September 21st, 2011 by Stephen Chance
posted on CarePages September 21, 2011
The hu14.18 trial we have been waiting for so intently will open officially on Monday! On Sunday, October 2, we are taking the kids to Harry Potter World at Universal Studios in Orlando for a few days. Patrick and I will fly from Orlando to Philadelphia on October 5 for a full disease evaluation at CHOP on October 6 and 7. We hope to spend a long weekend in the mountains after that. If all goes well with the disease evaluation and other tests, we will enroll Patrick in the trial and fly back to Philadelphia the following week for treatment. This trial will open at CHOA later, and it appears we can transfer back home at some point so we won’t have the travel burden forever. The treatments will be tough on Patrick, but he can handle them.
He has been doing quite well. We camped out at Druid Hills Saturday night then went to the Braves game Sunday with two of his buddies and their Dads (my buddies too). A sweet friend who happens to be married to the ace of the pitching staff took great care of us. The kids ran the bases after the game and then we all got to hang out in the Braves family lounge while our favorite players and some of their family members mingled about. We caught up with old friends Tom Glavine and Tim Hudson and made new ones as well. It was a lot of fun!
This Friday night our friends Shawn Mullins and Patrick Blanchard will play Druid Hills. I will be introducing these gentlemen to the crowd so I won’t foreshadow my remarks here too much. But I do encourage you to go to Shawn’s website and take note of the banner on the bottom left of the home page. He is yet another hero who has emerged during this journey. Patrick Blanchard has stepped up too. We are very grateful.
As for the title of this post, if you don’t know what it means, it is the Unforgivable Curse from Harry Potter that kills the opponent. Maybe we can all say the spell in unison when the hu14.18 starts to drip. Seriously, spells are one thing, but its your prayers that are keeping hope alive.