Friday, May 13, 2011


I have long been trying to muster the energy to recap the details of the surgery. I should clarify--the details of the surgery according to me. Keep in mind that I have no medical background and I have been the stressed parent listening to the doctors, so if I say something wrong, I'm sorry. I will do my best. Also, you may want to pass on this post if you get squeamish! I will tell you what I know about Steven's rotationplasty.

Before the surgery, we met with the surgeon to clear up any concerns and also so that he could measure all of us. He needed to estimate how tall Steven will be, and how long his femur will eventually be. He figured out how many inches taller than average Rob and I are, then he averaged that number. I believe he did the same with our femur length. He told us that 2/3 of the growth of leg comes from the two growth plates that Steven would be losing, and 1/3 comes from the top of the femur and bottom of the tibia combined. That had to do with the calculations as well. I'm not even sure what the final number was, but whatever it was, he is counting from the center of motion of the ankle, so it looks farther out than it functionally is.

That morning, we went to the hospital and the doctor came and signed the leg with the tumor. His surgeon would be the main one working, but he would have an orthopedic fellow and a resident assisting him. Steven didn't seem terribly worried. The nurses offered him some kind of relaxant like Atavan, but he said he didn't need anything. He had his electronic stress control, the iPad to keep him company. We walked down to the hall to take him to the OR. The anesthesiologist had to remind me to give him a hug. Yes, I am that good of a mom. :) Steven was talking to the anesthesiologist up until he went to sleep.

I think that my biggest fear during the whole surgery was whether or not he was operating on the correct leg. It was one of those "did I turn the iron off" kind of obsessive/compulsive worries. I even made Rob ask the nurse during the surgery if he was operating on the right leg. The nurse would call us every 2 hours or so with updates. The doctor had strongly recommended that we not stay at the hospital all day. I thought I would be able to for at least most of the day, but it turned out that I could hardly stay there at all. I wish I could say we did something amazing during that time. I went home and showered, exercised, straighted up, packed. Rob stood vigil. I came back and we went out to lunch with Rob's dad. I talked on the phone a little. He played with the iPad. Later, I went shopping with my sister and he went to get a CD player installed in our van. We then went out to dinner with my parents. I was shocked that I was able to eat that day. I was mostly pretty calm all day. After dinner that changed. My dad stayed to wait with us. We were the last people in the waiting room and around 6:15, the nurse told me that they were just finishing up and the doctor would be in shortly. I believe it was more like 7:45 when he came in. By then I was ready to crawl out of my skin.

What a relief when we finally heard him coming into the room! His big smile melted away my anxiety. He said, "It couldn't have gone any better," and that Steven would recover in the ICU. I will try to describe what I know about the surgery, but like I said, I may be wrong.

Most of the time of the surgery was spent dissecting out the veins and nerves. These were kept intact, not cut. There was some question with one of the nerves whether it would survive because it was so close to the cancer. Luckily, there was a 2cm margin and the surgeon was able to save it. When the nurse called me at 3:30, she said they were still in this phase of the surgery but that they were getting close to finishing that. The nerves are very small and it is a very meticulous work.

Once this was done, they could cut out the bone. I am thinking that the dissecting included taking out the muscle surrounding the bone, but I guess no one ever told me. The bone was cut just about the knee, and then wherever they calculated they needed to cut on the tibia to make the limb the proper length. Once the bone was taken out, they rotated the foot. He bored holes in the femur to fit the tibia and the fibula. He used a metal plate and 5 screws to secure the bones together. Those will be there for life. I'm not exactly sure the order of the next things, but the muscles were sewn together with non-dissolvable sutures. The slack in the veins and nerves were kind of bundled in a switchback sort of pattern. They used a flap of muscle from his calf to cover up this "bundle" of nerves and veins. For a while, there will be a bulge on his leg from this, but it will eventually atrophy and smooth out. I have not seen the leg under the bandages, but the doctor tells us that there is only one incision that circumscribes the leg in a circle. The soft tissues are stitched with dissolvable sutures.

This morning when the doctor looked at Steven's leg, he decided that the swelling had subsided enough to cast it. At first, it was just very bandaged up. As far as the cancer goes, he said that the tumor seemed hard, which is good, but other than that he cannot tell how it responded to the chemotherapy. He took it to pathology who will use a band saw to make about 20 cross sections. They will then decalcify the specimens and examine them carefully to see what percentage of the cancer cells have died. If there is 90% necrosis (cell death) or more, it will be considered a good response. He will then have 20 more weeks of the same chemotherapy regimin that he has already been on. If there is less than 90% necrosis, Steven will need to do 30 more weeks of chemo, and they will add two new kinds of chemo onto the schedule.

