The Whys Behind Bailey's Decision

While we do not feel as though we owe anyone an explanation for our choices, we do understand that there are many who know and love Bailey and truly care about how we arrived at the place of choosing what appears to be a very unusual surgery. We also understand that people may be stumbling upon this blog after discovering that their own child has this insidious disease. We are learning much from others who have walked this road, so I am trying to be very thorough in sharing information in case it can be of assistance to someone else who may faced with these unimaginable choices for their child. 

The first time I saw a photo of a rotationplasty, I was horrified. I actual remember saying, "There is absolutely NO way I will ever do that to my daughter." That was before I knew. That was in the beginning of this process...before I learned the true horror of this disease. What we realized early into our due diligence was that there are NO good choices when it comes to surgical options...osteosarcoma has taken them away and replaced them with nasty, ugly, scary things. This mother's choice would most certainly be that my daughter never got cancer and that she was able to continue on as a happy, naive kid...doing the active things that she loves. That's my choice. However, that is not going to be Bailey's story and we have to accept that because we have to face forward, she needs us to face forward. Through time, prayer, research and talking with people who have been through it, God has begun to change our hearts. Rotationplasty looks incredibly different, certainly...and is shocking to everyone who sees it for the first time. What we have begun to understand though, is that this surgery is really an amazing scientific innovation that uses God-given parts (the kind that work the best and last the longest) to allow our little girl to move on from cancer and get back to what she loves doing. Even now, as sleep eludes, I go through the choices again...hoping and longing for another way...and each night, I come to the same awful conclusion. This is the only way for this child.

What were your options? 
Surgery is absolutely imperative for osteosarcoma. It is not optional and the tumor will not just completely disappear through chemotherapy. There are several surgical options, but choosing the correct one depends  on numerous variables, including but not limited to: the age of the child, location of the tumor, joint involvement, desired activity level post-surgery, etc. One of the most simple and complete discussions I have found on the issues faced can be found here (it is taken from an interview with a doctor at MD Anderson):

I also wrote a blog post several weeks ago describing the choices in-depth as they relate to Bailey specifically. For that information, see this link: Bailey's Surgical Options

What is rotationplasty?
Rotationplasty is a form of amputation in which the diseased bone is removed and the leg is then rotated 180 degrees and reattached (essentially - backwards). The rotated ankle now functions as a knee and the patient wears a prosthetic to serve as the bottom portion of their leg. It was first done in Germany in the 1930's and it is used quite a bit in Europe. (The reasoning most suspect is that Europeans are less vain than Americans.) Dr. Van Nes introduced it in Canada in 1950 and it is much more widely accepted there.  The benefit is that it is classified as a below-the-knee amputation, with all of the mobility and functionality that comes from that designation. Many times, patients receiving this surgery would be facing high, above the knee amputations...which although can be quite acceptable with the high-tech prostheses available now, are still less functional and energy efficient than a below-the-knee amputation. 

It is best described visually and we have found the videos below quite helpful in explaining it to people. Brace yourselves...if you have never seen does seem shocking at first. It takes a while to appreciate the genius of it. :) The first video is less than five minutes, while the second if for those who want detailed information, as it is close to thirty minutes. 

Rotationplasty - short video 
Rotationplasty - long video 

What are the positives to rotationplasty?
While it will take quite a bit of time (years) for Bailey to become proficient on her prosthetic leg, once she does so, she will have no limitations to activity. Surprisingly, it can be labeled the most simple of any of the options. There are few complications, low rates of infection and the bones typically heal to be quite strong, and in most cases, it is one surgery and done. It looks different ( looks crazy), but it is extremely functional - more so than any of her other choices. Because she will have a "knee," she will have much better control over her prosthetic leg (the foot also provides good sensory feedback, since you cannot feel the foot on the bottom of a prosthesis). There will be no long-term phantom pain, because the nerves are not severed and her foot is still there. The human foot is created to be weight-bearing, so you do not have the over-use/stress/spur issues that can come from transitioning a non-weight bearing extremity (like the thigh) to weight-bearing. She will be able to play sports, wrestle with her kids, ski with her family, climb mountains...whatever it is she decides she wants to do. 

What are the drawbacks to rotationplasty?
Cosmetics/aesthetic appeal is the only major drawback. It is a significant issue, but for many people, they quickly forget about the "look" once they see the functionality. Although, it is certainly not for everyone.

