BeenThere's Journey with Ependymoma

Lost Loved One: Brain and Spinal Cord Tumors in Adults > Glioma > Ependymoma

Patient Info: Prefer not to answer/not applicable/unsure, Diagnosed: almost 19 years ago, Male

  1. 1
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    At the age of 9 my son was diagnosed w/a brain tumor. It was small and slow growing. Surgery was 2 wks after initial MRI.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  2. 2
    over 4 years ago
    BeenThere's Avatar

    Internal radiation

    Radiation

    Did not need whole brain but targeted the area the tumor was removed from. No noticeable side effects but he was so young at the time and very healthy otherwise.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  3. 3
    over 4 years ago
    BeenThere's Avatar

    Cancer is back/Recurred

    Oh No

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

    0 Comments
  4. 4
    over 4 years ago
    BeenThere's Avatar

    Surgery

    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
    0 Comments
  5. 5
    over 4 years ago
    BeenThere's Avatar

    Cancer is back/Recurred

    Oh No

    Told surgery was first/best option for treatment

    0 Comments
  6. 6
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    Removed entire tumor according to neuro-surgeon that did all of his surgeries prior.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  7. 7
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    Dealing w/recurrent malignant anaplastic ependymoma over 3-4 years.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  8. 8
    over 4 years ago
    BeenThere's Avatar

    Gamma Knife

    Radiation

    My son was now in middle school.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  9. 9
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    Removed tumor yet again. No further treatment at this time.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  10. 10
    over 4 years ago
    BeenThere's Avatar

    Surgery

    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
    0 Comments
  11. 11
    over 4 years ago
  12. 12
    over 4 years ago
    BeenThere's Avatar

    Chemotherapy

    Drug or Chemo Therapy

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

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  13. 13
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    Recurrence #7, or 8????? Starting to really impact his quality of life and mental outlook.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  14. 14
    over 4 years ago
    BeenThere's Avatar

    Depression/Anxiety

    Side Effects

    Ran the gammet of side effects from diarrhea, sleeplessness, depression, etc.

    0 Comments
  15. 15
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    From age 18 - 23 he had 3 more additional surgeries for same tumor.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  16. 16
    over 4 years ago
    BeenThere's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    Time to start chemo:-(

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  17. 17
    over 4 years ago
    BeenThere's Avatar

    To continue treatment

    Decision Point

    He has now been through so much he chose to discontinue treatment of chemo and trust natural methods and diet for now.

    0 Comments
  18. 18
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    Running out of options now. Had to travel to Chicago for surgery so new radiation method could be done while he was in surgery.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  19. 19
    over 4 years ago
    BeenThere's Avatar

    Cancer is back/Recurred

    Oh No

    Getting really old now. We're at around 10 surgeries 'crainies'. Being sent back to same neuro-surgeon for another try.

    0 Comments
  20. 20
    over 4 years ago
    BeenThere's Avatar

    Surgery

    Procedure or Surgery

    No longer any tissue left to be able to close with - had to use a plastic surgeon to do a skin graft from his thigh to close the crani surgery.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  21. 21
    over 4 years ago
    BeenThere's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Now the chemo is not working and he goes from one new targeted drug to the next to the next. At age 23 his body is tired and worn out. Learned a month after the last surgery he now had 7 new tumors instead of the 'normal' one each time prior. His situation is beyond control now.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  22. 22
    over 4 years ago
    BeenThere's Avatar

    Out of options:-(

    Oh No

    After 13+ long years, many of them good and healthy, his time has run out. He is in God's hands and has only a few months left with us. At only 23 this is really hard on us his family.

    0 Comments
  23. 23
    over 4 years ago
    BeenThere's Avatar

    Hospice

    Other Care

    He was in hospice care for only 6 days and was at his family home during that time surrounded by many friends and his family.

    0 Comments
  24. 24
    over 4 years ago
    BeenThere's Avatar

    Lost loved one

    Loss

    Parents should not lose children.

    0 Comments
  25. 25
    over 4 years ago
    BeenThere's Avatar

    Remembering our son's life

    Celebration

    He touched so many people in his short life and is remembered by many of them on a daily basis. I miss his smile and laughing w/him the most.

    1 Comment