I'm checking into clinical trials for my son. I keep calling the onocologist's office and no one calls me back.
The most knowledgeable hospitals I have found are:
MD Anderson in Houston Texas
Barbara Ann Karmanos in Detroit Michigan
University of Michigan in Ann Arbor Michigan
Cleveland Clinic in Cleveland Ohio
St. Jude's is out because they only help kids up to age 18. Sloan Kettering didn't really seem to know what was going on, Karmanos doesn't have anything right now, but the people there are extremely helpful and are bending over backwards to help and assist.
From what I'm gathering, the first step is to assemble all his records to send to the places we'd like to be considered. Then there are a lot of insurance issues; most insurance companies think that clinical trials are "experimental" and they do not cover the cost. The most optimal way to go is if one can find a study that's funded by either the government or the drug companies that covers the cost of everything. He's still in the hospital, as his methodextrate levels are not low enough to let him out yet. We went up to see him last night (it took me almost 2 hours to get home last night due to the road conditions) and he was sleeping.
A doctor who works at the Cleveland Clinic called me to find out his history. I'm not sure if she was a research doctor or a practicing pediatrician. She had a hard time believing he'd have another tumor in the hip area, as osteosarcoma is rare there...also she said the high dose methodextrate should have been given with the cisplastin and doxorubin originally..which I had read before. My heart sank when I heard that, I had questioned as to why that wasn't being done before.
I'm beginning to feel very guilty that where he is going now was not the proper place to take him. I'm wondering if we should have taken him to a hospital that specializes in this type of cancer. Of course, insurance is always a consideration, and since we have a in state plan, it's hard to go "out of network". The guilt.... I've also heard/read that amputation is very rare and now I'm wondering if more could have been done to save his arm.
The doctor at the Cleveland Clinic seemed to feel U of M would be a good place to get him into; although she acknowledged MD Anderson is the top osteosarcoma hospital in the country. She was going to call U of M to find out what is open now and call me back.
More later...................
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Oh my heart goes out to you and your family! As a mother of four children just the word cancer sends chills down your soul. Your family is in my prayers.
ReplyDeleteThere is something I will do for you today. I am a member of The Church of Jesus Christ of Latter Day Saints. I'm sure you might of heard about us and our Temples. I have a beautiful temple just down the street from my house. I am going today at 11:00 am. Inside we perform sacred ordinances for others, living and dead. I know it sounds funny. But we can also put people's names on a "prayer-list" and we have a special prayer in the Temple for those whose names are on the list. It's very sacred and special, and I put my own name on the list, along with other family members who need help. Don't we all need help? Would that be alright with you? You need some extra help. You need peace, and comfort,prayers and blessings. That I can do for you.
I will check in with you to see how you are doing.
Your blogging buddy in Idaho,
lori