Monday, April 11, 2011

Rotationplasty

Cancer has brought all kinds of new decisions to our family. Little ones like, 'how much TV should a sick kid (or his well siblings) be allowed to watch' or 'should we get a dog?' Big ones like 'should we buy a house and/or a different car?' We are facing probably the biggest decision of all right now--'what kind of surgery should Steven have in order to re-sect the tumor?'

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.

19 comments:

  1. Paul already sent me all of these links and I find this whole idea fascinating. I know why it is a difficult decision for you Sonja, but I think Steven is a very smart young man. His reasons are very clear and reasonable. Good on ya, Steven.

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  2. I can't imagine having to make this decision, but I think you've made a good one. Modern medicine is pretty amazing, and Steven will make the best of this. I know it!

    Love you all.

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  3. Oh my goodness, that is amazing!

    Steven is one of the smartest kids around, and if he thinks this is the way to go-then I totally believe him.

    Let me know what I can do to help in the next few months. We're still praying every night for your family-but I am only 10 minutes away at any given point! :-)

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  4. One thing I have learned is that God blesses His children with an extra measure of courage and strength- even unbelievable strength. I know that Steven will thrive with whatever the outcome because God can't wait to shower him with blessings for being such a faithful and valiant young man. I have seen this phenomenon in my own kids. You will be so amazed! It will be an exciting and adventurous future that's for sure! Keep on keepin on... I can't even imagine what it's like to be you. I really admire your strength.

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  5. WOW! THat looks amazing!!! I am so glad that Steven will be able to do those things! You guys are in our prayers and thoughts more than you know!

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  6. I think this is a great option. I also think it is a great price. Steven will take it like a champ!

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  7. Steven's reaction to this is inspirational and shows what a strong kid he is - really amazing.

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  8. We are so blessed to be living in such a time where technology is amazing! I was just in awe watching those videos. I agree with the others who said Steven is a smart kid, and he seems to KNOW what he wants! Way to go Steven!! And remember we are here to help in any way!

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  9. We have also seen some of those links before. I think the rotationplasty is absolutely amazing. I would do that too. It seems like it definitely gives him more choices, huh?

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  10. Sonja, I am so glad you got the package! I was afraid the chain might be a little overwhelming but we did enough links for something like 40 weeks but he will need to tear off a bunch for what he has already done. Someone made one for my daughter and it has become a fun thing. I hope it cheers him up. Hang in there! Let me know if there is anything my kids and I can do further to help you guys cope. Kath

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  11. congratulations on making such a hard decision! I know God is with you on this. It will all work out somehow.. it's that leap of faith into the darkness...

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  12. That is absolutely amazing and great that it will give Steven so many more options as he grows up. What an amazing family you are.

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  13. Great decision! Great courage! Great future ahead!

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  14. Wow! Rotationplasty is amazing . . . when showing my kids what Steven is going to do, Claira says, "I want a cool leg!" You continue to be in our prayers with this monumental endeavor . . .

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  15. Steven! What an amazing day and age we live in when doctors are able to do such great things! I think only the most awesome boys will have what you have! you are awesome!

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  16. Wow! This is truly amazing. It is wonderful that a surgery like that can be done!! It does look like the best way to go. I'm so proud of Steven and impressed by his courage. Way to go buddy!

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  17. I am convinced Steven will find the courage to be different. He is an amazing and smart boy. I often think of the time Steven was probably 4 and he let you know whenever you were going over the speed limit - smart boy is an understatement. We wish you all the best in the coming year with this new stage of your life. Your family is amazing and I know will be blessed.

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  18. Amazing! You're all in my prayers.
    Love, Darlene

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  19. My son was born with a condition called proximal focal femoral deficiency (he doesn't have a femur) and had the rotationplasty was he was 5 years old. He plays competitive hockey and baseball. He is an amazing swimmer, rides a bike and skateboards.

    I hope the surgery went well for him and he is doing well. If you would like to talk my email is nettesings2gmail.com

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