We spent 8 months
getting regular IVIG, platelet and red cell transfusions along with other, more
experimental treatments, however his symptoms persisted.
Several bone marrow aspirations showed small platelet cells but no
leukemia. During this time Zach had several GI
bleeds. His platelets would range between 5,000 and 30,000. Zachary’s
eczema was always very manageable, but his bleeding was the main concern. He
wore a helmet while learning to walk. We padded our hard furniture and back
patio. Zachary’s illnesses, such as a common cold or ear infections, were
difficult to get rid of as well.
We finally got the
Wiskott-Aldrich diagnosis when Zachary was 1 ½ years old. He did not have a
sibling, but we were lucky to find a perfect six out six match for a bone
marrow transplant through the National Marrow Donor Program. Zachary received a
successful bone marrow transplant in April of 2005 at Texas Children’s Hospital
in Houston, Texas. He had a very good recovery with only a few setbacks due to
infection post-transplant. Thankfully, he did not develop graft versus
host post-transplant. The journey was not
easy, but it was one we were prepared to take.
Zachary is now a healthy 8 year old boy. He leads a very normal
life. He is down to one doctor’s appointment per year to monitor his progress.
I always love to hear his platelet count. They can’t just say he is in the
normal range. I make them tell me the actual number, out loud, so that we can
celebrate.
In 2010 we were able to
locate his donor who resides across the world in Germany which was a huge
blessing. We have been able to connect over the Internet and hope to one day
meet. If you would like more details about our journey, please contact me
at jones.kathyg@gmail.com.
Kathy
