Summers usually go by so fast, but this year has been an exception for us. Every Saturday spent in a hospital room for infusion. Every 2 weeks, long trips to Oakland to receive treatments. Countless Hours spent writing amendments to our treatment protocol, and desperately trying to get treatments done locally. All this while taking care of the kids, and trying to keep things as "normal" as possible.
But, it's not all discouraging. The kids are enjoying different summer camps, and swimming and many trips to the library and Barnes & Noble! We celebrated Kayla's 12th Birthday 2 weeks ago, and Peyton's 15th a couple days ago. (15, Wow!)
We are ALMOST there in being able to get the IT treatments done here in Medford, which would mean no more trips to Oakland. We have found a pharmacy in Portland that can compound the Cyclodextrin and deliver it, and the local internal review board has approved it, we just need final approval from the hospital. Keep praying this comes through!
So, for now we will continue the battles and enjoy the rest of summer with our kids. For your reading enjoyment J , a paper was just released by one of the leading researchers in NPC. This is an outstanding paper (to us science geeks!), that does a great job in giving a brief history of attempted treatments for NPC, and highlights how promising Cyclodextrin is, and how it really is the ONLY treatment available. Hopefully soon, they will publish a similar paper on how well the treatment is doing for KIDS!
You can download the paper at the top of this page on our website: Download Paper as PDF