Most people choose limb-salvage (replacing the cancerous bone with a metal rod and artificial knee joint - called an endoprosthesis) when in this situation...why is this not the right choice for Bailey?
Limb-salvage is probably the right choice for some kids and it tends to be the current "favorite" of the surgical community (although other decisions are on the rise as kids become more demanding about the functionality they want post-surgery). As it relates to Bailey, we feel that limb-salvage has some serious flaws:

-Her activity would be restricted high impact sports, very little running, pounding, twisting or anything that could damage the knee and femur replacement because the parts loosen over time (both through use and through growth of her bone in both length and width as she grows taller). The parts only last for so long and they can only be replaced so many times before the bone is worn away to the point that there is nothing left to attach it to. For the athletic and activity level that Bailey is used to and wants to continue, this simply is not an option. (If you think about your 70-year old grandfather getting a new knee and both the years he needs it and his activity level...vs that of a 10-year old child...there is quite a difference.) 

-She has a good bit of growth left (height) and would need an expandable rod, so she would be guaranteed multiple procedures to lengthen the rod and at least one replacement surgery when she stops growing to put in an adult rod, but most kids typically have numerous surgeries over the course of a lifetime (and these are not easy surgeries...typically a long period of non-weight bearing, crutches, walker, high risk of infection, and significant rehab). The expandables are less durable as well, so if she did decide to push the boundaries a bit...chances are she would break it.

-The risk of serious life-threatening infection, rejection and complication is significant and grows with each surgery. Many infections end up resulting in amputation.

-If she was fully grown (thus not needing the more fragile expandable and limiting her potential surgeries and maybe giving her a bit more leniency on activity level) or if we could save her knee, we may have chosen something different, although I'm not sure about that. However, she has significant height potential left and we cannot save her knee...both fairly large issues for which to find solutions. 

What about an above-the-knee amputation? It doesn't look nearly as unusual as people are used to seeing them, plus the technology behind prosthetics allow for unlimited activity?
This was definitely a consideration. The technology of prosthetic legs has come a long way (especially with so many soldiers returning as amputees). If we were to amputate, it would be mid-thigh for Bailey. She would have much less functionality and it would use much more energy than a rotationplasty. Also, the thigh is not meant to bear weight, so most above-the-knee amputees have serious hip or other issues from using the limbs in ways in which they were not designed. Phantom pain is a major issues as well and should be considered very seriously as it can lead to a lifetime of pain medication. 

Are you concerned about the way rotationplasty looks? 
Uh...let me answer this with an emphatic, "Yes!" No parent wants to intentionally disfigure their perfect looking child. That is unnatural. But osteosarcoma is insidious. She can either have a leg that lets her do what she wants to do or she can have a leg that looks "normal." Osteosarcoma will not let her have both. This is not a choice that we want to make. While we have peace that this is the correct choice for her, we still ache wishing that there was another way. There is not.  We have no peace in the reality of being forced to make this decision for our is beyond awful. 

Aren't you subjecting her to a lifetime of being different? 
No, we are not subjecting her to this different life...cancer is. We do not want cancer to also keep her from doing the things she loves to do. Yes, she will look different. There will be hard times. We know that the years from about 12-17 have the potential to be exceptionally tough. But we cannot plan her entire life around the drama and image consciousness of the teenage years. Even the most outwardly perfect girls hate middle school. No one likes that time period. Mean girls exist, superficial teenagers abound...regardless...and so there is no way that we can protect her from all of the pain. We also don't want to teach her that looks are such a priority that she should subject herself to being miserable for the rest of her life, simply to fit in and look "normal." That doesn't feel like a good lesson either. Ultimately, this is God's plan for her...not some deviation from the plan...and so we hope and pray that God will grow in her a heart strong enough to be confident in her identity in Christ. Still, this is not an easy choice and it is one we would rather not be making.

Don't sports end after high school? Why the focus on athletics?
Many assume that because Patrick and I were both college athletes, that we expect the same of our kids. We don't. To compete at that level takes a particular skill set, personality and a bit of "luck"...all of which are totally out of our hands. For many, sports do end after high school. Right now, Bailey does want to continue to play sports and this surgery will hopefully (with very much hard work) give her that option. But more importantly for us, it is about being able to live an active and healthy lifestyle...pursuing a number of activities that will keep her physically fit, able to relieve stress, etc. For a true athlete and active person, sports do not end after high school. I played soccer (with men) throughout my twenties and would still do so now if I had the time. I also currently do boot camp style workouts, sprint triathlons and mud races. Patrick played baseball throughout his twenties, he still plays ice hockey and a good bit of golf. We want Bailey to have those same opportunities...whatever it is that she chooses. She is an on the go kid and I would imagine she will grow into an active adult because that is the kind of family she is being raised in. We don't want her to miss that fun. We also want her to be able to run and jump with her kids or go skiing with her family or play tennis with her girlfriends...things she would not be able to do with a limb-salvage. 

