Her father first started getting sick a couple of years ago, Mary recalls. He had a constant cough, and began losing weight and experiencing shortness of breath. He went to see his primary care physician, and was diagnosed with pneumonia. This happened several times, and always the story was the same. He even had fluid on his lungs, and he would have a short hospital stay, and even though the fluid was tested, there was no diagnosis and he would return home, Mary says.

“We had not heard of mesothelioma before he got his diagnosis,” Mary says. “The doctors didn’t seem to have any sense of urgency to find out what was going on. I began looking on the internet, and he had seven of the nine symptoms for mesothelioma.”

At that point, Mary insisted her father receive a biopsy to find out what was going on with the recurring fluid in his lungs. On June 2, 2009, they received the diagnosis – epithelioid pleural mesothelioma. By the time he was diagnosed, he was already in stage 4. Despite trying chemotherapy, he passed away by August 15.

“The system failed my father,” Mary says. “There was just no sense of urgency.”

A Navy veteran, her Dad was being treated at the VA medical center for an atrial fibrillation, and had been on coumadin for a few years. When he began having his bouts of pneumonia, the doctors at the VA called for an MRI / PET scan, and his May 12 test records indicated a suspicion for mesothelioma. But her parents couldn’t read the paperwork, and the primary care physicians somehow missed the notation, Mary says. He had several thoracenteses, yet never had a diagnosis for mesothelioma until Mary insisted on a biopsy nearly a month later after reading about meso online.

“I was the internet MD at this point,” she says. “It drove my father crazy,” she recalls. By the time he was diagnosed, her Dad, who was 6’1”, weighed only 132 pounds.

Despite the advanced state of his mesothelioma and the toll it had already taken on his body, Mary says her dad immediately began talking to the doctors about treatment options. “He went through this whole process wanting to fight it,” she says. “He did not give up until the very end, and was willing to do anything necessary. He was definitely a warrior.”

Even while his illness sapped his strength and breath, and his chemotherapy caused him physical pain, he barely let it show, Mary says. He was still the rock of the family, looking after his wife of 55 years, Betty, along with his five kids, Mary and her sisters Lisa, Linda and Midge, and their brother Billy; as well as 8 grandchildren and one great-grandchild, all of whom live in Texas, spread out in San Antonio, Austin and Dallas.

“He put a strong face on it, even though he was struggling to breathe every day,” Mary says.

Now, the family is working to raise awareness, hoping to help other families make the diagnosis earlier, and to prevent exposure to asbestos in the first place.

“It seems like after we found out about my Dad’s diagnosis, we heard more about mesothelioma. I was watching the news after my father’s diagnosis and they were talking about Libby, Montana. Speaking to two of my friends, I found that their fathers had died from meso, and one girl’s grandmother died of mesothelioma. A contractor right here in our building, his mother is living with meso and his father passed away as a result of meso. It seems like it’s all around me.”

Mary and her family are working on awareness efforts in their cities. Mary got Austin Mayor Lee Leffingwell to sign a petition declaring Mesothelioma Awareness Day in the city, and she is working with Texas State Senator Mario Gallegos, Jr., whose father also died of mesothelioma, to create a proclamation in her father’s honor. Her goal is to get a permanent designation for Mesothelioma Awareness Day in the state of Texas.

Additionally, Mary is working with her local running clubs to establish a “Miles for Meso” event similar to the one that is taking place in Alton, Illinois, on Sept. 26 this year. She hopes to have that established and hold the inaugural race in time to celebrate Meso Awareness Day – and her Dad’s birthday – in 2010.

SOURCE: myMeso › Mesothelioma Awareness Day holds special meaning for Texas family

Registration fee for the event is only $15 (prior to Sept. 16; $20 after Sept. 16, $25 day of the event), with all proceeds going to the Mesothelioma Applied Research Foundation, which is the national non-profit dedicated to ending the suffering caused by mesothelioma by funding mesothelioma reserach, educating patients and advocating for federal mesothelioma funding.  The event is sponsored by Simmons Law Firm, which has pledged to match every entry with an additional $15 donation to the Meso Foundation.

The race is open to everyone of all ages, from serious runners to walkers and families. The event will be coordinated by the Metro Tri Club. There will be cash prizes, and every participant registered before Sept. 16 will receive a commemorative hi-tech running t-shirt.

You can REGISTER ONLINE or download a registration form at the web site and mail it along with your registration fee to:

Miles for Meso
c/o Metro Tri Club
P.O. Box 42
Roxana, IL 62084

Checks should be made payable to the Mesothelioma Applied Research Foundation.

The 5K race will be a timed, competitive event, and the 5K fun run/walk will be a great chance for runners, walkers, families and others to show their support for a great cause.

For more information visit the official web site at www.milesformesothelioma .org.

SOURCE: myMeso › Miles for Meso fundraiser race set for Sept. 26