So far, in this year of 2010, we have traveled to Chicago’s Childrens Medical Center in March and June for Dr. Pachman’s ongoing medical evaluations of Cara’s progress.
We are flying up there again next month in September.
Professional tests and reviews show that Cara has been tolerating all of her medicines acceptably well. However, she has not been growing at what is considered a normal rate, due to her having had to be continuously on these steroid therapies over the last three years of their administration.
CARA’S RATE OF GROWTH
This is a serious concern of Cara’s physician. Dr. Pachman, for that reason, has been systematically reducing Cara’s intake of these steroids for the past four months. She has now placed Cara on Cellcept and Cyclosporine, which are alternative effective immunosuppressants, which will hopefully take the place of the Prednisone and Solumedrol. Cellcept and Cyclosporine do no harm to her bones nor contribute to any stunting of her growth. We are encouraged that they seem to be working positively for her… which if sustainable… will indeed be wonderful!
Her bone density test (DEXA) that was done in June showed that she has suffered some serious bone deterioration, so getting her off of the steroids, and substituting them with 1000 mg Vitamin D should help her bones build back up. They will watch her closely.
We still face the expenses of uninsured, out-of-pocket costs of air travel to and accommodations in Chicago every three months for quite some distance into the future. When this will decrease, if it does, is not knowable now.
Cara has been much challenged but maintains her fighting spirit, in trying to win against this unforgiving disease. Cara’s experience is one of the more complex cases with which Dr. Pachman has had to deal. JD’s damage to her skin has been the most heartbreaking.
THINGS YOU’D RATHER HOPE WOULDN’T HAVE TO HAPPEN, BUT ARE NECESSARY
While we were up for our usual visit in March, Dr. Pachman had a consulting physician from Harvard to help with these studies that she is doing with the children who have more skin involvement from the disease. It was requested of Cara that she allow the surgical removal of a section of skin from her back that would become a part of the research that they are doing on Juvenile Dermatomyositis. Choosing to do that was a very difficult but important decision for Cara... as she really wants to help with the research of her disease, but did not want to suffer the pain of that surgical procedure. But SHE made her own decision to have this done, and we all felt very good about that and extremely proud of her as to her making that ultimate choice. What a contribution for an eleven year old girl to make… not only for her sake, but the greater good of all the others, some of whom have become close and personal friends, and who have been enduring what she is also struggling through!
FOUR YEARS ALREADY?
Cara's fourth annual fundraiser for medical research, cure, and the unavoidable but necessary travel expenses for Cara will again this year be at the Beach Club on Siesta Key, Tuesday, October 12th, thanks to the devotion and generosity of the Beach Club’s ownership and management, to Cara and her cause. If you would like to help Cara out with or through this event in any way at all, please call me and I will tell you what we are in need of doing and having to make this year's fundraiser a blowout success! 941 809 0283. Or email me at firstname.lastname@example.org. Feel free to jump in. We all are!!!
I will post more specific information here, as the date approaches, so that you will able to come out and join us for a really great time for and for a really great cause.