A Rheumatologist and a Rose

By Elizabeth Reed

November 22, 2019

 

The weighty rose bush I carry impedes my vision, but I can see enough to walk from the Boston Children’s Hospital garage to the sixth floor of the Fegan Building. I could have driven here blindfolded, so often have we been here. Nineteen years ago, our daughter was diagnosed with Juvenile Idiopathic Arthritis. My husband and I had never heard of the disease, even though JIA affects over three hundred thousand children—more than juvenile diabetes, more than all juvenile autoimmune diseases combined. Through the anxiety of dispensing toxic medications, inflicting weekly injections and seeing our daughter in pain, her pediatric rheumatologist saved our sanity.

When Annierose was three years old, we were traveling through the Pacific Northwest. We noticed that her right ankle was swollen. She wanted to be carried. What three-year-old didn’t? Back in Boston, her right knee ballooned with swelling. Our pediatrician immediately sent us to Children’s where she was diagnosed with JIA. At our follow-up appointment the female doctor was clinical, never cracked a smile, and talked only about statistics and medications to me and our bouncy child. In the hall I overheard a doctor speaking compassionately with a young patient’s family. The mother said his name. At the checkout desk the assistant asked me who our doctor was.

“Dr. Sundel,” I said—the doctor in the hall.

Our first appointment with him previewed our future visits.

“Let’s have you run down the hall,” he said.

Annierose threw off her sandals and bolted barefoot down the corridor, pigtails flying.

“She’s kicking her right leg out to the side to avoid bending it,” he said softly. “She’ll need physical therapy.”

Now I understood her unusual gait.

He congratulated her. “Great running!”

In the exam room he asked, “Do your knees hurt?”

Annierose shook her head.

He bent her limbs while examining her joints. It didn’t matter that Annierose denied pain. With his eyes on her face, and his hands on her joints, he detected the slightest flinch, indicating pain and inflammation. He measured her jaw opening, declaring it the biggest he’d ever seen in her age group. That result remained so, provoking laughter from residents, nurses and visiting fellows, and providing relief that her jaw was unaffected.

Controlling JIA is imperative because inflammation can cause joints to grow unevenly, resulting in deformities. Most arthritis medications have not been approved for pediatric use and the options are limited. Twenty years ago, the first biologic (a medication that alters cellular actions) changed the face of JIA, lifting children out of wheelchairs. But these medicines often have severe side effects and they reduce the immune system, leaving patients vulnerable to serious infections. Most biologics are administered by injection or infusion. Many children, like ours, develop needle phobias. Injecting our terrified, screaming child every week was a torturous routine for us and for her. We tried everything to mitigate her fear. Squeezing a foam heart was one distraction that Dr. Sundel gave us. Other techniques from psychiatrists, behavioral therapists, parents and a hypnotist, worked for months until she outgrew each trick, requiring a new one.

The journey through a chronic pediatric illness is an overwhelming labyrinth of information and emotion. Through countless joint taps, x-rays, fever spikes, alarmingly high liver enzymes, bleeding ulcers, MRSA and staph infections, Annierose’s doctor has been a trusted travel companion. He tempered our concern about using a chemotherapy drug, by explaining that the dose was a mere fraction of the dose used for cancer treatments. He gave invaluable advice on whether to start soccer in elementary school and how to pace her activities through high school. He cared about Annierose’s spirit. When her hair started to thin, he decreased the dose of the offending medication. He encouraged us to join the Arthritis Foundation, which proved to be a lifeline of contact with other families and a source of in-depth information. Most importantly, the Arthritis Foundation empowered our daughter to have some control over her disease by becoming a representative, fundraiser and activist.

Three weeks ago, Annierose graduated with a bachelor’s degree in Violin Performance. She has played team soccer and quidditch, skis, bikes, plays piano and hikes mountains. The twelve medications she takes daily and Dr. Sundel’s guidance have made this possible.

Today is her last appointment. It is time to transition to an adult rheumatologist. When Dr. Sundel enters the exam room, he beams, but then sobers when he remembers it is our last appointment.

“It’s a sad day,” he says.

He is moved by our gift of a rosebush. During this last exam he keeps his eyes on Annierose, looking for signs of pain. He bends her limbs as if he is training a gymnast, but the trainer is barely 5 feet tall and the gymnast is 5 feet 10. He gives Annierose some parting advice and one last gift—a lollipop from his white coat pocket. My husband and I thank him deeply.

He picks up the rosebush and we file out of the exam room. My eyes are teary from the memories of the nineteen years we have shared raising, “not a JIA girl,” as he once advised, but “a girl who just happens to have JIA.”

Dr. Sundel’s medical knowledge makes him an expert. His wisdom and advice make him a human being.