Where are they now? Updates on memorable people we profiled in 2015

Hutch News

Where are they now?

Updates on five memorable people we profiled in 2015

Dec. 31, 2015

Countless people generously shared their stories with us and the world this year. Today, we'll update you on some of the most memorable people we wrote about during 2015. 

Paul LaGrange and his family

Paul LaGrange, shown with his family in December 2015.

Courtesy of Paul LaGrange

After cancer treatment, home — again — for the holidays

Being home for Christmas had special meaning this year for Paul LaGrange of Kelowna, British Columbia.

Last year, LaGrange, now 48, spent the holidays at the Seattle Cancer Care Alliance House, a “home away from home” for cancer patients. Because he was undergoing daily three-hour radiation treatments for chordoma, a rare cancer in his lower spine, driving the six hours to Kelowna and back was out of the question. So his wife and younger daughter came to Seattle for a deliberately different Christmas. Among their guidelines: No unfair comparisons. No reflexive commiserations.

Fast forward a year, and LaGrange, his wife and both daughters were at home in snowy Kelowna to welcome two of his siblings and their families. They had much to celebrate.

“My last MRI and scans showed no growth at the tumor site and no evidence of any spread or new cancer,” he said in an email sent on Christmas Eve. “Hurray!”

One of the side effects of treatment had been fatigue so paralyzing that LaGrange could be up and about for just two-hour stretches. Today he reports that his energy levels have been – slowly – rebounding, and he is now “at about 90 percent.” He is exercising regularly and enjoying a new job. “Overall, life is good,” he wrote.

For all the Christmas-card perfection of this year’s holiday, LaGrange has surprisingly tender memories of a holiday spent away from both home and certainty. His and his wife’s efforts to create a different but still special time worked better than they dreamed.

“Oddly, I really miss my time in Seattle and think about it every day,” he wrote. “While I hope I never go through anything like that again, I have such fond memories of the experience – the people I met, the city, the wonderful care I received and SCCA House. It will be forever a high point of my life.”

 Mary Engel 

Behzad Hathiram

Behzad Hathiram, photographed in June 2015

Robert Hood / Fred Hutch News service

Young boy with Fanconi anemia curious about his future following clinical trial

These days, the boy asks pointedly about cancer. He asks if his health problems would vanish if he ate more fruit, drank more milk. He asks if he’s to blame.

“The hardest part for my son has been understanding and trying to accept what the disease probably has in store for him,” says his mother, Mahazareen Dastur, whose son, Behzad, 10, was diagnosed five years ago with Fanconi anemia, (FA).

The rare, inherited blood disorder often leads to bone marrow failure, leukemia and other cancers in adulthood.

The illnesss also prompted Behzad’s mother and her son to agree to travel from their home in Mumbai, India to enroll him in a study at Fred Hutchinson Cancer Research Center. In May, scientists at Fred Hutch removed bone marrow from Behzad. Using a safety-modified version of HIV, they delivered and inserted a functional gene into those harvested cells. The team then returned Behzad’s bone marrow to his body – hopefully, correcting his anemia and preventing the development of leukemia.

More than six months later, Behzad’s blood counts remain low and – based on blood samples shipped monthly to Hutch scientists – he has low levels of gene-modified cells, his mother says, adding that she remains “pleased we took this risk.”

While he’s had no trial-related complications, his family is anxious about the results. And Behzad’s energy is “getting lower,” Mahazareen says.

But he continues to attend school. And he loves collecting coins, reading, gaming on his tablet and rankling his teenage sister.

“Overall, I'd say he is still doing pretty good for an FA patient,” his mother says. “I do not know where the trial or FA will take us. But then, no one knows much about what will happen tomorrow.”

— Bill Briggs

Dr. Curtis Mack

Dr. Curtis Mack

Fred Hutch file

‘I’ve been there’: Oncologist who became a patient gains new understanding

There was something special about Dr. Curtis Mack’s visit to Seattle in August: The weather was great, he competed in a 5-kilometer run, relaxed on a friend’s boat — and had no medical appointments to check up on his cancer. Since then, the news has only gotten better. “I’m feeling terrific, actually,” he said from his home in Tucson, Arizona.

Our readers were introduced to Dr. Mack in June, when results of a Fred Hutch clinical trial were published. A cancer specialist himself, in 2013 he was one of 35 leukemia patients transplanted with donated stem cell infusions specially filtered to lower the risk of graft-vs.-host disease. GVHD is a potentially debilitating side effect that occurs when donated immune cells attack the recipient’s own tissues. It becomes chronic about half the time. Fred Hutch researcher Dr. Marie Bleakley developed the experimental cell-filtering technique, and in this small study only 9 percent developed chronic GVHD.

