Giant Cell Glioblastoma

 

On 7/23/2009 kristi24 wrote:

Hello my name is kristi and my five yr old was diagnosed with a level 4 gbm 1 mo ago. I am so afraid!!! All ive heard about the survival of gbm is awful. Please tell me have you heard of any long term survivers. I just want to let  you know my heart and prayers go out to you and your family.

My heart goes out to you.  While my wife is sick with the GS-GBM, we have a 5 year old son and a 4-month old.  I can't imagine seeing my son suffer so.  I'm having trouble trying to figure out how to explain to my son what's happening with his Mom and why she's at the doctor so much... much less try to explain what all the poking and tests are about if it were him. 

My wife was paranoid that somehow our baby could have gotten this in-utero since she most certainly had the cancer growing while she was pregnant.  We've heard from at least three doctors, neurosurgeons and neuro-oncologists that they have never heard of these passing to a baby during pregnancy.

Best of luck to you and your daughter to beat the odds.  I just heard of a singer here in Sacramento who is holding a fund-raiser concert.  He just passed 12 years post-diagnosis with a GBM. 

"Hello my name is kristi and my 5 yr old was diaganosed with a  level 4 gbm im a so afraid for her! I could not amangine living life with out her. My heart and prayers go out to you and your family. I was wondering if you have heard any thing postive about people surviving,because all ive heard is negative. Just to let u know my daughter is in her second week of radation and her second week of chemo. She is taking temdor. So far it has not made her sick,though she does seem to be more tired than usal"

 

Hello 

My son is actually 7 and he was diagnosed with Giant cell glioblastoma in Sept 09. Since then he has had surgery and did the chemo and radiation. Now he is doing more chemo. This has been very hard for me. I just wanted to know how your daughter is doing and if actually the treatment is working. We will keep all of ou in our prayers..

My mom has just been diagnosed june 7, 2011 with giant cell gioblastoma as well. I noticed your post was from 2009 and I Am hoping your wife is doing well. I was wondering if you have any advice to help us along the way. Thank you!

Hi! My daughter 9 years old is currently suffering from Giant cell Glioblastoma, please help me and give some advice regarding this case. Thank you! Gen

Hi! My daughter is 9 years old having also a GBM please give me some advice. God bless you! Thank you Gen

Ortizgen I would advise you to start a new thread as this thread is old and people are likely to reply to the original poster from three years ago rather than to you. I'm so sorry to hear about your daughter's diagnosis. Can you post a new thread telling us when the diagnosis was, and any details you have about the tumor, and what specific questions you have? That will help us give advice.

My son had a giant cell gbm resected in 09 when he was 11.  Since then he's had radiation and chemo with Temodar, Avastin and Irrinotecan.  Throughout our ordeal he was able to continue to play on a soccer team, attend school and have a good quality of life.  Thank goodness for our local community of friends.

He is now 14 with no recurrence.  He is still in his advanced classes at middle school although he's had to work harder than before.  Still loves soccer. Still loves Xbox. Still our kid in every way.  :)

I've learned that despite the scary statistics for parents, kids can have a great quality of life one day at a time.

Hi! May 11, 2012 my daughter found out that she has a brain tumour on her head thru MRI, May 13, 2012 undergone brain surgery, then operation was successful before that her left eyes, arms and legs became weaker after that everything was normal, she can do everything. Supposed to be radiation and chemotherapy will be scheduled on June 19, 2012 (IMRT"),6 weeks mon-fri schedule, unfortunately after 28 days of operation June 10, 2012 she felt pain and her left arms are getting weaker, again! I brought her in Hospital to see her doctor, CT scan and MRI followed, after that the doctor explained that the Tumor grows back and need another operation or option to do chemotherapy in different way. On that day, I don't know what to do coz the oncologist told me that the lifespan will be 6-18 mos. they will just improve the quality of life of my daughter by taking medicine. As a parents we don't want to give up, we decided to discharge in the hospital in Singapore and bring her in the Philippines to find the best doctor neurosurgeon, radiation oncologist and chemo oncologist.Family , Friends and relatives are praying for her recovery and miracles to overcome this illness. Please help and advice! Need help from other parents who's children suffered from "Giant Cell Glioblastoma" brain tumour, if they can share their experiences...and what are do's and don't to support our children during her chemotheraphy. Thank you! Gen