Two Years...Before (Part I)

It was a dark and early morning after a sleepless night. Other than the hours immediately following Bailey's cancer diagnosis, I cannot remember a more fitful evening. Sleep was not fleeting, it completely eluded. I vividly remember pulling into the hospital parking lot on the frightful morning that followed. I walked behind Bailey and her daddy, and I found myself fixated on her right leg. That had been the case for weeks. I could not stop staring at her legs. I wondered how long it would be until she walked again. Would she have a normal gait? Would it be years until she was running? Could she handle looking different? I could barely breathe as we entered the doors of Shands Medical Center. We went through intake and were quickly given our place in the holding pen. Beds lined up, curtains that block vision but certainly not noise. So many people preparing for surgery, but we felt so alone. Hearts aching. I remember thinking, please Lord, take this cup. I...cannot...do...it. Because of the beast, the tumor invading Bailey's knee, we were forced to take drastic measures in an effort to not only save her life, but to return to her a life still full of what she loved. 

The morning was June 5, 2012 and our 10-year old daughter was about to become an amputee. She was afraid, but she was ready. She is a warrior. We did not know that then, but we do now. Bailey wanted her life back and she would do whatever it took to make that happen. The options for tumor resection were abysmal. (I have written at length about these and that information can be found here: osteosarcoma surgical options and rotationplasty FAQs.) The tumor was lodged at the end of her femur and had invaded her knee and if we wanted her to live, the tumor had to come out. We never wavered, but the days leading up to the amputation were agony. Torture. Every night while trying to find sleep, I would sift through the information floating in my brain looking for another way. And in the lonely and frightening hours of darkness, I would re-make the same decision over and over again. It was the only way for this particular child. 

On the morning of June 5, I was summoning every bit of my control, begging God for peace and strength like I have never known. I felt at any moment I would collapse into a puddle on the floor. It was too much. Too much. I wanted to scoop her up and run away, never to be seen again. But Bailey's eyes were scanning ours, looking for clues as to how to respond. She was so steady. I'm amazed now looking back. It must have been God preparing her, filling her up. She was a rock. I could not send her back to surgery knowing that her hysterical mother was the last image she would cling to as she drifted to sleep. I held it together on the outside, while my insides crumbled.  They came and got her. As the bed was wheeled away, the weight of what was happening was crushing.  We had permanently left the before and we were stepping, rather unwillingly, into the after. 

On amputation day, we were less than three months from her still very fresh diagnosis. The protocol for osteosarcoma is 10 weeks of chemotherapy, surgical resection of the tumor and then 20 more weeks of chemo. In less than 10 weeks, we had managed to compile a significant amount of information leading up to Bailey's surgical choice. I still do not know how we did it. We were barely breathing, vacillating between searing pain and numbness from exhaustion, but we researched with a pace and intensity matched only by other cancer families. Still very much in shock, we soldiered forward as we talked to doctors and surgeons, we scoured the Internet, we met kids and families, we talked to physical therapists and those with intimate knowledge of all of the options. Time was not a luxury we were given in making a decision that would affect the rest of Bailey's life. We had to push through our pain if we were going to be her advocates and help her to make a wise choice.

The first time I saw a photo of a rotationplasty I was horrified and quickly noted, "I would never do that to my child." That was before I knew or understood the realities of each of the options. They were not choices at all, at least not choices any parent could ever imagine making.  A child could opt to keep their leg or to maintain high function with no limitations, but you could not have both form and function. As our research was accumulating, one choice seemed to continue to rear its unusual head (or maybe I should say foot). I tried to get around it. I kept looking...there must be another way. But rotationplasty, where the tumored portion of the leg and knee is removed, and the bottom portion of the leg is rotated 180 degrees and reattached, this insanity kept jumping to the top of the list.  I could not yet say it aloud, but the craziest of the "choices" was feeling like the best option for our daughter. 

When we presented the resection options to Bailey, she knew immediately. She wanted function. Done. Decision made. She has been steadfast in that choice ever since. This was confirmation for Patrick and me. One of the things for which I am most thankful was that all three of us had come to the same conclusion. I do not know how we would have handled it had this not been the case. My gut and advice to other parents is that the kids usually know what they want and I hope we would have deferred to her, but I am glad it never came to that.  Many on the outside saw our conclusion as one based around athletics, and it partially was. But in reality, it was more about living an active lifestyle with no restrictions. It was about being able to say yes to adventures and activities instead of no. We opted to grieve one huge loss up front, rather than limitless smaller losses for years to come. It was about making the choice for the most functionality and trusting that God will give her what she needs to cover the rest. In February 2012 we were happy and healthy. On March 15 we had a cancer diagnosis. And on that early morning of June 5, we watched our child walk on two full legs for the last time. 

When they wheeled her away that morning, my heart was completely broken. I had peace, but it is still a decision no one dreams of making for their child. I will never be the same. That level of trauma changes your soul.  Based on what we had seen in other kids, we had realistic hope that Bailey would get back to being the active and adventurous child she loved to be, but there were no guarantees. We were terrified. Happiness and health felt lost in the distance somewhere, not even visible through the fog of our fear.

1 comment:

Heather said...

This and your previous post are so fantastic, so inspiring. Your choice was probably more traumatic, but kind of like ours when we decided to radiate our daughter's pelvis. She won't ever experience pregnancy. Probably not even a period without artificial hormones. But the tumor has never come back, and our daughter just had her third birthday, healthy and well, 18 months since treatment ended.