Childhood Medullablastoma

Sibling of a survivor
Hi! My sister had a medullablastoma when she was 2, back in 1981. She received INTENSE radiation therapy, which left her with mental retardation and some physical disabilities. My parents and the doctors took what was then extreme measures in order to save my sister's life. My sister is now 29 years old, and is a doll. She is mentally 2, but upon asking my parents, they would not go back and take back the radiation, because that is what saved her life. Im not sure what the difference is for treatment now, since in 1981 it was still fairly radical to use the amount of radiation that they used on my sister. Regardless, I know that prayers and community support helped my parents and family to get through the days in the hospital, and while Sarah has had some difficulties due to her initial tumor, she is a joy to be around on a day to day basis and brightens the lives of everyone around her. She is on her way down to visit me at college tomorrow, and all of my colleagues and friends are excited to meet her, since I spend so much time talking about her!!

I am walking for the Relay for Life on Saturday in honor of my little trooper of a sister. Please feel free to visit my relay page for a picture of the cutie pie.

Your nephew, and your family, are now firmly in my prayers. Keep your faith and hope alive. And give him TONS of hugs.

:-)

http://main.acsevents.org/goto/marymack

andreakrivera said:

My name is Andrea Rivera and
My name is Andrea Rivera and I am a survivor of medullablastoma.I was diagnosed when I was 22 and I'm currently 24. I understand what you must be dealing with and would like to offer my help as much as I can.

medulloblastomo
My younger sister just had surgery yesterday and found out that she had a tumor the day before. As you can imagine, we are all numb. She is 17. I am sure all of us have not slept well last night and are researching and looking for some signs of hope.
Given your age I am thinking that you may be able to offer some hope for me, us and her. We havent told her the full prognosis yet. We wanted her to get thru the surgery and also to get the final results from pathology. We are in Albany, NY
any words of wisdom at this point?
Laura~

reapco said:

medullablastoma survivor
In 1982 my daughter was 20 months old when diagnosed with medullablastoma. Surgery was done but could not remove any of it. A spinal tap revealed cancerous cells in the fluid. She went through maximum radiation at Boston Childrens Hospital for 8 weeks. Doctors gave her estimate survival of 6-9 months. She is now 29 years old, graduated from high school and has worked at Wal Mart for 11 years. Drives herself to & from work. Due to the amount of radiation, her hair is extremely thin, her stature is quit short due to the spine being radiated, has a slight limp which isn't terribly noticeable, inferior balance, left side slightly slower than normal. A shunt valve only was implanted. After her surgery she had to re-learn to walk as well as other co-ordination tasks. I kept a dailey log with me so if needed I could look up her progression if asked by medical staff because I was numbed for weeks after her diagnosis and was afraid I would not be able to recall events if the Doctors needed any info. I'm glad I did keep the log because even today I still read it occasionally and truly realize what she went through. I know this road of having a sick child is rough, but somehow God gives strength to do what we must. Feel free to reply, Donnie.

childhood cancer
Reapco,
I had my malignant brain tumor at age 4. My birthday is August 22 and I will be 49. I too had surgery, radiation to the brain as well as spine. Did your daughter have radiation to her entire brain? I had radiation to half my brain. When cells were found on spinal tap I had radiation to the spine. Is radiation given to the entire spine? My parents don't like to talk about my illness so I will never know. I got my hospital records from NYU in NY but they aren't that good. I wonder if you can help me understand how hard it is for a parent experiencing this with their child. As I mentioned my parents feel bad when I attempt to ask anything about my illness. Is it that you feel its something you did, even if you know it's not. As a survivor I have found out that you can't push a person or expect something from them that isn't realistic for them.

reapco said:

medullablastoma survivor
In 1982 my daughter was 20 months old when diagnosed with medullablastoma. Surgery was done but could not remove any of it. A spinal tap revealed cancerous cells in the fluid. She went through maximum radiation at Boston Childrens Hospital for 8 weeks. Doctors gave her estimate survival of 6-9 months. She is now 29 years old, graduated from high school and has worked at Wal Mart for 11 years. Drives herself to & from work. Due to the amount of radiation, her hair is extremely thin, her stature is quit short due to the spine being radiated, has a slight limp which isn't terribly noticeable, inferior balance, left side slightly slower than normal. A shunt valve only was implanted. After her surgery she had to re-learn to walk as well as other co-ordination tasks. I kept a dailey log with me so if needed I could look up her progression if asked by medical staff because I was numbed for weeks after her diagnosis and was afraid I would not be able to recall events if the Doctors needed any info. I'm glad I did keep the log because even today I still read it occasionally and truly realize what she went through. I know this road of having a sick child is rough, but somehow God gives strength to do what we must. Feel free to reply, Donnie.

medullablastoma survivor

Hello  -  if you are still available curious how your daughter was able to perform at school.

I am not from USA but i couldn't find anybody to share information, feelings in my country. This situation makes everybody silent in here, even doctors. Nobody has no words. And as a parent, we expect to hear more to get hope and power to continue. My daughter, when she was 9, diagnosed last year and got 2 big operations. Then got radiotherapy and chemotherapy for a while. After operations she lost most of her abilities, even swallowing and even her eye tears. After awhile slowly slowly she started to speak, not effectively but understandable now, eat and drink, tears came back. But she lost her balance. She can now stand for 2-3 min by herself,walk only few steps and especially her left side is weak. At the beginning she couldn't see, read and write even handle a spoon. Now, she sees, reads, not so good but handles a spoon. Writing is still difficult but let me say readable. I sent lots of email to physiotherapy hospitals in different countries, doctors for a cure. Generally no respond. Some responds were terrible, they could just reject, but no, for example one of them wrote me to accept my daughter as an Angel. Please long years survivors share your stories, how did you recover, what did you do and what are you doing, what did you avoid, what do you eat. I need to learn how you deal with this in all those years. What kind of therapies you got and how long did it take? Is there anybody has same physical disorders and what did they do for them. I want to help my daughter as possible as i can but i have trouble to get help and answers. I am reading articles, trying to make her do exercises. I start to bring her a pool for example. I try to limit sugar on our diet. But it is not easy for her. She lost weight and couldn't get back, her immune system is better but not in normal levels yet. I also don't like to talk about what we pass trough but most probably the reason is people,their looks, and when they ask me her, i feel like they are waiting the bad news., i don't like their voice when they ask. People start to speak with her like she is a baby, she hates, believe me she hates. She lost most of her friends because their families try to protect their children from sadness. I can understand but it is not accaptable for me. We all feel lonely,helpless.We feel like we are the only family in the world dealing with this by ourselves. That's why i am happy to find this platform. Please let us learn your surviving stories. You can touch many people's life. I am sorry if i wrote something wrong. English is not my native language and the issue is very very sensitive. Thank you for your sharing from now and wish you and your beloved ones very very healthy long long life.