The scientist loves posting her test results — data revealing the faulty immune system is vanishing. The scientist even carries footage of her latest scope procedure — video displaying an intestine finally free of ulcers.
But this scientist is a patient. And the patient, Elise Elholm, a clinical researcher from Norway, also enjoys gazing at something beyond stark lab findings. Something that shows her bone marrow transplant is quelling the Crohn’s disease that dominated her existence for 28 years. Something she now sees each day.
Her lunch plate.
There, Elholm, 46, can sample an array of foods she hasn’t been able to digest without great pain for decades.
“I can eat nuts!” Elholm said recently amid a series of follow-up exams at Seattle Cancer Care Alliance, the treatment arm of Fred Hutchinson Cancer Research Center, where she received donor stem cells in June 2014. “And I ate a whole banana! It was good. It was so good.
“Before, the food was talking at me, like: ‘Are you really going to want to eat me today?’ she said. “I’ve got my life back.”
Elholm, who lives outside Oslo with her husband and three children, just passed her one-year anniversary in a Fred Hutch trial examining whether a bone marrow transplant can cure Crohn’s disease in its most severe form. She is the canary in the coal mine, the study subject whose future health status will light the scientific path for Hutch researchers who hypothesize that T-cell infusions may chase Crohn’s from the body.
“The book is not written yet. This is chapter two. And the story of Elise will tell us where we are going to go with this,” said Dr. George McDonald, who is co-leading the Crohn’s Allogeneic Transplant Study, or CATS, with colleague Dr. George Georges.
Indeed, Elholm’s most recent evaluations at Fred Hutch are promising and seem to corroborate what she says she’s feeling inside — and seeing on her dinner table.
“She feels that, essentially, her Crohn’s disease has gone into remission,” Georges said. “It’s because of her new donor immune system. Those [donor] cells have engrafted. And with a new immune system, the Crohn’s disease appears to have gone away.”
Some 700,000 Americans are believed to have Crohn’s, a chronic disorder in which the body’s immune response attacks its own digestive tract. Flare-ups can cause diarrhea, abdominal cramps, fatigue, and appetite loss. Most patients with Crohn's can be managed with medications. For a small share of patients, though, the disease is poorly responsive even to the latest drugs.
Elholm long suffered with a version of Crohn’s so extreme, she ultimately was unable to work as a researcher, join her family on hikes, or do mundane chores like laundry. Vomiting, fevers, weariness and ongoing pain from intestinal strictures marked her days.
Out of medical options
For long periods, she survived on liquid nourishment. She endured three surgeries to remove diseased intestinal sections, leaving barely enough to absorb nutrients. In 2013, doctors in Norway concluded that every conventional medicine had failed.
But she was just sick enough to qualify for the CATS protocol, funded by the Broad Medical Research Program at the Crohn's & Colitis Foundation of America. In 2014, she and her husband and their youngest child traveled more than 4,000 miles to Seattle where Elholm received bone marrow donated by a stranger, a 26-year-old man.
One year after her transplant, tests of her blood and gut tissue show the donor’s T cells have replaced about 90 percent of Elholm’s immune cells. Her body, the Hutch doctors say, also contains no evidence of chronic graft-vs.-host disease, an often-debilitating illness where the donor cells chew up the healthy cells of the patient.
“Our cross-your-fingers hope is that [the donor-cell percentage] will become 92, 95, 99,” McDonald said. “The donor cells reject the host cells. And when it becomes 99 percent donor, our expectation is all the evidence of Crohn’s will go away.”
So far, the doctors are shelving final judgment. Their careful stance is fueled by a brief Crohn’s relapse Elholm experienced in December. Hutch researchers suspect that enough of her old immune cells were lingering to trigger a flare-up of symptoms. In fact, a biopsy taken from her gut at that time showed a 50-50 split between donor cells and Elholm’s own immune cells.
To treat Elholm, her doctors in Seattle and Oslo collaborated and agreed to take a counterintuitive route — removing her from all immune-suppression drugs. Normally, those medications are used to calm Crohn’s. But in Elholm’s unique case, the absence of those drugs allowed the donor cells to regain traction in her body and soothe the resurgent disease.
A lone patient will show doctors the way forward
“We’ve suspended enrollment in the [CATS] protocol as we watch to see how Elise’s disease behaves itself,” McDonald said. “If she keeps relapsing into disease because we can’t solve the problem of recurrent host cells, I can’t offer that as a treatment for new patients. The protocol is in cold storage until we see how she does.”
“When I had the relapse,” Elholm said, “it was actually worse for the doctors [in Seattle] than it was for me. I was like: This is going to be OK. I can do this.”
She recalled that stretch as her husband, Tor, listened intently at an outdoor lunch table on the Fred Hutch campus. “My cells are pretty stubborn, just like me. They still want to make their point.”
“So, if that small percentage of cells should give you a little relapse again, that’s OK, right?” Tor asked.
“Oh yeah, I know how to be sick,” she replied.
Beyond citing the latest lab results, Elholm’s doctors and nurses quietly recognize the love story at the heart of her steady recovery.
They know the deep sacrifices the couple made to reside in Seattle for nearly five months to get her transplant — a procedure that carries about a 10 percent chance of death. They’ve heard how Elise and Tor together calculated her survival odds, and how they agreed the Hutch trial was fully worth the risks. They’ve seen their teamwork. And they’ve witnessed a husband and wife now basking in hope.
“Tor played a big role in this,” Elise said. “He’s been the key to us coming here.”
“If I had been the person who had the disease,” Tor responded, “she would have done all that. The roles would have been reversed.”
“And now,” he adds with a wide smile, “she runs the whole family. She’s there with us, biking, hiking camping,” including a recent stroll in the wilds of Washington.
“We hiked up to Rattlesnake Ledge the other day!” Elise blurted.
“And we’ve started having friends over for dinner,” Tor said.
“Yeah,” Elise said, “that is a new one.
“I remember Tor asking me before all this: Are you afraid? Are you worried? But the only thing I was afraid of,” she added, “was not getting the transplant.”
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Bill Briggs is a former Fred Hutch News Service staff writer. Follow him at @writerdude. Previously, he was a contributing writer for NBCNews.com and TODAY.com, covering breaking news, health and the military. Prior, he was a staff writer for The Denver Post, part of the newspaper's team that earned the Pulitzer Prize for coverage of the Columbine High School massacre. He has authored two books, including "The Third Miracle: an Ordinary Man, a medical Mystery, and a Trial of Faith."
