In March 2011, our daughter Katie had just turned 5 and we noticed small bruises all over her body. We wondered if they were happening at preschool. We went in for a visit with her doctor and we expressed our concerns. Blood work showed very low counts and we immediately went to the emergency room at Arnold Palmer Hospital for Children in Orlando. Katie went through many tests and a bone marrow biopsy, and was diagnosed with severe aplastic anemia.
Katie moved to treatment within one week of diagnosis and received the standard regimen of horse ATG, augmented with prednisone and cyclosporine. She was transfusion-dependent with blood and platelets for 3 months. Katie had cyclosporine for about 9 months and switched to tacrolimus which she tolerated better.
While we were researching Katie’s rare disease, we found the AAMDSIF website and felt so relieved to know there was support. We were very shocked and panicked not knowing anything about her diagnosis and signed up right away for the November 2011 conference in Tampa. It was 6 months away at the time but it gave us a plan and hope that we were all going to get through this. We still attend the annual conferences and look forward to meeting friends and learning the latest information.
Looking for a match and continuing treatment
We learned there was a chance immunosuppressive therapy might not work so we requested a bone marrow search be done, but no match was found. We took Katie to the Medical College of Wisconsin in Milwaukee to see a pediatric aplastic anemia and transplant specialist. Katie had another bone marrow biopsy, blood work and they ran another marrow search. No match was found.
Katie’s treatment went on for 3 years. All medications were stopped in June of 2014. Now all her counts are in normal range and her aplastic anemia is in remission. Katie has learning and memory problems but is living a full normal life, and we are so grateful for this! She still needs lots of sleep and has trouble keeping weight on but she dances, kayaks, and is very social.
Helping others
We were blessed to have Katie respond to her treatment so well. Realizing Katie has no match and thinking about all the others needing transplants we started holding drives for Be The Match. There was no one in our area doing this, so our family and friends helped and thus far we have registered over 1,000 people. Katie actively helps with the drives, and we do a lot of education and teaching. We’ve had 2 people we registered at our drives go on to be donors that we know of, so that is 2 lives potentially saved! We are making a difference! Katie got a border collie puppy she named ‘Match’ after Be The Match. (www.bethematch.org) He is our mascot when he can come to a drive
A chance meeting leads to a memorable photograph
We were helping with a Be The Match drive at a very large human resources conference in Orlando, with thousands of people attending. Robin Roberts from Good Morning America was the keynote speaker. She was also signing copies of her latest book and there was a long line. Katie was wearing her red “Knock Out Aplastic Anemia” shirt and a Be the Match sticker. She had a sticker to give to Robin Roberts and when we asked the security guards about this, and told them she had no match for a transplant which Robin Roberts had gone through, they brought Katie to the front of the line. Robin sat down in a chair, held and hugged Katie when this picture was taken. She took a few minutes to spend with Katie. Katie told me after “Mom, that TV lady was so nice to me-she said she wished she could be my match!”