Bailey Update

It is difficult to reflect on just how much our family has been through in three short months. Cancer comes unexpectedly and brings very swift, drastic and painful changes to all of those involved. However, Bailey has completed two very major portions of this process thus far, and so I wanted to provide a brief update as to how she is doing, where we are and what is next. 

Bailey is just a little over three weeks post-rotationplasty. While both the days leading up to and immediately following surgery were quite difficult (some of the hardest days of our lives), overall, the process has gone better than we expected. The decision was agonizing and the options were lousy...but we are convinced that this was the right choice for her. Bailey has a hard time even understanding why anyone would make a different decision...because she so badly wants a life of sports and activity. She had her surgery on June 5, 2012 and was in the hospital for five days. At this point, her pain, healing, mobility, range of motion, emotional well-being...everything...has far surpassed even our greatest expectations. These kids are so tough...and as we try to put our adult baggage into guessing how they will adjust, we must remember...they process things differently (and much better) than we do. Their little minds and spirits are much more malleable...and they are resilient. 

I don't want to make it sound more simple than it is. She is still processing. Adjusting. Mourning the loss of a portion of her leg and accepting her new look. There are sad times. People stare and that does take some getting used to. Still, she is doing beautifully and we are so proud of her. She has a sweet spirit, but there is a tiger somewhere inside. 

What's next?

So, two major portions of her osteo protocol have been completed. She finished the first ten weeks of chemotherapy and her tumor has been resected. The pathology report indicated that her tumor necrosis was nearly 100%...which was fabulous news! Still, it is estimated that invisible metastases are present in up to 80% of osteosarcoma cases...which brings us to the final portion of this...the remaining chemotherapy. In osteosarcoma, the amount of chemo to be given in the final rounds is determined by the response the tumor has shown to the first portion of treatment. Above 90% is considered a good response and below is considered a poor response. Since Bailey's response was very good, that leaves her with about 12 rounds of remaining chemo (spread over the course of 18 weeks) and it will be the same three chemo drugs she was on prior to surgery. Had her necrosis been poor, she would have had 15 rounds left (spread over about 30 weeks) and some new drugs would have been introduced as well.

Her leg has been healing quite nicely, but since she is resuming chemotherapy this weekend, that healing will slow dramatically. She has started some physical therapy and the PT has been amazed by where she is already. Once Dr. Scarborough clears her to bear weight, they will begin work on her prosthesis. We are hoping that by the end of the summer we can begin this portion of the process. One of the most difficult issues right now is her lack of mobility as it makes everyday tasks very challenging, so the sooner she can get up and going on her new leg, the better. Also, it will take time for her to relearn how to walk and retrain her brain to use her ankle as her knee...so we would like to get her going as quickly as possible. 

We have faced many changes this spring. There is still a grueling road ahead, but we are feeling some peace and we continue to covet your prayers as we begin this (hopefully) final challenging phase. 

Thank you for walking with us. 

Bailey's Surgery - Part III - Another New Normal

Surgery is over. We have weathered being forced into cancer, the disbelief during the information gathering stage, the agonizing decision, the waiting, the wheeling off of our child into surgery, the grueling and shock-filled first few days of having a daughter who is an amputee. We have spent hours staring at her rearranged leg. On one hand, not overly surprised because we had prepared and visualized this moment so many times in recent weeks. Yet also, utterly in shock. Is this really Bailey? Our Bailey?  Seriously God? 

My child has now become one of probably less than 15 children who will undergo a rotationplasty in the United States this year. Why so few kids? There are a number of reasons. One is that only 400 children will be diagnosed with osteosarcoma - so the pool of potential candidates is already small. Another, and likely the main reason, because it looks shocking. It is the favored surgery in Europe and popular in Canada...but not in the U.S., not in our extremely image conscious culture. We still think that this was the right surgery for Bailey. Cancer gave her the option for form or function, but not both...the vote was unanimous...we wanted function. We are perpetually torn between both the oddness and miracle of rotationplasty. The cancer was removed, which for her included the knee. The leg was reattached after being rotated 180 degrees and her ankle will now become her knee. Her brain will retrain itself. No nerves were cut. The ankle joint was not wasted. Crazy. Brilliant. Insane. Awesome. While there are no guarantees, we have seen children do amazing things once they heal and adjust to their prosthetic leg. This is what she wanted, a solution that would still allow her to run, jump, climb, wrestle, play sports and experience an active and healthy lifestyle. It is certainly not what we could have imagined...not our plan...but we are thankful that He provided a way.

