I've had about three different blog posts going through my head on many an occasion in the past few weeks, particularly during the brief 45 minutes or so I savor most days recently where I've been able to exhaust myself running on the track after school while immersing my thoughts into music from the ipod in a mental place that is just mine (Yep, need to start carrying a note pad around in my running shoes) Lots of papers to grade and our first two weekend trips away from home since Ellie originally got sick have kept me from sitting down for a couple hours to write and doing those thoughts justice. However, with the last stroke of my pen on the final delicately assessed exam this afternoon, I closed the book on my 6th year of teaching and stepped off of the treadmill for a couple months. Time to slow down a bit. Time also to reflect on an experience we are one week removed from that brought us such special moments, I'm not sure we'll be able to adequately express how incredibly blessed we are to have been a part. So here goes...
I was very fortunate to have many opportunities growing up to spend time in the outdoors hiking, camping, and backpacking be it with the Boy scouts or with family. I don't think I fully knew the importance of the contrast back then but the ability to leave the chaotic pace of 6-7 high school classes and countless nights in a row with late night homework/numerous (maybe too many) activities taught a good lesson on what the tranquility of mother nature can do for you. One of my top experiences of all time by far was the two week trek I took when I was 16 into the New Mexico high country just outside of a town called Cimarron at the southern end of the Rocky Mountains. It was a 12 day 60+ mile adventure of a lifetime. The journey consisted of us forming into a crew of a handful of kids plus a few adult chaperons and making our way through an itinerary of various trial camps while we made this giant loop of the Northern New Mexico Wilderness. You can only have your first experience with anything once of course, and so the discovery of what was around each corner was pretty amazing. Each camp we stumbled upon had different activities to challenge teamwork, resolve, problem solving, and (more so than the rest) your ultimate commitment to see it through.....all demanded of you immediately after arriving from the day's hike of several miles to get you there when emotions and overall fatigue are just about ripe enough for conflict. There were moments on that trek where we had to care for an injured crew member, fight our way through weather to pick up food, be extremely weary of bears at night, and just keep going on tired legs required to ascend another 1000 feet the next day when just about everything physically attached to you HURT.
The meandering path took us to places I had never known nor could have imagined. When the sun started to go down and you could look across a meadow or natural lake or terrain near untouched by human hand....there was an opportunity to just LISTEN, listen to almost NOTHING and just BE. There was no traffic, no voices, no schedules, no deadlines, no social pulls, no computers in this moment where words were inadequate to describe a serene vision right in front of you that begged for heavenly descriptions. All of it lighted by vast amounts of stars you'll never see anywhere but in that setting. It was an EXPERIENCE (for me) where you could see deeper into why we are doing what we are doing. It was clarity of purpose and meaning to every twist and turn on our trip. It is hard to describe exactly and I've been trying to painstakingly find a way to paint the proper picture for a long time but in these moments...you only get a glimpse each time and you have to remember to take a mental snapshot so to remind yourself where you left off for next time. It can take your breath away with such vigor and such emotion. It was peace. It was perfect. Above and beyond anything that was accomplished during those 12 days, most of which I have to admit I remember only vaguely, the lasting impression of importance taken with me as we left Cimarron to head home which I have kept with me now 20 years later is the fact I was able to walk every step of that trek with my Dad. You see it may not be that we have to get where we're going at all, bit instead profoundly relish the people we are simply walking beside and looking forward with...tired legs and all.
Last weekend Polly and I packed up the car with sleeping bags and suitcases for all four of us for the first time since June 26th. We got an invite we couldn't refuse to a family camp about 3 hours away in a small town called Berry Creek about 20 miles northeast of Oroville. It goes by the name "Camp Okizu" which is a Sioux Indian word translated to mean Unity and Peace. It is a camp completely funded by private donations, completely free for all campers invited, and exclusively for families with children who have cancer. It was founded by two men who have been working in the Oncology world for over 30 years, it is staffed by 40+ college kids who volunteer their time (on a holiday weekend no less!), and it has a waiting list of eager participants every single Memorial and Labor Day weekends.
