September 25th, 2017
Stay the Course
It's been quite some time since I've written for the Kyle's Kamp blog. I will honestly say that compared to the first three years I was involved in the pediatric cancer community as a volunteer, this fourth year has been a bit different. I was less engaged and less focused. I shut down my heart a bit. I don't even know that it was conscious.
I've certainly been to a number of events in the last year. I've volunteered in the clinic to play games with the patients. I continued to facilitate the Dreams Events for Kyle's Kamp. I've stood in front of groups of people to thank them for raising money for Children's Hospital Foundation through those events. I've read updates online of children I've met. I've typed out pathetically inadequate "I'm so sorry" comments on the posts of grieving mamas accompanied by yellow hearts and praying hands emojis which seem utterly ridiculous - shamefully, woefully, superbly lame efforts to remind them, "I'm still here. I still read your words. I still hold you close."
So, although I haven't been entirely absent, I've not taken time to sit and write reflections for this blog which was really the first task that I was asked to do for Kyle's Kamp. There are a zillion reasonable explanations for this absence. I have a husband and a household to run. I have three kids who need to be here and there and everywhere all at the same time. I had the not-small matter of a son who graduated this year and went away to college. We have family events and travel and sports obligations. We have mundane tasks to accomplish, challenges to tackle and joyful moments to celebrate. These people are the ones God has entrusted to me and they need me and my attention.
And those are all logical, perfectly good reasons to lessen my time in this effort.
But perhaps the truth is that it's much more than that schedule that keeps me away from this space. Sitting down to write requires something different of me. For me, writing equals feeling. It forces me to search deep and think hard and imagine myself in someone else's shoes. Writing is listening to that still, small voice that says to me, "This is what I need you to learn in this life. This is where you need to act. This is what you are not allowed to forget."
So it was that, determined to have a blog post up before the end of September which happens to be Childhood Cancer Awareness month, I sat down to write. But, it seemed as if all I could focus on was all the hopelessness and sorrow and difficulty that I have witnessed along these four years.
There is still not enough funding for children's cancers. The treatments are still archaic and dangerous. There are new diagnoses. Kids are still suffering. Some have relapsed. Some have died. And my friends who have lost their children will never, ever stop grieving. Frustrated, I clicked the computer closed and went out to for a run.
As I started out in my neighborhood along the boring, suburban sidewalks, my legs felt heavy and my breathing was labored. It was hot and tedious. Everything in my mind and my body was telling me to just quit for today. It was too hard. I was too tired. My pace was too slow. There wasn't any use because the finish line I had set for today was just too far away.
Just before I was about to stop and turn around, I looked up and saw the one short stretch on my whole boring course that was pretty. It is less than a tenth of a mile - a mere moment in the whole of my route. But it is there. In the midst of suburban bland is a perfectly beautiful path through a creek, surrounded by trees and blue sky. It is the one small glimpse of beauty that makes the miles ahead seem doable. It was then that I heard that still, small voice.
"Stay the course."
I finished my run, noticing along the way that just beyond the tedium of a boring block of sidewalk would appear a pond sparkling under the sunlight. As I reached the top of a particularly steep slope, my thighs burning with effort, I passed a sweet, sleeping baby in a stroller. As I neared the end of my run, tired and sweaty, I saw an elderly couple out for a morning walk holding hands.
"Stay the course," the voice urged.
In the Gospel of John, the Savior I worship told me straight up, "In this world you will have trouble." And I know that not one of us will escape it. He never promised us a life free of pain.
But later 2 Timothy 1:7 tells me this: "For we have not been given a spirit of fear, but of power and of love and of a sound mind."
Isn't this the truest fact of our lives? That there will be difficulty and pain and exhaustion and sadness no matter the direction our life takes us? And yet, if we let fear keep us from staying the course, we are sure to miss the beautiful moments that will pop up out of no where. And for me those moments have added up to a life more abundant that I ever could have guessed.
Along this road, I have witnessed stories of strengthened faith in the face of unimaginable loss that take my breath away. I have gained more than one cherished, forever friend who will be part of me for the rest of my life.. I have witnessed courageous battles and triumphant remissions wherein children return to school and friendships and sports. I have watched hundreds and hundreds of people in a community pour all of their love and all of their prayer into one small family lifting them up when they are at their very lowest.. I have seen millions of dollars donated to pediatric cancer research. I have seen young healthy children gain an entire new appreciation for "normal" because of the voice of one brave boy. And even this: I have laughed until I can barely breathe with ladies who have suffered the greatest loss a woman can suffer. I have laughed with them. Real, true, belly-ache inducing laughter.
How in the world could I let fear keep me from that?
It is true that in certain seasons of my life, I might not be able to give as much time to this community as I did in the past. The circumstances of my family and obligations might make that difficult. It even might be appropriate at times to guard my heart. But I will not do that out of fear of feeling. I will not turn my back because it's too sad, too upsetting or too painful. I will not live in the fear that there is no hope to share, no beauty to find, no joy to experience. Because that is a lie.
Whatever it is in this life that you don't want to look at? Whatever path ahead seems too brutal, too painful, too much to handle, remember that fear only robs you of the promised joy and laughter and invaluable lessons that are sure to show up along the way.
Jim Valvano, a mere six weeks before he died of cancer, said, "If you laugh, you think, and you cry, that's a full day. That's a heck of a day. You do that seven days a week. You're going to have something special."
In this pediatric cancer community there is laughter and thinking and crying. There is pain and there is beauty and that makes for a heck of a life. I don't want to miss it. I think I'll stay the course.
