First a double transplant, then cancer, now ringing the bell

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Quinn Brooks has seen entirely too much of Riley Hospital for Children in her young life.

The 10-year-old, who underwent a heart and kidney transplant as a toddler, was diagnosed last fall with a rare and aggressive form of cancer that sometimes occurs in patients who’ve had solid organ transplants.

Burkitt lymphoma post-transplant lymphoproliferative disorder (Burkitt-PTLD) is characterized by the proliferation of malignant B cells similar to Burkitt lymphoma seen outside the transplant setting.

So, in between follow-up care with the cardiology and nephrology teams, she was introduced to the oncology team at Riley as well.

It might not have been her choice, but she has made the best of it, charming the staff on the inpatient oncology unit, the PICU and the outpatient hematology-oncology clinic.

That’s where we find her on this visit, ready to ring the bell in triumph after completing her treatment for cancer.

“Quinn has gone through something no one should have to go through, and she’s done it with style and grace and a lot of sass,” said oncologist Dr. Jennifer Belsky. “I think she is the most unique and resilient patient I’ve ever taken care of.”

Showing off her glam nails, her pixie hairstyle and her mischievous grin, Quinn takes in all of the people who have gathered to celebrate with her at Riley and rings the bell with confidence.

Chief among those celebrating this day are her parents, Nick and Taylor, who have been making the trip from their home in Peru, Indiana, to Riley in Indianapolis for years.

“We knew it was a possibility that she could get cancer after transplant,” Taylor said. “It was always in the back of my head, but you don’t want to think of the possibilities of what could happen, so you just live in the delusion, but then it actually did happen.”

Still, she added, “Quinn has handled it all a lot better than I would have expected, to the point where I thought she was hiding all her feelings. I told her it’s OK to be mad or sad or scared.”

But no, Quinn says she’s doing just fine. As evidenced before the bell-ringing, she has perfected the art of rolling her eyes at both parents.

“She is super strong-willed,” her mom said. “And like a lot of kids, she didn’t realize the significance of what she was going through, how dangerous it could be.”

Like her parents, though, she is more than ready to be done with cancer. She actually was scheduled to ring the bell back in March but came down with a high fever the night before and was hospitalized for a few days.

Because of the risk of infection, she finished the school year remotely but was thrilled to be able to go to Riley’s kidney camp this spring and is excited to be rejoining her classmates when she returns later this summer as a fifth-grader.

“She’s bored out of her mind hanging out with us all day,” Taylor said.

As an only child, she doesn’t have built-in playmates, but she passes the time with friends and cousins, crafting, playing video games, making slime, swimming and drawing.

To her credit, Quinn has made friends with a lot of the team at Riley.

“She loves Dr. Belsky. She loves all the nurses,” Taylor said. “The whole staff has been great.”

And that’s just the oncology team.

“This team has been incredible,” Nick said. “All the teams have been. We’ve always been happy with cardiology and nephrology.” (Dr. John Parent is Quinn’s cardiologist, and Dr. Corina Nailescu is her nephrologist.)

And now the oncology team – both inpatient and outpatient – has impressed them.

“They are a wonderful team, all of their staff – their doctors, residents, nurses, techs. They’re all great people,” Taylor said.

The feeling is mutual, say Dr. Belsky and nurse navigator Audrey Leisinger, who both were on hand to sing Quinn’s praises as she rang the bell two weeks ago.

“To understand the magnitude of this bell-ringing … let’s pause and put yourself in Quinn’s shoes and her parents’ shoes,” Leisinger said, at which point Quinn offered up her sandals to the waiting crowd gathered around the bell. Of course, she did, and of course, the group rippled with laughter.

“I knew you were going to do that,” Leisinger said as she eyed Quinn with a smile, before continuing.

“Imagine, you’re already no stranger to this hospital, and then to be told that you’re going to be consulted by oncology is a total gut punch. You have been through long hospitalizations, pokes, lumbar punctures, surgeries, doctor appointments, and that’s just skimming the surface,” Leisinger said.

“And Quinn, you’ve done it all with the utmost strength, severe sassiness that we love so much … and really nice nails,” she added. “Taylor and Nick, you are two of the most calm, cool and collected parents I’ve ever met. You’ve been there for Quinn every step of the way.”

Dr. Belsky, who presented Quinn with certificates, a cookie and a medal, has also been by her patient’s side during the good and bad days of this cancer journey.

“There are not many kids like Quinn out there,” she said. “You’ve kind of shaken us all, and you’ve done it with a smile on your face. I don’t think you remember how sick you were. I’m in awe of you.”

Quinn shrugs and grins at that as if it all was nothing. But her care team and her parents know better.

And while she’s happy to say peace out to Riley on this day and go eat tacos with her family, she knows she’ll be back for follow-up care in the months and years to come.

“I don’t think she’ll ever say goodbye to this place,” her dad said.

“But we are definitely happy that this is behind us,” Taylor added. “It is a huge relief today to be here.”