The weekend consisted of three meals a day with everyone in the same large dining hall, singing songs no less to "earn" seconds of food. The mornings were playtime for T & E without us as the college counselors took them to what was the Taj Mahal of toy rooms (literally every square inch of shelf,counter, table filled with donated games, toys, art supplies....more or less stimulation overload for a solid three hours for a couple of worthy two-almost-three year olds). While the kids played in the morning, Polly and I were able to sit in group discussions with other parents. The afternoons were a time for family events such as going to the lake for boating/swimming, hiking, fishing, archery, crafts, or the twins' favorite climbing on and flying down the ropes course amongst the tall trees. Evening times saw us have a swinging dance party one night and goofy camp fire the next complete with S'mores. There was never a shortage of smiles and the camaraderie between families was instantaneous. With the price of admission so steep in one sense, there was not the time to do anything else on this sacred ground other than enjoy the company of so many incredible kids.
When we arrived on Friday, we were placed into a two family cabin. I would say the range of where each afflicted child was at with their journey was all over the map. There were kids present who had been in remission for over 10 years, some just off treatment, some like Ellie currently in long term maintenance, a few just recently diagnosed in the last couple of months, and some who very unfortunately will never have the ability to be cured. The family we shared our sleeping space with just experienced their June 26th a little over a month ago. I was in awe of their strength to be able to muscle up a trip to the mountains for the weekend. All things considered, don't even think I could have comprehended that last July. Their son, age 4, has the same form of Leukemia as Ellie and so we were able to convey some messages of support for what lies ahead for them in the next few months and share some stories. Even if it was just a little help we could offer, they were great people to get to know.
Two things struck me on our first full morning there. The stories being told and the remarkable people in large numbers in the same circle as Polly and I. At our initial group adult discussion session, the leader in charge kind of laid the groundwork out for what we were to discuss....and that was simply anything we wanted to share. So, after watching how much fun everyone was having Friday night when we arrived with playing games, laughing, and running about....on Saturday morning, Polly and I one by one heard everyone's story of how their lives forever changed one fateful day. It was if we were hearing our own story over and over again. Leukemias, bone tumors, brain tumors, kidney and lymph node tumors. It didn't really matter what type it was, everyone initially saw symptoms that most (including many docs) passed off as no big deal only to see them persist and worsen. They shared and we shared. The stories were heart wrenching to say the least and to say Okizu is well stocked with Kleenex is an understatement. I started to realize that around the room were members of every major race in existence. Folks were sharing stories on how their cultural background played a factor in how they have been able to cope (or not cope), how some have persevered through divorce and abandonment for the sake of their sick child. And then as one person would seemingly start to lose their way with their story due to tears, someone else would speak up to express how they have been through similar times and can relate....not to solve the problem....but just to offer common ground and to walk for a little bit side by side. If only the politicians out there could see what a true cross section of humanity, bonded together by a problem that transcends cultural differences, can accomplish in a short three hour time span...we might find a bit more peace in this world.
There was HOPE offered in immense amounts. You see you can attend Camp Okizu once each year for life if you wish and so a few families were on their 9th or 10th year coming over Memorial Day weekend because as their children are now in permanent remission and cured, it remains the most sought after vacation spot many years later because of the friends they see every year and the support they can offer others who are relatively newer to the oncology world. One mom approached us at dinner on Sunday night. She had to be one of the few people we hadn't met the entire weekend quite yet, but out of no where appeared in front of us. She said she knew it was our first time at camp and that Ellie had Leukemia like her daughter. Her face lit up and said what a huge light awaits at the end of the treatment tunnel so to speak. Her daughter, now two years off treatment has resumed all activities, shows no lasting effects of the chemotherapy, and is 100% living a normal kid lifestyle right now thriving. She wanted to convey to us that it is possible to recover completely, something we have heard from friends of friends over the last several months, but there is a much deeper connection coming from a fellow parent who has walked in your shoes. How she knew us, I don't know....but the extra pep in her voice is not something I will forget nor will I stop thanking her for the supportive words if we see her again next year. Sort of a unexpected random act of kindness if you will.
