane. Many Neuroblastoma parents are shaking their heads now. 🙂 Accutane is a drug that the National Children’s Oncology Group (COG) discovered is effective in helping the body create normal cell growth. It is given for 2 weeks at a time at a super high dosage for 6 rounds (COG stopped the study after 6 rounds and they don’t know how safe it is to do beyond that many rounds). It is an acne medicine, but it is also something that can cause severe depression. In fact, a Congressman’s son committed suicide after being on Accutane, so there have been laws passed and it is a highly regulated drug that you have to be on a National registry to get. You also have to have a special card to take with you to the pharmacy to be able to pick it up and you have to sign off on a bunch of paperwork that you’ve been told about the dangers of the drug. They tell us that for younger kids like Eli, it basically just makes them extremely moody. Fellow Neuroblastoma parents have confirmed it, so we’re not so excited to see that side effect. Please accept our apologies in advance if you get the opportunity to visit Eli while we are home, just to witness a drug induced meltdown. 🙂 I’m not one to quickly make up excuses for my son’s behavior by pointing to the drugs he is on (I’ve heard parents blame temper tantrums on the Tylenol before), but this one sounds like it is quite legitimate and not very pleasant.
We are spending a bit of time every night to pack boxes that we can ship home. We’ve gotten through most of the toys and are up to 3 boxes, with at least 2 more big ones to fill with books, clothes, and other supplies. Anything that will fit in our Focus will be packed in that this weekend. That is, as long as the rest of the scans don’t cause any immediate alarms that would halt our plans to head home. Thanks again for your continued prayers!
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