Profiles of Sarcoma: Provide the Assist Recipient Bill

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As told by Bill’s wife: Things have been really rough but good.
Long story short: On January 17th 2011 my husband Bill (in photo with his sons) was diagnosed with lymphoma. They took his spleen out  …

In November 2012, he started bleeding when he was urinating. He was first off diagnosed with lymphoma of the bladder, another cysto was required causing pulmonary embolisms and infections, his oncologist said it was too rare for lymphoma of the bladder.

Little did we know it was much more rare than that!

On Jan 17th 2013 two years to the date the correct diagnosis came back from John Hopkins, he had a PNET (Primitive neuroectodermal tumors) in his bladder.  The diagnosis was Ewing Sarcoma.  He started chemo Jan 30, the pain was massive, the tumor continued to grow he was still able to work from home. This chemo made lymphoma look like a walk in the park.

After the third chemo he had an allergic reaction to the hospital regiment, (one day in the doctor’s office three weeks later, five days in the hospital) and his doctor said the only way he would live was to have his bladder removed.

I have had so many wonderful people helping us with everything. THE POWER OF PRAYER is amazing!!! My son plays lacrosse, and the entire team has been sending home meals and helping with everything. One woman in general has helped me to find the best surgeon in the country, his name was Dr. Bernard Bouchner in NY at Sloan Kettering.

It was truly amazing the way that hospital runs. They removed his bladder, prostate and lymph nodes, giving him a neo-bladder. They took a portion of his intestines and created a bladder (neo-bladder).  Incredible healthcare.. It has been challenging to say the least, they can give you a bladder but it still needs to be trained like a bladder. LOTS OF WORK..  His quality of life is restored!!!! In June he had a complete cat scan all signs of the Ewing Sarcoma are GONE..

He had another allergic reaction to the regiment in the doctor’s office in June so he quit taking the chemo until we can find an alternative. His attitude is Great, he just returned from Boston (my son lives there) he is going to the Dana Farber Hospital to find another chemo as everyone knows, the treatment starts after the tumor is removed.

ATTITUDE, and LOVE , are two of the most  important things you must continue
to fight and as Winston Churchill said: Never, never, never, quit.

With cancer there are so many wonderful people reaching out to help. This grant money came in at a time when we needed it most. We traveled to NY for surgery, to Tampa for treatment and now to Boston. It has been so nice to have help, I don’t know how we would have done it.

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