http://www.caringbridge.org/visit/sorooshdavani
Family and Friends,
Shortly after we were married in July of 2006 we noticed Soroosh was slowly gaining weight on his belly. The slow weight gain continued for the next year and we thought I was just feeding him really well. So I started to cut back on his carbs (less rice and pasta) and he increased his exercise. After months of diet changes and different stomach exercises Soroosh decided he would mention his weight issues at his annual physical.
In late September 2007, after his physical with the primary care physician and then a visit with the gastroenterologist for a slight umbilical a hernia we were stricken with the news of cancer. We were completely in shock and in denial given Soroosh’s young age of 28.
Soroosh was diagnosed with a rare form of cancer known as Pseudomyxoma Peritonei (PMP). Literally, this means false (pseudo) benign tumor with mucinous features (myxoma) of the abdomen (peritonei). PMP is sometimes known as 'jelly belly'. His cancer originated in the appendix and more than likely he has had it for four to six years.
Unfortunately Soroosh’s cancer is significant (stage IV) and many of the specialists told us he is not a surgical candidate. Chemotherapy was suggested first but it is our belief after reading the research surgery is the best option at this time.
After months of prayer we finally received our answer. Dr. Jesus Esquivel, in Baltimore Maryland, at St. Agnes Hospital, disagreed with the other specialists. Dr. Esquivel worked with Dr. Sugarbaker (top in the field) for six years. Dr. Sugarbaker agreed with Esquivel but was having his own health issues during this time. After consulting with the top six specialists in USA we decided to proceed with surgery on February 5, 2008. It lasted eight hours. We decided not to have his stomach removed. Quality of life is more important and we pray for new treatments to try and kill this awful disease.
They removed 4 liters of mucin and 2 liters was tested and it came back and it came back from pathology stating: LOW GRADE MUCINOUS CARCINOMA PERITONEI (MCP-L)
Because PMP is such a rare condition, it is an 'orphan' disease. This means that there is little knowledge of it in the medical community and little research is being done to find better treatments. This is why it is so important to promote awareness so that an appropriate standard of treatment is recognized and money is raised/made available for research. There is about 1 person with PMP for every 1,000,000 people in the U.S. an most people inflicted with this cancer are in their 40's and 50's. So we beat the odds again!
Making a donation for PMP cancer research just got easier!
Go to:
http://pmpcure.org/Home.asp
The goal is 100K to issue grant. Once the goal is reached the researchers can apply for the grant and the group will continue to raise the money. This is critical, since this 'orphan cancer' does not receive money from the NCI and from other grants. Most of the money comes from private donations or hospital grants.
We need your help,
Rosemary and Soroosh Davani
Scottsdale, AZ
