Update on the study

The study drug is a pretty nasty drug. The antibodies are attracted to the nerves so that's where the pain is. When it started on Monday Cohen was in so much pain. He was on continous PCA of Dilaudid plus a push button. We kept pushing the button but it didn't seem to help. The pain med made him really itchy so they gave him an antihistamine. Then he started throwing up. Poor guy. So they kept upping the pain med, gave him 2 anti-nausea medicines, and 2 antihistamines. He was so drugged up and was still in pain. The study drug also made his heart rate sky rocket. His heart rate has been around the 80s and 90s and went up to the 160s. The last hour of the infusion his heart rate was in the 190s. Since he was on so many medications his oxygen saturation dropped and he needed oxygen. The infusion ran for 8 hours. The pain was better two hours after that but Cohen still felt yucky. It was a hard first day and I felt soooooooo bad for Cohen. I though maybe the study wasn't the best idea but we'd stick it out at least until the next round to see if it'll get better.
Tuesday- He mainly slept through it. They kept the same drugs going and had a good continuous amount of the Dilaudid; we kept pushing the button for a little more just to keep him comfortable. He spiked a fever and was still on oxygen but it was just the blow by. His heart rate was usually lower than 160.
Wednesday & Thursday- was even better. They didn't do anything different but having the consistancy of the medications made a difference from Monday. He still had fevers and was on the blow by oxygen so he couldn't go home on Friday.
Friday was a good recovery day. He came off of the oxygen and all meds. His heart rate went back down to normal and his fever was gone. So he went home on Saturday.
We're going to stick with the study. It should be a really good thing and worth it. Besides they were able to manage his pain and it's only 4 days every month for 5 months. We still have a really good feeling about it.

More about the study

Cohen was admitted today to receive the study drug. He will be here until Friday morning as long as everything goes great. He's started the neupogen shot again (the one that enhances the production of white blood cells.) He will also be on the retinoic acid (accutane.) The study drug is called CH 14.18: it's a monoclonal antibody made from human and mouse cells. It specifically targets a substance called GD2 that is expressed on the surface of some cancer cells, including neuroblastoma cells. The study drug can be very painful that's why he'll need to be in the hospital while he's getting it. He'll be on a PCA so hopefully we can manage his pain. I will update this weekend to let you know how it went.

Study

Cohen was selected to participate in the study. He starts on Friday. I'm not sure off all of the details so I will post when I know more.

Cohen is in REMISSION!!!

Can you believe it? We are soooo excited! This is the best news we've received about him since October 26th. His MIBG and CT scans show no evidence of disease. Today he had to redo the bone marrow aspirate/biopsy because the lab threw his out so that test isn't back yet. He has never had it in his bone marrow so they're pretty positive that it will come back negative. YAY!!! I really don't know what to say.
We will find out if he is picked for the study soon but I'm not sure when because they had to redo that test. I'll keep you posted.
THANK YOU SO SO SO (many so's) MUCH for praying for Cohen. He (and we) couldn't have done it without your support! :o)

Fuzzy head

Cohen's head is starting to get fuzzy!!! His hair is starting to grow back and the next part of his treatment wont effect his hair growth. We are so excited! He is absolutely adorable with his bald head but having hair is such a big step after what he's been threw. I'm so curious as to how it will grow back. It could be curly, straight, blond, brown, etc. I'm kind of hoping for curly hair. I think it would look so cute. Here is a picture of Cohen before we found out about his tumor and after we cut his hair.