May 10, 2011 mcfadyena

UNC trip re-scheduled

Those of you who know what’s going on will know why our trip has been re-scheduled. It’s a long story and one that I don’t feel like getting into at this point. So, our trip to UNC next week has been cancelled and we will now be flying to North Carolina for the week of June 27-July 1. Trey’s big test, his LP under anesthesia, will be on July 1, Canada Day. This test will determine, finally, if Trey qualifies for the IT trial. There is so much riding on this trip. This drug is doing AMAZING things for the boys on the drug so far. At this point, it is the ONLY treatment for brain disease in Hunter’s. I posted info about the procedures done during the trip, what happens if Trey qualifies & randomizes to drug or no drug etc., in an earlier blog, so you can get details here: If Trey does qualify & randomize to drug, he will be the third child in the second cohort and will receive the 30mg dose (the first cohort of 5 boys received a 10mg dose monthly). His port implant would be in the 2nd-3rd week of August & his first infusion would be two weeks later. If all this happens, everything will be gravy.
Emotional blogs I will post when they are contained enough to write about and not so huge that they might spill over. For now I go to yoga. And breathe. It is International MPS Awareness Day on May 15 and many of my MPS friends have been posting MPS facts daily on Facebook. These postings, both emotional and factual, have led me to realize how united and similar we are (and different from others) in our fears and struggles and good and bad days. To these friends, you know who you are, I highly recommend this song: Let’s work towards ahimsa, which means non-injury, for ourselves. I read a study that mother’s of ‘special needs’ children have significantly increased rates of heart disease and cancer compared to the rest of the population. Not surprising, considering the significantly increased stress levels. Let’s put an end to that.


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