It has come to my attention that not many who’ve read Once Written, Twice Shy is in the know of Jasper’s condition. With that said, I decided to write up a short informative piece to enlighten you all (particularly those who’ve thought it unrealistic) about JMML.

What is JMML?

JMML or Juvenile Myelomonocytic Leukemia is a rare hematopoietic malignancy of childhood accounting for 2% of all childhood leukemias. It occurs more prominently in males and usually around the first year after birth. With that said, these cases are typically diagnosed in children between the ages of 0-4 years of age. The older the child, the worse the prognosis. The cause for JMML is not known. Children with neurofibromatosis type 1 (NF1) are at increased risk for developing JMML, and up to 14% of cases of JMML occur in children with NF1.

Symptoms:

• Constitutional symptoms (e.g., malaise, pallor, and fever) or evidence of an infection
• Symptoms of bronchitis or tonsillitis (in approximately 50% of cases)
• Bleeding diathesis
• Maculopapular skin rashes (in 40%–50% of cases)
• Lymphadenopathy (in approximately 75% of cases)
• Hepatosplenomegaly (in most cases)

Treatment:

JMML can be treated with a chemotherapy regimen as well as utilizing a bone marrow (stem cell) transplant from either a relative or a donor match. The latter seems to lead to the best turnout. Although survival is possible, it is very rare and usually, long-term survival (longer than 9 years) is considered a major feat. The reasons are because JMML has a rapid onset and progression that often, is too quick to nip in the proverbial bud.

I’m not going to go into further details with regards to JMML because that would all bore you to tears but what I will say is that although a rare disease, JMML is real and for those who thought it a bit of a reach, I’d have to state that on a personal note, I’ve witnessed friends become donors for other friends and family members. It may not have been with regards to a marrow transplant but I’ve seen it twice in my life and thus it all makes Jasper’s part of the adventure in Once Written, Twice Shy that more plausible!

For more information on JMML as well as clinical trials that exist, please visit the National Cancer Institute or call 1-800-4-cancer.