Bailey was released from the hospital yesterday. Her progress is going well and we are continually amazed at the things that she can already do...wiggle her toes, rotate her ankle, even lift her leg a bit. But though God has brought peace in this choice, there is still much sorrow to walk through. Cancer has taken part of our child's leg. It is a loss. A deviation from our plan, hopes, dreams, and expectations (but not His) for our daughter. We have no idea how to walk through this. There is no playbook. As we sit in a hotel room right now, waiting to head home, the emotions are mixed. It seems to be the only thing we can count on during this process...joy and sorrow - twisted together, occurring sometimes singularly and other times, colliding in this weird sort of other worldly cocktail. 

I feel as though there should be more tears. As I help her with a walker to the restroom. As I look at her different appearance. As we consider just how much has changed. But we have cried many tears already, and so for now, they are not coming. I am not sure if this is shock, or God preparing us or carrying us, or that we are too busy care-taking and are simply too exhausted to cry...or more likely, some combination. It feels like a strange sort of limbo...not quite home yet to truly face the reality of the changes. Simply trying to put one foot in front of the other and get through this particular day in front of us. Watching our daughter closely, taking our lead from her. While everything inside of me feels shattered, if she is doing alright, than I certainly do not want to heave my heavy load on her shoulders. We are definitely in uncharted waters, wondering when the next wave of emotion will hit and exactly what emotion that will be?

So, that is where we are now. Doing alright from minute to minute. Dreading the next two-three months until she can begin work on a prosthetic leg. Still reeling, yet feeling incredibly grateful for this solution and that all has gone so smoothly.  Praying that God gives all of us what we need to get through this, especially for Bailey...as she is ultimately the one who must travel this road.

I have taken many pictures. As we were making our decision, we relied heavily on the stories of others and Bailey would like to minister to other kids through her journey. However, and understandably, she isn't quite ready for me to post her new look for the world. So, when (and if) that time comes, then I will post pictures - but I am leaving that completely up to her. 

Again, thank you for walking with us...for standing in the gap when we are too weak to do so ourselves. While there are still challenges ahead, there is also much for which to rejoice and thank God. 

Bailey's Surgery - Part II - It's Time...

We arrived in Gainesville, FL and the mood changed dramatically. I could feel it. We all could - even the little ones. We knew why we were there and that we had to be there...but not one of us wanted to experience any part of what was coming next. 

Surgery eve was awful. It was the right decision, but it was still a decision we were forced into based on a lack of other good options.  Limb-salvage and a life of no sports, amputation or rotationplasty. We were tied to a railroad track and the train was coming - and we had to pick one to give our daughter the chance to escape. Bailey was actually handling things quite well. She had been working through some of the sad for weeks and she was ready to just get it over with. Patrick was at the point as well. I still wasn't ready. Sleep was elusive that night and my heart felt as though it was being smashed to pieces. I could hardly breath...the weight of this decision crushing my chest. Even with all of the assurances we had that we had made the correct choice, it was still so life-changing, there is always that doubt in the back of your mind...can we really do this? Are we strong enough? We were making the harder choice now in an effort to spare her pain later...but were we actually capable of going through with it...of partially amputating our daughter's leg and completely changing the way she looks. Agony. 

June 5, 2012. 

Morning finally came after a very dark night. With sunshine, usually comes hope. Not on this day. The light meant that it was time...and that brought no comfort at all. One foot in front of the other is the only way we made it to the hospital. Everything inside of me quaked. She was prepped for surgery and as we sat in the pre-surgery waiting area, I was drowning in fear. I didn't think I could bear it. I wanted to collapse, in fetal position...sobbing. I didn't feel that I could even live through this. But I Bailey's eyes scanning mine...trying to discern how to react. I could see her quivering...barely holding it together. If I had crumbled, she would have too and I couldn't send her back to surgery that way...hysterical.  By God's grace, I managed to hold it together...but as they wheeled her off...away from us and toward the procedure that would permanently change the way the world sees her...everything in my soul wanted to run screaming, "Noooo!" I wanted to grab her off of the table and disappear out the door never to be seen again. It was too much - how could parents do this to a child? Could cancer truly be this much of a beast? She went back to surgery and I will never forget the way it made me feel...or the fear on her face. My soul was trembling. I suspect those last few minutes will haunt me, always.

