Three years ago, JP Kealy was lifting weights and hurt his back. But it was more than just your typical pain, so he went to an orthopedist, who ordered an MRI.
What they found was a surprise. His bones were untypically brittle for a 48-year-old man. Blood work confirmed he had multiple myeloma, a cancer formed by malignant plasma cells.
Although the diagnosis on April 21, 2014, was devastating, Kealy’s wife, Annamarie, said the couple consider themselves lucky.
“Most people are not diagnosed until the disease has progressed and they are in kidney failure,” she said at the couple’s home in Wilton. “We had the gift of time, spending the last three years waiting and watching.”
Now they are fighting the disease head-on from two fronts: personally and publicly. Next March, JP and Annamarie will climb to Mt. Everest Base Camp in the Himalayas in a fund-raising program for the Multiple Myeloma Research Foundation called Moving Mountains for Myeloma.
The point of the expedition, Annamarie said, is to show that “patients can climb mountains” literally and figuratively.
Multiple myeloma is a very complicated cancer, she said, and when Kealy was diagnosed they saw four doctors and got four opinions for going forward. Kealy received monthly IV treatments to strengthen his bones, but last year his numbers reached a point where he needed chemotherapy. He recently completed a six-month course of drugs at Stamford Hospital, which he tolerated very well.
But that is not all Kealy needs.
“A stem cell transplant is the best chance for remission,” Annamarie said, and so on April 17 they will go to Mount Sinai Hospital for a transplant.
Doctors have already collected 20 million stem cells from Kealy through a process that took four eight-hour days. Kealy lay with his arms straight out and with one needle “as big as a turkey baster,” Annamarie said, that drew his blood. The stem cells were then collected and the rest of his blood was returned through another needle into his other arm.
The stem cells — enough for four treatments — are now frozen. They can last in that state 10 to 15 years.
When he goes to Mount Sinai, Kealy will be given a high-dose chemotherapy treatment to reduce his immunity to zero. Then his stem cells will be thawed and returned.
He will remain in a sterile environment for three weeks, with Annamarie as a caregiver, before returning home for two to three months. When home, he will be on an anti-microbial diet that Annamaria must prepare for him. That means, among other things, no raw fruits or vegetables — except fruits with thick skins like bananas and oranges — or red meat.
He will also need all new immunizations.
Since there is no cure as yet, the goal is complete remission, but for how long is not known.
When the Kealys first learned of his diagnosis they connected with the Multiple Myeloma Research Foundation (themmrf.org), formed in New Canaan in 1998 by twin sisters Kathy Giusti and Karen Andrews soon after Giusti was diagnosed. She was given two years to live, Annamarie said, but that was almost 20 years ago.
“The support we have received from them is incredible,” Annamarie said. For the last three years, the couple has participated in the organization’s fund-raising 5K walk, but they wanted to do more.
“Last year they started Moving Mountains and the first trip was to Mt. Kilimanjaro,” Annamarie said. Typically, only one person per family is accepted for an expedition, but as Annamarie said, “I’ve been with him throughout. It’s been such a life-changing experience. Our motto has always been JP Strong.”
She wrote a letter to the organization explaining why they should go as a patient-caregiver team, and they were accepted. Because the expedition is a fund-raiser, with proceeds going to research, they were required to raise $10,000. In seven weeks they have raised more than $25,000. To contribute, visit https://endurance.themmrf.org/2018Everest/jpstrong.
“For me, it’s something we’re doing that’s proactive. We have four kids. I want them to see they can be resilient,” she said. Their children are Tommy, a junior at the College of William and Mary; Brendan, a student at Dickinson College; Jake, a senior at Fairfield Prep; and Lily, a sophomore at Wilton High School.
Assuming he will be well enough by then, the couple will go on a training climb in Colorado in July, where they will surmount a 14,000-foot peak and meet their fellow travelers.
Next March, they will fly into Kathmandu and then to Lukla, Nepal. They will stay at Nepalese teahouses to get acclimated, and then with yaks to carry their gear and Sherpas to guide them, the group of 16 doctors, patients and caregiver will ascent to Mt. Everest Base Camp at 18,519 feet in altitude.
“It’s a small group of people, but the impact will be huge,” she said. They will carry a banner proclaiming the Bennett Cancer Center at Stamford Hospital.
Kealy said he wasn’t surprised at his wife’s plan for them to participate in the climb.
“I wasn’t surprised she did it,” he said. “There’s no talking her out of it. I’m glad we’re doing it together.”
Annamarie and JP aren’t the only Kealys working to support the MMRF. Daughter Lily will hold a bake sale at the Village Market on Sunday, April 23. Last year she raised more than $1,000 for the organization.
“This wasn’t the master plan,” Annamarie admitted, but added there has been an upside. “There’s been a lot of good people who’ve come out of the woodwork. We are so positive because we have such a team rallying behind us.”