Yup, it's been a whole year again. Another year of pretty much nothing interesting happening, which is how we like it. Max is growing like a weed and will be 11 soon. In 19 days, it will be the 8th anniversary of hearing those dreaded words "drive immediately to Mass General Pediatric Oncology." Sometimes it seems like it was all just a bad dream, sometimes it feels like it just happened. It's amazing how driving into the parking lot still makes me feel so ill. Luckily, Max isn't bothered by it. He was genuinely looking forward to the day, and to seeing Dr. Ebb and MGHC pedi hem/onc department. And we had such a great day, too. We did our annual trip to the aquarium, his choice, then ate a restaurant in the North End, followed by pastries from Maria's, enjoyed on the Rose Kennedy Greenway. Max played in the fountains for a bit, and then we headed over. It was hard to pull him away from the fountains. I love watching him play so freely.
His appointment went really well. Everyone was amazed at how tall he was and his long hair was a pretty popular topic of conversation. Perhaps because in a world where so many have no hair, it really stood out? He got a visit from Kelyn Rowe for the New England Revolution and Kaitlin Sandeno, an Olympic swimmer. He didn't know who they were but definitely seemed to appreciate it none the less.
Dr. Ebb was sure that his counts were going to be good and they were. He told me about a patient of his who came in 35 in the Boston Marathon this year who was diagnosed with Aplastic Anemia in '98. It turned out that it was the same person whose mother met with me and comforted me with stories of how well the ATG/Cyclosporene treatment had worked for her son. It was great to hear that he continues to do so well. I know that he's doing well and probably will always do well, but sometimes that 33% recurrence rate thing gets stuck in my head and it's hard to shake it. They have a patient undergoing the same treatment now. I told Dr. Ebb that if his parents ever want to talk, to put us in touch. Hearing about a success made me feel so much better. It's so easy to find bad news on the internet and the disease is so rare that there aren't a lot of others to talk to. I still remember how scared I was and hearing that this other boy had done well make it just a little easier.
The numbers:
WBC - 6.1
Hematocrit - 37.6
Platelets - 176
ANC - 3300.
Everything else was in the normal range as well. Life is good.
Tuesday, July 01, 2014
Annual Update
Posted by Dorothy at 10:28 PM 0 comments
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