dawndragon's Journey with Medulloblastoma

Caregiver: Brain and Spinal Cord Tumors in Adults > Medulloblastoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Female, Age: 38

  1. 1
    about 5 years ago
    dawndragon's Avatar

    Diagnosed

    Oh No

    She went to the doctor with a headache and within a week we were in the operating room

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  2. 2
    almost 5 years ago
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    Filter for blood clots

    Procedure or Surgery

    we found the blood clots had the filter put in her fever spiked admitted her to the hospital then ct scan of her lungs show blood clots there also

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  3. 3
    about 5 years ago
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    Surgery

    Procedure or Surgery

    It went great. Her tumor is in her cerebellum and she came out of the operation with all of her coordination intact. She was put on a large dose of steroids which caused the only problems we had at this point

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
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  4. 4
    about 5 years ago
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    Steroids

    Drug or Chemo Therapy

    even only being on them for a few weeks it started to affect the strenght in her legs and of course she got the "moon face". We have now cut those way back and are making the phone calls to start radiation and chemo at the same time as soon as possible

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  5. 5
    almost 5 years ago
    dawndragon's Avatar

    Diagnosed

    Oh No

    blood clots in her leg and lungs

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  6. 6
    about 5 years ago
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    To have another operation before we started other treatment

    Decision Point

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

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  7. 7
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    So far she is not having alot of side effects but we are only just getting started. She is having chemo and radiation every business day for 30 days. 10 days in blood counts are still good but we have our first mouth sore

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  8. 8
    about 5 years ago
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    External radiation

    Radiation

    30 business days first 13 on her head and spine then 17 more on just her head.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  9. 9
    almost 5 years ago
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    Problem with doctor

    Oh No

    Our brain surgeon sent us to Seattle for a second opinion and the tumor grew alot. now we are getting radiation and chemo started as fast as the doctors will do it and when we see him he is acting like it is our fault the treatment hasnt started. it is very frustrating to watch her getting worse when we could have started several weeks ago if we hadnt had to go out of state. When we got back he said make a decision and we made it within 15 minutes. Our(she was born on my birthday) birthday is tomorrow and we start treatment the next day.

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  10. 10
    almost 5 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    Scheduled for tomorrow everything is rush will fill out more after

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  11. 11
    almost 5 years ago
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    Skin changes

    Side Effects

    very dry skin and getting dark spots on her eyelids and down her spine

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  12. 12
    almost 5 years ago
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    Procedure or Surgery

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

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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