Surgery day was long. I would say hour for hour, the longest and most difficult day of our lives. We could have been a mess, but we held it together. So many were praying for us...I'm sure that is why. I had to consciously shove my emotions in a box because they were simply too much to deal with. Distractions, reading, friends...anything that would keep me from thinking about what was really happening to my baby back that operating room. Paralyzing heartache. She went back at about 7:45am. They called us about every two hours with updates...all of which were "good." At 3:30pm, the phone rang - she was done and in recovery. According to Dr. Scarborough, it could not have gone more smoothly. Relief. For the first time all day, I rejoiced. This was a long, challenging surgery and she had come through beautifully and we were so thankful. Even immediately after, she was already able to move her toes...which is amazing, considering what that entire leg had been through. The other news, and something we had really tried to focus on in the days leading up, was that the tumor - that hideous beast that started this mess...the tumor was out. (I would love to say she is cancer free, but I cannot. Some estimate that in 80% of osteosarcoma cases, there are undetectable mets...so we will need more chemo before she can be declared no evidence of disease). 

But that insidious tumor was out of our child.

I braced myself as we went to see her for the first time. It was difficult. Surreal. But not as difficult as I expected. Her leg was wrapped in quite a bit of cotton and bandages, so I believe that dulls the shock to your eyes. I managed to hold it together. We will all be grieving the loss of this leg and it will take us some time to get used to her new look. Bailey was doing well after surgery. Our biggest concern, based on what others had shared with us, was pain control. But we managed to stay on top of it and she slept very peacefully that first night. Although physically she was doing well, she was struggling emotionally...shock and grief are unavoidable with a change this huge. We collapsed that evening, me in a hospital futon and Patrick in a recliner...as emotionally and physically exhausted as we could have possibly been. Thankful that this option even existed and for a successful surgery. Hurting because Bailey's life would never be the same. Surgery day was finally over.

The joys and sorrows of this process seem ceaseless. "Normal" is a constantly moving target. The dry, parched land is showered with blessings, yet we are still in the dessert...and it is like nothing we have ever walked through.

Bailey's Surgery - Part I - Almost time...

I wrote several posts for Bailey's website about surgery day. But since not everyone follows along there, and I print these blogs in book format at the end of each year...I thought I should post something here as well. If you are rotationplasty-ied out, please just disregard.

The period of time leading up to Bailey's surgery was extremely difficult emotionally. For a number of weeks, we could put it out of our minds and focus purely on chemo, the end of school and "normal" life. But since the national Osteosarcoma protocol indicates that surgery happens at ten weeks, there really isn't a tremendous about of time allotted to just ignore it. I wrote at length about the options and how we had made our decision and had peace about the decision. But then the calendar sneaks quickly by and suddenly you go from two months until surgery to two weeks...and panic and anxiety reared their ugly heads in full force once again. Even though we had clarity in our choice, the reality was that we were taking out our daughter's knee and part of her femur and replacing it with the bottom portion her leg facing backwards! It was permanent and life-changing, and as the days crept closer, the fear was crippling. We had trouble enjoying anything because we knew the loss was coming and underneath any little smidgen of happiness...we were trembling.

Finally, we were down to one week. I found myself wandering around the house thinking, "Well, this will be the last time we'll do this with two normal legs or this is the end of Bailey doing that, etc." Not healthy and quite morbid. Since Bailey was feeling well, we made the decision to go to the Amelia Island for a few days on the way to her surgery. As we walked out of the house to head to our trip, Bailey and I were both struggling. We knew that this was it...the next time she crossed the threshold, life would look very different...forever. The house was dark and quite as we locked up for a few weeks away...and both of us had much needed meltdowns. My heart was so heavy and she was so afraid. But we managed to pull it together and the trip was one of the best ideas we've had. It forced us to say our good-byes to home and get that over with and the change of scenery was a wonderful distraction. Of course it wasn't a typical relaxing vacation...but we still thoroughly enjoyed ourselves and the family time was much needed. Plus, Bailey was able to play and swim on her two "healthy" legs for one last time, which made all of us so very happy. 

On Sunday afternoon, after three wonderful days, we left beautiful Amelia Island to head to Gainesville, FL...for the surgery that would change everything...