On both Saturday and Sunday afternoons, we headed down to the Ropes Course where they run a huge Zip line down a ravine. On Saturday Polly and I took turns going tandem with one kid and flinging ourselves down the line. On Sunday, Ellie announced she wanted to do it by herself. Mind you this was about a 120 yard zip line with a good 40 foot drop below it once in "mid-zip". But Ellie who has withstood doses upon doses of toxic chemicals in her system for over 11 months now and stands at less than 3 feet tall did not even blink an eye. The counselor harnessed her up and gave her a push....and Ellie smiled the entire way across. We were told she may have been the youngest ever to ride the zip line solo. They've gotta have a bumper sticker or something like that to mark the occasion, right?! Okizu delivers on its promise to instill a confident bond between everyone there so that we can get beyond our troubles, even for just a short while, and seek out those moments where life is truly being lived. I know Ellie will come to realize the full situation of what her battle is all about one day, but I just have this feeling her strength of being able to move forward no matter the circumstances has brought her further than we could have ever imagined and it will be there for her to turn to whenever she desires to climb a little higher.
One of the last activities on Sunday prior to dinner was a huge Capture The Flag game for the entire camp. Ellie and Timmy grew quite attached to two counselors there who were also twins themselves. Their mom is one of the camp nurses and as a result they had been coming to Okizu for over 20 years. They were a blessing to meet and take such an interest in our family. Anyways, T& E saw them on the field and immediately ran off to run around like wild ones for the next 30 minutes while the loosely organized teams attempted to run the perverbial "flag" (strangely a stuffed teddy bear for this game) from one side to the other. It was 30 minutes of about 60 kids running, laughing, screeching, carrying one another, and just having a raucous filled good time. Many kids were wearing their hats to keep their bald heads warm (hey, I can relate to that!), others who couldn't be as active were with friends they see at camp every year, and many were siblings who in several stories we heard find it hard to get the attention they crave from parents so overly burdened with clinic visits and treatment schedules that often the siblings are left alone. At Okizu, all of these kids come together on a level playing field, literally and figuratively. We essentially listened to the music created by all those happy voices playing that game and could sit there for hours doing so. Okizu created a near perfect NOW. And if this wasn't actually heaven....it was pretty darn close. Tomorrow will bring what tomorrow brings, but in that moment they were just kids. Ellie could hold Timmy's hand and be dragged from one part of the field to the other or run off on her own to see her favorite counselor. Timmy, who has recently felt a strong desire to have us with him while he plays even in just the living room, was able to come over to the sideline whenever he wanted just to make sure we were still there before happily running back out to the field. No hospital in sight. Parents lined up watching the ultimate spectator's sport finding 30 minutes of simple peace of mind. They were able to just be kids at Camp.
Kitty and Scooby (above) were Timmy and Ellie's favorite counselors
I get back to that moment 20 years ago where I am listening, peering off into near perfect scenery, and finding that completely unique moment where things MAKE SENSE....and NOW to accompany the crickets amongst mother nature's silence, I have the collective voices of hundreds of gleefully happy kids as serene as the night time skyline from those backpacking days. I don't know what turn is coming next for our path, but I'm not dwelling on it as much these days because the pack of amazing people we are walking next to has grown to enormous proportions and we're too busy trying to have fun wherever and whenever possible. The families and counselors whom we had the great fortune of meeting this past weekend root for each other more so than any sporting team I've been a part of. With an army like that behind you as we all drove away on Monday morning, I can't help but think about how much harder I want to fight for Ellie as a result. The cancer journey definitely trumps the 60 mile trek in 12 days, but both have provided a source of empowerment at just the right time in my life to make sure I (we) embrace the people tirelessly moving forward with us knowing we're all more likely to find that little piece of heaven we all see...together.
Sounds AWESOME. Thanks for telling the story of a great weekend. Love the photo of that brave little body confidently scaling the ladder. Would have loved to see her zip line off into the breezes!!!
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