Bernie Ring used to travel to Boston from his home in Sullivan at least every other week to be treated for a complication that developed after a bone marrow transplant. The donated marrow, meant to help him recover from leukemia, was attacking his body, leaving the skin around his waist and left leg thick and inflexible.
He had a difficult time walking and breathing. Regular blood-filtering treatments in Boston helped to control his body’s immune response, loosening up dead cells that were clogging his system and toughening his skin. But the time and expense of the 600-mile trip wore on Ring, and he risked his health by cutting back on treatments.
His future sister-in-law, Betty Weidner of Corea, thought other patients in Maine must be facing the same hardship. So she dialed up a number of health care facilities in the state to see if they would install the blood-filtering machine. One by one, they said no. The machine was too expensive and there weren’t enough patients to warrant the investment, she was told.
Months later, in the fall of 2011, Weidner called CancerCare of Maine, an Eastern Maine Medical Center facility located at the Lafayette Family Cancer Center in Brewer. Executive Director Allen L’Italien, after researching the treatment, made Weidner a deal: raise $40,000 to pay for the machine and CancerCare of Maine would install and staff it.
Weidner, who works as a receptionist in an Ellsworth dental office and had no fundraising experience, was undaunted. She knew a bake sale wouldn’t cut it.
“I called my sister and I said, ‘We have to raise $40,000. I can’t make that many cookies!’ She said, ‘How are we going to do this?’ And I said, ‘I don’t know, I don’t know, but we’ll do it.’”
Weidner and her sister, Debbie Crowley, rallied family, friends, neighbors and loved ones to their cause.
“I wasn’t real sure they could do it,” Ring said. “In no time flat, they had $20,000 or $30,000 and I just couldn’t believe it.”
Weidner also won over Michael Crowley (no relation to Debbie Crowley), president of Healthcare Charities, the charitable arm of Eastern Maine Healthcare Systems. He agreed to pitch in and help her with fundraising materials if she continued her grass-roots collection drive.
“I was making a blind-faith commitment that if she could deliver on her end of this that we would find a way and we would deliver on our end,” he said.
Within three months, the group had raised $80,000, twice the original target. An anonymous donor in Hancock County heard about the cause and contributed roughly half of the needed funds, covering the match Healthcare Charities had promised.
The extra money allowed the group to upgrade to a version of the machine that halved treatment times and also could be used on children and teenagers.
In April, Ring became the machine’s first patient. It’s now operating at near capacity — four other patients have the same complication as Ring, called graft-versus-host disease, and another suffers from a form of lymphoma that invades the skin.
“It cuts down on a lot of stress and travel time,” Ring said. “I can get two treatments in less time than it took to get one day of treatment in Boston for probably a quarter of the cost.”
It is Maine’s only “photopheresis” machine. Patients are hooked up to an IV that feeds their blood into the machine, which separates a small amount of white blood cells and treats them with a medicine that activates under exposure to ultraviolet light. The treated cells are then reinfused into the body in a roughly two-hour process that helps to bring the immune system back into balance.
“Essentially it teaches the cells to die properly, so that they don’t have that plaquing of tissue,” said Marcy Black, a registered nurse who administers the treatments.
Without the procedure, also used for other autoimmune disorders and organ transplant rejection, plaque can stiffen patients’ lungs and other organs, L’Italien said.
“If they don’t do this, they’ll die,” he said. “You can only have your skin and your lungs and the lining of your intestine fall apart so much.”
The treatment, available at Boston’s Dana-Farber Cancer Institute and Massachusetts General Hospital, among other institutions, has been around for at least a decade, but more recently became widely available for a greater number of conditions, L’Italien said.
“We started thinking there was one patient in the whole region; now the machine is full,” he said.
There’s talk about raising money for a second photopheresis machine, so other patients in Maine don’t have to make the hours-long trip to Boston.
Weidner, who admits she hates asking people for money, isn’t sure she’ll take part. But she’s happy to see her future brother-in-law feeling better.
“My sister thought I was crazy,” she said, laughing.