By Kirk Johannesen
For the Daily Journal
Walt Disney World in Florida is the most popular theme park worldwide with more than 52 million visitors annually. Among its regulars is Jane Ellen Watkins of Columbus.
Watkins, who said she’s “a little addicted to Disney,” estimated that she, her husband and teenage daughter have visited more than 15 times. It’s the most recent trip, however, that’s likely to be the most memorable for two reasons.
Because it was unexpected. And because it’s her last.
Watkins, 43, is dying of cancer.
Through the generosity of a friend and his family, and with the help of Our Hospice of South Central Indiana, Watkins enjoyed one more time touring the Magic Kingdom, mingling with Mickey Mouse and cruising on the “It’s A Small World” boat ride.
A family that wishes to remain anonymous paid for the trip and accompanied Jane Ellen and Phillip Watkins, and their daughter Elisa, July 6 to 10. Our Hospice of South Central Indiana coordinated hospice services for Jane Ellen with another hospice provider located near Disney World to ensure there would be no lapses in her care.
“It’s hard to take offerings like that, but at this point in the game we wouldn’t have been able to go. We wouldn’t have been able to get down there and do everything. It was very much appreciated. It was more generous than we thought a family should be to us. But we had a good time. It was fun,” Jane Ellen Watkins said.
In February 2013, Jane Ellen Watkins thought she had food poisoning when she went to the hospital. Tests first indicated that her hemoglobin count was low, but then an endoscopy revealed she had a tumor in the lining of her stomach.“If there were a good cancer,” Jane Ellen said after talking with her doctor, “this was not one of them.”
That meant Jane Ellen and her family coming to grips with her diagnosis.
“Originally it was disbelief, and then you see the pictures they took on the endoscope and reality sets in,” Phillip said.
Jane Ellen started chemotherapy that March, and three months later in June she had surgery to remove her stomach. The surgery — called a gastrectomy — connects the small intestine to the esophagus. The after effect was that she couldn’t absorb nutrients as well as she should. After the surgery, three more rounds of chemotherapy were needed.
The rest of 2013 went well, Jane Ellen Watkins said, noting that by August she was eating pretty much whatever she wanted — in smaller amounts and although she often felt nauseous.
Things were going well in 2014 until October, when doctors discovered tumors on her ovaries — a common type that comes from the gastric cancer, Jane Ellen Watkins said.
She asked doctors to delay the surgery to remove her ovaries just long enough so that she and Elisa could travel to Disney World to participate in a 10-mile run during the start of her daughter’s fall break.
The surgery was performed at the end of the break, with the doctors removing both ovaries. However, in that short amount of time the tumors had grown to the size of a grapefruit on one ovary and the size of a tennis ball on the other.
Jane Ellen Watkins started a trial drug in December 2014 and continued it throughout 2015. She said she experienced no major side effects.
The hardest part during that time, Jane Ellen said, was having to leave her job as a special education teacher in Johnson County in the spring of 2015.
She began a second round of the trial drug this year. In March she had surgery to insert a drainage tube in her large intestine because her colon is blocked. Jane Ellen no longer eats solid food, instead receiving nutrients intravenously. However, she eats lots of Popsicles and loves Italian ice treats.
In May, though, the family received difficult news. Jane Ellen’s surgeon told her she had eight weeks to six months to live. The cancer had grown in her intestines and created more blockages, Phillip said.
Our Hospice of South Central Indiana started providing care to Jane Ellen in mid-June. Nurses and social workers come to her house three times per week to check on her central line and port, record her vital statistics, bring supplies, change dressings and help manage her pain.
Jane Ellen said she never expected to be in this situation at her age. Plans for the future are much different.
“We just go day by day,” she said.
Jane Ellen said her short-term goal is celebrating Elisa’s 19th birthday in August and getting her off to Ball State University for her freshman year.
Passion for Disney
The family trips to Disney World started when Elisa was 3. While Phillip enjoys going because the trips make Jane Ellen happy, it’s her passion for Disney that has made them an annual ritual.“She’d live there if they’d let her,” Phillip said.
