camsmommy08's Journey:

Caregiver: Liver Cancer > Hepatoblastoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Male, Age: 8, Stage III

  1. 1
    over 4 years ago
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    Diagnosed

    Oh No

    My son was 20 months old, just a baby. We noticed his stomach was very large, went in for a CT scan, doctors diagnosed hepatoblastoma. THE WORST say of our lives.

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  2. 2
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    They first place a Broviak double lumen that hung from his chest, as a one year old it was tough to keep it from getting infected.

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

    Drug or Chemo Therapy

    Chemotherapy was very hard on him, mouth sores, severe nausea, had to have an NJ tube place for feedings, morphine for pain

    Easy to Do: Neutral/NA
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  4. 4
    over 4 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Neupagen shots for his counts, the chemo wiped his blood counts

    Easy to Do: Disagree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Disagree
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  5. 5
    over 4 years ago
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    Pain medicine

    Drug or Chemo Therapy

    Morphine, Fentanyl for mouth sores

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  6. 6
    over 4 years ago
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    Mouth sores

    Side Effects

    THE WORST!!

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  7. 7
    over 4 years ago
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    Infection

    Side Effects

    In his double lumen port, it would be removed

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  8. 8
    over 4 years ago
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    Implant chemotherapy port

    Procedure or Surgery

    The port worked out MUCH better for him!

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  9. 9
    over 4 years ago
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    CAMERON'S TUMOR WAS NOT RESECTABLE, WOULD NEED A LIVER TRANSPLANT

    Oh No

    We were sent to Cincinnati Children's hospital for liver transplant evaluation, he would be on the donor list for 2 months when we get the call that he has a liver

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  10. 10
    over 4 years ago
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    Liver transplant

    Procedure or Surgery

    The actual surgery went well, it was the after the fact that was tough, lots of pain, lots of time to recover

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  11. 11
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    One round of Carboplatin after transplant as a "mop up" chemotherapy

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  12. 12
    over 4 years ago
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    Remission

    Celebration

    AFTER REMOVING THE TUMOR DURING TRANSPLANT AND ONE ROUND CHEMOTHERAPY...DEC. 3RD, 2010 STARTS REMISSION!

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  13. 13
    over 4 years ago
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    Home care

    Other Care

    Now we are at home, receiving home health care for labs and to track his progress post transplant

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  14. 14
    over 4 years ago
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    Fever

    Side Effects

    Cameron got a fever 2 months after being home, went to hospital, it was his bile ducts clogged

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  15. 15
    over 4 years ago
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    Percutaneous Transhepatic Choliangrophy

    Procedure or Surgery

    to flush his bile ducts, this worked!

    Went as Expected: Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
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  16. 16
    over 4 years ago
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    Fever

    Side Effects

    In December 2011, MASTOIDITIS IN BOTH EARS!

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  17. 17
    over 4 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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  18. 18
    over 4 years ago
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    Antibiotics

    Drug or Chemo Therapy

    In hospital on antibiotics for 2 weeks

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
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  19. 19
    over 4 years ago
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    Fever

    Side Effects

    Put in hospital, SINUSITIS, CELLULITIS

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  20. 20
    over 4 years ago
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    Lymphedema

    Side Effects

    post transplant lymphoproliferative disease, in its early stages, not cancer yet, SCARED US SOOOO MUCH

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  21. 21
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    A chemotherapy drug called Rotuximab for the PTLD, LOTS of side effects

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
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  22. 22
    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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  23. 23
    over 4 years ago
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    Pneumonia

    Side Effects

    May 2012, pneumonia (PCP) very rare, in ICU on ventilator, thought we might lose him, he pulled through with the right antibiotics, very scary

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  24. 24
    over 4 years ago
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    Transplant rejection

    Side Effects

    Rejection, June 2012, 2 weeks steroids

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  25. 25
    over 4 years ago
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    Loss

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

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  26. 26
    over 4 years ago
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    Body part/function

    Loss

    Chemotherapy damaged his hearing, mild to moderate hearing loss in both ears, wears aids, speech therapy

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