ELIOT, Maine — “We are focused on the goal,” was what Jenna Banville said last week as her daughter, Molly, 26, waits for a modified multivisceral transplant in Cleveland.
The wait has lasted more than 18 months. It will be Molly’s second transplant. The first, in November 2015, was for a small and a large intestine, but Molly’s body soon began rejecting the organs, and now she needs new small and large intestines, a stomach, a duodenum and a pancreas. The mother and daughter wait at Transplant House of Cleveland, near the Cleveland Clinic, where the transplant will take place.
Molly wrote her own story on her GoFundMe page, “Molly’s New Gut,” in 2015: “At the very beginning of my fifth grade year, I became very sick. After a week in York Hospital and no one knowing what to do, I was transferred to Maine Medical Center in Portland, Maine.” She said she was diagnosed with inflammatory bowel disease, then indeterminate colitis (either Crohn’s or ulcerative colitis).
At age 11, she had her colon removed and her first ileostomy. In an ileostomy, a piece of the ileum (lowest part of the small intestine) is brought outside the abdominal wall to create a stoma through which digested food passes into an external pouching system.
“After several emergency surgeries, my surgeon realized that I had problems healing, which has caused chronic pain, nausea and kinking of what is left of my intestine,” she wrote. She was then diagnosed with Ehlers-Danlos syndrome.
Ehlers-Danlos syndrome is an inherited collagen disorder. Collagen is a component of connective tissue.
“This unusual combination of health issues has perplexed most of the medical community,” she writes. “Unfortunately, I have had over 25 surgeries that include my stomach, eyes and ankle. I am on intravenous nutrition and have a hard time controlling my pain and nausea.”
Molly has used her experiences in positive ways. She got her certified nurse’s assistant degree while at Marshwood High School and has a degree in pre-nursing from York County Community College.
After 13 years of pain and operations, Molly underwent tests for an intestinal transplant. She did the research herself to find the program at the Cleveland Clinic.
Molly and her mother left for Cleveland in July 2015 for an evaluation, returned home for two weeks, then went back to Cleveland in August 2015 to wait. The clinic wanted her to be ready in Cleveland because, when a donor is found, things happen fast. So, Molly and Jenna moved into Transplant House, a nonprofit facility in Cleveland.
Molly had the 14-hour operation Nov. 6, 2015. The transplant was performed by Dr. Kareem Abu-Elmagd and a team of four. Three days later, Molly had another operation to finalize the transplant. Where most transplants are of the small intestine, Molly received a small and a large intestine – 30 hours of surgery over three days.
Jenna said at the time, “We thank our lucky stars; we thank the donor and the donor’s family. Molly would not be here without them. There’s a lot to be thankful for.”
Molly and Jenna returned to their Bolt Hill Road home for the following Christmas, after more than a year in Cleveland. Molly spent her time baking and catching up with family and friends.
She was also having colonoscopies and biopsies, monitoring her blood pressure and taking care of herself with the support of medications and medical supplies.
Five or six weeks after the first transplant, Molly experienced chronic rejection of the organs. She and Jenna made three trips to Cleveland between January and June 2017, and in July 2017, Molly was listed for the five-organ transplant. They have been waiting in Cleveland ever since.
“As time goes on, Molly is doing a lot of resting. She is coping well given the situation,” Jenna said last week.
Jenna said it is getting harder for Molly physically; after taking a shower, Molly may need a nap. Baking now takes too much energy. Her medications can cause trembling and headaches.
“The longer we wait, it makes sense the body gets more tired,” Jenna said.
Molly takes nourishment with total parenteral nutrition, intravenously, mostly at night, for 12 hours.
“She is very, very brave and courageous. It makes it easy to be her mom,” Jenna said.
The hard part is being away from home. Last Christmas, her step-dad Jeff Smith visited and their Eliot neighbor Leslie Bisognani and her co-workers at Bauer in Exeter sent encouraging notes, gift cards and gifts.
Jenna said Molly is so sick the medical team does not want Jenna working, although she does make jewelry for sale. She and Molly are keeping themselves as healthy and as busy as possible. They both mentor patients and caregivers, and Jenna has created a caregivers’ handbook.
The Transplant House of Cleveland, a nonprofit facility, is not part of the Cleveland Clinic. It provides temporary housing and a supportive community to organ transplant patients and their families. Rent for Molly and Jenna is $75 a day.
They get out occasionally, taking walks around town or sometimes getting tickets to a ball game.
The cost of Molly’s first transplant was $1.2 million. Jenna said medical insurance covers much of the expense. But there are still co-pays and out-of-pocket expenses, medications and the expenses of living in Cleveland. Jenna said the family is $75,000 or more in debt. But they concentrate on the goal of better health for Molly.
“I truly believe we will land on our feet,” Jenna said.
To help, there is fundraising and simple generosity.
Jenna worked at Kittery Eye Associates for eight years before Molly’s first transplant, and Molly worked there in high school. Kittery Eye Associates spearheaded fundraising efforts in 2015 to help the Banville family and still has ongoing fundraising in the office. Optician Valerie Brock said they have themed clothing days, eyeglass raffles and “Molly’s Jar.”
There is Molly’s GoFundMe page, and the Rotary Club of South Berwick/Eliot raises money through “Molly’s Fund.”
Donations also can be sent to the Rotary Club of South Berwick/Eliot at Molly’s Fund, P.O. Box 11, South Berwick, Maine 03908.
In a recent email, Jenna said, “When we first moved into the Transplant House of Cleveland, we knew early on that this was going to be a more powerful experience than first anticipated. We have met many amazing people in all aspects of life and community both at home and in Cleveland. While we continue to wait in hopes of better health for Molly, we want to pay forward the kindnesses shown to us and continue to support those around us including volunteering where we are living and the Cleveland Clinic in a variety of ways. This has been a very humbling experience, which has allowed us to learn and appreciate so much about each other and ourselves as a family and as individuals. We are truly fortunate.”