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Rhode Island… Hasbro Childrens Hospital
Wednesday, March 24, 2004
Today we had an appointment at Hasbro Childrens Hospital in RI. And yes, we finally have a protocol for Joseph. Here's the plan: tomorrow we go to Boston for a series of tests in preparation for the Fenretinide. We'll get a baseline of vision, liver function, heart, etc.. Next tuesday, Joseph will have bone marrow biopsies in RI and then an MIBG injection in Boston that afternoon. Wednesday he will have the MIBG scan. We are hoping that it will show little or no progression of the neuroblastoma sites. Friday, April 2nd, he should begin treatment. Treatment will involve taking 5 pills, 3 times per day. Yup, that's 15, very large, pills a day. They cannot be broken, crushed, or cut. They say that this is the hardest part of treatment, taking the pill itself. Hey, we'll take it. There is hardly any side effects and it is much less toxic than chemo. His blood counts should remain normal, but he will need frequent blood draws to check liver function and more. He should be able to remain home and attend preschool during treatment, aside from appointments. So, it looks like we will be traveling to Hasbro for a while and then transferring to Boston when this same protocol opens up there. This is a phase II study and has been around for a very short time (maybe 2 years). It has been very successful in shrinking tumor. However, it is not yet considered a cure. We can only hope that this will be THE CURE.
Thanks for checking out this update. We are grateful to you for following-up and learning of what is going on. It's nice to know you are there, thinking about Joseph and our family.
God be with you
Holly
See Boston Journal – April 2004
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