medulloblastoma in grandson

Darkdancer333
Darkdancer333 Member Posts: 115 Member
in Brain Cancer #1

Long story short this been a rough few months. I am 4 months post radiation for BOT HPV+ Cancer

My grandson lives in  the Republic of Georgia and Sept 29th he was diagnosed with medullblastoma. He is 6 years old. We were not made aware of this until Sept 8th. They lept a secret because of my wife's dealing 

with my cancer. 

His parents contacted Germany and Italy for cancer treatment.

Italy responded in a day and they flew to Rome. They perfomed surgery on Sept 3rd and removed a 3cm tumor from that back of his brain. There is another 1cm tumor that they will treat with radiation. 

His symptons were dizziness and vomitting. 

Post surgery all he does is sleep and doctors say this is normal.

I just wish they had come to America, in Seattle we have great cancer centers. I have no idea how Italy and Europe  success rate is dealing with cancer.  

I was glad to read the survival rate is 70-80 %. I just crushes me when a child has to go through this. 

I am just looking for information from people who are familiar with this type of cancer. I used this site as a support for myself and it was so beneficial. 

So any input would be greatly appreciated. 

Thx

Comments

  • Spectacular
    Spectacular Member Posts: 2
    edited September 2018 #2
    Hope I can help

    I was diagnosed with medulablastoma over 12 years ago. My doctor said it was lucky that the tumor is in a region so easy to access and he was able to remove most if not all of it. And that chemo and radiation would do the rest. I have not had any symptoms since and all my scans have come back clean. To be expected, from the boy, is a SERIOUS loss of mobility and dependence on others. But have faith that everything will be fine and he will be back to normal in, ok I won't lie, took me about 10 years for my blood work to be in the norm on all tests but again, I've had a symptom free and healthy life since my surgery.

  • Darkdancer333
    Darkdancer333 Member Posts: 115 Member
    #3
    Spectacular said:

    Hope I can help

    I was diagnosed with medulablastoma over 12 years ago. My doctor said it was lucky that the tumor is in a region so easy to access and he was able to remove most if not all of it. And that chemo and radiation would do the rest. I have not had any symptoms since and all my scans have come back clean. To be expected, from the boy, is a SERIOUS loss of mobility and dependence on others. But have faith that everything will be fine and he will be back to normal in, ok I won't lie, took me about 10 years for my blood work to be in the norm on all tests but again, I've had a symptom free and healthy life since my surgery.

    Thx for responding. this

    Thx for responding. this forum not as active as my head and neck forum.

    They consider his a high risk tumor. Mestasis in the spine. His tumor was 3cm. There is less than a cm left so I hope that is good.  They going to treat proton radiation but now its chemo 10 hours every Friday. He's nauseated a lot.

    He still not talking all he can say is mom. Doctor sais this is all normal. Italian doctor tells family 90% cure. I just havent seen those stats in America. 

    70-80% is what I see. He's in a good childrens hospital in Rome. Its very difficult to see a happy child go through this. No understanding of why. 

    Faith I try to keep for my wife but its been a tough year for us. 

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