Kyle’s Story

Ewing’s sarcoma at the spine
Age at Diagnosis: 16
Date of Diagnosis: 1986
Hospital: University of Kansas Medical Center
Team: Dr. Sarah Taylor and Dr. Burton

Diagnosis: I first went to the doctor in 1986 complaining of numbness and soreness in my left elbow. They took an x-ray of that arm, and happen to catch the left side of my spinal cord in the film. The doctor was able to see that there was missing and degraded bone centering around my T1-C7 spinal column.

Treatment: I was referred to KUMED for diagnosis and treatment. They did a biopsy which confirmed Ewing’s Sarcoma. For treatment at the time I was on alternating rounds of Cytoxin, Actiniomyacin, Adriomyacin, and Vincristine. I also did Radiation for 9 months concurrent to the chemotherapy. By the time my high school graduation came around in May of 1988 I was free and clear. At least for the next 15 years.

Recurrence: In September of 2001 my back started hurting in the same area. It soon developed into excruciating pain. I went to the emergency room at KUMED, told them of my previous condition, and they did a chest x-ray, gave me a couple of vicodin said I was fine, and sent me on my way. Two days later, I walked, or rather hobbled myself to the cancer center there, where they confirmed through an MRI that there was a problem again. This time I had a biopsy, which confirmed it, and five other surgeries to relieve pressure and remove scar tissue from my spinal cord.

The first time had me maxed out on radiation and most of the chemotherapies that I had previously been on, so this round I was on Ifosfamide and Mezna. I have had countless MRI’s bone scans, gallium scans, Ct’s and X-rays over the years. To be quite honest the thing that got me through this last time was the narcotics they had me on. I was in excruciating pain so the dilauded certainly helped with that, but it also made my feeling numb as well, and let’s just say, I didn’t get really emotional during that time.

Because of all the surgeries this time I lost my ability to walk, and I had to teach myself to do that over a period of nine months.

Everything slowly got back to normal, and I took a really long vacation after everything was said and done. After that I got back to working full time again, and just went on with day to day life.

Life now: Everything was going fine until about six months ago. I started having some minor pain in my back which was determined to be a compression fracture by an MRI scan. I got help with the pain, but it quite never went away. Over the last five days, the pain has become excruciating, and last night I finally went to the emergency room. This time, they sent word to the Oncology team and one of the oncologists, Dr. Flemming came down and ordered an immediate MRI. I found out this morning that there is a mass outside my spinal cord on the left side causing pressure on the surrounding nerve clusters. The oncology team is coordination with my orthopedic surgeon, Dr. Burton. Looks like round three is coming up.

Thoughts and Hints for Patients: I really don’t have any helpful hints, or lessons learned or inspirational thoughts. For me this has been a lifelong battle, and it doesn’t seem like it’s going to end any time soon.