(You may send a check payable to Jeff & Annie Hughes c/o Wells Fargo Advisors, LLC, 10900 Wilshire Blvd., L.A. CA 90024; Acct#8[phone redacted])
As many of you know our 9-year old son Jeffrey was diagnosed on 11/11/11 with DSRCT, which is an acronym for desmoplastic small round cell tumors. DSRCT is a very aggressive cancer, and it was previously thought to be almost uniformly fatal; but it is so rare, there only 600 diagnosed cases in the history of the disease since its discovery in 1991, that those statistics haven't played into our efforts to help our son achieve a 100% recovery. After three massive debulking surgeries at Memorial Sloan Kettering Cancer Center in New York City removed some 14 various tumors in his abdominal and thoracic cavities in March, May and July, 2012, five weeks of intensity modulated radiation therapy in August, eleven rounds of chemotherapy from Nov 2012 to October 2103, and monoclonal antibody radioimmunotherapy in December, which also required a 2nd laparotomy operation on his tummy to strip adhesions from his intestines, and peritoneal cavity for the second time, Jeffrey has "no evaluable disease." We have been told that if we don't continue to attack this disease on numerous different fronts, it will come back, and more than likely, take his life. This is what has happened in 80% of the 600 known cases in the last 40 years. Or has it? There has been at least one individual that recently passed that did not know he had the disease for 50 years. Maybe there are numerous other people with this disease, that are living relatively long lives.
On 3/3/2013, Jeffrey completed his first maintenance chemotherapy session involving the drug Irenotecan, which will be given to him monthly, along with other drugs such as Avastin, for the rest of his life, or until a better therapy is discovered. We are prepared to fly Jeffrey to anywhere in the world on a moment's notice, and for this type of battle plan, we need to have cash reserves in order to meet all of our financial obligations while traveling, and participating in clinical trials.
Thanks to the amazing support of our community, family and friends during the 16 month, we were able to focus on Jeffrey's care when needed, and raise Amelie and Lincoln in a loving environment with the help of Annie's younger sister Julie, our oldest daughter Mercedes, and mother Diane during several of our trips to NYC.
No donation is to small, and every dollar helps.
The Hughes Family
For more information about Jeffrey and his treatment plan please visit www.jeffreyhughes.shutterfly.com
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