Showing Up for Kate 1-12-17
A year ago this week, I wrote about one of the most heartbreaking losses of a child that those of us in the pediatric cancer community in this area have had to endure. Four year old Kate Rhoades had finished her treatment plan for leukemia only a few months before. Her family had held a party, readied her for a return to preschool and looked forward to a future shining blessedly bright before them. The return of her cancer on the heels of that joy and relief was an ambush of unspeakable cruelty. There was no time to process that the disease had returned before she was gone. A year later, for her family and friends, the enduring continues.
I'm not even sure that "endure" is the appropriate word to use when speaking of those who were affected by the death of Kate. No words are adequate to describe her family's journey forward in the wake of her loss. Merriam-Webster's website mentions synonyms for enduring that include bearing, suffering, tolerating, and standing.
Yes, Kate's family and friends have done all of that.
The site mentions that many of these words imply "the power to sustain without flinching or breaking."
Um, not so much. There has been flinching. There has been breaking. And yet, the calendar page turns indicating that it has been one whole year since the enduring, bearing and suffering began. I wish I could say it had ended.
There will not be human words or actions and certainly not any amount of time that will have the power to sustain us without some breaking and flinching. Nothing will cancel out the fact that Kate is still gone. That her parents' arms are empty. That the world lost someone crucial and important and needed and that we cannot get her back. So, then, what is there to do? What do we when we are flinching and breaking?
I think the only thing to do is to keep showing up for the enduring. Bruised and battered; baffled and bitter, and most certainly, broken, we clear the ash and dust from the air and we show up in search of something to sustain us. We show up desperately looking for beauty, for hope, for light - in essence for anything that might move us toward wholeness.
And oh, how sweet little Kate Rhoades's people showed up for her in the last year. Oh, how they showed up.
That team of baseball players I wrote about last year? That group who had claimed Kate as one of their own for the Kyle's Kamp Memorial Day Tournament? The boys for whom I worried with a relentless list of "what ifs"? Despite their brokenness, those kids showed up for their girl.
The Loudoun South Eagles - eleven and twelve year old boys - attended her funeral in matching Kate's Crew shirts. They took part in Random Acts of Kateness throughout the year. They encouraged friends to send pictures to a gentleman battling MS. This man received over 100 beautiful cards colored and decorated in the memory of Kate. On Kate's birthday, the boys handed out gift cards to strangers all over town with a note about her in hopes of raising awareness for Childhood Cancer.
They participated in "reading buddy" sessions at a library that Kate had frequented with her Grandma. They purchased a baseball for the Dream Wall at Nats Park so that Kate would forever have a place on the wall at her parents' favorite ballpark.
Oh, and those boys played some baseball, themselves, too. They surely did. They adorned their jerseys with an emblem bearing Kate's name and showed up on the baseball field like never before. Inspired by her to be their very best, they recorded win after win throughout the year and had their most successful season yet with an astounding record of 25-7. They claimed numerous tournament championships, always posing after their victories by holding up the number 4 for their "forever four years old" best girl.
In the Kyle's Kamp Memorial Day Tournament Kate's boys set aside their regular jerseys and played each tournament game in special Kate's Cause tshirts. The team raised over $10,000 for pediatric cancer research at Children's National Medical Center in honor of Kate.
Even the siblings of the team members held Kate in their hearts all year. A sister of one of the Eagles wrote her "Thankful Essay" at school about her sweet friend.
Kate's family, the most broken of all, showed up, too.
Lindsay and Michael Rhoades attended Kyle's Kamp's Casino Night fundraiser a mere six weeks after her passing. They chatted with other parents of children with cancer and supported various organizations in their efforts to fund better treatments and research for children like their daughter. Kate's grandma showed up for our Kyle's Kamp Holiday Shop this past December. She helped pediatric cancer patients choose gifts for their families. She smiled at them and chatted with them, wrapping their gifts in bright colored paper and adorning them with ribbons. She did all of this while memories of her granddaughter swirled around us as real and as present as the very air in the room.
Lindsay bared her soul online, writing some of the most agonizingly beautiful words on loss and grief that I have ever read, letting the world know that we could not shut our eyes to children like hers. She would not let us forget her Kate. We needed to know about her, We needed to understand the magnitude of her loss. I am personally forever grateful for the way her words remind me of the gift of every breath that my children take. I am in awe of the talent she has for spilling the broken pieces of her heart on to the page. The importance of her writing cannot be measured. And I would guess this is only the beginning. Through her words, Lindsay shows up in front of the world for Kate. I would argue that Lindsay is determined that her pain will not be wasted. She has something to teach us. In her brokenness, she is showing up here not only for her beloved daughter, but for you and for me as well.
It is through reading Lindsay's words, that I have found that Kate has shown up as well. In big ways and small, she has shown up when her mama needed her most. Through sunrises or a smiling forgotten photo, Kate has shown up. Through images of foxes on socks or on sweaters, she has shown up. And even, in the stare of a real live, honest-to-goodness fox, sitting in the cemetery or on the sidewalk of a suburban street, Kate has let her family know that she is near.
We should never doubt the ability of broken people to do beautiful things. In the midst of crushing grief the Rhoades family has and will continue to share their story to help other families. I had worried that the introduction of young boys like the Loudoun South Eagles to tragic loss would result in young men irreparably harmed. And yet, they took their broken hearts and showed up in their community to do remarkable, irreversible good.
And even more, we should never doubt the ability of the inexplicably brief life of tiny little girl to change the world for better. I would contend that the good things that will come out of the people broken by Kate's loss will eventually number more than the all stars in the sky.
God bless you and keep you, Kate Olivia Rhoades. We promise to keep showing up for you.
