Stem cell treatment offers hope — and high costs — for retired Farmington teacher with aggressive forms of cancer

On a sunny Sunday afternoon, Kate Barbour stood in her ex-husband John Berry’s front yard in Farmington, helping her blended family sell off some of their belongings to raise money for his expensive medical care for non-Hodgkin lymphoma and gamma-delta T-cell lymphoma, a rare, aggressive form of cancer that led to a stem cell transplant.

Shadowed by the large 1700s farmhouse where John, a 72-year-old retired math and science teacher in Farmington Public Schools, and his wife, Joan Berry, have been in a strict nonstop quarantine for more than two years, Barbour and daughter Gwenn Berry worked to clear out space in the home and raise as much as they could from the name-your-own-price sale of tea kettles, candles, artwork and knick-knacks.

On that same lawn two years earlier, when the garden was covered in winter frost, Gwenn Berry joined her parents, her in-laws and just two close friends for a wedding ceremony that was much smaller and sooner than she had planned so that she could walk down the aisle with her father amidst his increasing illness and the COVID-19 pandemic.

The father and daughter stood far apart as they walked toward the altar, separated by a 10-foot pole decorated with flowers and white ribbon that they handcrafted to help them keep a safe distance. Loved ones looked on from their cars, parked in the driveway with goodie bags of food and champagne to keep them far enough away. Berry’s illness, and the treatment for it, make every risk more of a threat for him, from COVID-19 to the common cold to everyday germs in the house.

For two years, the Berrys have done nothing but keep John healthy as he battles two types of cancer. They’ve added massive freezers to their porch to limit the frequency of grocery deliveries. They’ve avoided takeout to keep away from any germs that might be on a pizza box or to-go container. They’ve had haircuts done on their porch, and they’ve stayed inside, the two of them, except for their many trips to the Smilow Cancer Hospital at Yale New Haven Hospital.

Now, there is a light at the end of the tunnel, but it comes with a cost.

A double diagnosis

Berry was diagnosed in 2013 with non-Hodgkin lymphoma. After two years of aggressive treatment, he beat the cancer in 2015.

But then, in the summer of 2020, he started to notice symptoms again. He went to his doctor, thinking the non-Hodgkin lymphoma was back.

“He went and got checked and lo and behold, he had a whole other kind [of cancer],” Joan said.

Berry was diagnosed with gamma-delta T-cell lymphoma. He underwent extensive and expensive chemotherapy, and then things got worse.

“In the middle of all that treatment and waiting for the treatment he needed that was put off by the pandemic, his old cancer came back. He had to then be treated for that while undergoing his other treatments in the midst of the pandemic,” said Joan.

For years, John has undergone costly and exhausting treatments and chemotherapy and has seen very little improvement. He became part of a clinical study for an expensive and new targeted biological agent called Copiktra, which allowed him to be eligible for what his doctors knew he needed: a stem cell transplant.

John’s best bet was the stem-cell transplant, but the COVID-19 pandemic stopped those procedures for everyone except patients who were on the brink of death. A shortage in ICU beds and spikes in COVID infections caused delays, moving the Berrys further and further away from the potentially life-saving treatment.

This month, it was finally his turn.

They waited for a donor — which came eventually in the form of a 48-year-old man from Germany. Then they waited again for the procedure to be safe for him. On July 8, it finally happened.

John has been at Yale New Haven Hospital since the beginning of July to prepare, undergo and recover from the stem-cell transplant. His recovery is going as planned, said Joan, but isn’t an easy road. His wife said it has been hard to hear how sick he’s been feeling since the surgery when she calls him every day.

“What you have to do is purposely destroy your entire immune system in order to give you stem cells and basically build a new one from scratch,” said Joan, adding that she tried to explain the complicated process like she would have to her fourth-grade students when she was a teacher.

That means all vaccines he’s had in the past, including for COVID-19, were wiped out.

