| Author |
| |
Messages |
Sort: |
|
owensmom
Posts:117
|
|
Posted:07/04/2008 3:14 AM |
|
A friend of mine, her daughter was just diagnosed with a brain tumor, it is a Glioblastoma. She is 6 months old. I was wondering if anyone knows any other kids with this kind of tumor? I figure with all the time we all have spent in the hospital someone might have run across this kind of tumor. It's not found in children that often. Any info would be helpful. She has a caringbridge site.
www.caringbridge.org/visit/elisekrause
Thanks,
Cyndi (Owen's Mom)
|
|
mckaylasmommy
Posts:15
|
|
Posted:07/08/2008 11:17 AM |
|
|
it doesn't sound familiar to me. I don't think we've met anyone with it. There have been a few other rare brain tumors that the doctors called inoperable and sent the kids home, but I haven't met anyone with this cancer.
Sorry I can't be of more help.
Krissy (McKayla's mommy)
|
|
Tracy
Posts:40
|
|
Posted:07/08/2008 8:15 PM |
|
I do not know any one personally but I can remember hearing and/or reading 3 stories of this type of tumor, one being very recent. One child was 10, one 9 and the most recent I read about is 4. I remember when I read one of the the stories it was said that this tumor was an "adult" tumor very rarely found in children.
I know the age difference is huge and I don't know if it will be any help but if you would like me to go back in my memo's I can send you there names and where you can read their stories.
|
|
Irish
Posts:3
|
|
Posted:07/13/2008 3:04 AM |
|
|
Hey everyone. I wrote awhile back about a second opinion for my son Sean. Just to recap, he was diagnosed with a spinal rhabdoid tumor in 10/07. He had a reoccurance 5/08 with two brain tumors and cancerous cells in his spinal fluid. He just started a clinical trial where he had an Ommaya put into his head and where they can inject Topotecan directly into his spinal fluid. He had an MRI three weeks ago, before he started this new treatment and the tumors have not grown yet! Does anyone know about Topotecan or tried it or has heard if it works? So far he is doing good, but gets really bad headaches. This clinical trial is out of Childrens Memorial Hospital in Chicago. Dr. Stewart Goldman is the Dr. doing the study.
I wanted to thank everyone who responded to me last time. This site is wonderful. I was also curious as to how Owens MRI went. We were actually there that day as it was the day Sean got his Ommaya put in. Thanks to all and God Bless.---Jill
|
|
mckaylasmommy
Posts:15
|
|
Posted:08/06/2008 11:56 PM |
|
|
Just wanted to let you know I do know of a child with this cancer. I just came accross their site today and haven't met them at the hospital, but some other families I know, know them. Here is their site:
www.caringbridge.org/visit/kaseyradford
He started treated in 2006 when he was 8 and has had a couple recurrances and is currently still being treated at DCH in Portland, OR.
Krissy
|
|