I've met some pretty impressive people during the three years I have volunteered in the pediatric cancer community. If I reflect back on each child and family I have met, I am keenly aware that, in many ways, before I embarked on this journey, my world was small and safe and closed. It was generally happy and peaceful and comfortable. Today it continues to be all of those things for the most part, except that my heart is more open and certainly more susceptible to understanding the horror that is the suffering and even death of children just like my own. Remarkably, dipping my toes into a space with some of the scariest and brutal of circumstances, has not darkened my world. To the contrary, there are, in the midst of suffering and even crushing grief, countless sources of light. This light filters through in various forms: courage, persistence, compassion, friendship, loyalty and above all, hope. Each child I meet, each family, each nurse, each doctor, and each volunteer seems to shine brighter than the next.
Their names and faces are many. Sometimes I forget that the blessings far outweigh the burden of this work. Sometimes I wonder if I can handle meeting one more because the reality of childhood cancer is that now I am only able to see some of these faces in photos. Some of them will remain forever thirteen years old, twelve years old, or four years old.
I know that another introduction to another child might bring more worry, more pain, and more potential for loss and grief. I fret that this time it will be more than my heart can bear. Of course, most would understand that walking through the loss of another child might end my capacity to stay here. It would be sensible to back off, I suppose. And I have pondered all of that.
But it is in those moments of hesitance that I remember that light will always shine brighter than the darkness. It is then that I remember that no matter what happens tomorrow or next week or next year, the beauty of new connections and the palpable sense of hope in the relationships I have formed will always win.
Because despite what most might think, often there is hope in this community. There is remission. There is success. There is life.
Last summer, my friend Randi and I were honored to represent Kyle's Kamp at the National Capital Chapter of the Association of Pediatric Hematology/Oncology Nurses Scholarship Dinner. These nurses give college scholarship money to students who have been treated for cancer and blood disorders. It was a special night to recognize recipients of APHON's scholarships which Kyle's Kamp had assisted in funding in the past couple of years.
There were a number of remarkable recipients, each who had written an essay as part of the application process. They sat before us in a row and each spoke for a bit about their plans and about their experiences. We listened and nodded and clapped and beamed at the beauty of so many promising futures defiantly rising out of the grip of diseases that had tried to steal their dreams.
And then there was Stephanie.
Stephanie was asked to read her essay aloud to the attendees. And she pretty much blew the roof off of the place. Randi and I listened in awe and in admiration and yet again, with immeasurable gratitude for the opportunity that Kyle's Kamp has afforded us in forming relationships that will change our hearts forever.
This wise, insightful, brave child says this:
"Life is all about relationships. How people are treated - how we treat ourselves - determines who we are and what society is and will become."
And in those moments I realized again how important it is to stay in a place that is full of fear and pain and suffering. Because it is all about the relationships. Relationships with children who are sick. Relationships with parents who are terrified. Relationships with siblings who are confused. Relationships with nurses and doctors and advocates who are depleted, but determined to give their hearts and souls and minds to a broken world.
These are the relationships that have transformed me. They are the relationships that show me that we can leave the world better than how we found it. That night last summer reminded me of the gift that Kyle's Kamp is because it brings me into relationship with people I might not otherwise meet.
And Stephanie, along with those other students standing before me in that room brought that gift to life. That this one more child might take up space in my world? This one more beautiful life? This one more beacon of hope upon hope in the bleakest of circumstances?
It is true that the light shines in the darkness and darkness will not overcome it. I know this because each time I attend an event for pediatric cancer, another child's face casts a light that burns brighter than before. And I am humbled and awed at how as they have each taken a place in my life, my world has become illuminated by a sky full of stars.
Please watch and listen to Stephanie's story and if you would like to help Kyle's Kamp and APHON invest in the futures of these remarkable kids, please donate to our scholarship fund at the link below the video.
Many thanks to Mike Gillette of Truth 365 for creating this video.
Tell Me Somethin' Good
I haven't written a blog post for Kyle's Kamp in awhile. When I first joined this cause I agreed to write a monthly blog for the site. Sometimes it's hard. And honestly, despite the subject matter, sometimes it's easy. Being in the presence of the children, families, doctors, nurses and advocates I have met in the pediatric cancer community is awe-inspiring. It's brutal and beautiful all at the same time. There are so many lessons to be learned and perspectives to be explored. There is no doubt that these experiences have informed and inspired my writing and, in many cases, made it better. Still, there are moments when I sit at this keyboard and the words will not come. There are times when I wonder if there is anything left to say. There are times I worry that my words have become not encouraging, but empty. Not hopeful, but burdensome.
The last time I wrote here was six months ago. As I sat shocked and numb by the news of the sudden death of a four year old girl who had seemingly beaten leukemia, I tapped out words and wondered how the Kyle's Kamp community could move forward after becoming so attached to a sunny-faced beauty like Kate. I wondered if we wouldn't just want to throw up our hands in defeat. I wondered if anyone would ever tell me something good around here.
In the months following Kate's death, there has been more loss. There has been more pain. Grief and mourning continue and no one has "gotten over" these losses. We have gathered for funerals and wondered how many more services we will have to attend for children. How many slideshows containing images that break our hearts will we have watch? How many prayers that God be close to the broken hearted will we have to plead?
But, to be sure, in the midst of the bad news, there has been some good news. There have been some clear scans. There have been some declarations of "NED"(no evidence of disease). There have been some families who have cleared the dust from their eyes and have found that the world looks bright again. Often these triumphs for families can be tinged with guilt especially for those who have gained life-long friendships with other families in this journey - families whose outlooks aren't as bright. But the fact is that these moments must and should be celebrated. They must be faced with gratitude and hope. Because otherwise, frankly, what are we doing here?
