Where were you one year ago today?

One year ago today was the scariest day of my life. I know I've written some about the day Steven was diagnosed, so I apologize if I am being redundant, but now that I am a year away from it, I need to write it down. It is one of those days that totally changed my world and many of the details are etched in my mind.

The night before, I finally actually saw Steven's swollen knee and knew that it was more than him faking a limp. (Yes, that was one of the explanations I had for his limping--I'm that cool.) I sent the boys off to school the next morning and started on my morning chores. I wasn't thinking much about his leg, but when I noticed that it was past 9:00 and the doctor's office would be open, I called and described his symptoms to the nurse. I felt sure she would tell me not to worry about it (and I wasn't really worried about it), but instead she said the doctor could see him that very morning. I headed up to the school to pick him up and took the girls along.

Dr. Schmidt examined him and ordered an X-ray. Through this all, I had no inkling that anything serious was the matter. In fact, even after the X-ray when he asked us into his office and offered that his nurse would entertain my girls, I had no clue that my world would be turning upside down. I wondered if all the exam rooms were full--it didn't look too busy. The nurse handed the girls some paper and crayons and the doctor very somberly told us that the X-ray revealed a bone tumor. He asked if I would like to call my husband. I was really confused--what causes bone tumors? He was using words like "malignant" and "benign", but cancer really didn't cross my mind at all. I still can't decide if it was the classic denial response that often happens in a diagnosis, or if the concept of cancer in my child was so beyond any thought I had ever had that I couldn't connect the two. Or maybe it is both and that is how denial happens.

He asked us to wait while they called Primary Children's hospital and made an appointment for us for that very day. We went into the waiting room and I tried to wrap my mind around what was happening. At this point, I still had no clue that we were looking at cancer. Just the week before, my sister had confided to me that she had found another melanoma tumor after over three years of being cancer free. She still hadn't told many people, including our parents or her kids. She was still waiting to see what the extent of the cancer was. I texted her: "I'm at the doctor with Steven. He has a bone tumor. Not sure what it all means." She says it is the worst text message she's ever had. I didn't elaborate--I needed to let Steven play tetris on my phone while we waited. She and my mom headed toward my house to meet me and take the girls while we went to the hospital. Alisa felt like I needed to be better dressed for the appointments and after finding that I didn't have anything cute clean, she traded me shirts and decided it would have to do.

Finally, we had an appointment and the post-it note with the info on it (Hematology/Oncology 4th floor) was my first clue that they were thinking cancer. I think it is there where my memory starts to cloud up. Rob met us somewhere--I think at the hospital, I don't remember. Someone took my girls, probably Alisa, and my mom ended up coming to the hospital at some point, too. Steven and I must have gone to the clinic and later met my mom and Rob because I have video where we are alone and waiting. We later went downstairs for scans and an MRI. And then back upstairs to meet with doctors. My dad came as well. At one point we had Steven, my parents, Rob and me plus a resident and a doctor all in the little clinic room. I was feeling self conscious because there were signs everywhere discouraging family gatherings at the clinic, but their support meant the world to me. I felt like my foundation was being yanked away.

After discussing chemo at the clinic, we went over to the orthopedic clinic to meet Dr. Jones. By this time, it was after 5:00 and all the patients were gone. We had our little entourage, and he also had a resident with him, so he invited us to just talk with him in the waiting room where there were chairs for all. The way he talked really put Steven at ease. Dr. Jones explained that the chemo would be like taking a sledge hammer to the cancer--and afterward Steven like to explain chemo with that image. I remember my parents telling Dr. Jones about Alisa's cancer and confidently explaining how she was NED. My heart was breaking for them because they were about to find out that it wasn't so and I was having a big taste of what it feels like to have a child with cancer.

We came home that night to a clean house and pictures and cards from my kids and Alisa's kids. Yes, now that I write this, I am remembering that she must have had my kids. I couldn't sleep much that night as my mind raced with fear and anxiety. The next day Steven needed a biopsy to confirm the diagnosis. We were to report for surgery around lunchtime, I believe. I sent him to school the next morning. Looking back, I can't believe I did that. Maybe it was the denial, or maybe I was starting my personal fight to keep our lives as normal as possible. At any rate, I believe he even told his class what was going on. I don't remember.

And the rest is well documented on the blog. In July, my cousin, Eric, made a video for a Relay for Life event and included a section about Steven. I have been wanting to post it for a while now, and I think today is a good day to finally take the time to do it because it includes some video from the first few days of diagnosis. The part that shows Steven reading a book, waiting in the clinic is so hard to watch because all the feelings of that day rush back to me. Steven really won't watch that footage--it is just too hard.

I don't really know how to take a day like today. Do you celebrate or mourn? I don't feel like doing either, so instead I will just remember.

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.

• www.rotationplasty.com
  
  
• 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
  complications."
  Rotationplasty—a unique surgical procedure with a functional outcome
  
  
  
• A follow-up study of seventy rotationplasty patients