Last week we went for Wesley’s 6 month appointment with the Hematologist. His count was 127,000!!
For those of you who don't know us, Wesley was diagnosed in 2002 at the age of 2 and 1/2. He had platelet counts under 20,000 (often 6,000) for about 2 and 1/2 years. He’s had WinRho about 30 times, IVIG 3 times, and Solumedrol twice. We watched and waited, even at single digit counts, when treatments stopped working. He was labeled chronic, refractory and severe. Thankfully, with the exception of one bad nose bleed and a terrible trip to the ER, he has never been a bleeder. Around the time he started kindergarten, his counts started going up on their own. They bounced all over the place for another 3 years, but were often in the 40,000-60,000 range. He also started going up with certain illnesses (ear infections, strep, the flu etc.). A couple of years ago he started maintaining normal/near normal counts. He's been between 80,000 and 240,000.
We were always told by our hematologist that a majority of chronic kids (60-75%) would eventually achieve normal or at least near normal counts. That is what happened for us, and that is what I hope for all of you with chronic kids.
Cathy (Mom to Wesley 10 diagnosed 4/2002)
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