The thing with this life, as we have definitely seen in the news this week, is that it is full of all kinds of heartbreak, all kinds of evil and all kinds of brokenness. But that cannot and will not be the final word. I believe that more than all of that, there is goodness and there is beauty. There is celebration and there is joy. There are new beginnings and there is hope. There is a chance to tell you somethin' good.
Kyle Hahne was diagnosed with leukemia in October 2010 at the age of six. Kyle went through numerous treatments over the course of 3 and 1/2 years. He missed out on being in the classroom with his buddies. He lost his hair. He was very, very sick. During his treatment, Kyle became stronger at times and learned from his family what it was to walk alongside and support other kids who faced the same diagnosis as he faced. Kyle, even at his young age, has helped and continues to help numerous children he has met during his time in treatment. He was an encourager and a friend to more than one fellow patient. Indeed, for one young boy, Kyle was hope.
Last December, I was volunteering at the clinic at the Kyle's Kamp Holiday Store chatting with the mother of a patient as he shopped for gifts for his family. She leaned up against the wall and sighed. I could tell she was tired and her face was drawn and serious. Suddenly, when she noticed that the store was sponsored by Kyle's Kamp, her face lit up.
"Oh! We just love Kyle. I am so grateful to him. My son has leukemia, too. He has been really tired and really frustrated with not feeling like doing all the things he used to love to do. Kyle was chatting with him one day and he made him feel so much better. He told him that he knew he felt tired and he knew he felt sad, but that one day, he really would feel okay again. He told him he would feel like playing again and even running again. I'm so grateful for that. Are you his mom?" she asked.
(Time out. Listen. I don't mind telling you that I thought for a second - only a second - about lying through my teeth and claiming Kyle as my own. That's how special the kid is.)
Instead, I shook my head "no" and told her that definitely sounded like the Kyle I knew and that I would pass the story along to his parents.
I'm guessing that probably one of the most difficult things for Kyle during those 40 plus months was exactly what that mom had relayed to me. Kyle loves baseball and he missed a lot of time playing the sport he loves. He had to take time off. He had to watch from the bleachers or even just on tv. I'm pretty sure he missed the heck out of being on that baseball diamond. In February of 2014, Kyle had his last treatment and he started working his way back to his favorite game.
Last summer, Kyle made the Little League All Star team which is pretty awesome all by itself. But, then he did it again this summer. Little League is big stuff around these parts and practicing for All Stars every single day in the summer heat and facing pitchers and hitters from across the area is no easy task.
On June 18, 2016, Kyle Hahne came up to hit with the bases loaded. Don't you know that at that moment, his parents and friends and family were just happy to see him healthy and strong and could have been simply content to see him have the chance to swing that bat?
Well, just swinging that bat wasn't quite enough for Kyle.
A twelve year old boy who had endured spinal taps and blood draws and chemo and nausea and more than I can even wrap my head around stepped into the batter's box with a bigger dream. He knocked that baseball over the fence. A boy who had suffered one of the most horrific diseases that anyone can face, much less a child, hit a grand slam, scoring four runs with one shot for his team.
So, yes. In this community there is sadness and grief and pain. And we spend a lot of time praying big prayers and dreaming big dreams. And sometimes those prayers are answered and sometimes those dreams come true.
PS Kyle's All Star team won the District Championship and goes on to the Virginia State Tournament this weekend to play for the state title. That's a little extra somethin' good for a kid that absolutely deserves it.
Wrestling with What ifs
A couple of days ago I heard the news that yet another child was lost to cancer in our community. Kate was only four years old. The worst part of her journey seemed to be over. She had celebrated her last treatment for leukemia with a "No Mo Chemo" party in September. She was getting back to the life of a regular preschooler - friends, school, playdates.
Then suddenly, Kate relapsed rapidly and irreversibly. Her little body could not withstand the onset of leukemia this time. Her doctors did everything they could do. She died Tuesday morning.
Kate was one of Kyle's Kamp's Patient Ambassadors. Each team participating in our Memorial Day Baseball tournament and/or High School Diamond Dreams fundraising games has the honor of hosting an area pediatric cancer patient. At our Memorial Day tournament, only eight months ago, Kate was the ambassador for a very special team, the 10U Loudoun South Eagles. The Eagles players included a number of great kids who have at various times been teammates of my son, Drew, over the past three or four years. The Eagles coach, Travis, is a friend and member of my church. These boys treated Kate like a queen; inviting her to their games and practices, showering her with gifts, donning her name on their batting helmets and even making her a special video. They dedicated their tournament to her, chanted her name in their huddles and wore special "Kate's Krew" t-shirts.
When I heard the news of Kate's passing my first concern was of course for her parents and close friends. Quickly, though, I remembered my friend, Travis, and his team of 10 year old boys. My heart sank. I felt guilt and horror at the shocking news each of these boys would be facing when they returned home from school Tuesday afternoon.
"Dear God." I thought. "What have we done to such young children to introduce them to this kind of grief and
tragedy? As adults we cannot make sense of this. We cannot explain this. What are these parents to say? How are they to say it? What will this do to these children?"
I tend to think of myself as a woman of faith and trust and yet in an instant I was overwhelmed by fear and doubt. Before I could get my shaky hands to click out a text to my friend, Sara, Travis's wife, I allowed the fear-filled "What ifs?" to crowd my mind. Relentlessly, each of the young faces of the Eagles players crossed my mind like a slideshow.
What if this is too much pain for them?
What if they can't reconcile this brutality with the God we have assured them is good and loving?
What if they have nightmares?
