We shall not fail or falter; we shall not weaken or tire. Neither the sudden shock of battle nor the long-drawn trials of vigilance and exertion will wear us down. Give us the tools and we will finish the job.
Sir Winston Churchill
dx. July 2007, osteosarcoma
Rotationplasty Oct. 2007, University of Florida, Shands Hospital, Dr. Scarborough
First, let me tell you how very sorry I am your family is going through this. Having said that, there are so many things our family has received since Sean’s diagnosis that I would not give back - from the love that has showered us to the life lessons learned that we would never have gotten if not for Sean’s cancer to the knowledge that our family is capable of accomplishing anything. I hope the same for your family.
The decision concerning Sean’s rotationplasty surgery was an easy one in some respects and a very tough one in others.
Initially, I was shocked at the doctor’s suggestion of rotationplasty – never heard of it, and how weird and strange it sounded. It was the function part that got my attention. Sean is the type of kid who cannot sit still and never has been. I knew how much his sports meant to him and how much participating with his friends meant to him. I hope when he gets older he will be able to tell us we did him well. I recently asked Sean, during one of those moments of quiet, was he glad we chose rotationplasty. His reply, without hesitation, was "yes."
Another big component choosing rotationplasty over limb salvage was the limitation factor. The comment that took my breath away was when the doctor suggested Sean would have to stay out of the ocean if he had limb salvage because of the risk of a strong wave breaking it. I know this many sound trivial to some, but not being able to play in the ocean was just not fair and having spent our summers at the shore, not to mention falls, winters and springs, I just didn’t know how I would keep that little boy out of the water. When doing research I came across an article on Edward Kennedy Jr who was diagnosed with osteosarcoma at 12 and had his leg amputated. He said there were so many things he was able to experience in life that he would never have been able to do if he went with limb salvage. I took that as confirmation that life after this diagnosis and surgery would be OK.
Another big factor was that we did not do hospitals well at all. I know no one probably does, but if we could spare Sean hospital time due to complications with a knee replacement then we really needed to research rotationplasty and talk to those who had it. And we did just that.
We also talked about the possibility of going ahead with limb salvage and seeing how things went – since there was no going back after rotationplasty. John was leaning more toward that then I was; as the mom, I wanted Sean to experience the least amount of pain possible. But then Sean said he wanted to have rotationplasty. I think that conversation really solidified all of our discussions about surgery and the whys behind our decision. Although Sean was not the ultimate decision maker, his opinion was important.
My dad told me when I was having major doubts one night that whatever decision we made would be the right one because we did our homework and trusted in ourselves and Sean. I have never looked back and either has Sean. While things are good now they are not easy and rotationplasty is not an easy surgery, recovery, or adjustment. We have come a long way since October 2007. I worry about his gait and future aches and pains. I worry about his frustration level and when he will be able to run (he started running in January 2009). I am scared about his adjustment periods after he gets a new leg – there has been pain after each new leg.
Today, six years since diagnosis, and after tons of research and hearing from other parents, I truly believe rotationplasty is the way to not only rid your child of the cancer, but to give them the most function for a lifetime. I am not one to tell others what to do, we all ultimately make the decision that is best for us, but given the struggles with complete amputation and complications with limb-salvage, rotationplasty is a true miracle.
Over the years, I learned that with complete amputation there can be various complications, sensitivity/skin issues, since the upper thigh is not meant for weight bearing like a foot/heel. Rotationplasty patients, who are considered below-the-knee amputees, usually do not have these problems. A comment that has really stuck with me came from the aunt of a little girl who, in the end, chose limb-salvage. “Her expandable endo-prosthesis (limb-salvage) failed though, so she is in the hospital where she had surgery to replace it with an adult device. They have had many, many problems with the repiphysis. People should look to you and your amazing story when contemplating surgical options.” I was so sad after reading this knowing how much pain that little girl was enduring.
Since surgery, Sean has played basketball, football, wrestling and lacrosse. He is living the life God intended and is cancer-free.