Originally published for The Sun Chronicle on March 9, 2017.
NORTH ATTLEBORO — Carolina Haggarty left a mark everywhere she went.
In life, the 41-year-old North Attleboro resident was fast friends with all she met, bringing different groups of people together seamlessly and parading around school events, tennis tournaments and charity fundraisers as the life of the party — always with a smile on her face and a hand outstretched to others.
In death, too, that spirit continues. Carolina was diagnosed with gastrointestinal cancer in 2014 and given six months to live. But, a fighter, she allowed for experimental treatments that have now changed the way doctors at Massachusetts General Hospital are considering the disease. Researchers say discoveries in Carolina’s case have propelled them in an entirely different direction and have already helped others outlast the disease, if only for just a little while longer.
Carolina, they said, has again has made her mark.
And family and friends hope to see that continue.
In one year, her husband Kristofer, 45, has raised more than $80,000 to fund promising research that is starting to catch up with gastric cancers — in part, he says, to repay the generosity and comfort the hospital showed in Carolina’s final months.
The diagnosis was stunning, he said, but the decision to go with treatment at MGH came after Carolina attended several consults with other Boston-based hospitals. When Dr. Eunice Kwak called Carolina at home to follow up and see if she was ready to move forward with treatment, his wife asked one thing.
“I need to know you’re going to fight for me.”
Kwak was the only one willing to make that promise.
And she did.
They began a clinical trial, but within a few weeks they could tell things were not looking good when one researcher suggested the team switch paths and try a different round of treatment. That treatment, however, came with a $10,000 price tag not covered under insurance.
That’s where the fighting came in. Doctors at the hospital worked with the family’s insurance company to get the drug paid for, and within weeks, Carolina started improving — soon presenting new signs of research the doctors hadn’t yet considered.
Researchers at MGH are developing ways to personalize cancer therapy for every patient in the hospital. They perform detailed molecular therapy to pinpoint specific mutations and use that information to provide personalized care — which they hope, one day, will abolish the cancer for good.
The work has been ongoing, but was taken to a new level after Carolina came through the program, Director Ryan Corcoran of the Tucker Gosnell Cancer for Gastrointestinal Cancers at MGH said.
In gastrointestinal cancers, researchers know that a mutation known as gene amplification accelerates cell growth, which in turn drives one’s cancer. In the past, they’ve used drugs to target the amplified genes and gotten good results. But that didn’t work in Carolina’s case.
Instead, the specific treatment was making her sicker — and doctors were unsure why. In further testing they found that, while they had once believed amplification was only ever limited to one of two genes, Carolina’s case showed amplification of both genes. For the first time ever, with her OK, they treated both genes with a combination of two drugs with mild success. The study indicated that targeting one or more genes could potentially be effective in slowing the growth of the cancer.
“Her case spurred us to look at that question,” Corcoran said. “Before this we didn’t think it was possible. Now we know that it’s actually very common, about 40 percent of patients will have gene amplification in both genes. That wasn’t yet appreciated by the field, but it laid the ground work for many future trials.”
Carolina died in December 2014, but even after her death, doctors fought alongside her family, clearing massive bills that had racked up from the experimental tests.
“I told them, ‘I’m going to fundraise all of that money back for you,’” Kristofer said.
Working with a group of Carolina’s friends, he set up a mixed doubles tennis tournament that raised $16,000 in its first year. He moved forward with steps to make Siempre Carolina — or “forever Carolina” — a non-profit and last fall raised $55,000 in a gala event designed to celebrate Carolina’s life.
And, a second annual spring tennis tournament in the works has already sold out.
For Kristofer, the non-profit has become a way to keep Carolina’s spirit alive.
“She is always in the room,” he said. “We’ve always had such great memories with her best friends, and when we all get together we remember that — but we’re also making new memories together. The gala was great. The last time that many of us were all together was at her funeral. We needed a better memory to replace that. She was always the life of the party and this was a chance to celebrate that — this time it was in honor of, not in memory of. That was our focus.
“I know that the foundation is helping people and hopefully they’ll continue that,” he said. “Hearing examples on how her treatment has helped others live longer — I’m really hopeful. If we get the right funding and the right people working on this, we can find a cure.”
On their end, the funds have become a driving force for experimental research, Corcoran said.
“While many great foundations and federal agencies support cancer research, a lot of times cutting edge or out-of-the-box ideas that have the potential to be transformative but are risky — those are harder to obtain funding for from traditional avenues,” he said. “This is high-risk but high-reward work. We really do rely on philanthropy as a growing source to fund early stage projects that could lead to breakthroughs in the field.”
The program is experimenting from patient-grown tumor models so they can do direct tests and see how different cancer therapies might play out, patient to patient. They have developed non-invasive blood tests that allow doctors to duplicate the tumor’s DNA and track new mutations in real-time, giving them a chance to get ahead of the cancer and develop new plans as it starts to progress.
And, they carry the name of a cutting-edge patient throughout it all.
“The name of the organization speaks to the cause, I think,” Corcoran said. “Siempre Carolina — she is always going to have an impact on patients for years to come. I think that’s remarkable.”
To donate: www.siemprecarolina.org.