So, there is my best attempt to explain. Please let me know if you have specific questions and I can see if I know the answer. I am literally amazed that this is even possible. I'm thankful to the surgeon--he is my hero. I am thrilled that the cancer is gone. Rob said it was hard for him to first look at Steven in the ICU, but it didn't take long for him to become accustomed to his new leg. I don't know why it wasn't hard for me. Maybe because I have watched every rotationplasty video on Youtube four times and I've poured over Google image rotationplasty images. Or maybe it is unconditional mother love or God giving me strength.

I am so happy to have Steven home with us now! It just makes life so much easier to have the family together instead of scattered throughout the valley. Steven is doing really well--he is crutching himself to the bathroom and really is acting like himself again. (He tends to get kind of agitated when he is in pain.) He will have an appointment in a week an a half where the surgeon will decide if he has healed up enough to start chemotherapy again.


  1. It's good to hear that you're home and that Steven is doing so well. I'm amazed that he's up and around already.
    Sonja what were you packing for? Are you going somewhere? You've got me really curious here.

  2. Alison, I was packing for the hospital and to send the kids to their various babysitters for the week. I wish I could say it was Mexico!

  3. It sounds like things went as well as they possibly could have. I'm so glad that Steven is doing as great as he is. He really is my inspiration. He amazes me everyday (as do you and Robert). It was wonderful to visit with you all. I'm happy you can be home now.

    By the way, your surgeon is my new hero too. I can't even performing an operations that long and that meticulous!

    Thanks for filling us in on all the details. Love you all.

  4. WOW!!! I am so glad we live in a time where this kind of thing is possible! Steven is truly amazing to me! I admire his faith and courage! Though I am not shocked he has those qualities because I know his amazing parents!! I am so happy he is doing so well!! Estamos mandando muchas oraciones y amor de Vegas a ustedes!!

  5. Sonja, you are my hero. I sit here and think of all the things that are wrong in my life right now and nothing, NOTHING can compare with your strength, your love and your faith. I hope you gained some weight by eating, that should be a goal for you to at least not loose any! Wish I could say the same. Our prayers, thoughts and best wishes to ALL of you. A Green cast?

  6. I guess I didn't know what to expect but I'm shocked/thrilled that he is home and getting around on crutches. That is amazing!! We sure love you guys! And we will defintitely be thinking about you during our 'i HATE cancer POINT 5k' tomorrow!!

  7. He looks great! Glad you are home.

  8. Steven you were a great patient. Thanks for letting me bug you and sit with you at the hospital. Keep it up. Love you all!!

  9. dear steven,
    you are very, very brave. I think you are the most bravest cousin I've ever had. I hope that your hair will grow back in.
    Love, GABI

    Dear Steven,
    I hope that you are OK now and that you hair will grow back soon.
    Love, Maiya

  10. What? He's already home?! Wow! Cool cast Steven!

    Sonja - great job explaining all this! I was wondering how all the nerves would work - now I understand. YOU are SO strong, with the Lord's help I'm sure. We're praying for your entire family.

  11. Wow. That leg looks amazing! I'm glad you're all home again together.

  12. Congratulations. I am so glad everything went well. I was wondering about the nerve situation, I doubted electrical tape would work well on getting those bad boys back together.

  13. I'm so glad you guys are home! Thank you for posting all the details. Ivan and I have been keeping up. I think you guys are so amazing and Steven is a rockstar. We are still praying all the time.
    Love you guys!

  14. That surgeon is my hero too.

    We just have to ask, Steven, can you wiggle your toes in that cast?

  15. I'm so glad to hear you're doing well, Steven, and that everyone gets to be home.

  16. Amazing!!! Still thinking about you daily!!!

  17. We are friends of some of your family members and I have sent a link of this blog to all of my family members. Steven is the sweetest boy I have ever seen. I can't even tell you how you and your perfect son have touched our lives. Our 4 year-old daughter was born missing her left hand and it has blessed our family in ways that are unimaginable. Our prayers are with you. You all are simply amazing!!!

  18. Many thanks for sharing the details of this amazing operation. We are thrilled it is working out so well. You are in our prayers.