Cancer Center

Pediatric Malignant Nerve Sheath Tumor: Kelsea's Story

A likely fatal diagnosis led to removal of this young woman’s malignant nerve sheath tumor and ongoing creative approaches to her care.

Kelsea Henderson, 18, of Elmer, NJ, started having pain in her side when she was 13 years old, the summer after 7th grade. The pain was very inconsistent and mom, Pam, chalked it up as growing pains. Kelsea

The pain continued through the summer. Soon after school began, during a slumber party, she experienced unbearable pain that could not be ignored. Her parents took her immediately to the hospital. A CT scan showed a mass on Kelsea’s spine. The physicians referred her to The Children’s Hospital of Philadelphia where the family saw pediatric surgeon Dr. Michael Nance and pediatric oncologist Dr. Jean Belasco of the Cancer Center. Kelsea was admitted immediately.

The first biopsy of the mass showed that the mass was benign, but a follow up thoracotomy showed a change in the appearance and that it was cancerous. Pam says this is where the roller coaster ride began.

Kelsea was diagnosed with malignant peripheral nerve sheath tumor on her chest wall that was growing into her spinal canal. These tumors are very aggressive and usually fatal within a year or two. Some are curable with complete removal.

Kelsea initially had the tumor biopsied and was treated with chemotherapy. The tumor responded better than usual and she had another operation by Dr. Nance but he couldn't remove the entire tumor because it was going up and down the spinal canal and growing in towards the spinal cord. She received radiation and chemotherapy and the tumor wasn't progressing as rapidly as usual.

Her oncologist, Dr. Jean Belasco asked if Dr. Philip Storm, pediatric neurosurgeon at Children’s Hospital, thought that he could remove the tumor and he thought that it may be possible with an absolutely heroic procedure. Her family understood that there would be a high complication rate, mainly because of the radiation, but they knew the risk of not operating was a death sentence.

Kelsea received a very long midline incision in her back and then Dr. Storm removed a large section of ribs 4-10 and all of the bone on her left half of her spine. He then removed the tumor from of the aorta and spinal cord and tied off the arteries from the aorta to the spinal cord and the nerve roots from T5-T10. An MRI the next morning showed the entire tumor was out, but now her spine was very unstable and she had a huge chest wall defect. The next day Dr. Storm fused her spine from T1-T12 and Dr. David Low, a pediatric plastic and reconstructive surgeon at Children’s Hospital repaired the chest wall defect.

Kelsea did well for about four days and then she had some complications. The chest reconstruction got infected and she needed multiple washouts and the construct had to be removed. They couldn't remove the hardware and tried to treat it with antibiotics. Due to the radiation, her lung never healed and she began leaking air out of a hole in her back. That's when Drs. Low, Storm and Dr. Daniel Sterman, chief, Interventional Pulmonology and Thoracic Oncology at the Hospital of the University of Pennsylvania got creative.

On Jan. 3, 2008, Dr Storm removed her infected hardware, and Dr. Low took a piece of skin and muscle from her flank, kept the arteries and veins intact and put it in her chest and plugged the arteries and veins to arteries and veins in her axilla (armpit) using some of the muscle to fill her leaking chest and some of the skin to reinforce her compromised back skin. Dr. Sterman got compassionate use from the FDA to put one-way valves in her lungs that would allow the air to go into the lung that was communicating with the skin. The valve procedure was performed in concert with Dr. John Kucharczuk of the Hospital of the University of Pennsylvania Thoracic Surgery and Dr. Colin Gillespie, clinical assistant professor, section of interventional pulmonology and thoracic oncology.

After the operation Kelsea still was leaking air and within 2 weeks she called and told Dr. Storm that she was now shorter than her sister and she "heard her ribs crunch" when she walked. She was not fused and developed terrible scoliosis and kyphosis. She was admitted that day and put on bed rest until Drs. Low and Storm could figure something out. Because of the radiation her bone just wasn't healing.

On January 31, Dr. Low and Dr. Storm took her for a 25-hour operation where they replaced her hardware -- 24 titanium screws and two large titanium rods, repositioned her muscle flap to better fill her left chest cavity, and harvested her fibula bone from her leg to reinforce the weakened spine (called a vascularized bone graft). This required microsurgery, including harvesting her saphenous vein from one of her legs, in order to connect the vessels from her fibula to the nearest vessels in her axilla. Dr. Low reconnected the blood supply to the fibula to keep it alive -- having a living fibula allows the bone to grow into the rib cage and give it support. Dan Sterman then blocked more bronchi in the lung.

When she was finally able to go home, she simultaneously made up the work she missed during the third marking period during the 4th. She was diligent about physical therapy and went three days a week.

She is very proud of her scars and wore a dress to the prom last year that showed off her back scars.

She is now complication free, tumor free and has no air leaks or any problems. She is a beautiful girl who is an honor student. She is planning to go to St. Joe’s University on a scholarship for cancer survivors. Through this ordeal she was pleasant, up beat and never once complained. She was always smiling and quickly became one of the team’s favorite patients.

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