Update on Ethan (7-17)

Since we began this latest journey with Ethan almost two weeks ago, we’ve longed for the day when we could share good news with all of you.  But today is not that day.  As you probably know, Ethan was admitted to Children’s Hospital on July 5th due to extremely low blood counts.  Although doctors immediately expected Leukemia, a bone marrow biopsy concluded instead that he had Aplastic Anemia (a rare and serious disease that diminishes the bone marrow’s ability to produce stem cells).  And so early last week, Ethan moved to the PICU at Children’s and began Immunosuppressant Therapy… which was supposed to continue for 8 days in the hospital and up to several months at home and in the clinic.

But Saturday morning we learned that some lab worked had come back from Vanderbilt and it indicated that Ethan does not have Aplastic Anemia, but rather a Myelodysplastic Syndrome (or MDS).  Like Aplastic Anemia, Myelodysplastic Syndromes are also bone marrow diseases and so share similar symptoms (bruising, bleeding, etc…) and effects (low red cell, white cell and platelets counts).  Both conditions are rare and even rarer in pediatrics.  And as with Aplastic Anemia, there are different levels of severity of MDS.  In Ethan’s case, the syndrome is serious and life-threatening.  This type of MDS has a very, very high level of probability of turning into Leukemia… more specifically into AML (‘not your everyday Leukemia’ in the words of our doctor).

Because the Immunosuppressant Therapy is not an appropriate treatment for MDS, these medications were stopped Saturday.  Now Ethan’s best chance for a cure is a bone marrow/stem cell transplant.  And so Monday morning we will begin a search for a matched, unrelated donor.  In the meantime, he will be discharged today (Sunday) and be followed by the Children’s Hospital Clinic as we await a donor.  When a donor is found, we’ll be headed to Vanderbilt for several months of treatment (chemotherapy, transplant and recovery).

In case (like Sara and I) you are starting to get a little lost or overwhelmed with the medical jargon, we want to be very clear on one thing: how you can pray for Ethan and our family.  First, please pray that a good, matching donor will be found quickly.  He needs a good match so the bone marrow transplant will take.  He needs a quick match because it is important that he has the transplant before Leukemia develops.  You can also pray that Ethan stays healthy.  His blood counts are still very low and he is very susceptible to infection, especially bacterial infection.  Finally, pray with us for complete healing, whether by medicine or miracle (either would be from our Heavenly Father).  And as you pray for Ethan, please ask the Lord to continue giving his family inexplicable peace and resilient joy.

Again, we cannot thank you enough for your encouragement, love and prayers!
Jared and Sara

Scars and struggles on the way, but with joy our hearts can say, ‘Never once did we ever walk alone. Never once did You leave us on our own.  You are faithful. God you are faithful!’  Matt Redman, ‘Never Once’