Hi, my name is Abeebat, my son had ependymoma brain tumor when he was 15 months in 2014, he had several surgeries as it was a huge one, it was not diagnosed on time. My son lost his mobility before the diagnoses but thank God he got it back after the surgeries. He had a year of chemotherapy and that made him partially deaf, he is doing well with his earring aids, I am amazed with his recovery.
We had a bit of rest and the same tumor came back last year 2019 twice, the first one was just a surgery in February to remove the Tumor, we were told it was just a scar, unfortunately it came back in June again and that was the real tumor, the same ependymoma, he had another surgery with radiotherapy, he lost some of his sight after the radiotherapy but he is doing ok with glasses. The school is very supportive. My son is now 7 years.
The journey has not been easy, but we are doing well. I hope I can also be helpful if any one needs it.
I am glad we have this help available. Glad to be here. xxx
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Hi Abeebat - what a journey you have had. Your son must be an extraordinarily brave little boy. Thank you for joining our community and for offering the benefit of your experience. We are delighted to have you with us.
Just wanted to tell you, my sister who's now 36 had a megeloblastoma the size of a small apple at 1 year old. Right now my 42 year old brother has a stage 4 glioblastoma, which when diagnosed in December of 2019 was roughly 20% of his brain. The neuro oncologist sent him home to die. Surgery and radiation weren't an option. He couldn't talk, walk and was incontinent. We found a treatment that has shrunk his tumor 10% a MONTH 5 months in a row. The tumor is reduced 48%. I know this will sound crazy, but God as my witness I dont lie. And let me preface what I'm going to tell you with 2 things. First, I'm not a Dr. Second, I am highly educated and intelligent. There is primary, peer reviewed literature through AJMA and John's Hopkins along with many others. So you can research yourself. I have been for months. There is an antiparisitic called fenbendazole which is being repurposed. Originally it was for humans 40 years ago when it was made, but now it's given to animals and a slightly new version called menbendrazoil is available for humans. A man named Joe Tippens broke this story. There is a 58min interview on youtube with his story. You WANT to watch it. We only tried it because there was NO hope at all. In December my brother had every end of life symptom. Glioblastoma is the most aggressive cancer known to mankind. The cells divide and double every 48 hours. My brother should have died in January. I'll summarize the benefits of this medicine from all the peer reviewed literature. 1) it promotes the generation of p53(the gene all healthy people have in abundance that naturally fights cancer). 2) inhibits the cells ability to intake or process sugar(cancers power source for growth). 3) CRUSHES microtubules. Those are the tiny structures that bisect the cell and pass (in cancer cells) corrupted information to the next cells. When the microtubules are ruined, the cancer cells burn out and die. Look, my sence of it is, big Pharma isn't interested in a .50c a day cancer treatment. This medicine is safe. The only side effect is less than 5% get diarrhea. My father, who is not sick, is taking it now too.(both his parents died of cancer, and he's outlived them both already at 69). I hope you'll do the research yourself. If you need help or advice I'm happy to. My email is
Hello Abeebat, I am so moved by your story. My son also had an ependymoma when he was 2.5 years old and is recovering well after surgery and treatment. It's been 2 years since he had surgery, this October 2020.
The thing that scares me the most is the fact that an ependymoma can return after years of being clear, just like it happened to your son. We live our lives feeling like things are back on track but there will always be that dark cloud hanging over us, waiting to tears us apart again. I'm sending you lots of love and positive energy. I wish and hope with all my heart that they will be free from this in the future. Keep strong and I am here if you ever need to chat about anything.
Do join the on line SUCCESS charity conference on Saturday morning (links above) !
You will see many young children Ive cared for as an endocrine specialist and founder of SUCCESS who are now young people and need different kinds of support
Be positive ! Believe the worst is over and now look to helping grow and develop in the future - thats where SUCCESS is focussing as thats…...another journey !
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