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.