As a radiation oncologist, Mack is a strong believer in clinical trials and would urge his own patients to enroll in a study if it might boost their chances of survival or a higher quality of life. GVHD-free and back at work full time, he now has another tool for his patients: “I can talk to them. I’ve been there.”

During his illness, Mack could barely lift a grocery bag. Today, he goes to a CrossFit workout – a mix of weight lifting, gymnastics and exercise – five days a week. Back in Tucson, he lives with his partner, Darrell Leetham, and four Weimaraners. The dogs go to work with him, and on weekends he runs with the dogs. “I used to tire easily, but then one day I realized, ‘Hey, I feel normal,’’ he recalled. “It kinda sneaks up on you.”

— Sabin Russell

Sherry Stoll

Sherry Stoll

Courtesy of Stoll family

Sherry Stoll fought the stigma surrounding lung cancer to the very end

Cancer wasn’t just a disease for Sherry Stoll, featured in our May story, The Lung Cancer Blame Game. It was an opportunity to become a force for change. 

Sherry was diagnosed with lung cancer in 2009 and with breast cancer a year and a half later. The outpouring of support she received for her breast cancer diagnosis – compared with the lack of sympathy she received for her lung cancer – made her acutely aware of the shame, blame and stigma many lung cancer patients face.

As a result, the Pittsburgh-area resident became an outspoken advocate on behalf of lung cancer patients and started We Wish, a non-profit organization dedicated to fighting the stigma and funding innovative research in the field.

According to her daughter Dominique, running the nonprofit – and its two annual fundraising events – was “a lot of hard work” for her mother, particularly since she was in active treatment for her disease, which metastasized to her brain in 2012 and again, in 2014.

But her mother felt it was necessary.

“We wanted people to know that if you have lungs, you can get lung cancer,” Dominique said. “And we definitely want to carry that work on. That was mom’s main concern. She told all of us she wanted We Wish to go on after her.”

Sherry died August 21 at the age of 54. In addition to raising awareness about the stigma that surrounds lung cancer, her nonprofit has so far raised $20,000 to fund research into the genetic mutation that triggered her disease.

“I think it was very important and thoughtful and selfless what she did,” said Dominique. “It was definitely an inspiration. Her legacy should live on.”

— Diane Mapes

Elise Elholm

Elise Elholm, shown at home with her neighbor's puppy in December 2015.

Courtesy Elise Elholm

‘Bigger than big:’ Good news from Crohn’s transplant patient transcends revived health

The restoration of Elise Elholm runs far deeper than her reinvigorated body, beyond her steady engraftment of donated stem cells, even past a scope image showing her healing bowel.

Her comeback – 18 months after a bone marrow transplant aimed at quelling her severe Crohn’s disease – is happily punctuated by a return to work, a very special new Facebook friend and, finally, a puppy, she said.

“Let's take the most important, wonderful thing first,” Elholm wrote via email from Norway, where she lives with her husband, Tor, and their three children.

Not long ago, Elholm received an introductory e-mail from her donor – a man in his mid-20s who’d earlier requested a profound birthday gift: the fee to enroll in a bone marrow registry. His cells were a genetic match to Elholm. And in June 2014, she received those donor stem cells at Fred Hutchinson Cancer Research Center as part of a trial to test bone marrow transplants as a potential Crohn’s cure.

“It was a good feeling getting to know my donor and I am so thankful that he did what he did for me,” Elholm said. They’ve become Facebook friends.

Before the transplant, her version of Crohn’s was so extreme, she sometimes survived on liquid nourishment, endured three surgeries to remove diseased intestinal sections and suffered from vomiting, fevers and pain from intestinal strictures. But her improved digestive tract has refueled her energy. In November, Elholm returned to her full-time job as a clinical researcher.

“One of the first projects I started to work on was a clinical trial on Crohn's disease,” she said. “Call it fate. Work is going well. It's good to be back in business.”

Then, there’s the dog situation. Her family long wanted a pooch.  Her illness didn’t allow for that. Following the transplant, doctors said her blood counts should normalize before she got around animals. The counts are good again, she said.

Now, the Elholms are on the waiting list for a puppy – expected to arrive this spring.

“Then, last week, the owner of a puppy in our neighborhood was admitted to the hospital. She asked us if we could take care of her puppy (temporarily). And I was just thrilled to be able to say yes,” Elholm said.

“So here I am, writing to you, with a cute little puppy at my feet. This is bigger than big: Finally being able to pay back a little for all the goodness we received during my illness.”

— Bill Briggs

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." 

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