Share information on current and emerging treatment options, including quality of life issues.


Genetic Testing-Medulloblastoma

  • By Cade2010 · New reply November 22, 2013
  • 5 replies
  • Our 2 1/2 year old son passed away of a medulloblastoma in April 2013. His pathology was a large cell medulloblastoma. He also had leptomenigeal spread. We are having a difficult time trying to find a ...

Father of a 9 year old girl.

  • By barnhillmi · New reply October 25, 2013
  • 15 replies
  • My 9 nine year old little princess has had a low grade fever and tried for about a month now. After complete blood work and a CT of her abdomens he doctors said it was lymes. Now the doctors says it isn't ...

Avascular Necrosis Mitigation

  • By RyansDad · New reply September 23, 2013
  • 6 replies
  • My son Ryan is 14 and was diagnosed with ALL 2 years ago. Due to severe pancreatitis during treatment he was unable to finish his asperiginase treatment and now, with 2 more years of treatment to go ...

Second Round of Surgery or Not?

  • By OhioStateDad · New reply September 17, 2013
  • 3 replies
  • Hello everyone my name is Will, In March of 2011 I was dx with a pilocytic astrocytoma at the age of 24. I went for many diabetic testing before my dx. Many of my symptoms were what I could describe as ...

advice around treatment

  • By MarionsDad · New reply July 28, 2013
  • 7 replies
  • I have been following posts on this site for awhile, but this will be my first post. My daughter Marion, was diagnosed with Pilomyxoid Astrocytoma in October, lost her sight (mostly) shortly afterwards ...

Milan Strategy

  • By Miles1903 · Posted July 11, 2013
  • 0 replies
  • Hi, i have a 6 year old boy who was diagnosed with sPNET, he has been through the Milan Strategy and thankfully is in remission. I would like to find out if anyone has gone through this strategy and what ...

CNS relapse with ALL

  • By puddinlynn · New reply July 2, 2013
  • 4 replies
  • Has anyone experienced a CNS relapse with your child with diagnosis of ALL If so, how was it treated and were you given any stats about reaching remission again and/ or survival rate. Thank you ...

Impossible decisions!!?

  • By Bmeggy · New reply June 11, 2013
  • 7 replies
  • I have posted here before about my 4 1/2 yr. old nephew Jonah and always get great advice. It has only been over two weeks since Jonah's total resection. Thankfully on Friday we heard the great news that ...


  • By Bmeggy · New reply June 7, 2013
  • 7 replies
  • I have written a few times about my nephew Jonah. He is 4 and diagnosed with Medulloblastoma 2 weeks ago. They live in VI and were hoping to come to Mass General for the proton radiation therapy. MGH ...

Temporary housing

  • By Bmeggy · New reply May 30, 2013
  • 1 reply
  • My nephew who is 4 1/2 has recently been diagnosed with a medullablastoma. His tumor was removed 100%. He is recovering at home. My brother and his family are in VI but traveling to Boston for proton ...

Thymus Extract

  • By USMCMama · Posted May 7, 2013
  • 0 replies
  • I received a report from a friend highlighting Thymus Extract. It is a nutritional supplement to treat autoimmunity issues, allergies, chemo side effects, and cancer in general. Does anyone take this ...

Child with underlying acute lymphoblastic leukaemia with ascites

  • By cheahbooneu · New reply April 27, 2013
  • 3 replies
  • Hi, i have a 10 years old child who is diagnosed with acute lymphoblastic leukaemia. He had recently completed his chemotherapy; scheduled to start his maintainance chemotherapy in May 2013. However ...

Gross Hematuria 19mos. No Diagnosis? Signs and symptoms of Bladder cancer

  • By Toran_Kids_Gone_Wild · New reply April 24, 2013
  • 1 reply
  • I've joined because I'm trying to research information on behalf of my 15 yr old Son Michael. In July of 2011 he had a sudden onset of painful urination accompanied by cola colored urine. He's been admitted ...


  • By 2kayla · New reply April 13, 2013
  • 4 replies
  • Hi my 3 year old daughter has medullomyblastoma . She judged completed 6 weeks of radiation/chemo in Texas and now we are in California to start chemo treatment . I was wondering if any of you knew if ...

vincristin neuropothy

  • By flv619 · New reply March 29, 2013
  • 8 replies
  • My son has been a 20 year cancer survivor. He had a medullablastoma (brain tumor) stage 4. John is now 24 and works some and gets disability. But he suffers so from the painful neuropothy in hands feet ...

allergic reactions to 6-mp with ALL

  • By Cyno · New reply March 22, 2013
  • 1 reply
  • My 6 year old daughter was diagnosed with low risk ALL leukemia last year. We are in maintenance and she had been doing so well (I believe our consulting integrative pediatric oncologist and her recommendations ...

Guyabano Fruit for Cancer patients

  • By Anwer · Posted February 27, 2013
  • 0 replies
  • I have heard about Guyabano fruit is very useful in cancer treatment specially while in chemo. I tried to find it about this fruit on net but found +ve and -ve both types of information. Do any one has ...

High ANC with chemo

  • By wendysgirl · New reply January 30, 2013
  • 7 replies
  • Just wondering if anyone has experienced having high(er) ANC with 6MP and methotrexate? My daughter had labs done on Wed. this week and her ANC was 1900. I know that the goal is to get it under 1500 ...

Sickle Cell Disease

  • By sujan · Posted January 27, 2013
  • 0 replies
  • Hi,, every body, My nephew 13 months old boy suffering with Sickle Cell Animea, if any body know the treatment or to control it, pls advise me. Thanks Sujan ...


  • By abhi100 · Posted December 29, 2012
  • 0 replies
  • My sister was diagnosed with brain tumor last July when the symptoms of head ache ,vomiting ,numbness in her right hand started . We took a MRI ,the doctors confirmed that the tumor has to be removed ...

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