Jordan's Page

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

Friday, December 30, 2011 9:12 AM CST

Hi everyone, First let me apologize for not writing in so long. I think my fear of updating came from a combination of worrying about "jinxing" Jordan's NED status if I posted before I had scan results + sadness over the emotional struggles he's been dealing with for a few years leading to some bad decisions affecting his life path and of course a pinch of survivor's guilt is mixed in there. HOWEVER....my sister has reminded me that enough is enough and it's more important to let everyone that is battling DSRCT know that Jordan remains cancer free. (See...I just had that twinge of worry that I said that out loud before his January scans. I'm so superstitious since we started this journey!) He was diagnosed in October of 2003 at age 12 and then in 2006 he was diagnosed with Leukemia. I'm happy to say that on December 27th he just celebrated his 21st birthday. (we'll skip the food poisoning part of that story!!) He just participated in a study to see if using cardiac MRI testing will show changes in cardiac function sooner than EKGs and echocardiagrams for kids that received high dose chemo as part of their treatment. He had a visit with Dr. Gillan at the same time and she said he's doing great. As I mentioned earlier, his next scan will be in January and at this point he is having scans only once a year now. Our DSRCT family is always in our prayers and I hope that reading that Jordan just hit his 8 year anniversary of being cancer free from this disease brings a glimmer of hope to those still fighting.
We wish amazing miracles and good health to everyone in 2012
Love,
The Marquis Family
Bob, Karen, Jordan, Matthew, Zach and Emily

Hospital Information:

We are home!

Links:

E-mail Author: kmfm66@sbcglobal.net

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