melissakep's Journey with Medulloblastoma

Family/Friend: Brain and Spinal Cord Tumors in Adults > Medulloblastoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 6 years ago, Male, Age: 13

  1. 1
    over 4 years ago
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    Oh No

    This person has yet to add any details about this experience.

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  2. 2
    over 4 years ago
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    remove tumor

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  3. 3
    over 4 years ago
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    Side Effects

    This person has yet to add any details about this experience.

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  4. 4
    over 4 years ago
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    External radiation

    Radiation

    This person has yet to add any details about this experience.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    This person has yet to add any details about this experience.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  6. 6
    over 4 years ago
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    Side Effects

    This person has yet to add any details about this experience.

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  7. 7
    over 4 years ago
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    Finished treatment

    Celebration

    This person has yet to add any details about this experience.

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  8. 8
    over 4 years ago
    melissakep's Avatar

    Your son has a brain tumor.

    Oh No

    Austin had headaches. Not debilitating headaches, just constant and annoying headaches. They were first thought to be tension, then migraines, and finally after I asked for an MRI (the neurologist told me we wouldn't find anything) we learned that he had a tumor. An aggressive medulloblastoma was growing in my 8 year old child's brain. Heartbroken. . .

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  9. 9
    over 4 years ago
    melissakep's Avatar

    remove tumor

    Procedure or Surgery

    Austin's surgery it's self went beautifully. The surgeon was able to remove the entire tumor. The recovery was a different story. For 6 weeks he couldn't keep anything food or drink down. We were in and out of the hospital every other day. It was discovered that his stomach was paralyzed and nothing was moving. He was given medicine that helped.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  10. 10
    over 4 years ago
    melissakep's Avatar

    External radiation

    Radiation

    Radiation is worse then chemo. Austin received 31 treatments. His head was bolted to a table for each treatment, 31 times. The radiation went to his brain and his spine which means that almost all of his body was affected by it. At one point his throat was so raw he would only drink when forced to and then he would cry out in pain. He was also exhausted all the time.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  11. 11
    over 4 years ago
    melissakep's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Austin received 4 different chemos over 55 weeks. They each had they own terrible side effects. Nausea, vomiting, hearing loss, pain, damage to other organs.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  12. 12
    over 4 years ago
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    Other

    Side Effects

    There is nothing worse then watching your child suffer knowing that you signed the consent forms to allow it, and that there is no other option. Austin struggles with nausea, vomiting, weight loss, anemia, countless blood transfusions, fear, paralysis in one spot on one of his legs. His thyroid was damaged so he will be on thyroid medication for the rest of his life. His hearing was slightly damaged but not enough to require intervention.. He will never be the same again.

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  13. 13
    over 4 years ago
    melissakep's Avatar

    Finished treatment

    Celebration

    Remission!

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