I've written at length about the first few days of our journey into the world of childhood cancer. The complete shock and disbelief about the diagnosis. The wrestling with God. The crushing, suffocating pain. What I haven't spoken much of was the second layer of our grief. After we had a few agonizing days to process the initial news...it was time to begin formulating a plan...of determining what was next...of facing forward. Oncologists don't talk much about the surgical options as it relates to osteosarcoma, at least ours didn't. They save that for the specialists. They point you in the general direction, and then you are on your own to find a surgeon and make decisions regarding that particular phase of the treatment. So after a few days, we could scarcely breathe again, and we allowed ourselves back on the Internet (it was much too scary in those early moments) to begin researching surgical options...and that is when the next layer of grief came rushing, like a second tsunami wave washing over still fresh devastation. We realized that while there was hope that we could beat this hideous disease, we learned that our child would fight this brutal war only to be handed back a life that looked drastically different than the one she had prior to cancer. This was not some middle-aged man we were planning a life for, this was a ten year old girl. A girl who loves sports and running and jumping and tree climbing and wrestling with her brothers and who rarely sits still...ever. I had just come out of the pit, ever so slightly...when I immediately went tumbling back in...grasping, clawing...again...grief not as heavy as the first time around, but nearly so. How could I deliver this news to a child who was already carrying more than she could bear?
Initially, we'd heard all about this supposedly great thing called "limb-salvage." About how kids with osteosarcoma used to face certain amputation, but now, their limbs could be saved in most cases. But the more research we did, the more difficult and confusing and disheartening it became. Each situation is different, depending on many factors: the type of cancer, the location of the tumor, the age of the child, the potential growth (height) the child had left, the desired activity level after surgery, etc. In our case, we learned that there were three choices and three choices only, and they were all horrible. The bottom line was, that based on the location of her tumor, both Bailey's knee and part of her femur had to go. One solution for this was the famous "limb-salvage" surgery, which really doesn't salvage a limb other than for cosmetics and very basic usage. Then there were also two forms of amputation, a straight above-the-knee amputation or the insanely crazy looking rotationplasty. While we are grateful for the developments in chemo-therapy and for the presence of choices that never used to exist, we began to realize that "choices" might not be the correct terminology for this decision...because none of the options were anything that a parent would ever willingly choose for their child. As I have said before, cancer takes away any good choices, and that was certainly proving to be true here as well. I read a terrific article that was very concise, yet throrough, as an Dr. at MD Anderson summed up the issues. If you are interested, here is the link:
Bone Surgery Options in Young Patients
I wrote a detailed post about the three surgery options that applied in our case specifically, and if you are interested in reading that, it can be found here:
Surgical Options
So we sat in this second tier of grief for several weeks...heart-sick that we were going to have to tell this athletic, active child that her sports were over...for good...at ten. It was heavy and awful and unsettling. Although we had no idea which direction to turn yet, we began the process of looking for a surgeon. The protocol for osteosarcoma is standard, and surgery occurs at 10 weeks...and so there is precious little time to make this agonizing decision. We read everything. Everything. I'm not sure that an article exists that I have not read. We talked to numerous surgeons specializing in various options. (One thing to note on surgeons, if you are walking this road...they all favor or have a strong opinion about one surgery or the other, so you must know your child. The good ones will admit that one surgery is not correct for all children...but many do not...they feel strongly that their way is the only way. You must do your own research.) Some of the most instrumental people we have spoken with have been those who have seen the after-affects...either first or second hand. We met with a physical therapist who was extremely helpful...going through realistic expectations in each case. We spoke with children who have gone different routes. We have met with families. We have left no stone unturned in our insatiable thirst for information. Wishing, hoping, praying that there was some other way...any other way.
There is not.
We have decided (Bailey included) after much agonizing, prayer and trying to talk ourselves out of it, that rotationplasty is the best "choice" for this child. While it looks quite radical, as we have learned more, we have come to appreciate the brilliance behind this surgery. The below videos are quite helpful in explaining the procedure. Brace yourself, because if you have never seen one...it can be shocking:
Rotationplasty (short video - less than five minutes)
Rotationplasty (long video - approx. 30 minutes)
Basically:
-The functionality will be limitless (eventually); with a prosthesis she will have no restrictions to activity and she should be able to return to sports and do well (using the ankle as a knee will allow her to function as a below-the-knee amputee...which is more energy efficient, easier to manage and the foot is already designed for weight-bearing, so there are less long-term over-use issues than an above-the-knee amputation). Having a functional knee joint is critical in athletics.
-There is little risk of complication or repeat procedures. It is typically one surgery and done.
-There is no phantom pain, since the foot is still there and no nerves are actually cut.
-It uses parts that God has made and they just work better and last longer than anything man has made up to this point.
-Bailey wants to lead an active and athletic life and this surgery provides the best opportunity for that.
There is heated debate in the medical community as to which surgical choices are best for osteosarcoma. Quite honestly, I think they all stink and to call them choices is ludicrous. However, we strongly believe that each child is different and wants different things from life, and so in evaluating this, we are speaking only of Bailey and would never push our opinions on another family. You must have intimate knowledge of the child involved to have any hope of making the appropriate choice.
Tomorrow, I will post answers to some FAQs...because we are finding that many people are wondering the same types of things, so, more to come soon...
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