What if they become anxious that they will get sick, too?
What if they become bitter and angry?
What if they become fearful that a sibling will die, too?
What if this opens up a slew of questions that adults can't possibly answer?
What if they see the world as dark and unfair now?
What if? What if? What if?
It occurred to me later that this "What if" game is similar to one of those game shows where you can choose what's behind Door #1 or Door #2. In those moments of fear and worry, I was choosing to accept only one option: a world of pain, worry and defeat behind Door #1. But as I prayed for Kate's family and for those young ball players, God reminded me that if one chooses to let her faith be bigger than her fear, she can walk through another door. While the future behind Door #1 might be full of darkness and despair, the promise of my faith tells me that death and heartache do not have the final say. The gift of Jesus Christ gives me Door #2. That door is weathered and broken and splintered. But if I look closely, I see that there is most definitely light filtering through the cracks. And those streams of light bring different questions.
What if, for Kate, a boy practices harder this year with the understanding that the very simple act of playing catch with his dad is a gift beyond measure?
What if, for Kate, a boy determines to raise even more money for the tournament this year thus giving exactly the last dollar that researcher needed?
What if, for Kate, a boy studies a bit more for that math test, knowing that just sitting in his classroom is a blessing she was never afforded?
What if, for Kate, a boy determines to become a scientist, or a doctor, or a nurse working with pediatric cancer patients?
What if, for Kate, a boy decides that maybe his little sister isn't so terribly annoying?
And hey, what if a boy realizes every little ball player's dream and actually does become a professional baseball player making a ridiculous amount of money? AND THEN what if, for Kate, that boy grows up to use that money to start a foundation or build a hospital or fund a clinical trial?
What if, for Kate, a boy remembers that qualities of strength, bravery and perseverance are not really found in mythical SuperHeroes, but are absolutely present in any one of us - even a tiny, four year old, sunny-faced little girl?
What if, for and because of Kate, these young boys will resolve that in the midst of a world that is broken and battered, they will become men of character and purpose who will be committed for however many years they are given here to spreading light in the midst of darkness and hope in the face of horrible tragedy?
What God has shown me tonight is that I need not fret that these boys will become scarred by the experience of knowing and loving Kate. There is no doubt there will be scars. But they are scars that will make them better students and teammates, better brothers and sons, better friends and eventually better men.
Perhaps the most important question I have to ask myself tonight is this:
What if, for Kate, for her family, for her friends, for those young baseball players, and for me, I can truly believe the words of the Apostle Paul in Romans 8:18? What if "our present sufferings are not worth comparing to the glory that will be revealed to us?"
What if we might believe that the glory that has been revealed to Kate and Gavin and Gabriella and Mathias and so many others we have lost is beyond any beauty, any peace, any joy that our minds could ever conceive?
Those are the "What if" questions that I will focus on today. Those are the questions that are rooted in faith and trust and not fear and doubt. Those are the questions whose answers remind me that there is always a light shining in the darkness and the darkness will not overcome it.
Rest in peace, sweet Kate. For you, we will work harder, speak kinder, love deeper. For you, we will be better.
Lessons from Mathias
Today Kyle's Kamp honors a special friend, Mathias Giordano - one of the most charming, brave, polite, compassionate and funny boys I have ever met - who was lost a year ago today to osteosarcoma. In the past year, his loyal friends and family have done some remarkable work for pediatric cancer patients in his name. They have been relentless - courageously showing up at event after event. And every time I see them, I feel both the absence and the presence of my young friend in equal measure. A year later, we find this world Mathias left increasingly broken and dark. We feel increasingly terrified and weary. This boy we lost endured 30 rounds of chemo, 3 major lung surgeries and the amputation of his leg. I'm certain that on many days he was terrified and weary. And yet, in the times I saw him, he seemed always to be looking at the world as it should be, as it could be and not as it was.
This morning I wonder how Mathias might have changed the world if only we'd worked harder to find the right treatments for him. I wonder how the future of a boy so compassionate, so brave, so full of character could have helped to heal the world if only we could have healed him. Then I remember that Mathias only needed just a short time - a handful of hours with me - to teach me what one person can do to change the world. Mathias had his turn to make the world better and he was a champion. He is leaving us to our turn. Our God has called us off the bench, friends. Our turn. We're up.
This week Kyle's Kamp will host a Holiday Shop for patients at the Center for Cancer and Blood Disorders in Falls Church. We have been overwhelmed with gift donations for children of all ages and for moms and dads as well. Patients with appointments will be welcomed to shop (free of charge) for a gift for each of their family members and of course, will choose something for themselves. Volunteers will wrap and tag the gifts for the patients and send them home with packages to give to their families. I look forward to spending this week and most especially this day, when are hearts our heavy with the memory of our friend, among the brave and beautiful children fighting cancer in our area.
Mathias, I cannot promise that in this 2nd year of a world without your example that there will not be times that I will be terrified and weary. But, today I am ready. Today I will choose hope and faith. Today I will work hard in my little corner of the world to make it as it should be, as it could be. You taught me well, friend.
In September Kyle's Kamp joined forces with other organizations for Pediatric Cancer Awareness month. We participated in various events here in the DC area and met numerous volunteers from around the country.
As usual, my favorite events to attend are those where we get to interact with the patients, doctors, nurses and families. I spent most of Friday, September 25th at the Northern Virginia Center for Cancer and Blood Disorders clinic with volunteers from Kyle's Kamp and other organizations celebrating the gaggle of superheroes that run around that place. I can give you some top secret information: If you are looking for the headquarters for all legit superheroes, that is where you will find it.
