Ten year old Aden Knar didn’t get transplant; new therapy offers hope

Followup to original story published in February, 2014 about 10 year old Aden Knar’s battle with cancer.

In February, 2014, I wrote a story about a 10 year old boy in Colorado who faced a deadline that would intimidate any of us regardless of age. Aden Knar, who was then in third grade, needed a bone marrow transplant within two months, and a donor hadn’t been found. Family members—siblings and parents—and friends didn’t match. Doctors believed if he didn’t get the transplant, Aden might not survive.

Aden didn’t get the transplant. 

By a series of trials (literally) and tribulations, this child once again beat back the assault on his immune system.

In my endeavors as a writer for four decades, I’ve written countless human interest stories, but few have touched as many people as Aden’s story. Every day when I’d check my Twitter feed for updates, I’d see retweets of his story. Sometimes a person would ask how Aden was doing.

By circumstance I read a Facebook post from a close friend of our family. Tara Richardson, who was the first friend our older daughter made after we moved to Jacksonville, has much in common with Aden. Tara is like family to us—I watched her grow from a young college student to a beautiful young woman.

Shortly after graduating from college, Tara began to wage a daily battle against a different kind of cancer than the type Aden battles. I wrote about Tara in 2012 after she had a minor car crash she is probably grateful for to this day. Had it not been for that accident, she might not have been diagnosed.

Tara has blogged about her battle with cancer. She is one of the strongest women I’ve ever known in my life, and I admire her in ways that I cannot find words to express.

When I saw Tara’s post—her most recent scan has caused some concern—I remembered Aden and I decided to try to track down some of his family in an effort to get an update on him.

I found a story that made me really stop and think. As Aden’s parents, Mike and Lori, were dealing with challenges of getting treatment for their son, I learned his dad had lost his job in the broadcasting sector after his company underwent a takeover. Mike had also served in the military. Many of us might might go catatonic if we dealt with all that. Yet Mike and Lori undertook a startup, Southern Colorado Radio. By the end of 2014, they had expanded to four stations.

All the while, Aden waged a daily battle for survival.

Aden’s dad Mike answered the email I sent after reading about the radio stations.

In April, 2014, the Knars had to accept the fact a donor hadn’t been found. They took Aden to Texas Children’s Hospital in Houston. Physicians there “disagreed with the transplant” option called a “haplo.” Such a transplant involves using marrow from a donor that isn’t a perfect match. In Aden’s case, going that route by using Aden’s mom or dad’s cells offered only a 25 percent success rate. “Coupled with Aden’s heart and lung failure from intensive chemo,” that protocol “would have been a recipe for disaster.”

The Knars decided to try another approach. Aden’s primary caregiver, Dr. Stephen Hunger, had transferred to Children’s Hospital in October, 2014, to head up the pediatric oncology division. Hunger, said Mike, considered “Aden’s poor health history, no donor options, and high relapse risk.” What was left?

“Dr. Hunger enrolled Aden in the T-cell therapy trial conducted with the University of Pennsylvania and the big drug company Novartis,” said Mike.

How would that treatment work?

“They take Aden’s T-cells and if he was to subsequently relapse—he has a 60 percent chance of another relapse—we would go back to Philly and they would pull his T-cells out of the freezer, infect them with a virus that attacks the cancer, and hope they can induce a new remission. It’s an innovative and groundbreaking way to fight leukemia using your own body.”

The family spent Thanksgiving in Philadelphia at the hospital.

“Today Aden remains on heavy doses of oral chemo through next year,” said Mike. “His hair is back, he walks poorly [because of the steroids], and he has lots of nausea. But he’s alive.”

The family maintains a private Facebook page with updates on Aden. There’s a photo of his first trip to the barber after his hair grew back. There’s another of Aden when he was very ill beside a photo of him after treatment had a positive impact. There’s yet another of Aden with his beautiful sister Allie as she was about to head out to her high school prom. The photos illustrate the blessings of family and the dilemma a parent faces when a child has a serious illness—life must go on despite the long waits in hospital rooms and entanglement, both physical and mental, of IV tubes.

Children who fight the onslaught of a serious illness always touch a chord in me. One of my own children fought some very hard battles when she was young, undergoing multiple surgeries and treatments until she was 14 years old. Her war had an incredibly good outcome, courtesy of the amazing US healthcare system.

Over those years when our daughter dealt with the medical maze, birthdays, holidays, and even just boring days were interrupted. I remember how hard it was as a parent to continue to discipline and guide even as my emotions were in turmoil as I confronted the jabs of needles, the staples from surgery, the medical releases we had to sign acknowledging the outcome of a procedure could potentially harm as well as heal.

Amid those challenges, a parent still is mindful other children need nurturing. Cancer, or any serious illness, demands a battle the whole family must wage.

After receiving the email responses from Aden’s dad, I knew I would bump all the stories sitting in my queue like needy little puppies and put Aden atop the list. So many people have expressed interest in his story and in the organization that attempted to help find him a donor, Be the Match. I told his dad Aden had touched the hearts of so many people, and managed to bring out the best in all of us.

Aden’s war will continue. His parents are committed to helping him fight it.

“We have a great plan if evil returns a third time,” said his dad.

I was reminded of something Tara wrote in her blog. As the date neared for her wedding day, all her hair was gone because of the treatments. She chose not to wear a wig. She ended up putting a beautiful hairband around her bald head. Tara was one of the loveliest  brides I have seen. And I love the words she wrote about how she fights her own war:

“[C]ancer does not define who I am. Cancer does not define the person facing it. My name is not Cancer. My name is TARA and I am kicking cancer’s ass.”

In Colorado, a young boy named Aden is doing the same.

[Featured Photo: I learned about Aden Knar via Sean Hannity’s radio show. This image was snipped from Hannity’s website.]

(Feature story by Kay B. Day/April 30, 2015)

Related at Day on the Day: The Kress Foundation

 

About Kay Day

Kay B. Day is a freelance writer who has published in national and international magazines and websites. The author of 3 books, her work is anthologized in textbooks and collections. She has won awards for poetry, nonfiction and fiction. Day is a member of the American Society of Journalists and Authors and the Authors Guild.
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