Stem cell treatment offers hope – and high costs – to retired Farmington teacher with aggressive forms of cancer – Hartford Courant

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

In the shadow of the large 1700s farmhouse where John, a 72-year-old retired math and science teacher at Farmington Public Schools, and his wife, Joan Berry, have been in strict quarantine continuously for more than Two-year-old Barbour and her daughter Gwenn Berry worked to free up space in the home and raise as much as they could through the sale of name-priced kettles, candles, artwork and trinkets .

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

Father and daughter stood far apart as they made their way to the altar, separated by a 10ft pole decorated with flowers and white ribbon that they handcrafted for the altar. help keep a safe distance. Relatives watched from their cars, parked in the driveway with goody bags of food and champagne to keep them far enough away. Berry’s disease and its treatment make every risk a threat to him, from COVID-19 to the common cold to everyday germs around the house.

For two years, the Berrys did nothing but keep John healthy as he battled two types of cancer. They added huge freezers to their porch to limit the frequency of grocery deliveries. They avoided take-out food to steer clear of germs that might be on a pizza box or take-out container. They got their hair cut on their porch and stayed indoors, both of them except for their many trips to Smilow Cancer Hospital at Yale New Haven Hospital.

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

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

But then, in the summer of 2020, he started noticing symptoms again. He went to see his doctor, thinking the non-Hodgkin’s lymphoma had returned.

“He went to get checked out and lo and behold, he was a whole different kind [of cancer]”Jane said.

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

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

For years, John endured expensive and exhausting treatments and chemotherapy and saw very little improvement. He participated in a clinical study of an expensive new targeted biologic agent called Copiktra, which made him eligible for what his doctors knew he needed: a stem cell transplant.

John’s best bet was stem cell transplants, but the COVID-19 pandemic stopped those procedures for everyone except patients who were on the verge of death. A shortage of intensive care beds and spikes in COVID infections have led to delays, pushing the Berrys further and further away from potentially life-saving treatment.

This month, it was finally his turn.

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

John has been at Yale New Haven Hospital since early July preparing for, undergoing and recovering from stem cell transplant. His recovery is going as planned, Joan said, but it’s not an easy road. His wife said it was hard to hear how sick he had been feeling since the operation when she called him every day.

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

This means that all vaccines he has had in the past, including for COVID-19, have been wiped out.

John has to go home this weekend, but his house needs major repairs and preparations to make it safe for his weakened immune system. These projects, essential to keeping John safe, will cost more than $15,000 out of pocket. Additionally, the Berrys were hit with heavy medical bills after years and years of treatment and medication.

They have been fundraising throughout Berry’s treatment, but are reluctant to ask for help. They appreciate all the help they’ve received, but they also want to help John recover.

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 stayed in touch long after he left his class.

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

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

Passionate about the environment, Berry started the school’s Green Team club which quickly became his most popular extracurricular events and spawned such as an environmental musical and trips to the state capital with hundreds of students who called on lawmakers to stand up for the environment under Berry’s leadership. .

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

Gwenn Berry, 32, grew up going to school in Farmington with her sister, Rebecca Berry, as their father taught and ran clubs at school.

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

The youngest daughter said her father’s passion and drive to fight the good fight is infectious. He influenced her and her family, and so many of her 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 quest for a better world,” she said.

But even the most energetic and relentless people sometimes need help.

Unlike any other illness, mishap or injury, the Berrys can’t accept much help in their situation. They cannot accept offers from friends to clean their house or help with errands or chores. They cannot accept cookouts or dinner deliveries. John’s condition is so precarious that his exposure to the outside world is limited to what is strictly necessary.

Still, Joan said they had “experienced kindnesses to the front, to the left and to the sides” from people throughout their community.

The best way for people to help is to donate for the “astronomical costs,” as Barbour put it, of their medical, security and sanitation needs. The Berrys recently learned that the cost of Copiktra’s prescriptions had increased, charging $4,000 per month in their personal co-pay.

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

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Additionally, Barbour said the family was caught off guard with needed repairs and sanitizing at the home while struggling with medical bills.

“He can’t go home unless it’s a safe and controlled environment. Any [other conditions] are simply the worst possible thing for someone who doesn’t have an immune system. And some of them are total unforeseen expenses,” she said.

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

“We were all in a bubble in 2020, but for us we just had to increase it. We have really been in our house. Other than hospitals and drive-thrus to get our shots and boosters, we’ve been in the house since March 12, 2020,” Joan said.

John loves playing blues music, his wife said, and used to host an annual “Bluesberry Coffee House” with his daughters before the pandemic. John and Joan hope the sounds of singing and guitar will once again fill the house; that visits with Rebecca Berry and their granddaughter Mattea Berry in Illinois will be safe enough to resume; and that they will one day be able to return to their favorite place, Quebec, where they have vacationed every year since they honeymooned in the city 24 years ago.

John should be home from the hospital, new stem cells and all, this weekend.

Berrys GoFundMe page can be found at gofundme.com/f/help-for-john-and-joan. The family also asks that people consider donating to be the match to help more families like them.

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