Jacksonville, Florida, September 23, 2010 – When 12-year-old Derek Anderson complained of right arm pain in March 2009, his mother, a nurse, wasn’t that concerned. He had just started karate and Lisa Davis assumed her son had just pulled a muscle. When it didn’t go away, she took Derek to the Eglin Air Force Base ER, where doctors took an X-ray to see if there was a possible break. Five minutes after Derek and his Mom left the ER, she received the call that would change their life.
“They told us he had an abnormal X-ray and that it might be bone cancer or a lymph node cancer,” remembers Mrs. Davis. The doctors at Eglin referred Derek to Children’s Hospital at the University of Alabama Birmingham (UAB), where verification was made through a biopsy in the right humerus (a bone in the arm). Tests revealed it was anaplastic large cell lymphoma, not typical in the bone.
Doctors told the Davis family that this type of lymphoma doesn’t relapse and there was a 99-100 percent chance of cure. Derek received a short course of chemotherapy and by mid-June, the family was informed his scans were negative and there was no cancer. Three weeks later, Derek was at home and awoke to some neck pain that persisted over a course of a week. Derek’s father took him multiple times to the ER, only to be sent back home with Motrin in hand. “He had been out with friends paintballing the week before, so the doctors thought it was the effects of that,” reports Mrs. Davis. Even Derek’s doctor at UAB didn’t think the pain was related to his previous cancer.
During this time, Derek’s mother was in Pennsylvania attending to an ill grandmother who later passed. While Derek and his stepfather were traveling to the funeral, Derek started to become weak in his left arm and eventually lost function on his entire left side. “He just didn’t look right, he was barely moving around and this is a kid who can’t sit still,” said Mrs. Davis. The family drove the 16 hours back to Niceville and straight to the Air Force hospital; they were transferred to Sacred Heart Children’s Hospital in Pensacola. August 2, 2009, was the last time Derek has walked.
That day, total body scans revealed that his cancer had returned and was in his brain and spinal cord. Nemours Children’s Clinic pediatric oncologists in Pensacola, Jacksonville and Orlando consulted on Derek’s case to create an individualized treatment plan using evidence-based protocols. But they had never seen a cancer like this and weren’t sure how to treat it. Nemours pediatric hematologist/oncologist Jeffrey Schwartz, MD, was Derek’s primary pediatric oncologist in Pensacola; he worked many hours researching different cases.
“The doctors told us straight from the beginning that they would send us to wherever we wanted and that they had a plan to treat this, but no research stated it was the right way to go,” said Mrs. Davis. Derek had lost mobility on the whole left side of his body from the tumor in his neck pressing on the spinal cord. Eventually, this cord compression would cause him not to be able to move any part of his body from the neck down.
The family consulted a pediatric neurosurgeon who, on August 5, 2009, removed the tumor from his neck. Because there were more tumors down the spinal cord, they decided that, instead of doing surgery on those areas, they would try to use radiation to shrink them. “The doctors were trying to do the least invasive procedures,” remembered Mrs. Davis.
She felt it was clear that the medical professionals feared Derek would die. “I went through the same stages most people do,” she said. “I was sad, falling apart, then there was anger, but this is when I started to let everyone know I was in charge. I told Derek that I hadn’t given birth to him for him to decide he was going to give up, so let’s rock n roll. Let me tell you, I didn’t give him one ounce of slack. He was going to be a fighter and I was going to help him fight.”
Derek would be known as one of the most complicated cases ever encountered by many of the physicians, his Mom says. “He had unexplainable increases in his heart rate, increased blood pressures, abnormal labs that he shouldn’t have had, infections that weren’t typical, and every side effect from medications. It seemed like one step forward and 20 steps back.”
During the last week of August 2009, Derek and his mom traveled to Wolfson Children’s Hospital for a possible stem cell transplant. Dr. Joyce and Annette Dukes, RN, from Nemours in Jacksonville headed up the Bone Marrow Transplant team. Derek was admitted and a stem cell harvest was attempted to prepare for a transplant. Unfortunately, Derek was not producing the cells needed. “Derek was still in a fragile state, he had very little recovery from his initial surgery and he was constantly in pain, no matter how hard they tried to fix it,” says Mrs. Davis. “His body was so sensitive that even the air blowing on his skin made him hurt. These are things that happen when there is a spinal cord injury. So he has cancer, is immobile, and to top it off, he has a spinal cord injury with an unstable neck from the original surgery.”