John is scheduled to come home this weekend, but his home needs significant repairs and preparations to make it safe for his weakened immune system. Those projects, essential to keeping John safe, will cost more than $15,000 out of pocket. In addition, the Berrys have been hit with hefty medical bills from years and years of treatments and medications.

They’ve done some fundraising throughout Berry’s treatment, but are hesitant to ask for help. They are appreciative of all the help they have gotten, but they also want to help John recover.

A beloved teacher

John, a former graphic designer, taught math and science at Irving A. Robbins Middle School where he was revered by his students and their families who have kept in contact long after they left his classroom.

Barbour said John would pour over his lesson plans for hours and find unique, entertaining ways to engage his students, like playing the guitar in class.

“He is just so incredibly dedicated,” said Barbour, “People all around town know him. He’s just a warm, giving, wonderful person.”

With a passion for the environment, Berry launched the school’s Green Team club which quickly became its most popular extracurricular and spawned events like a musical about the environment and trips to the state capitol with hundreds of students who called on legislators for environmental advocacy under Berry’s lead.

Berry met Joan, a fourth-grade teacher in Farmington, through their jobs and proposed in her classroom as her students cheered for their engagement, with the news announced over the school’s intercom system.

Gwenn Berry, 32, grew up going to school in Farmington with her sister, Rebecca Berry, as their dad taught and led clubs in the school.

“To sum up my dad, he’s a force,” she said. “He is an incredibly passionate person about a lot of causes that are very dear to him, especially the environment and justice for all. He definitely wears his heart on his sleeve,” she said.

The youngest daughter said that her father’s passion and drive to fight the good fight is infectious. He’s influenced her and her family, along with so many of his students, to make the world a better place.

“He’s relentless, he’s relentless in what he’s going through right now and he’s relentless in his pursuit of a better world,” she said.

But even the most forceful, relentless of people sometimes need help.

A helping hand

Unlike another illness, rough patch or injury, the Berrys can’t accept much help in their situation. They can’t take friends up on their offers to clean their house or help run errands or do chores. They can’t accept casseroles or dinner deliveries. John’s condition is so precarious that their exposure to the outside world is limited to the absolute necessities.

Still, Joan said they’ve “experienced kindnesses front, left and sideways” from people all throughout their community.

The best way for people to help is to donate to the “astronomical costs,” as Barbour put it, of his medical care, safety and sanitization needs. The Berrys learned recently that the cost of the Copiktra prescriptions had risen, making their out-of-pocket copay $4,000 a month.

“With this and many other expenses and challenges, they face an overwhelming emotional and financial burden,” Joan’s brother, Ad Campbell, wrote on their GoFundMe page.

Additionally, Barbour said the family was caught off guard by needed home repairs and sanitization while grappling with the medical costs.

“He can’t come home unless it’s a safe, controlled environment. Any [other conditions] are just the worst possible thing for someone that has no immune system. And some of these are total blindside unexpected expenses,” she said.

The Berrys and Barbours are hoping that hours of work and thousands of dollars will get the home ready to welcome John back soon for his long, careful recovery. Joan said that after two years in what she calls “the bubble,” they hope to get back to living their lives this year or next.

“We were all in a bubble in 2020, but for us, we had to just ratchet it up. We truly have been in our house. Other than hospitals and doing drive-thru to get our vaccines and boosters, we’ve been in the house since March 12 2020,” Joan said.

John loves to play blues music, his wife said, and used to host an annual “Bluesberry Coffee House” with his daughters before the pandemic. John and Joan are hopeful the sounds of singing and guitar-playing will fill the home again; that visits with Rebecca Berry and their granddaughter Mattea Berry in Illinois will be safe enough to resume; and that they can someday return to their favorite place, Quebec, where they’ve vacationed every year since they spent their honeymoon in the city 24 years ago.

John is expected to come home from the hospital, new stem cells and all, this weekend.

The Berrys’ GoFundMe page can be found at The family also asks that people consider donating to Be The Match to help more families like themselves.