Cedar Hills mom receiving double lung transplant after other cancer treatments fail

SALT LAKE CITY — Like most Utah County moms, Kelsey Flake has been helping her kids get ready to return to school — but she is doing it from out of state, relying on family and friends to help back at home in Cedar hills.

Flake, a 39-year-old mom of five, is in Chicago right now so she can receive care from the only facility in the United States that is providing double lung transplants for cancer patients. Her children are at home with their grandparents as they start school, because it is very important for her to not get sick.

"That's the hardest part right now is being away from my family," she said in an interview with KSL.

Because her Stage 4 cancer is contained to her lungs, and each other treatment available to her was not effective when she tried it, Flake and her husband have moved to Chicago for one year to receive care through Northwestern Medicine's treatment research.

Her children, ages 15, 13, 11, 8 and 6, will be able to join them hopefully by Christmas and stay with them in Chicago until next summer, when the whole family can return home. But for now, they are doing nightly Zoom calls.

Flake said she is doing what she can to stay in her kids lives "as much as possible" while working on getting her treatment and recovering.

A miracle approval

Many cancers have a mutation that can be targeted specifically by a pill or a treatment, but Kelsey Flake's cancer doesn't. After she was first diagnosed, she did chemotherapy, immunotherapy, a right upper lobectomy and eventually was celebrating negative tests as doctors thought they had gotten all the cancer.

Flake ran a half marathon benefiting cancer last summer, but then in September her cough came back and a biopsy showed she now had Stage 4 cancer in both lungs.

"We started to do the treatments again, but nothing was working; it wasn't getting better," she said.

The mom ended up on full-time oxygen, and right now she only has 41% of her lung capacity. But she did have one important win — the cancer has remained in her lungs, meaning the double lung transplant is an option for her.

And, she was approved from her insurance to cover the procedure even though it is out of network, which she called "a miracle."

Her surgery will be done in two parts. The first surgery on Thursday will help prepare her for the transplant, ensuring there isn't any scar tissue and everything is ready for the lung transplant, which needs to be done quickly. After that, she will be placed on life support while being listed on the transplant list. Doctors have told her they anticipate she should only be on the transplant list for about a week before organs are available for her.

"Everything right now is looking good for it to resolve my cancer," Flake said.

A double lung transplant as a cancer treatment was first done at Northwestern Medicine in 2021 to a 54-year-old patient who was already in an intensive care unit. It is considered only for Stage 4 lung cancer that has not spread to other areas of the body when other conventional treatments have not been successful.

Of the 17 individuals in the study who had a lung transplant between 2021 and 2025, each was still alive this summer compared to less than half of similar patents who only received medical therapy, the hospital's website says.

Help from family and friends

Flake said they have been grateful for people showing up at infusions to cheer her up or helping to distract her on days she is waiting for results of a scan. She said neighbors have made meals for them.

"We truly have had the best support group with family and friends and neighbors; it's been incredible. We've been so grateful," she said.

Her husband said they have not been good at asking for help, but people in the neighborhood have stepped up anyway and taken over mowing their lawn and cleaning their home.

"That has been a big help to not have to think about that stuff," he said.

Family members have helped researching insurance and treatments, people have helped organize rides for their kids to sporting and school events — and the couple has been able to focus on Kelsey Flake's appointments and recovery.

Flake has always been interested in real estate, enjoying exploring Zillow and finding a fixer-upper home. About 10 years ago, she started working in real estate, and her husband joined her about a year ago, allowing them both to go full-time.

"It's been great for us to be able to work together and kind of enjoy some time together in that work environment as well," Jacob Flake said.

They aren't sure yet what they are going to be able to do remotely, but he said they are hoping to keep up their connections with clients so when they are able to come back, they will be able to jump back into work.

He said money donated to them through a GoFundMe* over the last few days provided them a security blanket to help them get through paying expenses in both Chicago and Cedar Hills for the next year with a limited ability to work.

Hereditary cancer

Kelsey Flake said she was very healthy when she was diagnosed with cancer. She was a runner and had done swimming in college and had never smoked — although now, frequently, she gets asked if she has smoked.

After her diagnosis, doctors connected her cancer with multiple aunts and uncles who had a similar diagnosis. Each of them had thought their cancer was caused by working on or living near a farm, but Kelsey Flake hadn't spent time near the farm. Now, the family has learned four of her six siblings carry the variant and are more likely to get lung damage or cancer.

She is "very grateful" for the doctors who helped her figure out the gene that led to her cancer diagnosis. She said doctors at the Huntsman Cancer Institute are working on researching it.

Jacob Flake said initially it seemed that a cancer diagnosis among people in their 30s was quite rare, but the more time they are spending with doctors and other patients, he said they are hearing cancer patients are getting younger.

Within the lung cancer community, Kelsey Flake said there is a saying "anyone with lungs can get lung cancer." For them, it took about 10 months to reach an initial diagnosis after trying multiple other avenues to address the cough.

They encouraged people who have a consistent cough or other unusual lung symptom to consider being checked for cancer and keep searching for a diagnosis.

*KSL.com does not assure that the money deposited into the account will be applied for the benefit of the persons named as beneficiaries. If you are considering a deposit to the account, you should consult your own advisers and otherwise proceed at your own risk.

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