We are still waiting for the WAS test results. What we originally thought would be a 4-6 week wait turned into a 6-8 week wait, and most recently, a 9-10 week wait. But so much has happened since that test was drawn two months ago, the results now seem obsolete.
A week ago Tuesday (08/13/13), Ezra's routine blood work (CBC) was drawn. We've done this so many times now, we have a bit of our own routine going. Since my niece Ashley is still on summer break, I usually drop her and Judah off at a park on the way to the hospital, and Ezra and I meet up with Josh who drives over from work. We check in. We wait. We get called back to the lab. We recognize pretty much all of the phlebotomists on staff and cross our fingers that we get our favorite one. We hold Ezra. They put heat packs on his tiny feet or arms. If he needs one, the placement (and often replacement) of the tourniquet is enough to make him cry (sometimes more than the actual heel stick or needle poke). They poke him, just once if we are lucky. They fill the vile with his blood. We hope they don't draw a drop more than they need. We hope that the sample doesn't clot so we don't have to start the process all over again. They place some gauze and wrap it up. We watch the clock to make sure it isn't wrapped too long. Josh goes back to work, I pick Ashley and Judah up from the park, we go home and we wait for the results via phone the rest of the day, wondering what the numbers will be. Praying, hoping, wishing that they have improved. So last week, late afternoon on Tuesday, we get the numbers. Platelets are up to 104. Amazing. Hemoglobin is up to 9.6 (it hadn't been in the 9+ range since June). White blood cell count is still through the roof at 33.1. We aren't happy with the white blood cell count, but are pretty excited about the other numbers. We wonder for a second if maybe things are turning around for our sweet boy.
Then the phone rings Thursday afternoon later that week (08/15/13). It's our pediatrician with bad news (life altering news). When the pathologist was examining Ezra's blood work from Tuesday, he discovered immature white blood cells. Now our pediatrician has been concerned for many, many weeks about Ezra's white blood cell count, and the possibility that Ezra could have a myeloproliferative disorder, but without the green light from the hematologist (presumably because we were still waiting on the WAS test results), or supporting results from Ezra's first bone marrow biopsy, to our knowledge that kind of diagnosis was not really explored much further. The discovery of the immature white blood cells changed all of that, though. And not only that, but over the course of the last 6 weeks or so, Ezra has pretty much stopped growing...very little weight gain if any, and very little increase in length. His spleen has also become increasingly large. And, at the tender age of 4 months old he has been more severely sick than big brother Judah has been in all three years of his life. On Friday, after Ezra came down with a stomach bug, we met with our pediatrician and discussed all of the above. Of course I had already googled the heck out of what I thought we would be facing, but at our appointment it was confirmed that we would need to head back up to Doernbecher's for Ezra's second bone marrow biopsy, and that the likely myeloproliferative disorder in question is a form of leukemia called JMML (Juvenile Myelomonocytic Leukemia).
So all that brings us to this past Monday (08/19/13) when Ezra had to undergo his second bone marrow biopsy. After speaking with our hematologist before/after the procedure, it became more and more clear that the JMML diagnosis was imminent and that this second bone marrow biopsy would most likely be a confirmation of that diagnosis. Thankfully we didn't have to wait too long before receiving the phone call (this afternoon, 08/23/13) with the news that will forever change the course of our lives: almost all of the biopsy results from Monday are in and they do in fact support the diagnosis of JMML. We will head up to Doernbecher's next Tuesday to talk about our course of action.
I have links in the paragraphs above to the JMML Foundation, but I will include some information from other sources here as well:
- JMML is a serious chronic leukemia (cancer of the blood)
- It is a very rare disease, accounting for 1-2% of all childhood leukemias
- An estimated 25-50 new cases of JMML are diagnosed in the US each year, which equals about 3 cases per million children
- Most cases of JMML are diagnosed in infants and toddlers
- JMML occurs more commonly in boys
- There is no known environmental cause for JMML
- Since about 10% of patients are diagnosed before 3 months of age, it is thought that JMML is a congenital condition in these infants
- The best course of treatment for JMML is a blood or bone marrow transplant (BMT)
- Prognosis is more favorable:
- for males
- when diagnosed under the age of 1
- when platelet count at diagnosis is greater than 33,000
- The rate of survival in remission at 5 years after transplant is about 50%
- Poor weight gain
- Lymphadenopathy (enlarged lymph nodes)
- Moderate hepatomegaly (enlarged liver)
- Marked splenomegaly (enlarged spleen)
- Leukocytosis (high white blood cell count in blood)
- Absolute monocytosis (high monocyte count in blood)
- Anemia (low red blood cell count in blood)
- Thrombocytopenia (low platelet count in blood)
Obviously this is devastating news, but in a very small way, it is good to finally have a diagnosis, to know the severity of what we are facing, and to ultimately be one step closer to helping our sweet, sweet boy. That being said, there is still so much for us to process, so many new questions to ask...so many tears to cry.
We share this news with the hope that you will continue to pray for Ezra...and that you will specifically pray for a miracle...for his complete healing. We ask for prayers for strength and courage for the difficult road that lies ahead of us. We know that you probably have a lot of questions right now, but we ask for an extra measure of your grace when we cannot find the energy or the words to answer them. We ask you to stick by us through our triumphs and through our trials. We need your love and support now more than ever, and we thank you in advance for all of it. God bless our sweet Ezra, and God bless you all for joining us on this journey.