By Sue Mock
Our journey began when Ricky, our beautiful, amazing, fun, special boy, was just 4 years old. Right after his fourth birthday, Ricky started complaining that his leg hurt. Over the next six months, he had about four episodes in which he was inconsolable due to the pain in his leg.
After discussing these episodes with our pediatrician, he referred us to a local orthopedic physician. The orthopedic doctor took an X-ray and said it looked like Ricky had a stress fracture, which is basically impossible for a 4-year-old. So he sent us for an MRI and bone scan at another institution. But even after those tests, he wasn’t sure what was going on with Ricky.
That’s when he referred us to Rush. Our doctor told us that even though he was affiliated with another hospital, he personally would take his family to Midwest Orthopedics at Rush.
A diagnosis no parent wants to hear
Things continued to snowball at the speed of light after our first visit at Rush. Exactly two weeks after his bone biopsy, Ricky was diagnosed with Ewing’s sarcoma, a bone cancer that primarily affects children.
He had a tumor that involved his entire femur. But we wouldn’t truly understand the gravity of the tumor until months later when we found out the cancer had metastasized to Ricky’s liver — which was very rare, according to our amazing pediatric oncologist, Paul Kent, MD.
We quickly learned that there is no time to waste with a pediatric cancer diagnosis. We had just one week between the day Ricky was diagnosed and the day he started chemotherapy.
The rest of Ricky’s story is truly amazing. First off, I’m happy to report that Ricky is nearly four years cancer-free! He endured blood transfusions, emergency department admissions, a liver resection (the removal of part of his liver) and a crazy surgery called a rotationplasty, which is a limb-sparing technique for patients like Ricky.
During the rotationplasty, the team at Midwest Orthopaedics removed Ricky’s entire left femur and rotated his leg 180 degrees from below the knee. This technique provided Ricky with the greatest chance for mobility, giving him two functioning joints vs. none.
When we went for a second opinion at another institution, they told us Ricky would need a full amputation at his hip. The team at Rush was willing to think outside the box and provide alternatives and solutions that no one else could offer. That is just one reason we love Rush.
We also quickly learned the advantage of having our child treated at a nationally ranked academic medical center. Ricky’s care team had an incredible amount of resources readily available. After determining that the cancer had spread to the liver, Dr. Kent had just about every one of his med students, interns and residents researching metastases to the liver to determine the best way to treat it for Ricky. In the end, Dr. Kent recommended a liver resection after about two months of chemotherapy.
When Ricky started chemo, the Rush nursing staff guided us expertly and compassionately every step of the way. They were truly amazing.
The day Ricky started chemo, the Child Life Services team occupied Ricky, while our nurse, Amy, took my husband and me into a room to explain again how chemo worked. She answered all of our questions, and she comforted me through my tears as the realization of what we were about to embark upon hit us again.
A second family
During our time at Rush, we also quickly got to know the wonderful Child Life Services team. These amazing people became our second family. They helped us explain to our baby boy what was happening to his body and how all the tests were performed. We saw firsthand how much they cared about Ricky — and us — as they steered us through all aspects of his treatment.
They also helped us through two extremely difficult conversations with Ricky. The first was what was going to happen to his leg during the surgery. Our primary child life specialist performed a rotationplasty on a stuffed animal named Chemo Duck so Ricky had a “friend” who was just like him.
Our child life team was there again when Ricky had his hip spica cast (a cast used to help hold his hip, muscles and tendons in place after his surgery) removed. He was hysterical, crying and yelling that he just wanted to be normal. At this point, I had to step away because I was so overwhelmed by all that Ricky had been through. But our child life specialist never left his side, comforting and distracting him when I couldn’t. And I am eternally grateful to her for that.
Going above and beyond
We also realized that the incredible team at Rush cares for their patients well beyond the hospital walls.
Ricky was about to start kindergarten as he was nearing the end of treatment. On the first day of school, Dr. Kent and a team of medical students trekked out to Lake Zurich and showed up at Ricky’s school. Dr. Kent and his students explained to Ricky’s classmates why Ricky was bald, why his leg looked different and what he had endured over the last nine months. One of the medical students even performed a rotationplasty on a Sponge Bob toy for the class.
It was a huge success, and it helped Ricky adjust to his new school after all that he had been through. Yet again, we were incredibly touched by and indebted to this team that continued to go above and beyond the call of duty for our family.
Near the end of Ricky’s treatment, we were approached by the Family Advisory Council at Rush University Children’s Hospital about joining the council. This group of parents of current and former patients advises the Children’s Hospital on ways to enhance the patient and family experience.
We meet quarterly and provide feedback, along with ongoing design and development improvements that will help pediatric patients and their families during their time at Rush.
It is an amazing group of people and we are so proud to be a part of it. We consider it our way of giving back to the place we called home during some of our darkest hours.
Grateful and supported
As any cancer patient will tell you, there were many bumps along the way. But we had an extraordinary support network at Rush University Children’s Hospital.
We had the entire organization at our disposal: Child Life Services, the oncology team, Midwest Orthopaedics at Rush, the pediatric surgery team, nutritionists, an amazing nursing staff, the social work team, the receptionists, the admissions team, the maintenance staff and everyone else we met along the way.
All of our amazing nurses and personal care technicians hold a special place in our hearts for the care they provided to Ricky and the support they gave us. We had many late-night conversations with the nurses and receptionists on the unit during those long, endless nights. Sometimes just talking helped, even when it wasn’t about the cancer, the treatment, the fears.
I consider them all part of our Rush angel network.