My son is on COG study which randomizes children to 1 or 2 transplants, so now that we are a month away from stem cell transplant, I struggle to decide whether I should let fate decide which option my son will get. My son is completing his 6th cycle of chemo and it is very harsh on him. Each time we have had to come back to the hospital during nutropedia, neausia, pain, infection, mucasitis, so I know that transplant will be rough on him. He has stage 4 high risk neuroblastoma. His primary tumor was in his adrenial gland (now removed) and around his eyes. Also, any advice on stem cell transplant, radiation would be appriciated. Thanks,

Daniel's mom

Hi Daniel's mom

My grandaughter Brooke, who is also at a COG hospital, just finished her 2nd transplant and is now receiving radiation. She will next start her antibody treatment of ch14.18. It was a difficult decision to have the 2nd one for my son and daughter-in-law, but they decided to use every weapon available to them to give Brooke every chance they could. With the strength of family and care of excellent doctors and nurses, she made it through. The chemo treatments actually seemed to have more side-effects in her case. Stay strong and have faith. Talking to other families has proved to be very helpful. If you wish further info, please contact me.

Nancy

vinnan239@hotmail.com

Hi Nancy,

It is great that your grandaughter is doing well.  So. transplants were not too harsh for her. I just went by the initial research on 2 transplants and I noticed some toxicity that I did not want to object my son to, however if I know that it is not that bad than I would be more willing to go through with it (if chosen of course). What exactley should I expect from transplants? Do children sleep alot? How is pain controlled?

Also, my son may need radiation around his eyes. I don't think our hospital is equiped with that kind of technology. How is Brooke taking to it? Thanks, so much for your reply,

Selma

Mom of Daniel 

Hi Selma

We are at CHOP in Philadelphia and have great confidence in them. During the transplants, Brooke received morphine which controlled the pain well and then went through a slowly decreasing cycle to get off it. It worked, but I know what you mean about being worried about toxicity-not a good thing for sure. However, the nature of NB is such that we felt the risk of not doing the max was even more frightening than the toxic side effects.

 Brooke is undergoing skull radiation which is dangerous, but CHOP's techniques spare the brain as much as possible. You will have to check what procedures your hospital uses. However, after doing much research, any type of brain radiation is serious. The experts in that area are at Sloan Kettering in NYC. When you get to that point, you should consult w/them. Am going to send you an essay that I found about the decision on transplants from someone I respect. Take care, and stay hopeful.

Nancy