I think sharing experiences is good. Sharing "medical knowledge" is poor. My son, found when he was 7 and died when he was 12, had cancer and the idea of a tri

I think sharing experiences is good. Sharing "medical knowledge" is poor. My son, found when he was 7 and died when he was 12, had cancer and the idea of a trial can seem almost magical unless.... My son had bone cancer. To be in a trial you have to keep the tumor so you can measure effectiveness. The ONLY cure for bone cancer is surgery. So I hate the way trials work for my son and other's like him. This is why there has not been a single change in chemo or life expectancy for over 30 years for bone cancer!!!! It looks like finally dog research (More money goes to finding cures for dogs then children, let that sink into you when you have a kid with cancer), has the possibility of actually changing this trend. Now the other issue is your child has cancer and they are only trying to see dosage. So they really want to know how much you can tolerate and not die. Again not a fan of putting my dying kid through more side-effects. Many kids choose to forgo treatment and just die, and you as a parent have to decide do I make the decision for them and every throw up and every pain is your fault (I had to make that decision once and I was glad I did he lived a few more years). I know some parents who agreed with their 5 year old and stopped everything but pain relief. I also have friends who pushed through years of treatments and they still suffer from the experience. So those who did trials were soft tissue patients. One was with neuroblastoma and one has medulloblastoma (Brain cancer of the brain stem). The girl with brain cancer is still with us 3 years after it relapsed and her trial was not an effectiveness but a dosage but it looks like it has added years to her life already. So I feel like this kind of discussion is good on HN. Now my mom took my sister who had medulloblastoma to Mexico and I don't think it did anything but separate us from our family. I know some that I really think that crap killed them early and the stupid diets and painful procedures and false hopes just are horrible. I kind of put this who thing into that category. Your at the point where you will do anything, but in the end you would have better off not even do anything.