Dr. Joyce brought in pediatric neurosurgeon Ian Heger, MD, with Wolfson Children’s Hospital. Dr. Heger reviewed Derek’s recent scans and decided to bring all the team involved in Derek’s care, including his mom, together to discuss recommendations on how to proceed. Meanwhile, Derek was receiving intense physical and occupational therapy and was progressing far beyond what anyone would have imagined. “All the scans showed he should be fixated to his wheelchair, but instead, he had full movement on his right side and partially on the left,” said Mrs. Davis. “He was able to sit up on his own and the focus was to get the surgery and get him possibly walking again.”
This past January, Mrs. Davis and Derek returned to Wolfson Children’s Hospital to have his stem cell transplant. He needed to be in remission before surgery was attempted to straighten his spine. They ran into another obstacle when Derek again did not produce stem cells. Dr. Joyce decided to take another approach. He consulted with Derek’s mother and explained there was a drug called Mozobil that could help Derek produce stem cells, but it had not been used on children; Derek would be the first. “They explained the side effects were pretty much the same if he was getting chemotherapy,” said Mrs. Davis. “I felt it was important to ask Derek what he wanted. From the time when we found out the cancer was back, he made me promise to always keep him informed and never lie. Derek told me, ‘I want to do it. If it can help another child in the future, I want to do it for myself and for them.’”
On the drug, not only did Derek produce the amount needed, he produced double the amount, allowing for a much faster recovery post-transplant. Derek had a successful stem cell transplant, and the cancer went into remission. Dr. Joyce said, “Derek's case was unique as he had an extremely rare non-Hodgkin's lymphoma relapse with a bulky tumor in the spinal area. Some cases in pediatric oncology are very challenging. Fortunately, we have a very talented multispecialty team of physicians and allied health personnel in Jacksonville that was able to meet Derek's needs. Our coordination of doctors from across the Nemours children's health system and Wolfson Children's Hospital, supporting allied health staff, as well as physical and occupational therapy teams, was crucial to his recovery.”
His next step was to have his neck realigned. Mrs. Davis consulted with University of Florida/Jacksonville pediatric neurosurgeon Ian Heger, MD, at Wolfson Children’s Hospital. “When his doctors in Pensacola removed the tumor, they had to take pressure off the spine, move it and take out the tumor, then replace the spine to heal,” says Dr. Heger. “He needed spinal instrumentation, in which the neurosurgeon places titanium devices into the spine to permanently stabilize the area.”
On July 14, 2010, Dr. Heger performed the partial neck reconstruction with instrumentation at Wolfson Children’s Hospital in collaboration with Nemours orthopaedic surgeon Kevin Neal, MD. Dr. Heger was able to ensure the screws were well-positioned because the Wolfson OR is equipped with a state-of-the-art intraoperative CT scan. “In the past, we’ve used 2D X-rays,” says Dr. Heger. “I felt more comfortable and confident using this CT technology to guide us as we straightened Derek’s spine.”
Following his recovery, Derek was transferred to Brooks Rehabilitation Hospital in hopes he would regain some or all of his mobility. It had been almost a year since he was paralyzed by his cancer and he still hadn’t walked. “Before surgery, he could barely hold his head up and over time, pressure and tension on the spine would’ve worsened and he would’ve lost motor skills,” explained Dr. Heger. “Walking would likely have been impossible without instrumentation.”
After only a week at Brooks, Derek was already regaining strength in his lower extremities. He was regaining function in his left arm, which the family had been told might never happen. Currently, Derek is pulling himself up with assistance and has actually walked a couple of steps. “There is so much more we need to do, but I am sure he will make a full recovery,” says Mrs. Davis.
Mrs. Davis is grateful to the pediatric oncologists with Nemours and to Dr. Heger. “They saved my child’s life!” she says. “Every time I see them, I hug them and thank them. If it wasn’t for the many specialties and the great support and care from Nemours and University of Florida/Jacksonville doctors, Derek wouldn’t be here.”
Derek has already returned to school in Niceville and his spirits are so much better since he has returned home after more than a year in hospitals. ”Our lives will never be the same, but this experience has made us stronger. For a family to make it through so many heartaches shows that it can be done,” says Mrs. Davis. “It’s just how you handle it that makes a difference.”
“We are extremely happy that Derek is in remission and looking forward to him continuing to rebuild his strength and improve his neurologic function,” says Dr. Joyce.