Couple continues to celebrate the small wins in their fight against glioblastoma

(In September 2021, we featured Laura Walsh in an article about her brain tumor diagnosis and subsequent treatments. We recently checked in with her to see how things are going.)

In 2020, Laura Walsh had the first in a series of brain surgeries to help her fight her brain tumor. The tumor was so aggressive that she required five subsequent surgeries. Her tumor was re-classified by experts in 2021 as a cancer distinct and more aggressive than glioblastoma, one of the deadliest cancers. Her cancer is now classified as an H3K27 glioma.

In February 2021, she enrolled in a clinical trial led by Neurosurgery Department Head Clark C. Chen, MD, PhD. As a result, she takes a medication known as ONC201 once a week that is specifically designed to treat her brain tumor. The use of this drug was based on a decade of work done by Chen’s research.

It’s been two years since Laura enrolled in the study and her most recent MRI showed no signs of tumor growth.
 
Living on the edge of a precipice
Laura and Keegan Walsh (pictured above with their children) live every day with the knowledge that her brain tumor could return. “The issue with fighting glioblastoma is do you live like there’s no tomorrow, or do you start planning a future? At any given check-in, things could change,” said Keegan. “So far, everything has been great.” The couple wants to assume that things continue to be great but there is a lot of uncertainty.

“It takes tremendous fortitude to live on such a precipice — with the prospect that any new symptoms can potentially mean cancer recurrence — that the next MRI can deliver the dreaded news that the therapy is no longer working,” said Chen. “The fortitude that marks Laura and Keegan’s every day – fortitude that has become so second nature to the two of them – really exemplifies the best that the human spirit has to offer. Laura and Keegan are a tremendous inspiration to me.”

While their fortitude is strong, Keegan has clear feelings about the situation. “It’s awful,” he said. “One of the best ways to combat this dumpster fire is to stay positive and find joy in all the little wins… it’s the little things like her remembering that she had eggs for breakfast. It sounds so small, but after two years having no memory of breakfast by lunch, a quick ‘I know I shouldn’t be hungry after all those eggs, but I am,’ is enough to make my whole day.” Progress, after all, is not a straight line, according to Keegan. “A week ago, she could tell me what she had for breakfast and then it might be two months before she can remember that again, and sometimes I’m lucky enough to get a few days in a row,” he said.

Daily rituals
Memory is often impaired following brain surgery, chemotherapy, or radiation therapy. And Laura underwent six procedures followed by both chemotherapy and radiation. “Keegan and other family members and friends see what she’s going through,” said Chen. “They experience this disease profoundly.”

The couple has created daily rituals designed to help Laura improve her memory. “I keep a very detailed planner so I can write down what I do, which helps me remember,” said Laura. “At the end of the day, Keegan quizzes me about what I did. It’s becoming easier to answer his questions.” Keegan hopes this nightly ritual gets boring. “One day she will say, ‘Duh, Keegan, we did this, this, this, and this,’ when we do the daily quiz and it will all be accurate,” he said.

Earlier in her recovery process, Keegan’s parents moved in with them to help with their three grandchildren and household chores. When the couple’s youngest started daycare in May, they sent his folks back into retirement. “We’re trying to get into more of a normal life,” Keegan said. “This year’s challenge has been for Laura to continue working on her recovery and to return to being a full-time mom.”

Help from family, friends
Although no one is currently living with them, Laura and Keegan continue to depend on family and friends for help. “Our oldest is in kindergarten now so we’re mixing daycare routines with school schedules and activities,” said Keegan. “Laura also wants to be involved with after-school things like dance class, but she can’t drive. It’s not that she can’t physically do it, it’s having her remember where she’s going.”

That means one child’s activities turn into family activities. “And when the chaos gets to be too much, we rely on family and friends for some relief,” said Keegan.  “Laura’s parents take the children on a lot of weekends to let me catch up on work, household chores, or to simply just rest. We are doing our best to give our kids a normal life that’s not hindered by Laura’s condition”

Help from the kids
Their children have helped them with that. “They challenge us but the beauty of it is that they’re so young, they don’t fully understand what’s going on,” said Laura. “Them being so naïve is kind of refreshing for us.” Keegan added that their oldest one picks up on when mom isn’t quite there. “And they have absolutely figured out how to play the game of asking me for something and then asking Laura multiple times waiting for her to forget the first answer,” he said.

In addition to celebrating the small things, there have been big moments in Laura’s life since her diagnosis. “She went to some bachelorette parties, was in a wedding, and took a vacation with her friends,” said Keegan. “Two years ago, we didn’t know if she would ever do things like that again. A little bit of her attitude and personality are also coming back. She’s been able to crack a few jokes out of nowhere. It’s really cool to see that sort of confidence coming back with her memory.”

Laura believes that all of this has made their marriage stronger. “I didn’t know if we would last, but now, I have no doubt,” she said.

Impact of research
Despite the overwhelming odds of fighting a highly aggressive brain cancer, decades of research are making a difference in Laura’s life, noted Chen. “Most H3K27 glioma patients survive less than a year.  As such, Laura’s response to ONC201 is nothing short of a miracle – a miracle made possible by decades of research supported by our government, by the University of Minnesota, and by philanthropic donors,” he said. “We still have a long way to go, but I am beginning to see more patients benefiting from this drug. In the interim, we need to continue the research that will someday make miracles commonplace.”