TyNickChrisMom's Journey with Rare Cancers

Family/Friend: Rare Cancers

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Male, Age: 8

  1. 1
    about 5 years ago
    TyNickChrisMom's Avatar

    Diagnosed

    Oh No

    At the end of September 2011 I picked up my 3 year old from daycare. He was trying to walk, but limping. The next day he couldn't walk, the day after that I took him to a walk in clinic for x-rays. Within 2 days he was admitted to the hospital, had a MRI and a biopsy and I was told that he had a bone tumor. His biopsy slides were sent to Children's Memorial Hospital in Chicago and their diagnoses for him (a couple of weeks later) was PNET of the left femur.

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  2. 2
    about 5 years ago
    TyNickChrisMom's Avatar

    Implant chemotherapy port

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  3. 3
    about 5 years ago
    TyNickChrisMom's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    My Son started chemotherapy in mid October. He has chemo every 2 weeks. He goes for 2 days impatient, then 6 days impatient. He alternates every 2 weeks.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  4. 4
    about 5 years ago
    TyNickChrisMom's Avatar

    Chemo brain

    Side Effects

    I have discussed my Son's issues which I thought were due to the chemo (referred to as chemo brain) but they reassure me that my Son does not suffer from that...hmmm.

    1 Comment
  5. 5
    about 5 years ago
    TyNickChrisMom's Avatar

    Mouth sores

    Side Effects

    Mouth sores all the time!! Little to nothing can be done about those.

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  6. 6
    about 5 years ago
    TyNickChrisMom's Avatar

    Hair loss (alopecia)

    Side Effects

    Not all of his hair is gone. For the first 3 months his hair thinned out a lot. The 4th month he lost all of his eyelashes and eyebrows :-(

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  7. 7
    about 5 years ago
    TyNickChrisMom's Avatar

    External radiation

    Radiation

    In February I was just getting to commit to traditional radiation. Then as I was researching the side effects I stumbled upon Proton Therapy. To make a long story short...the benefits of Proton Therapy were huge compared to traditional radiation. So that's the route we are going. He just finished treatment #17 out of 31. He has treatment every week day. He is sedated for every treatment. His leg is discolored and a little red...but not too bad.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  8. 8
    about 5 years ago
    TyNickChrisMom's Avatar

    Decision Point

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

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