My 6 year old daughter was diagnosed with a malignant glioblastoma

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My 6 year old daughter was diagnosed with a malignant glioblastoma

by Kndog on Sun Jan 20, 2013 02:59 AM

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They removed a large tumor from her cerebellum but it has spread to the brainstem which is inoperable. She appears to be recovering from surgery well and our hope is to be home soon but I fear the road in front of us. Looking for an amazing story of a child overcoming something similar. Right now a year more with our beautiful daughter would seem like a blessing. If anyone can share a story of hope I would love to hear it.

RE: My 6 year old daughter was diagnosed with a malignant glioblastoma

by amydibello on Sun Jan 20, 2013 03:14 AM

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I am on my knees in prayer for you. I don't have a similar story. But, the love of my life went into into a coma in November and was diagnosed with GBM. He was given one in a million chance of waking up after surgery. His brain stem was crushed, his tumor massive. He survived and is beside me tonight with very little brain damage. We will have to battle this wicked monster cancer, but he beat the odds, so we believe the miracle is still unfolding. Please keep the faith and hold thought and prayer on spontaneous healing. It is not unheard of. MIRACLES HAPPEN. Every day all of us here on this sight are blessed by every moment and every day.

My  heart and prayers go out to you.

Amy (and Jeff)

RE: My 6 year old daughter was diagnosed with a malignant glioblastoma

by vwxyz on Sun Jan 20, 2013 06:55 AM

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I am so sorry this is happening and lift you all up in prayer.  My son, Jeff, will be 3 years with stable MRIs on this February 26, 2013 from his 80% surgery in his left cerebellum.  He managed to recover well from the surgery with blood clots in his left leg and with some balence issues, but happy to be alive and at home. We were referred to another major hospital in Boston, MA for further standard treatment. The radiation and Temodar, started within 2 months from operation, made him tired and a bit more unsteady on his feet, but it worked. July 1, 2010 was his last radiation treatment.  He rested his body during this time and I made sure he did not want to give up.  He is almost 3 years from the start and he still and always will have marked balence issues if he is not ready, awake, and strong enough to compensate for the dizziness when he gets up to walk.  He has been to physical therapy.  He has fallen several times in his apartment because he really wants to be like everyone else and forgets.  He did very well crossing the stage to get his college diploma in the middle of radiation treatments. After a certain age, concidered an adult, the Drs information and predictions were overwhelming and deeply depressing to him. I constantly remind him everything is in Gods Hands and He has the final say when He calls each of us Home, so lets go live life!  His tumor cancer cell, so far, is anaplastic oligodendroglioma, grade 3 and we have been told the dormant 20% remainder of tumor is fingered very close to his occipital lobe which has to do with eyesight. Because of the dizziness, myoclunis, and eyes constantly twitching, he does better sitting down, resting, and driving his car locally only when he feels rested and well.  Other than that, I drive him to Boston for appointments and everywhere else. 

I do wish he had the Proton radiation instead of the Photon(IMRT). It is more direct and precise with less surrounding areas being exposed to radiation rays and less side effects.  They usually save and give it to the children first for the above reasons. 

Keeping you all in prayer, Jan

RE: My 6 year old daughter was diagnosed with a malignant glioblastoma

by vwxyz on Sun Jan 20, 2013 07:16 AM

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P,S.  Jeff is concidered the longest living bone marrow transplant recipient in this hospital area.  He was 5 years of age when he was diagnosed, (at the time was  not cureable,)  with ALL Leukemia.  We were told a child had a better chance than an adult, because their little body was constantly changing and growing 24/7.  His bone marrow transplant was concidered experimental back then, but he did well.  Some Dr.s think possibly the treatment back then might have been the catalyst that started his present anaplastic oligodendroglioma, but still not sure. The jury is still out on that one.

Still keeping you all in prayer, Jan

RE: My 6 year old daughter was diagnosed with a malignant glioblastoma

by shariv on Mon Jan 21, 2013 11:28 PM

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Kndog, I'm so sorry to hear about your daughter. I have talked to a man in Texas who has a daughter who was cured of a brain cancer (I think it was medullablastoma). She had surgery, chemo and radiation. It didn't work and they told them to call hospice. Instead they called a naturopath in CA and did what he said (supplements, juicing vegetables, going vegan etc) and her tumor disappeared and she is fine now. His name is Ben and his daughter's name is Josie. He would be happy to talk to you and let you know what they did. His contact info is on the website below: 

http://www.bennunez.com/healingjosie/Josie/Josie.html

There is an "incurables webisode" on Josie too. That link is:

http://www.veria.com/video/webisode-the-incurables-brain-can

I have an oligodendroglioma and was diagnosed in 2008. I had 2 surgeries (2008/2009), then chemo/radiation and chemo for another 6 months. The tumor stopped growing but then started growing slowly again in May 2011. My dr said I would need to start another chemo when I came back in Septemer. I started eating mostly raw vegetables, juicing vegetables daily, and ate whole grains, nuts/seeds, fruit. I stopped eating all animal products and sugar/junk food. I had another MRI in Sept 2011 and the tumor hadn't grown since May. It is still stable. That's what worked for me. 

I also know of a long term GBM survivor (9  years or more?) who is on this diet. His wife posts on this board sometimes. Her name is Lauren Smith. I think her name on this board is lsmith.

I hope this helps!

 

RE: My 6 year old daughter was diagnosed with a malignant glioblastoma

by shariv on Mon Jan 21, 2013 11:33 PM

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http://www.veria.com/video/webisode-the-incurables-brain-can

I just noticed this link didn't paste correctly, so here it is again. This one works.

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