We now know that neither Benjamin nor Rafi are matches for Zev. Of the 5 potential donors found so far three, in fact, are in the US and two are foreign. That is all we know at this point. The situation is neither great nor dire. At present the 5 have been contacted with a request to go into the hospital for a blood check. We do not expect news on that front for at least two weeks.
Over the next few days we will start a large donor drive to try to find more matches, provide more options. Even one more option can help. All we need is one, good one.
Please hang in. We are still working out the logistics of how to organize the testing in the most expedient manner.
In other news: Zev spiked a fever, was taken to the hospital, given a dose of antibiotic and a fever suppressor. Pneumonia was checked for and ruled out. We were sent home. The change in the kid was remarkable - he went from clingy and thoroughly miserable to rather engaged and lively. He is still not eating almost anything, however. The plan is to start him on a very low dose of a drug called 6MP (mercaptopurine). It is a chemo therapy drug, but given in very small doses should reign in the rampaging white blood cells. If Zevi's system responds well, he will likely feel better, might get higher platelet counts and even might have more of an appetite. This is by no means a cure, but a stopgap measure to make the wait for the donor easier.
For the last two days Benjamin has been staying with his grandparents, spending a lot of time with cousin Rafi and aunt Victoria and uncle Misha. He is doing well, adjusting to kindergarten. He misses, but he is being a trooper.
The last bit of news. Today was the last day for our nanny Aunt Olga (Tetya Olya) with us. She is moving to another state to be with her kids, to rest a little and help with the newly arriving grandkids. Tetya Olya, you are amazing and we will miss you. Good luck!
Thursday, May 29, 2014
Wednesday, May 28, 2014
Tuesday, May 27, 2014
As promised, a few pics. Badly out of date, but them is the brakes...
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| Aunt Theresa gave us balloons! Epic! 4/17/14 |
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| Balloons away! |
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| Zevi trying out a balance bike. 4/30/14 |
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| A water feature and ice cream. What can possibly go wrong... 4/29/14 |
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| They may be washed in fountain water, but at least the hands are clean. The rest of the boys is a different matter... |
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| And now that we are wearing the ice cream, let's show rocks into the water feature as uncle Maks looks on. |
A very nice weekend, a trip to San Francisco
As promised, here is an update. The weekend was great. We took the boys, along with Katie, for a paddlewheel boat (called "The Sternwheeler") ride in Cascade Locks and they loved it. Some nice picture to follow.
Tonight we have returned from SF where we saw a few great docs at the Benioff Children's hospital. The trip did not provide any epiphanies, but did yield new (to us) information and food for thought. In short, the doctors there agree that Zevi meets the criteria for JMML. Some more genetic testing will be conducted, but at this point it is all but superfluous. The path forward, it seems, is with the bone marrow transplantation (HCT).
One mutation they are testing for is CBL, sometimes associated with JMML resolving itself. In likelyhood Zev does not have that - and that is a good thing. While CBL does indicate a chance of JMML going away, it comes, instead, with a plethora of other problems, both immediate and long term. One of the physicians, essentially, told us that given the choice, we'd prefer taking our chances with JMML. Enough said.
While the mechanics of the transplant are straightforward, the procedure before and after is anything but. There are decisions to be made as to the choice of a location as well as the drug regimen. Of course, this will be influenced by Zev's condition and our options for a donor.
The first news on the donor match front. Neither good, nor bad. The US-only search revealed 5 candidates with "10 out of 10" gene matches. Several more with "9 out of 10". To, be clear, this does not mean we have 5 good matches. Each donor will be screened again, this time via a blood collection, to verify match and current health. There is also one cord (one set of cord blood) in the US that has a "6 out of 6" genes matched. Many more that are "5 out of 6". At this point we will continue to wait for Benjamin's results, Rafi's results, and the results from the international registry search. Should the results not improve, I am going to initiate a targeted donor drive. Not at this point, not yet. A few more days to know where we are.
Tonight we have returned from SF where we saw a few great docs at the Benioff Children's hospital. The trip did not provide any epiphanies, but did yield new (to us) information and food for thought. In short, the doctors there agree that Zevi meets the criteria for JMML. Some more genetic testing will be conducted, but at this point it is all but superfluous. The path forward, it seems, is with the bone marrow transplantation (HCT).
One mutation they are testing for is CBL, sometimes associated with JMML resolving itself. In likelyhood Zev does not have that - and that is a good thing. While CBL does indicate a chance of JMML going away, it comes, instead, with a plethora of other problems, both immediate and long term. One of the physicians, essentially, told us that given the choice, we'd prefer taking our chances with JMML. Enough said.
While the mechanics of the transplant are straightforward, the procedure before and after is anything but. There are decisions to be made as to the choice of a location as well as the drug regimen. Of course, this will be influenced by Zev's condition and our options for a donor.
The first news on the donor match front. Neither good, nor bad. The US-only search revealed 5 candidates with "10 out of 10" gene matches. Several more with "9 out of 10". To, be clear, this does not mean we have 5 good matches. Each donor will be screened again, this time via a blood collection, to verify match and current health. There is also one cord (one set of cord blood) in the US that has a "6 out of 6" genes matched. Many more that are "5 out of 6". At this point we will continue to wait for Benjamin's results, Rafi's results, and the results from the international registry search. Should the results not improve, I am going to initiate a targeted donor drive. Not at this point, not yet. A few more days to know where we are.
Saturday, May 24, 2014
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.
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.
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