In the spring of 1997, a sore on my right ankle wasn't healing properly. When my family doctor put me on oral antibiotics, I thought it would be healed within the month. I continued taking that medicine even after a month passed without improvement of my ankle. As time passes, another doctor would change my antibiotic and show me a different method of mending my ankle, which I continued doing despite the unchanging condition of the sore.

By December of 1998, I was becoming really sick. I was tired. And had no energy. Soon I found out about an internal infection in my neck/shoulder area. When I was put in the hospital, my blood count was found to be 7.5 a dangerously low level, which explained my constant fatigue. My family doctor started me on IV antibiotics and began occupational/physical therapy on my ankle. After three days in the hospital I was forced to leave, as my insurance company claimed that I didn't need the medical care. This unfortunate turn prevented the infection from improving and led me to be in and out of the hospital three to four times within six weeks as the infection ran up and down my neck.

As this was going on, my ankle was not improving despite the occupational therapy. Finally, my family doctor sent me down to I.U. Medical Center in Indianapolis with a referral to an infectious disease doctor, who was able to take care of my internal infection.

While there, I requested a dermatologist to get involved with my ankle. Several doctors had been examining me until one asked an unforgettable question. "Has anyone told you, you have a risk for cancer?" No, no doctor had ever said that to me before.

As the infection in my neck/shoulder was improving I had a biopsy done on my right ankle. A few days had passed before they called with the results. I had Squamous Cell Carcinoma, Cancer (SCC). I was told to see a plastic surgeon within the next 10 days. I was in the clinic with that surgeon for only ninety minutes when he said that this was so serious that I might loose my leg. Those words were like a death sentence to me. I could want nothing more than just to survive, to get through this.

If the cancer had spread to the bone, I decided to have the leg amputated. No one was able to say if an EBer could withstand the chemo and radiation needed to fight SCC. I decided that losing my leg would be better than taking the chance of chemo since I was already so small, weighing only 103 pounds at 5' 4". While the tests to determine if it had spread to the bone came back negative, there were no guarantees until they were actually doing the surgery. Those three weeks before surgery were the longest weeks of my life.

The first surgery was long, about four to five hours. The cancer was not found in the bone but only 1 mm away. The doctors had to take much of the good part of my leg and ankle to get all of the bad area that was affected. The second surgery worked on increasing the leg muscles, which had been removed, while the third surgery was needed to remove the pins holding my leg and ankle together.

My hospital stay spanned five weeks. Though I knew the recovery time would be long as I had three major operations and four days of radiation, a non-medical breakthrough made a world of difference in my recovery. My transporter after the first surgery looked on my chart and was compelled to ask about my EB. She informed me that someone who worked in the hospital, Kathy Crecelius, had started a DebRA chapter in Indiana to give support to EBers, and that Kathy had a son who was about 6 years old with EB.

Within ten minutes Kathy Crecelius was standing in front of me. I told her that until that moment in my life, I had only met one other EBer, my friend Jill. I met Jill about eleven years earlier while recovering from hand surgery. However, I lost contact with her and was amazed to learn she was in Kathy's support group. I was overjoyed to be able to find Jill and a support group after living alone with EB for 32 years with my home and work comprising my support system. At that point I was just grateful to have something to think about other than the feeling of pain and the uncomfortable splint like cast my leg was in.

Jill came to visit me in the hospital. I was caught off guard by her visit but knew who she was immediately. I was so happy to have someone else to talk to and we spent over two hours talking that day. We discovered that we shared the same dermatologist at Riley Hospital. Jill informed that this dermatologist told her that any sore which wouldn't heal could possibly be cancer and needed to be checked out. While he had informed Jill of such a possibility, nothing of the sort had ever been mentioned to my mom or me-my illness was quite a shock to my family and me.

I'm recovering from cancer and have had no internal infections for 3 months now. Since December of 1998 my medical cost have been $250,000 and counting I'm thankful for having medical insurance at work, and have been lucky to get most of my medical costs written off in addition to some financial assistance from other resources. But I don't wish this disease on anybody especially those alone.

However, I feel like I went through my illness for a reason, and God was watching over me, putting me in a direction I needed to be in, Jill and her husband Ken have been a big support; they gave me an extra computer they had. Jill found a support group online as well as other EBer homepages. Since then my life has changed for the better. I had plans and God changed them for a reason. I know I have gone through a lot of bad with my illness in the last year and a half, but so much good has come out of it.

While on-line one day I saw an invite to DebRA's "EB-Family Reunion at Walt Disney World" and hoped I would be well enough to go. Walt Disney was right, dreams can come true, as I was able to go to Disney and can not express the wonders of that experience. Never could I have imagined not only meeting so many people with EB, but also discovering what good people they were and what friendships I would leave with. I have to thank Randy and Lorraine Cameron for putting the trip together. It was such an inspiration to see so many others with EB having fun, learning from each other and making friends. It is a great feeling to know that I can offer hope to parents and EBers: hope for the future, gaining independence, surviving cancer and most importantly enjoying the good times that life has to offer like friendship (and amusement parks).

I will be living in my own home through Habitat for Humanity by the next EB Disney Trip in 2002. I know I'll be there and hope you will too.

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