grade 4 glioblastoma

RLR said:

grade 4 glioblastoma
I am now a 57 year old male.I'm glad to hear you had surgery.My doctor said surgery has got to be the first option. I had surgery for GBM4 on 1 /13/2009 to remove what they could of a 7.5c.m. tumor. I went through the standard 6 weeks of radiation and have been on Temadar ever since that time.I also had Glio wafers at the time of surgery.I am doing very well with little side affects.Maybe the biggest problem being fatigue and minor memory issues.Yes even after 3 years. I am now retired but able to do most things I did before, like mow the lawn and home maintenance just not as much of it at once.
I am still on Temadar and have MRIs every 3 months. All of My MRIs have been good meaning no new growth.My blood counts have also remained good throughout this time on Temadar
Like most everybody else I was told it was inoperable by several doctors in Toledo and at the U of M. Then by the grace of God (3 1/2 weeks later) I ran into Dr.Healy in Toledo Ohio who did the surgery. One bit of advice DON'T GIVE UP HOPE !!!!!!! God does miracles. I am living proof!

RLR...I am so very happy to see your advice of DON'T GIVE UP HOPE!!!!  

My best friend's nephew (he might as well be my nephew too) was told yesterday that he has Grade 4 Glioblastoma.  He had 96% of his tumor removed on May 5th 2014.  He is 9 yrs old.  We were ALL devastated when we heard.  Our minds are going in every different direction.  I joined this site because I find it comforting to be able to communicate with people going through this similar situation.  This boy is no stranger to cancer, unfortunately.  Let me give you some background:

He was diagnosed @ 23 months with  Acute Lymphoblastic Leukemia.  He relapsed 8-14-2008 in his central nervous system and had a stem cell transplant dec. 9th 2008 at Duke.  This past Dec. 9th, 2013, we celebrated his 5 years of being cancer free.  Towards the end of April, this year, he started having severe headaches and vomitting.  The doctors did a CT scan and sent home with meds.  After a week of this, his parents demanded answers.  An MRI was done and that is when the tumor was found.  It was the size of an adult male's fist.  The surgeons went in on May 5th and removed as much as they could being careful not to disturb any critical areas of the brain.  They thought is was Leukemia and felt they cound treat the remaining 'rim' with chemo and radiation.  The tumor was sent to John Hopkins for a diagnosis.  Yesterday we received the diagnosis.  

Grade 4 Glioblastoma!

He is scheduled to have surgery on Friday, May 23rd to remove more small pieces of tumor because it will regrow if they dont. There will be some radiation and chemo to follow. This is all we know right now.  

This little boy is MY HERO!!!!  He has overcome so much and has beaten 'the odds' and I just hope and pray that this is one more time that he will win out!!!!  Thank you in advance for your time, suggestions, advice and comfort.  I will be praying for all of you!