I learned, as I always do in that place, that the bravest and strongest spirits can shine through the littlest and weakest of bodies. The patients at the clinic were ecstatic - playing games and drawing pictures, decorating princess tiaras and coloring masks. Children dressed up as their favorite superheroes, had their faces painted and posed for photos with Captain America and the Ninja Turtle with the Purple Mask (Raphael? My boys would be so ashamed) There was a lot of laughter and a lot of smiling.
The stories of America's superheroes tell tales of saving the world from evil. Of taking down the bad guys. Of rescuing the weak. But I have learned way more about courage from this place than I have from any movie or comic book I might have happened across. Because unlike Superman, who can always go back to regular life as Clark Kent or Spiderman who can return to a normal day as Peter Parker, these little superheroes and their parents can't walk out of the clinic doors to go back to a regular, normal life. True superheroes do not have shields and fly through the air, only to change back to a carefree normality in an instant. They can't fluctuate between ordinary days and crisis modes. To me, the true superheroes are the children behind the face paint and masks that I met last month.
Bravery is not in the body of a muscled, caped crusader but in the heart and soul of a children whose bodies have betrayed them. These children have no choice but to be courageous, no choice but to come face to face with evil. Their parents have no choice but to put on a smile and pretend to be powerful as they walk headfirst into a journey filled with the greatest fear a parent can face. One little Ninja Turtle was on his way to get a spinal tap. One little Avenger was hopeful to go to school after his treatment, but likely wouldn't have the energy to make it the entire day. One little princess would stay later than she would've chosen, attached to her IV even after the snacks and crafts were cleaned up.
In regard to arguably the most famous of all superheroes, writer and producer J. Michael Straczynski said, "For a lot of people, Superman is and has always been America's hero. He stands for what we believe is the best within us: limitless strength tempered by compassion that can bear adversity and emerge stronger on the other side. He stands for what we all feel we would like to be able to stand for when standing is hardest."
Mr. Straczynski is correct that superheroes help us to believe we might find super power in ourselves. I find Superman in all of the children and parents I meet in this fight. They show me the most powerful strength, the most powerful will, and the most powerful compassion and make me believe that these things might just be within me, too. They are ordinary people who find extraordinary strength when they have no other choice. They do not wear capes. They do not fly. They do not lift cars into the air or scale the sides of buildings.
They smile when smiling seems ludicrous. They dance when their feet are sore and tired. They fight when the battle seems lost.
When it comes down to it, they simply stand when standing is hardest.
Well, it's Thursday. In social media circles this is the day when people post old photos of themselves, family and friends. Some go way back causing those of us who were teenagers in the 80s some serious shame and regret. Some show photos of college parties or weddings. Most - at least in my circle of friends - are posted by parents of their children.
We remember the awe of peeking at pink newborns swaddled tight. We giggle at toddlers with cake smeared on their faces on 1st birthdays. We zoom in on baby faces, looking for familiar traces of the teenagers who tower over us now. We lament the lightening quick passage of time, commenting, "How did she grow up so fast?" and "What happened to this little pudgy toddler?" and "This baby is going to college?!"
In theory, I could choose a Throwback Thursday photo of my children from last year, last summer or even from last week.
But, what if as each day passed, my options for Throwback Thursday grew farther and farther in the distance? What if I had no choice but to scroll down weeks, then months, then years to find a photo of my child? What if I didn't have a new photo to compare to my old photo? What if all of the images of my child stopped at age thirteen? Or five? Or two?
This question stirred my heart at Curefest this past weekend - a national gathering to raise awareness for pediatric cancer which took place in Washington DC. The reality hit me hard as I walked among throngs of grieving families after spending most of my summer away from fundraisers and awareness events. Time had marched on for me, for my children, and for the world around us. The question nagged me, Does time, in fact, heal the wounds of my friends?
I'd like to think it does. I'm pretty sure it doesn't.
On the National Mall last week, tents and tables set up for cancer awareness organizations from across the country stretched out as far as I could see. Shining faces and gleaming smiles of hopeful children stared out at me on posters and on t-shirts, on brochures and on buttons. Many were photos of triumphant survivors. Still, countless more were "throwback" photos of children lost - last month, last year or many years ago.
And as I looked out at all of these children - all of them important and vital and missed - I tried to put myself in the position of the precious parents I have met on this journey. I wondered about them as they left to go back to their neighborhoods and schools to stand among parents like me. Parents with Iphones poised to capture important milestones, goofy selfies and momentous events - new experiences to stash away for a Throwback Thursday far in the future.
What if there would be no more League Championships? No more first days of school? No driver's test? No SAT or college choice? No graduation? No wedding?
And then this: What if as the years marched on there would be countless more children following in my child's place? More diagnosis. More death. More funerals. More fundraisers. What if each child gone might get lost in a sea of others? What if I felt like the image of my child had become blurry and frayed around the edges? What if I felt like he or she was being forgotten?
Honestly, I don't have the answers to these "what ifs". As a mother of healthy children, unless something like this befalls my family (and it could), as compassionate and present as I might try to be, I simply will never understand the depth of this pain. No matter how many of these parents I meet and how many with whom I chat, I will never know.
So what can I do? What in the world is there to do?
Yesterday, as I was mulling over these thoughts in preparation for this post, I went to put away the laundry of my 14 year old son. He has grown old enough for baseball games that don't end until 10:00 pm and to study math problems that are over my head. He has grown old enough to make his own dinner and wash his own clothes and stay up later than me. My boy is certainly old enough now to not need his baseball jersey, hat and pants laid out for him by his mommy.
When I picked up his jersey out of the laundry basket, I noticed his new number. He wears the #15.