Can't she learn to love other things?
You can learn to love other things, but I'm not sure that (short of a miracle) you can change your entire disposition. Bailey would be a boy if she could be. Just the other night, she was sad and needed to do something, so the two of us (mother and daughter) went outside and threw the football (very carefully with her bad knee) for almost an hour. She has no desire to sit around ever and I don't think that will change. She could pick up some new hobbies, but I would hate for her to face repeated heartbreak for the rest of her childhood because she was having to watch others do the things that she loves. Because of cancer, she will have already missed far too much.

Have you met families who have made this choice?
We have either met with, spoken with or traded e-mails with quite a few families who have made this choice. There are several girls around Bailey's age and I e-mail or talk with their moms regularly. We went and watched a boy named Sean play a high school lacrosse game. We also met a very awesome kid named Sam while we were in Florida visiting the surgeon. He took off his leg for Bailey, showed her his little leg. She was very impressed with his mobility. We also practically stalked a 25-year old woman named Lora who had the surgery at 11. I saw her online and we knew we had to find her. Both she and her parents were so gracious and spoke at length with us. She played numerous high school sports, and then after high school pursued the Paralympics and is on her way to London this summer for her third games. She is married with a baby now and has offered to come visit Bailey after her surgery in June. This list goes on and on...

Have you spoken with anyone else who has swayed you in this direction?
The most convincing arguments have come from those having either first or second hand knowledge of the "after." Physical therapists, nurses, parents, doctors, kids who have had the they share about their experiences, functionality, what they have seen...we realize that most wish more people would choose this option, rather than being too scared off by the looks to even consider it. 

What does Bailey want?
Bailey, without hesitation, wants rotationplasty. Initially, she had enough to deal with just understanding cancer and all of the terminology and information that goes with that. We held off on the surgery information for a while...all that she knew was that her sports were in jeopardy and it would be a very long recovery. Finally, I presented all three options to her (Patrick thought mother/daughter would be better and I tend to agree...she and I are very close and it was an excellent talk)...there was devastation in her eyes when I said that she would never play basketball again with limb-salvage...complete heart break. When I told her about rotationplasty she asked what the limitations were...could she play sports? I said she that she would have to work very hard and it would take some time, but she could play whatever sports she wanted to - and her eyes lit up...and she has not changed her mind since. One of her first thoughts was even, "It might be cool to look different mom." I know she is ten and that will change, the last thing a teenager wants is to be unique, but I think it speaks a lot to who she is. We have spent much time focusing on Bethany Hamilton and those types of stories - about people who had hard things happen, but that it opened doors and opportunities that they never would have had otherwise. She is still sad, angry, afraid...all of those healthy emotions...but she has been unwavering in the choice. We are blessed that all three of us were feeling the same way. I'm not sure what would have happened if there was no consensus. As much as I don't want to admit it, I also think that God has uniquely designed this child for this, and although I HATE the idea of what we have to do...I also believe that He is preparing her to be ready when the time comes. 

Anything else? 
Cancer is awful - especially for children. They suffer tremendous pain, both emotionally and physically. They miss out on much of life as they spend time either in hospitals or at home feeling sick and tired. If you can get them through cancer, if they can beat it, then you want nothing more than for them to return to being a kid...not to a life of more restrictions, more pain, more surgeries, more watching others do...more hard. Even if the cancer is gone...the ramifications linger and it still wins.  This is a battle we are in and there are no guarantees. This surgery is part of what we must do to try to win the war. We are trusting in the doctors, the chemo, the surgery - all of the pieces in the hands of our great Physician...the one true beat this cancer so that she can live. We don't want to do this. We still have no peace about the fact that we have only three agonizing choices. But this is our path and at some point, as parents, we must step up and attempt to move through this...making the best possible decision for this specific child. Choosing this particular surgery, the point of this, is so that once the cancer is beaten, she can truly LIVE...and not spend the rest of her life watching from the sidelines.