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Scarlett Carlson 2, Laura Bordson and Boston Carlson, 3, sit with Jake Carlson of Hermantown, who is undergoing treatment for desmoplastic small round cell tumors, a form of soft-tissue sarcoma. He had major surgery recently. He has lost a lot of weight and still faces an uphill climb. Only 200 cases of this rare cancer have been identified in the world. (Clint Austin / caustin@duluthnews.com)
Scarlett Carlson 2, Laura Bordson and Boston Carlson, 3, sit with Jake Carlson of Hermantown, who is undergoing treatment for desmoplastic small round cell tumors, a form of soft-tissue sarcoma. He had major surgery recently. He has lost a lot of weight and still faces an uphill climb. Only 200 cases of this rare cancer have been identified in the world. (Clint Austin / caustin@duluthnews.com)

Hermantown man on an uphill climb toward healing

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news Duluth, 55802

Duluth Minnesota 424 W. First St. 55802

For Jake Carlson, reaching the light at the end of the tunnel revealed a sharp uphill climb.

“For two years, we’ve been hearing about how this surgery was like the light at the end of the tunnel,” said Terry Carlson, mother of the Hermantown man who is battling a rare form of cancer. “And then you finally get there, and you think: Surgery, and now it’s going to be all better. And it’s not. There’s still a long ways to go.”

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When the News Tribune first profiled Jake Carlson in April 2013, it had been nearly a year since his diagnosis with desmoplastic small round cell tumors, a form of soft-tissue sarcoma that hadn’t been identified until 1989. Only 200 people had been diagnosed since, most of them adolescent and young adult males. Carlson is 29.

On Wednesday, Carlson was sitting at a table in the backyard of his parents’ home along with his partner, Laura Bordson; their children, Boston, 3½, and Scarlett, 2; and Terry Carlson. The former Northland College hockey player, who was wearing a U.S. soccer jersey, looked and sounded fragile, and understandably so.

It was exactly two months since that surgery that was supposed to be the light at the end of the tunnel. In that time, his weight had dropped from 155 — about his normal playing weight, and the weight he had maintained through months of chemotherapy — to 109.

‘I can’t be with them’

The past two months have been, in many ways, the toughest part of the journey for Carlson. His weight loss, largely caused by dehydration, has left him unable to function as well as he could even when he was receiving chemo.

That has left him frustrated.

“I want to get back with the kids,” Jake Carlson said, as Boston and Scarlett played nearby. “That’s the hardest part is I can’t be with them … right now because I don’t have enough energy.”

Carlson’s journey began on June 28, 2012. He was working his landscaping job when he experienced stabbing pains in has abdomen. He and Bordson assumed it was appendicitis. But a CT scan revealed a mass of 11 tumors in the abdomen. That was followed by the diagnosis of the rare form of cancer and the prognosis that he might have only two months to live without extreme treatment.

At the time, Carlson and family members declined to look at scans of the tumors. More recently, with much of the cancer eliminated, they agreed to Essentia Health oncologist Dr. Jonathan Sande’s offer to take a look.

They were glad they hadn’t looked before, Terry Carlson said.

“It was like the size of a newborn baby,” she said.

Added Bordson: “It stretched from hip to hip.”

By this April, chemo had reduced it by 90 percent.

‘Different ideas’ at Mayo

Dr. Brenda Weigel, a pediatric oncologist at the University of Minnesota Amplatz Children’s Hospital who had treated 24 of the previous known cases of desmoplastic small round cell tumor,  had planned for surgery to remove the rest to take place at the U of M.

But the lone surgeon who could perform the operation left the university, so the case was referred to the Mayo Clinic in Rochester, Minn. Carlson and his loved ones arrived a week ahead of the scheduled surgery but weren’t told until a day ahead of time whether it actually would take place. They were told it would take 4½ to 5 hours; it actually took 10. The surgeon removed his large intestine, gall bladder, spleen, the lower portion of his diaphragm and a portion of his lungs.

A week after he was released, he was taken back to Mayo by ambulance because the extent of his dehydration led doctors to suspect a leakage.

The family was disenchanted with Mayo.

“The thing is, they all have different ideas,” Jake Carlson said.

Bordson chuckled. “To put it kindly,” she added. “Too many people; too many opinions.”

All of the cancer was removed from his abdomen, but a much smaller amount remains in his pleura, the lining of the lungs. That will require more chemo, followed by more surgery. The next operation can and will be performed in Duluth, Jake Carlson said.

After that, he’ll face radiation treatments. Finally, he’ll receive a transplant of his own stem cells — he had them harvested early in the process — to promote healing.

But there’s no schedule for all of that.

“A day at a time,” Bordson explained.

‘A great distraction’

Since surgery, dehydration has been Carlson’s main problem. He’s also been beset with several infections, including thrush, a yeast infection of the mouth.

But, Carlson said he is feeling better than at any time since before his surgery. He has resumed exercising, lifting light weights.

He and Bordson, who have been together more than four years, became engaged in May 2013. Both grew up in Hermantown, and both sets of families have been supportive, they say. Their lively children are a “great distraction,” Bordson said.

“They keep our minds off the disease,” she said. “We just kind of live through them.”

Financially, they’ve been hit hard. Health insurance has helped, along with a fundraiser attended by almost a thousand people. Particularly stressful: Carlson’s student loans. He was diagnosed one month after graduating from college and has run out of forbearance options, Terry Carlson said. She and her husband co-signed the loans and are being pressured to come up with payments.

But the family is grateful for the help they’ve already received.

“We’re so thankful for everybody,” Terry Carlson said. “There are people that don’t even know Jake that have included him in prayer chains and people sending cards and notes and saying they’re praying for him. My employers let me have time to be with them. … Stuff like that means a lot to us.”

Want to help?

Donations to help Jake Carlson and his family are accepted to the Boston & Scarlett Carlson Fund at Hermantown Federal Credit Union.

 

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