Kari filled out an online form requesting a second opinion on the website for Children’s Hospital of Philadelphia (CHOP), which had a reputation as a great research hospital. The next morning, I got a call from Dr. Susan Rheingold, one of the top doctors in the country who treats relapsed childhood leukemia. I was so impressed that she called me right away.
She asked us to send Emily’s medical records, so we got them printed out. That was quite a stack! We went to UPS to send off this huge package. Dr. Rheingold said she would review the records, and she advised us to make an appointment to see her at CHOP as soon as possible.
Philadelphia is a long four hours from Philipsburg. I was thinking as we drove there a few days later how it was already tough on our families to drive the two hours to Hershey. We’d see a lot less of them if we set up Emily’s care in Philadelphia. Also, Emily was comfortable at Hershey, and so were we. We knew the staff well. We trusted and respected the doctors, and we loved the nurses and our THON family. It was important that Emily feel solid and grounded no matter what the disease threw her way.
CHOP is at the southeastern edge of Philadelphia, right against the Schuylkill River, surrounded by Penn Medicine, the University of Pennsylvania, and other medical facilities and research labs. We made our way through dozens of taxis and cars and ambulances crowded onto a street where families pushed their loved ones of all ages in wheelchairs through the sliding glass doors in search of healing. I’d never felt that kind of energy on a street before, such a concentrated yearning. Yet when we walked into CHOP, I felt hope. We entered an atrium seven stories tall, filled with light. To our left was a playful perpetual-motion sculpture, constantly chiming as colorful balls traveled down chutes and ratcheted up on conveyor belts, hitting the bells along the way. And there was a recording studio where a young patient was singing solo to her favorite song backed by a karaoke machine.
We met with Dr. Rheingold, a soft-spoken woman with warm, deep-brown eyes who reassures you just by being in the room. She seemed to have answers to all our questions and already had several plans in place for treating Emily. After reviewing Emily’s records, she said they saw no indicators as to why she’d relapsed; she should have been in the 90 percent who do not. She agreed with Hershey that a bone marrow transplant was the next best treatment for Emily, and emphasized that CHOP’s approach would be similar, and she hoped it worked. If it did not, the advantage at CHOP was what came after that. As a leading research hospital, CHOP is often able to offer cutting-edge treatments to children. The doctors conduct clinical research trials on the latest approaches to treating disease, allowing them to bring the newest therapies to the children treated at CHOP.
Kari wanted to know more about these new treatments and if Emily would be eligible for any clinical trials. Dr. Rheingold said it was an individual decision based on the patient. The delicate balance for the doctors was to make sure to preserve as many treatment options for the patient as they could. The qualifications for including a child in a clinical trial are precise. Maybe one clinical trial specified it would only include patients who had not had a bone marrow transplant, or it excluded those who had taken a particular kind of chemo. The very things we might try to save Emily’s life could prevent her from being in a clinical trial.
While Kari and Dr. Rheingold discussed more of the scientific specifics, I took Emily on a walk around the children’s cancer floor, guided by another doctor, Dr. Nancy Bunin. The cancer floor had much bigger rooms than we had at Hershey, and I liked that. As we walked out of one of the patient rooms and turned back to join Kari, I stopped in my tracks when I saw the hallway leading to the bone marrow transplant unit.
To my eyes, the hallway was glowing. I envisioned myself there with Emily. She was pale and weak, but she had beaten cancer. She was taking small steps with a walker, and she seemed very tired. I had my arm around her, and she was leaning on me. It seemed as if I were teaching her how to walk again in that hallway.
The vision struck me like one of my whispers, but I didn’t understand it. This seemed like a vision from the future, as my whispers often do. Or maybe it was a one-off, not a whisper but a hallucination, because I desperately needed a sign of something to hope for. I decided not to tell Kari about the vision in the hallway because I couldn’t trust what it was just yet.
We decided that if both hospitals were going to treat Emily’s cancer the same way, it was better for her, better for all of us, to be closer to our family. We thanked Dr. Rheingold and left.
We settled back in at Hershey, where we knew the staff and had our family and friends close by, praying for that bone marrow donor to come through soon.
It was interesting to me how close Kari and I had become with Becky and Ariana in the last year. They had become part of our emotional support group, calling us to find out how Emily was doing,
