Welcome to Jordan's Web Page. He was diagnosed with Desmoplastic Small Round Cell Tumor in October 2003 at age 12. He was treated at Connecticut Children's Medical Center by Dr Eileen Gillan who followed Dr Brian Kushner's P6 protocol. He had an extensive surgery at Sloan Kettering by Dr Michael LaQuaglia, followed by radiation, stem cell rescue and 6 months of oral chemo.
He has remained tumor free since his surgery. Unfortunately, on March 28,2006 following a routine 3 month check up, he was diagnosed with MDS, a form of leukemia which rapidly progressed to AML. He received a bone marrow transplant on June 23, 2006 from his brother at MSKCC and is currently recovering from the transplant at home after being in NY for over 4 months.
This website has been provided to keep family and friends updated about his progress.

Journal

Saturday, June 28, 2008 10:23 AM CDT

Happy Summer to everyone. We've been non stop with baseball and end of school activities, but I'm not complaining. Next year we'll have 2 kids in highschool...how did that happen???? Matt will be a freshman and Jordan will (hopefully) be a senior. He struggled this year after missing half of freshman and all of sophmore year but he did OK in everything except for English. I think the transition back to school was more difficult than he had anticipated. We just found out that he has to go to summer school but we're hoping he'll learn not only English, but that he might have to actually put a little effort into his schoolwork to do well. Unfortunately he's learning the hard way. Let's hope for a smoother senior year!
Healthwise he's been battling sinus infections and a skin rash that nobody seems to know what to do about. This has been an issue since his transplant but it seems to have escalated this winter. Maybe it's because his resistance is down after being exposed to all those germs at school. They've ruled out graft vs host disease and fungal infections, but still nothing they try to treat the sinuses or skin seems to work for long. Other than that he's doing well physically.
Our thoughts and prayers are with everyone on the DSRCT site especially Maggie's family. And to all those who continue to battle this disease.....stay strong!
Enjoy everyday.
Love,
Karen

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E-mail Author: kmfm66@sbcglobal.net

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