A Patient's Handwritten Note Captures an Honest and Trusting Moment

When she was 3, Piper told her family, “My leg just doesn’t work.”

Her family had noticed she had a limp, so they decided to have her leg medically evaluated. After receiving multiple inconclusive results ranging from a sprained ankle to leukemia from their family doctor and several specialists, Piper was diagnosed with the rare bone disease, fibrous dysplasia.

Patients with fibrous dysplasia form scar-like tissue in the place of regular bone structure, which can lead to fractures. Because Piper’s doctor was not a pediatric orthopedic specialist, and was not familiar with this condition, her family began to seek medical care elsewhere. “We needed to find someone who could give us a better idea of Piper’s future,” said Julie, Piper’s mom, “but we didn’t know where to start.”

Piper’s grandmother suggested that the family investigate if there was a Shriners Children's hospital in Oregon. After learning about Shriners Children’s Portland, Piper’s family made an appointment with Dennis Roy, M.D. “I remember going in with loads of concerns and leaving confident that Piper would be just fine,” said Julie. “And for the next 3.5 years, she was just fine.”

Piper’s family moved to Arizona and found a local doctor who could see Piper for checkups. However, they would commute to Shriners Children’s Portland for her main orthopedic care appointments.

While in kindergarten, Piper developed a new, more severe limp. A surgeon in Phoenix ordered an MRI and CT scan. The scans revealed that Piper had developed a pathological fracture, and her femur was now bending. After consulting with Dr. Roy, the family was informed that Piper would need crutches and would need to have surgery as soon as possible. Unfortunately, due to the COVID-19 pandemic, Piper was unable to get the required surgery in Arizona.

After learning of Piper’s situation, Dr. Roy, who would be retiring soon, called Piper’s family to suggest they talk with Jeremy Bauer, M.D., an orthopedic surgeon at Shriners Children’s Portland who could help the family get Piper the care she needed.

Dr. Bauer remembers well meeting Piper and her family. “Piper has a difficult problem with diseased bone in a growing child.” said Dr. Bauer. “When we first met, we had to treat her immediate problem of a fracture that was causing pain. Because the bone doesn’t grow normally, it can become more deformed if left untreated. We decided on a treatment plan that included staged surgeries that allowed us to first reorient the bone to make it straight.” Just three months later, in June of 2020, Dr. Bauer was able to successfully complete the surgery. The family was grateful to be back at Shriners Children’s and thankful for Dr. Bauer’s care and quick action.

That care continued to help Piper through even more surgical procedures at Shriner’s Children’s. The following March, during a pre-op meeting, Dr. Bauer noticed a possible new fracture in the upper part of Piper’s femur. After ordering a CT scan, Dr. Bauer confirmed that there was indeed a fracture and was able to change his surgical plan accordingly.

He was able to successfully complete the surgery to replace her hardware with a rod in her femur. “She was very brave throughout the process,” said Dr. Bauer. “She worked very hard with rehab to get back her strength.” Since her last surgery, Piper’s family is happy to report that she is doing great, working hard at physical therapy, and hopes to add some new hobbies like archery to her life.

Piper’s mom said that the family’s experience with Dr. Bauer made their Shriners Children’s experience exceptional. “How do you put in words how much a doctor and their commitment to excellence means to a parent?” said Julie. “To know Piper is guaranteed several surgeries is not something we ever thought would happen, nor something we'd ever want. However, knowing she is receiving the best care from Dr. Bauer makes it much easier."

Before this last surgery, Piper wrote a note to Dr. Bauer asking him not to mess up. Her parents had no idea she was that anxious about the surgery. "He delivered, definitely did not mess up, and fixed it perfectly! He even wrote her a note back and let her keep her hardware,” recalled Julie.

Piper's handwritten note:

"Dear Dr. Bauer,

Thank you for being a great surgeon. I hope you do good and not mess up. You are so good at surgery. I am nervous but I know it will go well." - Piper

Dr. Bauer's response, which was waiting for Piper when she woke up read,

"Dear Piper,

I did not mess up! It is fixed perfectly!" - Dr. Bauer

Piper remembers her first overnight stay at Shriners Children’s Portland. She received a blanket as a gift from another patient, with an encouraging note. Inspired by this, in 2021 Piper decided to forgo her own birthday gifts and instead ask for LEGO set donations that she could give to other patients at the hospital.

Piper had originally set a goal of donating 51 LEGO sets, but she ended up donating 110 sets. When her family dropped off the donations, they had a chance to meet Lynda Luce, philanthropy director at Shriners Children’s Portland. “Lynda and I have kept in touch, and she even arranged a special stuffed animal delivery in Piper's hospital room this past surgery,” said Julie. “It was so kind and thoughtful of the philanthropy team to do that for our daughter.”

“Shriners Children's means a lot to me,” said Piper, now 11. “Shriners Children's is basically a bunch of people who devote their time to help kids like me be kids again. The doctors and nurses and everybody in between who could choose any job in the world chose one where they get to help us. I think that's pretty awesome.”