1. over 6 years ago
    barbaras' Avatar

    Diagnosed

    Oh No

    im too young and healthy, i dont feel sick

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    0 Comments
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    Take a long leave from work, losing income.

    Decision Point

    There was nothing more important than my son life when it comes to taking time off. No matter how difficult this journey might be, ...

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    0 Comments
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    I need to take time off for a year.

    Decision Point

    We are on PFL and not thinking about going back to work until my son finish his treatment. So we will lost our incomes. Thank god ...

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    0 Comments
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    My mind/Sense of Humor

    Loss

    I am more forgetful now, I can't focus and concentrate. I misplace stuffs. I can't keep on top of everything. I lost my smile and...

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    0 Comments
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    Celebration

    Nothing yet so far, it's going to be a year before we can celebrate. I don't even know if I want to celebrate because you never kno...

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    0 Comments
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    Anemia (low red blood cell counts)

    Side Effects

    Low red count, low white count, nausea, diarrhea, hair lost, gum bleed, nose bleed, mouth sore, thick mucus. These are all current ...

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    0 Comments
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    Diagnosed

    Oh No

    No, this can't happen to him. No, no no, please let me take his place. He is just a baby, his life has just began. This is the ti...

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    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    External radiation

    Radiation

    Jaden already on his day seven radiation, he must finish 28 days of radiation, M-F. And he needs to be sedated with Versed and Prop...

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    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Jaden gets chemo every Wednesday in clinic, every month he has to be hospitalized for three types of chemo and not to mention side e...

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    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    1 Comment
    • Jaden
    • Experience with Rare Cancers
    over 6 years ago
    Jaden's Avatar

    Surgery

    Procedure or Surgery

    When My 28 months old son was initially diagnosed with Rhabdomyosacroma in his facial/throat we as his parents was very devastated. ...

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    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  2. almost 7 years ago
    azurelle's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    A new course of chemo has started. First it was the pre-surgery mix, then it was the no-surgical option mix (which did wonderful thi...

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    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. almost 7 years ago
    azurelle's Avatar

    Cancer has spread/Metastasized

    Oh No

    The scan after a five week break came back so-so in terms of facts, but very confusing. Some areas are incredibly better, some are t...

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    0 Comments
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