Today was Hannah’s 26th Cerezyme treatment. Every two weeks for the past year, we have made the drive down to Texas Children’s Hospital’s Infusion Center. For 2-1/2 hours, Hannah is cuddled up against me (usually asleep) while she gets her life-prolonging enzyme replacement therapy treatment via an IV in her hand.
We have been lucky that she has not needed a surgical port placed yet. We, along with her doctors, have all agreed that a one-minute cry during the input of an IV far outweighs the risks of having to deal with an surgically placed infusion port inside her chest. The nurses at TCH have been able to master her IV placement, and it literally takes less than a minute to get it done. Even Dr. Schiffmann, her Gaucher specialist, was incredibly impressed by this feat.
In my heart, I truly believe the Cerezyme treatments have kept Hannah alive longer than if she had not had the treatment. I look back at how large her spleen and liver where when we started at 6 months old, and she would have probably suffocated because they were already shrinking her lung capacity by their size.
I know they say that Cerezyme does not cross the blood-brain barrier. But making her more comfortable by dealing with the other physical symptoms of type 1 Gaucher’s (bone pain, spleen and liver enlargement, etc) has made Hannah much more comfortable and happy.
Hannah is not in any pain. She does not live in pain. For that I am incredibly thankful.
One year of treatments down. A lifetime to go.
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