Tuesday, April 28, 2009

Limbo, testing, more limbo, more testing ...

Hunter was hospitalized with a 24 hour nose bleed last June. We learned that he had less than 5,000 platelets when we received his first set of lab results during that 4 day stay. He received a blood transfusion and two IVIG* treatments the first two days he was in the hospital. However, it wasn't until Hunter was scheduled for bone marrow sampling on the third day that our hematologist, Dr. Hofstra, looked at the morning labs and thought Wiskott-Aldrich syndrome. I remember we were so elated when the nurse told us that Hunter wasn't going to have to go through the bone marrow sampling. Obviously, that elation didn't last when the team of doctors came in and told us what they thought (knew) Hunter's situation actually was.

I remember breaking down for a couple of reasons when they explained the gravity of a WAS diagnosis. The first reason was a child, our son, Hunter, who was a couple weeks short of his first birthday. The second reason was a future child, Harper, created with the same surrogate and egg donor, who had just finished her first trimester in the womb. I also remember the relief I felt when we learned that our surrogate was carrying a girl for the first time after birthing NINE boys. Again, Wiskott-Aldrich syndrome affects only boys. However, the chance remains that Harper will be a WAS carrier. We've decided that we will cross that bridge when we get to it.

It honestly feels like we've been in limbo since that morning in the hospital. Initially, we had to wait until the second week of August for lab results confirming that Hunter definitively had WAS. Then we had to wait 3 months for the August IVIG to wear off so that our immunologist, Dr. Church, could conduct testing on Hunter's immune system. Then we had to wait for our egg donor to get tested to see if she was a WAS carrier, which she was. Then we had to wait another month for the results of Dr. Church's testing, which didn't give us the answers we were looking for. Then Hunter had testing done by another immunologist, Dr. Ochs, at Children's Hospital in Seattle in February. We have one more blood draw this Thursday and then, hopefully, we'll have results that will provide us with a direction to move forward in.

Wow, is it almost May?!

* A blood product administered intravenously that contains immunoglobulins (antibodies extracted from the plasma of over a thousand blood donors).

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