In the dark early hours of a July morning in 2013, I made a promise to another young boy who once wore the #15. A boy I had never met, but whose face and family had consumed my thoughts that entire summer. His name was Gavin Rupp and he had passed away due to brain cancer at the age of thirteen mere hours before. Today - Throwback Thursday - is Gavin's 16th birthday. As I held my son's #15 jersey, I knew what there was to do.
Romans 12:15 tells me to "rejoice with those who rejoice and weep with those who weep".
Today, Gavin's birthday will be a day for remembering and rejoicing for his life and weeping for its loss. Today I will remember Gavin. I won't have memories of his day to day life. The only memories I have are of watching him play a baseball game at Nats Park and of seeing him across the room at a Kyle's Kamp fundraiser. How I wish I could throwback to those moments so that I could look into his eyes and tell him, "YOU. YOU will be remembered. YOU will change the way I look at my days, at my children, at my life. I won't remember every moment of every day. But, when I forget, it is YOU who will remind me to rejoice in the most ordinary of moments."
Today I will rejoice in the beauty of a world that can be brutal. I will rejoice in the gift of the time that Gavin was here with his family and I will rejoice in the gift of whatever time will be given to my boys. And I will weep. I will weep for the gaping hole that Gavin's absence leaves in his home, in his school and in the world where his future was not realized.
This Throwback Thursday, I will lay out a new jersey for a new #15 and I will not forget a boy who wore #15 before. The image of Gavin and the lessons his life taught me are in sharp, clear focus in my mind and heart today.
We will not forget you, Gavin Rupp. We will rejoice for you and we will weep for you. We will hold your family in our hearts today. Happy Birthday, Buddy.
Local Friends - Please join us in remembering Gavin and honoring his family at the 3rd Annual Gavin Rupp Open Golf Tournament hosted by Kyle's Kamp at Chantilly National Golf Club on October 5th. SEE DETAILS HERE.
At Kyle's Kamp our biggest event is our Memorial Day Wood Bat Tournament for travel baseball teams. This year almost 100 teams from 8U-15U participated, raising over $300,000 for Children's National Medical Center's Pediatric Oncology division. As the last team received its championship trophy Monday night, I could almost hear an audible, "That's a wrap!" from a whole host of volunteers who made the tournament happen.
Unfortunately, the over thirty children who served as Patient Ambassadors for teams in our tournament as well as in our High School Diamond Dreams games, can rarely ever utter the phrase "That's a wrap!" when it comes to their journeys in fighting cancer. Even when treatment protocols come to an end, these families continue to live with some element of fear that their battles might start all over again.
In addition to Kyle Hahne, the namesake of Kyle's Kamp, all of us involved in this organization are daily inspired by the memory of Gavin Rupp, a 13 year old boy who died of brain cancer in 2013 and said,
"Before I had cancer, normal just felt kinda boring. But normal now, is like . . . kinda special."
Gavin's wish to feel normal was not unique. Children with cancer are thrust into incredibly abnormal days of scans, biopsies, chemotherapy treatments, hair loss and radiation. Through an ordinary, normal game of baseball - the game that both Kyle and Gavin love - Kyle's Kamp seeks to bring some light into a child's life when it is marred by darkness. Our teams share the experience of playing a game of catch, running the bases and spitting sunflower seeds through a chain link fence with children who often have not experienced the blessed gift of a "normal" day in a very long time.
In keeping with the mantra that Kyle's Kamp provides the opportunity for "kids helping kids", the Patient Ambassador program connects a child who has been or is currently in treatment for cancer with each of our high school Diamond Dreams fundraising teams and our Memorial Day Tournament teams. The ambassadors feel honored and special. They are introduced by the game announcers, are able to throw out the first pitch and spend time getting to know players and coaches. Our teams were extremely gracious and generous to their ambassadors this year providing them signed baseballs, flowers, personalized jerseys and a multitude of gifts.
What we have found is that even as the teams strive to make the patients feel special, the children who benefit the most are the healthy, vibrant athletes who get the honor to engage with these ambassadors. They are able to see early on that life can change in an instant. They find that for children just like them, a day can be full of unexpected challenges that are far more daunting than facing a fastball from an opposing pitcher.
Some might think that these lessons might be too much for these children or maybe that the challenges these patients face are lost on a young baseball player focused on getting hits and scoring runs. I don't think so.
The presence of our Patient Ambassadors show even our youngest teams, that if they look hard, if they give more, if they open themselves up, little people can do big things. That no matter if you are small or large, sick or healthy, athlete or not, you can be a blessing to another. That even in the midst of darkness and fear and uncertainty, there is courage in the youngest of God's people. There is gratitude in the most brutal of circumstances. There is laughter in the most serious of situations. There is hope in the most fearful of challenges.
On an ordinary day on an ordinary ball field, there is an extraordinarily beautiful life to be found.
Please check out our video starring many of our Patient Ambassadors from 2015. A giant thank you to Randi Gladstone for taking on this program and hitting it out of the park! If your child is in treatment currently or has been in treatment in the past for pediatric cancer and you would like to have he or she participate in one of our Dreams games or our Memorial Day tournament in 2016, please contact Randi at kyleskamp.Randi@gmail.com
When Rob Hahne asked me to help implement the Kyle's Kamp Diamond Dreams games which encourage high school sports teams to host games to raise awareness and funds for pediatric cancer research, I was a little hesitant. I have been a stay at home mom for sixteen years. My worry when I am asked to do anything outside of my home is that it might take too much time away from my real job - the care and feeding of boys (and their dad). The fact is that there is no binding contract and no paycheck with this Kyle's Kamp gig and I've never felt pushed or guilted into volunteering. Rob made it clear from the beginning that he didn't want it to take too much time from my family.
