Friday, August 23, 2013

MEET EZRA: A DIAGNOSIS


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%
These are some of the JMML symptoms Ezra has displayed:
  • Paleness
  • Fatigue/lethargy
  • Petechiae
  • Fever
  • Infection
  • Bleeding
  • Cough
  • 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)
(Sources: http://www.cancer.gov/cancertopics/pdq/treatment/mds-mpd/HealthProfessional/page3, http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/juvenile-myelomonocytic-leukaemia, https://thejmmlfoundation.wildapricot.org/)

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.


8 comments:

Janine the Bean said...

God be with you all. May His face shine upon you. We will continue to pray.

Marc Andresen said...

We will be praying daily for you little boy. If you need anything up here let us know as we are 6ish miles away from dornbechers.

Marc & Elissa

Unknown said...

you and josh are such strong, loving parents, Ezra and Judah are so very lucky to have you. all we hope for, pray for, and think about is the future. we envision a time when we can all look back on this time with disbelief and remark on how well sweet Ezra is doing. how he is thriving. in my mind I can hear you telling the boys to "slow down!" as they run and play. he is a parker. by defition, a warrior. and our loving hearts are with you every day, every step of the way.

we love you all more than words can express.
grandma & grandpa

Lola Oshinowo said...

God is in control Elisabeth and He loves Ezra and everyone in your family. I will continue to pray for Ezra and for your family. Be strong in the Lord. He is faithful.

Linda Acidera said...

Our heart is breaking for the journey you are beginning. You are right that at least now you can start on that journey. God will walk with you and carry you all every step of the way. Praise God for the miracles and we pray continually for His hand to work mightily in this process.

We love you all so much, Nap and Linda

Sheba Wooddell said...

Josh - Elisabeth -

There are zero words to express my heart right now after reading the Dx. I am so sorry this traumatic trial has happened in your family. My love - prayers - my willingness to do whatever it is to make just something a little lighter in your load you carry is offered. I believe in miracles. I believe the Lord God knows what is to be. So it is up to us to believe ----believe ----believe...."thy will be done on earth as it is in heaven." God Bless you with his omnipotent strength -comfort - and peace --not as the world understands but only those in Him.

RainyDayMama said...

Our prayers will be daily for you and your sweet family. I trust our God will supply your daily bread in the form of strength, courage, and hope. He is a God of miracles, and we will be praying for just that. Love to you all.

Misty Mason Freeman said...

My husband James and I pray for Ezra and your family every day. May God find a way to turn this into blessing for you.