“You forget that you have bills and forget that you have a job and you have responsibilities. You just walk up and down Main Street and see Mickey Mouse,” said Jane Ellen, who has above her right ankle a tattoo of the American flag inside the outline of Mickey Mouse’s ears and head.
The Watkins’ home reflects the passion for what Walt Disney created. Photos from previous trips are easily found throughout, as are souvenirs purchased during visits. A framed drawing of a sorcerer Mickey Mouse with a personal message to Jane rests on a mantle in the family room.
The family also uses a small Mickey Mouse figurine for a family game of “Hidden Mickey” in which one person hides the figurine — although it has to be somewhat visible — and the others look for it.
A boy who is Elisa’s age and close to the Watkinses knew well of both Jane Ellen’s love for Disney and her battle with cancer. He would routinely text Elisa after Jane Ellen had a surgery to check on how her mother was doing, Jane Ellen said.“He’s just a good kid,” Jane Ellen said.
One day he came over and told Jane Ellen he had decided he was going to do something for the family. He wanted to include them to partake in a trip overseas, she said. However, she explained that she couldn’t be that far away.
“He showed up at the house a few days later and said, ‘Pick a date for Disney; we’re going to Disney.’ I said, ‘You have your mom text me if you’re serious,’” Jane Ellen said.
Because of Jane Ellen’s cancer, traveling to Disney wouldn’t be as simple as it sounded. She knew she would need hospice care while there. That’s where Our Hospice of South Central Indiana stepped in.
Our Hospice partnered with Cornerstone Hospice and Palliative Care in Orlando to help Jane Ellen during her trip to Disney, said Suzie Singer, manager of marketing and planning for the hospice in Columbus. Our Hospice also worked with a medical company to ensure Jane Ellen had enough supplies for the time that would be spent in Florida.
“I had no idea that hospice could help plan something like that,” Jane Ellen said.
The arrangement with another hospice provider is called a travel contract. Our Hospice is licensed to operate in only certain counties, so when its patients travel to locations it doesn’t serve a travel contract ensures care is provided. Our Hospice does 10 to 12 travel contracts with other hospices per year, and sees an increase in the summer, Singer said.
“I was amazed that within three hours of getting into our room the hospice from down there was there,” Jane Ellen said.
With travel arrangements and hospice care taken care of, the Watkinses could focus on having a fun time. The family that accompanied them was generous about accommodating Jane Ellen’s wishes each day, she said, including time for her to go back to the hotel and rest. They spent a day at Epcot Center, strolled and saw Disney characters, watched fireworks and rode rides. While Jane Ellen only rode the “It’s A Small World” boat, Elisa rode the Space Mountain roller coaster seven times in a row, and Phillip and Elisa rode the Barnstormer kids roller coaster.
A highlight of the trip, Jane Ellen said, was watching Elisa interact with the children from the other family.
“Just seeing her get to do what other 18-year-olds do, and not running to get bandages or medicine or sitting at the hospital watching her mom lay in bed,” Jane Ellen said.
Her mother’s journey has given Elisa new perspective.
“If you had told me four years ago that my mom would have Stage 4 stomach cancer and that a family friend would pay for us to go to Disney I would have thought you were crazy. I’ve worked at Indian Creek Baptist Camp (in southern Indiana) all summer and haven’t seen my mom much, so the four days at Disney were a great getaway,” Elisa said.
“I’ve been blessed in so many different ways. My faith has grown, I’ve learned a lot of medical procedures and vocabulary (even though I didn’t always want to know), and I’ve had great mentors, Becky Stephens and Greg Perkinson, to help me through the hard times,” she added.
The Watkinses enjoyed spending time together with the family and getting to know it much better. Jane Ellen said that has been one of the good things to come out of her cancer battle.
She said it’s still hard to believe how generous the family was in paying for the trip.
“You can’t just send a thank-you card for something like that,” Jane Ellen said.
She’s got something better in mind — making the family a Disney scrapbook album.