Cutting the tumor out is vital--without that his chance of survival plummets. The tumor is about the size of a tennis ball and it is in the top of his tibia, over the growth plate. The entire top of the tibia must be removed. There must be a wide enough margin to make sure all of the cancer is gone.
In the U.S., most patients with a tumor near their knee will choose to have limb salvage surgery by replacing the damaged bone with a metal prosthesis. It would be placed inside their leg, attached to the healthy bone. This is called an endoprosthesis. This is similar to a total knee replacement, but different because it involves replacing even more of the bone. The advantage of this surgery is that the leg looks normal. A couple of the disadvantages are that activity is limited in order to preserve the joint and there are often complications that arise from infection.
The limb salvage procedure becomes more complicated the younger the patient. The metal bone needs to be small enough to fit in his leg, but large enough that it can support a grown teenager. (The endoprosthetic usually needs to be replaced when the child is full-grown.) If it becomes infected and can't be controlled by antibiotics, then the leg would be amputated.
Another major obstacle in Steven's case is the location of the tumor. Because it is on his tibia, it makes the limb salvage more complicated and increases the chances that it will fail. If it were to succeed, he would end up with a weak leg because they would use some of his calf muscle on the front of the leg. The doctor thinks that in Steven's case, the chances of a successful limb salvage are between 25-50%.
And so, after a lot of research and prayer, we have decided on a form of amputation called "rotationplasty." It is hard to explain, so watch one or both of these videos and you will see what I am talking about:
You can see why we don't make this decision lightly. Although Steven isn't particulaly athletic, he is an average, active boy. Running and jumping are just part of the program. And who knows what he will be like 10 years from now? With a rotationplasty, he will have more choices.
And what does Steven think? He is sure that rotationplasty is the right choice. He made his decision based mainly on the conversations we've had with his surgeon. He says he doesn't care what people will think of him. I asked him why he wants to have rotationplasty and he said, "Well, first of all I will be able to do more things with the rotationplasty, and also I hate the hospital and don't want to have any more surgeries than I have to, and also because it is what the doctor recommends."
And so there you have it. The surgery isn't scheduled yet, but it should happen at the beginning of May if all goes well. He'll be in a cast for 6 weeks and then should be walking withing 3 to 6 months and hopefully back to normal activity within a year. As weird as it looks, it really is amazing that this is even possible. It is functionally preferred over a normal amputation because you have your own joint and a longer leg to operate the prosthesis. Also, the nerves are connected so you don't get the phantom nerve sensations associated with amputations.
The price of rotationplasty is that it looks strange. At best people will stare at him, at worst they will bully him. It will not be easy. He will have to relearn how to walk and then find the courage to be different. I hope he will push himself to new heights and find a strong sense of self as he overcomes this very difficult obstacle.
But any of these surgical options come at a price. And it is a price we are willing to pay to preserve his life.
If you want to learn more about rotationplasty, here are a few links we found that helped and inspired us in our research.
- Video of a boy who had rotationplasty
- "[The study] concludes that, for children younger than 10
years old, rotationplasty should be a recommended alternative to tumor
prosthesis due to the high risk of prosthesis-associated
Rotationplasty—a unique surgical procedure with a functional outcome
- A follow-up study of seventy rotationplasty patients