Still, at first, I was concerned that it might take not only too much of my time and energy, but too much of my heart. In the end, I trusted that God would grow my time, my energy and my heart.enough to join this organization. What I have determined is that God wanted me to make this decision, not in spite of my responsibility to the children He had gifted me, but because of my responsibility to them.
Of course, I wanted to help children with cancer and their families and that is what these awareness and fundraising games do. But in my estimation, the Diamond Dreams games are as much about the healthy, vibrant, able athletes who swing bats and hit baseballs, as they are about the children for whom the games are played.
We live in an area that is sports-obsessed. To be honest, I live in a house that is sports-obsessed. Specifically, the baseball situation is crazytown-banana-sandwich-cuckoo-for-cocoa-puffs around here. And I'm fairly unapologetic about it because I know that baseball teaches my children way more about life than it does about a ball and a bat. My involvement in this program makes me think long and hard about what it is that I want these high school athletes to gain from their experience in playing these games. So it was that the Freedom High School coach asked me to say a few words to my son's baseball team as both the JV and Varsity will host Diamond Dreams games in the next couple of weeks.
The morning I was to stand in front of the team, I wrote some things down to gather my thoughts because when you're going to be in front of a mess of high school guys, there is a legitimate fear that you might suddenly revert to your 14 year old dorky self. And although I don't wear my bangs all jacked up to the sky anymore and I've left the purple eyeshadow behind, I still was a bit nervous. I didn't want to ramble because I was pretty certain if I did, my 16 year old son might have muttered something along the lines of "While we're young, Mom. Wrap it up."
I honestly don't know what all I said. Maybe too much, maybe not enough. But I was trying to be quick, trying not to cry and trying to remember that I was at a public school, so I wasn't allowed to bring the Jesus as much as I might have liked. :-).
In any case, here's what I want to say, not only to my sons and their teammates who play in Kyle's Kamp's games, but to all of the athletes that are given the gift to play a sport they love. A gift to swing for the fences or strike out looking. A gift to start the game or sit the bench. Or even just the gift to wake up to one more day.
In my mind, the Kyle's Kamp games bring together two things - baseball and an obligation to the people God puts in our path. Perhaps, it seems an odd combination, but I don't find it so at all. If we can take what we love and give it a bigger purpose? If we can take the talent God gives us and use it in grateful response to Him by caring for His people? Well, I think that's a perfect match.
Coach Eric Taylor, of Friday Night Lights, is the greatest coach of all time.
(Yes, I know he's not real. Play along.)
Coach Taylor once said that teenaged boys only care about two things: Food and Girls. I think there is certain biological truth to Coach Taylor's statement, but I know lots of boys. And I know that they are capable of caring about more. I know that they can wonder about something greater than themselves. That they can see the world with eyes of compassion and purpose above their immediate goals.
I want you, players, to make the children with cancer who attend our games feel special. I want these kids to be honored and recognized and I want them to feel all along that these games are for and about them. But I'm a little greedy. I need these games to be about more than one child. I need them to be about a team of young men. Young men who can give more and do more and feel more than society believes they can.
I want this game to help you remember the gift that this life is - that this day is - that this game is. Last year, Mathias Giordano attended our Freedom Varsity game seven months before he died. Mathias's parents knew that day that their son did not have many more days to be with them. They had been given hard, cold, medical facts. They knew because of scientific expertise that each day they had with their boy from that day on was a gift slipping away.
Boys, you might not have been given any medical evidence telling you that you are not guaranteed tomorrow. But, you aren't any different than Mathias was that day. You do not know how many days you will wake up to sunshine on the baseball field. You do not know many days you will wake up to rain cancelling your game. You do not know how many days you will get to step up to the plate to strike out or hit a line drive or how many days you will have to high five your buddy in the dugout. No one can tell you how many days you will be given
Of course, I want you to realize that there are more important things than baseball. But I do think that baseball is important to God because you are important to God. If God has given you a talent for anything, then He gave it intentionally and it is how you use that talent that will determine if it becomes a gift. Not only a gift for you, but for your family, your friends and for anyone who God might put in your path. Diamond Dreams games tell you to be grateful for the gift. Don't let it sit unopened. Don't let someone tell you it isn't important. Use your talent. Use your gift. Use them well in grateful response because you do not know how many days that gift will be offered
Thank you to all teams participating in the Kyle's Kamp Diamond Dreams games including the following teams: Paul VI Varsity Baseball, Good Counsel Varsity Baseball, McLean Varsity Baseball, Langley Varsity Baseball, Kettle Run Varsity Baseball, Woodson Varsity Baseball, Washington-Lee Varsity Baseball, Robinson Varsity Baseball and Softball, Stonebridge JV and Varsity Baseball, Jame Madison JV and Varsity Baseball, Oakton Varsity Baseball, Fairfax Varsity Softball, John Champe Varsity Baseball, West Springfield Varsity Softball and Baseball, Westfield JV and Varsity Baseball, Freedom JV and Varsity Baseball and Softball, CD Hylton Varsity Softball and Rock Ridge Varsity Baseball. To register your team (any sport, any level) go to www.kyleskamp.org and click on Dreams Events.
Jenn Skinner is a Christian and a Texan(Texas Longhorn to be specific!) living in beautiful Virginia with her very patient and funny husband and her 3 very impatient and funny little boys/ball players, She joined the fight against Pediatric Cancer with Kyle's Kamp in 2013. She also writes about just about everything and nothing and the ridiculously abundant life God has gifted her at her blog, The View From Behind Home Plate