Camp Sunshine is a great organization that provides various programs throughout the year for children with cancer. What they are best known for is their summer camp that allows cancer kids to just be kids...yet to do so around other children who have had similar experiences. Last weekend, we were blessed to have our first experience at Camp Sunshine Family Camp. We feel so thankful that both the chemo schedule and Bailey's counts worked out in a manner that allowed us to go. It was an amazing couple of days and much needed for our weary family. All of the families attending have been through their own gut-wrenching cancer journeys...and so while any type of camp is always fun...this is different level of joy. It is a time for healing and loving and bonding for the entire family...siblings, parents...and most of all, the children who have spent months battling cancer instead of being kids. Bailey had just gotten her prosthetic leg on Friday before we left. This active, athletic child hadn't run in six months or walked in three. She was only cleared to bear weight on her amputated leg about two weeks ago. To see her ear to ear smile on the rock wall...oh, this mama's heart! I think it was the most she has felt like herself since March when we started our journey down this terrifying road.
One interesting thing...if you look below at the rock wall picture (or check it out in the video we made of Bailey's first steps), you'll see that on the wall they mark the commands the campers are to use during their climb. "On belay? Climbing. Resting. Trusting." As Bailey was working her way up the wall, it just struck me...isn't this how we should live...each day?
Climbing.
Sometimes it is up a mountain and sometimes it is out of a valley...but for the most part, we should always be moving....loving, serving, stepping out in faith, making the most of the gifts we've been given.
Resting. There are times to rest, to wait, to listen, to seek respite and refill...before we begin climbing again.
Trusting. Always, whether climbing or resting, before the next step out in faith, off the ledge...we must be trusting.
On belay? We may be dangling or swinging or exhausted from effort or free-falling or going nowhere or violently banging into the wall...but God's got us...belay on...we are tethered to Him and the rope is His beautiful plan and we will not be detached from it...no matter how off course it may look to us - He holds tightly to that rope. As I watched my warrior princess climb that wall...as I reflected on all that we have been through...the true meaning behind those words washed over me. I just kept looking from those words, to my girl, back to the words. I was moved.
Belay on. Climbing. Resting. Trusting.
Luke, Emmy and Caleb were full of smiles and laughter too and the six of us spent the days making up for lost time. It was an amazing weekend...after so many weeks apart, so much hard, so many times telling the kids we can't do this or that, watching Bailey sit and ache as her friends played...there are no words to describe the type of fun we were having. At Camp Sunshine...the happy is just bigger. So thank you to Michele and all of the volunteers for a blessed two days. We can't wait to go back!
Back in the spring, when we were unwillingly unwrapping the devastating reality that is cancer, we quickly realized that one of the many awful ramifications of osteosarcoma were the surgical options. Bailey's tumor had invaded her knee (as is many times the case with osteo) and so her knee had to be removed along with the tumor and part of her femur. The details are long and complicated, but I wrote several posts on the surgical options, if you are researching for your own decisions, they can be found here:
The short story is that of the three terrible possibilities, we chose rotationplasty - for a number of reasons, with the most compelling being that it allowed for the greatest functionality long-term (in addition to relatively good chance of healing, low-risk of infection, minimal chance for repeat surgeries, etc.). From early on, Patrick and I both knew that this was the right surgery for Bailey, but she knew it as well. In fact, I believe the decision was even more clear to her than it was to us...she has been unwavering. Bailey wants to be active and athletic with the most function possible and so in her mind...this was always the only choice.
She had her surgery on June 5, 2012. Due to chemo, the healing process is slowed...so she has been completely non-weight bearing since that day. On Friday, September 14, 2012 she was finally cleared to bear weight on that leg. It only took about two weeks from the initial casting for her first leg to be complete and it has been a fascinating process. Bailey is thrilled. She has been either in a wheelchair, on a walker or crutches or hopping around on one foot since June. She has not run a step since March. She knows that these first steps are baby ones, but she could not be happier to take them...to her...they feel like great leaps in the direction of getting back to herself. This child was willing to make an extremely difficult decision early on because she knew it was the best one for her in the long-term and we are so proud of our brave girl.
So, she is up and going on a leg. It has been six months since our journey began and three months since she has walked a step. There is a long way to go, but we are pleased and pleasantly surprised by how well that first session went. Her leg is still a "trainer" at this point...when Bailey and her prosthetist are sure that everything is in the right place and fitting well, they will clean it up and personalize the exterior based on what she chooses.
Let the physical therapy begin!
