Trying times ahead. JMML.

There is no good way to say it, so here goes...

Several days ago Zev was diagnosed with juvenile myelomonocytic leukemia (JMML).  It is a very rare and a very dangerous form of leukemia.  Let me answer a few questions as best I can at present...

Is Zev in immediate danger?
Not as of this morning.  His platelet, white blood cell, and red blood cell counts are being monitored regularly.  A bone marrow sample (second one) was collected today.  I will update the blog once I know more.

When did you learn?
First observation of unusually low platelet count was over a month ago.  JMML was identified as a possibility for several reasons, but up to recently we have not been sure.

Are you sure now?
JMML is a strange disease in that it can masquerade as several viral infections.  There is no single test but rather a checklist, an elimination of other possibilities.  While some genetic tests are still on-going, Zev, unfortunately does meet the clinical definition.

How is Zevi feeling?
Right now he is battling a virus on top of everything else.  Mostly he feels OK, though he is not eating well at all.  Grandma Rita continues to perform miracles in that department.

What is the treatment plan?
As of right now the treatment plan is bone marrow transplant.

Is that the only option?
There is a very small chance that Zev has a mutation which has been linked with JMML resolving itself.  I am not sure of the likelihood of the mutation, nor of the certainty of the benign outcome.  JMML simply occurs too rarely for good statistics.  What we do know is that even the spontaneously resolving JMML is not without it's own risks later in life.  Genetic testing is on-going to answer that question.  For the moment the treatment is bone marrow transplant (HCT).

Do you have a match?  Can I help?
We do not know yet, on both accounts.  I am not prepared to go into the details of selecting a donor here.  Best option would be Benjamin, while Alla and I would be very poor choices, since we share only 50% of Zev's DNA each (more precisely, he got 50% of his from each of us).  Next very promising choice would be Rafi, since Victoria and Alla are identical twins.  Benjamin has a 25% chance of being a match for Zev.  Not sure on Rafi, but cannot be more than that.  If neither of those boys is a match we go to the registry of bone marrow donors and registry of donated cord blood.  If the registry does not find a good match either, then we will ask for everyone's help.  Should you choose to help now: register at
bethematch.org
or alternatively giftoflife.org

For those 18-45 and in good health the registration is free and simple - a swab of the cheek.  Those of east-European Jewish descent have a better chance to be a match for Zev.  However, everyone who registers has a chance to save a life.
We hope that either Benjamin, or Rafi, or someone from the registry will be a good match.  The ultimate decision will be based on the closeness of the match and the time we have to search for a great one, i.e. on how Zev is doing.

What is the immediate plan, then?
For now we keep infections at bay by limiting access to Zev (no enclosed playgrounds, no daycare, strict isolation from anyone with symptoms, washing hands constantly).  We have fun with the boys.  We will be taking a short trip to San Francisco to see a leading specialist in JMML as a second opinion to the great team at OHSU.  Over the next week or so we will know our situation with matches.  Beyond that - our oncologist would like to get the transplant done over the next 7-8 weeks.



The blog has not been updated for over six months.  Now it will be active once again, albeit somewhat darker in content.  I absolutely will continue to post images and stories of both of the boys.  They talk now (Benjamin continuously so), argue, amuse, frustrate, charm, and infuriate - typically all in the same afternoon.  There is much to share.