I remember getting the very first phone call where cancer affected my life.
When I was in the seventh grade, my 'family', the group of people I had grown up with in my neighborhood - jumping on trampolines, swimming, and playing hide and seek, grew by one. Our
'Baby Luke' was born in October of 2006 with a heart condition that caused him to be put on the transplant list. When he was put on that list, I remember impatiently waiting for the phone call that he would have his heart. That phone call came one morning when I was already at school - that Luke was in St. Louis waiting on his surgery to be done that very morning - I remember feeling anxious for this little tiny baby, that I still had yet to meet. I learned so much about family during this time - Luke's two older siblings spent substantially more time with us and my parents would accommodate having four kids instead of just two since Luke was spending so much time in St. Louis. When Luke came home from the hospital right before Christmas that year, I held him for the first time when he still had an oxygen tube in - I remember thinking how valuable and beautiful he was as his eyes stared back at me - how he had been through so much in life before he was even eight weeks old.
Five years later, the phone call came with the news that Luke had cancer. Although always knowing it was a possibility after a transplant, it broke my heart knowing that the little boy who loved Starburst Jelly Beans just as much as I did and could get so much joy out of confusing the older kids with his imagination games when we 'couldn't follow the rules' would have this terrible label on him.
Luke went into remission in the summer of 2012, right before I started college. The last time I saw him was on his first day back at church after several months off - I tried to snap a picture on my phone of his very first day - he had been unable to be out often because of his suppressed immune system, but on his first day back at church, he essentially sprinted down the aisle to get to the children's sermon. In fact, the picture was blurry. If there was one thing about the kid that never changed, it was his determination.
In October of 2012, after an infection, Luke passed away nine days after he turned six. The little boy who taught me about strength, love, and still makes me partial to anything Spider-Man had only had six years to do his job here on earth - that phone call came late Monday night during my freshman year of college, and by Wednesday afternoon I was packed and on the road - back to the family that had been together to see this little boy since day one. We had so much fun watching old videos of him singing in the car, telling knock knock jokes, and talking about his dreams, his personality still seeming to fill the room.
A year and a half later, I applied to volunteer at Camp Hope for the first time - a friend from high school had recommended it to me, but other than that, I knew nothing about it, only that it may hit me a little close to home, as it was a camp for kids who had or have had cancer. I thought about Luke, often struggling with the idea that he would have loved camp - it wasn't fair that I could go and he couldn't. The camp also had to be relocated because of a fire my first year, the chosen relocation onto a college campus - admitting to myself that I was a little more than scared to go is probably an understatement. Would I possibly be able to handle seeing so many kids like Luke, and they weren't even at a camp? Thankfully, I couldn't believe how wrong I was. The week was filled with games that seemed to make camp stand out - bubble soccer, hamster balls in the pool, a mobile game den, and even a color run and a paint fight. I was truly amazed, both my first and second year, what can be deemed magical when you are in the presence of a child.
On Wednesday morning of this week, mid camp, I had taken a trip into Great Bend to run some errands and was sitting in a coffee shop when the song Long Black Train came over the speakers - I never hear that song on the radio, but I could feel the tears well up in my eyes as I could hear Luke's tiny but bold voice singing one of his favorite songs in the back seat of the car - one of the many videos we watched to put together a group of videos for his funeral.
This fall it will have been three years since Luke passed away - and I know for a fact that he is a huge part of my fuel and love for Camp Hope. Whenever I spend one on one time with a camper I can still hear his little voice asking 'will you play trains with me?' and when I watch a camper do something for the first time, I remember seeing Luke learn to jump for the first time - we were playing a game on Xbox Kinect and he was trying to help - he got so excited his feet left the ground - something he had never been able to do before because of some delayed motor skills development. Jumping had always seemed so trivial to me, but we screamed and yelled like we had just won the lottery.
As the week went on, I paid special attention to the fuel of each and every person working or coming as a camper - most of them vastly different. During my first few days at camp last year, I thought it was the 'camp' atmosphere that drew these kids back year after year - at home there is no way to play hungry hungry humans, have a color run in your back yard, and you don't see a mobile game den very often. But after awhile, I realized that although that makes camp exciting, that isn't the root of it.
The root of it is truly hope, and that's all. The games, the friendships, the lack of bedtime, it's all grounded in hope. My first year I wondered how on earth it was possible to be a counselor at a camp where kids were sick - watching Luke be sick and remembering seeing him like that broke my heart, and I was afraid that it would be a week full of 'fake' hope - but that is certainly the last thing I found. I found that the hope really has nothing to do with 'hoping everyone will be perfectly healthy and everyone's lives will have no flaws' - but it has more to do with finding hope in a place you never expected to find it - these kids find hope on the journey, they don't search for it as an outcome.
I saw kids find hope this week as they got to run through stations of paint being thrown at them, and then have a paint war with their friends with essentially no boundaries. I saw kids who got to swim three or four days in a row and have a water fight in the dark, and kids who got their faces painted and hair done for the dance on Friday, find hope in that chosen day and the activities that lay before them. I saw kids of all ages who seemed to be able to share their hope with others - I know it certainly worked on me. The kids decided that it was not about the next treatment, test, or result, it was only about the next five minutes, ten minutes, or hour of life. I saw younger campers develop relationships with older campers who no longer struggled daily with the affects of their sickness - offering, possibly indirectly, a relationship of empathy and love in a friendship that could only be truly understood between them.
I went to camp expecting it to tug at my heart strings knowing the journey that some of these kids had before them, but I found that they mostly were teaching me about my own journey, why I want to work in the medical field, and why working with kids is important to me. They taught me about tough situations, being thankful, and the importance of laughter. They reminded me of the way that being around Luke could make me forget about any stress I had in my life - his wishes to help and do things himself and his constant pleas for more games were a true example of how sometimes, it's really not about the destination, only about the now. I was reminded about the value of family at camp - Luke had a way of bringing everyone together, ever since he was born, and at camp, I had that same feeling of family, even though I've known everyone there for a whole two weeks. Although all the kids in the camp had one major life illness in common, I found that the hope at camp stretched far beyond the six letter word 'cancer' that had gotten me there in the first place. Many people, campers and volunteers alike, were dealing with other trials and tough situations in life. The more I listened to people's stories, the more I found other people, not just the kids, who were coming to camp and finding hope in the journey instead of at the destination.
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