We had Hannah’s 6th Cerezyme treatment today. It was a bit rougher than usual because it took two attempts at an IV. After the first attempt, she was bleeding like crazy. Of course, my first thought was “damn, her platelets must not be up yet…is it not working?” She was very restless during the first 45 minutes or so of the treatment. Her BPMs were in the 150s for that entire time. Finally, she fell asleep, and her pulse became more normal.
We were told today that they are going to test Hannah’s 3-month response to the Cerezyme at the next treatment (May 4) with some bloodwork to be sent out. I was told not to expect anything big, but that they just want to see a trend of starting downward. Those tests will take a few days and up to a month for part of the results.
I hope, hope, hope this is working. If anything, just to continue to make Hannah comfortable physically.
I wish, wish, wish it would fix the neurological aspects of this friggin’ disease, but I’ll take what I can get right now. But I’m dead-set determined to find SOMETHING that will give Hannah a full life, or if not, a longer and better quality of life once the disease progresses! I keep finding bits and pieces of people working on different things, some directly for GD23 and some not, and I just wish I had a way of putting them all together and see what pieces can fit together.
Sorry it was a rougher a day for both of you. I will pray for good results with the tests.
I am sorry that this treatment was so difficult for you both 🙁 Hopefully the blood work at the next treatment will show some good results 🙂
You two are one tough pair!
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