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Welcome to our daughter Karly's Fanconi Anemia Website. It has been provided to keep people updated about Karly's progress as she gets a new life through a bone marrow transplant.
Journal
Wednesday, August 19, 2009 9:25 AM CDT Karly started 8th grade today…a year to enjoy being the “big cheese” on middle school campus. J
Monday we went to 4 doctor appointments. At the endocrinologist we learned that in the year she’s been on growth hormones she’s gained 3.5 inches and lost 20 pounds. Her growth plate is almost closed (in girls it closes on average at age 14). Apparently she also gained 1.5 years of bone age too, so her bone age is now the same as her real age (14). This makes it very tough to get insurance to approve any more time on GH, but we’re hoping for 6 more months. She is less than ½” from 5’ tall! Her second appointment was with the head & neck surgeon for an oral cancer screening (we missed seeing Dr. Singh at camp!). That went well. We’re so blessed to have found the one doctor in Charlotte who’s related to a FA patient so he knows the oral cancer risks. Next was the hem/onc doctor. That too went great as usual, but I was a tiny bit disappointed in her counts. Since transplant her platelets have been in the 320k range. This time they dropped to 286k. That’s still perfectly normal, but her first drop. Hmmm…trying not to overreact to that! Her lymph count was high too (48.6%) so I’m hoping it just her fighting off something, although her white count was a normal 6.1. Our 4th & last appointment of the day was mine (hematology) so Karly got to see me get the blood test for a change. Other than the appointments, we had a great girls day out complete with a trip to the mall. I’m really blessed with such a great daughter!!
Do you ever stop waiting for the other shoe to drop? With FA I guess not. Still trying to enjoy each day to the fullest!!
God Bless,
Nancy Ross
www.caringbridge.com/ca/karlyross
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