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| Date Entered at Shared Experience: 09/08/1999 |
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SARCOMA SKELETAL |
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My 7 year old son was diagnosed with osteosarcoma in Nov.97.
It started with a pain near his knee, which we,(and his pediatrician) thought was just a school yard injury. Weeks went by and we got an x-ray. Nothing showed up on it. A couple of more weeks and Stevie was awake in pain at night. So, we got an MRI and the tumor was classic distal femur osteogenic sarcoma. It was just unbelievable, devastating news. My wife , daughters and I were constantly in tears for the first few weeks (months, really). I am a large manly guy, and would just break out in tears at work, in the car, especially at the computer monitor while researching anything I could find on bone cancer. The Next day, after the MRI , we rushed to the children's hospital, two hours away, for the biopsy. They also implanted the chemo port at the same time. It was all very traumatic for all of us. After the biopsy, Stevie's leg began to swell and the pain became unbearable. His first chemo treatment stopped the tumor's swelling and his pain reduced. We had a hard time getting him to take his pain pills. The Oncologist and Othopeodic surgeon both suggested that most osteosarcoma patients end up with an amputation of some sort. The most common age group with this cancer is teenagers. Teens have large enough bones to allow titanium shafts to be implanted in the place of the removed bone and tumor. However, children are most often not good candidates for implants, and end up with amputations. This news sent me off for second opinions, medical research , phone calls and all. In Stevie's case, the surgeon was recommending a Van Nes rotation. This operation is where you save the leg below the knee, remove the tumor bone (knee and lower femur). Then rotate the lower part 180 and reattach it to the upper thigh bone. Why? because the ankle then becomes the new knee joint. Boy was this unusual information! Once again, I researched the internet and local medical libraries. It all looked bizantyne and strange in the b&w photos of the Journal of Bone and Joint Surgery. I tried desperately to find a child who we could meet, with this operation. There are only a couple of hundred cases in the US, so I did not have any success.
We were given the choice to have the Van Nes rotation, to have a high thigh amputation or to try the implant. It was a Sophie's Choice, believe me. Whatever we decided, our son would live with the rest of his life. I sometimes wish that the surgeon had just told us what to do, instead.
We struggle with how to tell Stevie about his upcoming amputation and then somehow explain the rotation. No one could advise us on how to break the news. We lay awake at night, going over different sentences and despairing over the resultant effect each might have. I believe that some social worker could have guided us or helped us deal with this. After all, some certain number of cancer patients have amputations. We just had to come up with the truth told in a way that made sense. The amputation was necessary to save Stevie's life. He could understand that.
He would have one leg shorter than the other, and a really cool plastic leg would reach the ground so he could walk. This made sense to a 7 year old. Now, a couple of weeks later, we told him that his leg would be turned around backwards to make it easy to walk. That was confusing, but his great attitude pulled the whole family through.
Anyway, the rotation was a success.
It took six months to heal, during the chemo. Required a skin graph, and at-home wound management. Now, he can function with a special prosthesis, much like a below the knee patient does. It looks funny, but he can climb the slide ladder at the pool without his prosthesis, something impossible with a regular amputation. That issue of amputation, rehab , wound care all loomed large and made the real survivor issues of the cancer seem somehow less important. During all this, Stevie received 22 week long intensive chemotherapies. One of us was there the whole time, and our two daughters, age 12 and 8 were often farmed out with school mates for a couple of nights each week. Stevie showed a tremendous amount of courage and his attitude has always been go,go,go.
He learned to walk in just a few days. Sometimes, we would leave a week long chemo and go straight to the beach. He would be a little sick for the first afternoon, but then he was ready for fun.
Stevie's chemo ended in November of 1998. Since then, he has continued with school (he kept up with his classes, due to a county provided tutor). He has outgrown one prosthesis, and since our insurance only provided one, we were faced with a $10,000 prosthesis. I saw the Shriner's ad on an 18-wheeler and called the 800 number. Four months later, Stevie has a brand new leg, all provided at no cost to us. The Shriners are a fantastic group with 22 orthopedic and burn hospitals throughout the US, Mexico and Canada. They are great! We know that we would have used our credit card or whatever, if we had to. But we didn't have to! Thanks to this wonderful Shriner's organization.
Stevie is still getting bi-monthly x-rays and CTscans, looking for lung mets. So far , so good. The 18 month period after chemo ends is the critical time for recurrence, so we are still not out of the woods. Our philosophy is don't worry unless you have something real to worry about! My wife has started a local chapter of the Candlelighters Childhood Cancer Foundation for North Alabama. We have a board of directors, lawyer, accountant, etc. and are just beginning to help cancer families with emotional support. Our goal is to raise funds for financial support. Many families, like ours, working for small businesses, have got slender health plans, and just the incidental costs of travel, etc for treatments, not to mention high deductables, co-pays etc. can all strain a normal middle-class family budget. That is our target group but we want to help any childhood cancer family in our area.
The national number for Candlelighters is 800-366-2223.
Thanks and please don't hesitate to email or call me.
-Tom Leach |
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