Every February on President’s day weekend the Bryce Jordan Center in Penn State is electrified with the buzzing of families coming in for the weekend, eyes lighting up with delight as people spot others they haven’t seen in a year, giggles of glee as kids reunite with other kids who’ve walked their same path, hugs hello, and even some tears and I’m sorrys for others whose lives have changed drastically in a years time. There is clapping and more hugs and wolf whistles as Penn State students arrive, with energy bouncing outta them like super balls on pavement!! There are however various groups that make up this great big amazing 15,000+ member family.
The first group I’ll mention, and also the most important group, if there is a chain of importance here, least ways the group that is the cause of this reunion, would be those of us that come together a diverse ragtag collection of individuals. All disease weary, some treatment worn, chemo infested, steroid pumped, others grief stricken, freshly wounded, shocked, traumatized, and still others elated, rejoicing, triumphant, celebrating. We live close together and miles apart, are of varied religions, and occupations, a kaleidoscope of race and skin color, with everything and nothing in common, yet we are one ginormous family thrown together in a giant amusement park of life (although I can’t say there’s any of us who are actually amused) to love and fight for the kids placed in our hearts and homes who’ve been handed a ticket from hell for an eternal roller coaster ride. Along with the ride we are handed phrases like evil fortune cookies, that almost send you dizzily over the edge, phrases such as, its terminal….there is nothing more we can do….its only a matter of time….its time to say goodbye….instead of careening drunkenly off the ride into a numb abyss we gather our kids close, plaster a smile on our tight stress creased faces and buckle ourselves in tighter. All the while reaching in desperation to our patchwork family for strength and comfort and for their always ready, always there, listening ears and broad shoulders. There are a few who manage to outrun this nightmare of a ride and after much sweat, blood and tears, oh so many tears, they are given a clean bill of health, and the horrible monster is pushed to its demise…or is it? Somehow at times it seems to have one foot still on the rail, and it pops up in the most unexpected times, putting a damper on happy parents and kids finally sporting a full head of hair and feeling like a social butterfly instead of a sideshow freak. It rears its ugly head in forms of what ifs…what if this ugly disease comes back, what if there’s a spot the dr’s didn’t see, what if what I think is the flue really isn’t…..and on and on. But, at THON, it’s all about these kids! It’s their weekend to shine, whether it’s in getting a wish come true in meeting the PENN STATE football team or cheer leaders, or having the chance to step in the limelight on stage in the talent and variety show, these kids are loved on, carried around high on shoulders, danced with and most importantly made to feel special and normal!! Us as parents come together feeling like finally!! Somewhere where we are all on the same page, where we all get each other, after all we are kinda a club of our own breed!!
The next group of people is the doctors and nurses and child life specialists and music therapists and a few others I’m sure I’m forgetting to mention although no less important! These amazing people are not only the ones who have had to be the bearer of the worst kind of news to parents in the form of heart stopping I’m so sorry Mr. & Mrs. ??? But your child has cancer….or there is nothing more we can do….they are the ones who are surrounded by this horror every day and when on call every night yet they still come out to this family get together. Some for the whole weekend some only for the amount of time hey got in between shifts some for only a day. These heroes that try their best to come up with a protocol a new medicine, the best treatment to help our kids fight off this horrible monster to help us receive the shortest roller coaster ride. They are the ones we as parents scream at, get angry with , cause we don’t know who else to blame even though deep in our hearts we know they are only doing what they know to do. These heroes who bravely clean up the messes, stick the needles even though they know in the kids eyes they may very well end up being the enemy, they hand out the meds even though they may end up wearing it, and yes some even let themselves be the pincushions as parents practice administering shots before being sent home to do it on their own. This group of heroes are amazing to me because after all that they still faithfully arrive at THON to show parents and their kids that are sticking by their side through not only the horrific stuff but the fun stuff to, they truly show they have a heart for their “families”!!
And now for the group that shows the most bravery, dedication, care, heartfelt genuine support and commitment to this family get together, the 700+ dancers. Those dear souls that have said we are committed to doing what we can to show these parents and kids that we are real about fighting for this nasty disease. These college kids work all year towards this weekend, they train themselves, exercise, raise money, lots of money, and spend time with the cancer kids and their families through out this year. A little while before this weekend arrives they rest up, give up all caffeine, and make sure they are physically fit in whatever areas necessary to be able to stay on their feet for 46 HOURS!! Yes you saw right, 46 HOURS!! Friday night at 6pm. Is the start of their no sitting, no sleeping, no caffeine, on their feet until 4pm Sunday commitment. Its awe inspiring to watch them take to the floor with so much aliveness and unbridled energy. They pour themselves into the line dance, the music, and entertaining the kids. Theirs usually bouncy beach balls and water guns through out the stadium in every direction you turn. As the hours pass by there is mail call for the dancers where cancer families and dancer families prepare cards and care packages ahead of time to be delivered to the dancers to keep them going, for encouragement, rejuvenation and to say thanks for what you are laying out there for us and our kids. There is costumed individuals passing through to liven things up to thrill the kids to make great photo props, anything from star wars, to nittany lion, the Philly fanatic, geico gecko to Gumby and all manner of other critters and creeps. As the weekend wears on you see the fatigue setting in, some of the dancers have this zoned look, others are crying, others become hyper, you’ll find dancers holding each other up, massaging each others feet and legs and handing out hugs, and encouragement and coming along side each other. Occasionally there’s a fallen soldier the medics remove by stretcher, sheer exhaustion, low sugar, etc gets the best of them, but they still remain heroes for giving what they had. Sunday afternoon the 300+ cancer families, those of us given a pass off this roller coaster, those of us that have been given the pass of learning how to ride this roller coaster while forever staring at an empty seat, and those who’ve just been handed their pass and are still trying to learn how to hang on, get in line to parade across stage so the dancers can witness who they are standing and fighting for. It’s an emotional time as we all get to meet the original family that was the start of this amazing invention, the Mallard’s, as well as dancers seeing families go through who are empty handed and they realize these people got the worst of the ride, then they see families pushing wheelchairs, carrying kids with feeding tubes, steroid bloating and no hair, they see families with kids who’ve fought and won but now have to live with side affects and families with kids 5, 10, 15, years out that look like they wouldn’t even know what cancer is, and they see some of their own, those who are dancing but were at one time in their lives where these kids are today, and that’s what keeps them on their feet, gives them renewed energy to stick it out those last 2-3 hours. After the parade of cancer kids and their families comes an even more emotional time, tension is running high, you can feel the jumbled tangled mix of emotions rising in the BJC as the music starts in the movie presentation in honor of the kids that are now cancer free, there is much clapping and celebration and happy tears as family and friends think about and rejoice for what their kids went through to get to this moment of health today, there is also tears of sorrow for those of us who will never see our kids in this dance of victory and yes even a stray jealousy tear or two for those experiencing what we never will. Tension is still mounting, as this video comes to a close and the next one begins. Except for the music starting a reverent hush falls over the packed to the max BJC. Tears start to fall in earnest as the first picture pops to life on the Celebration Of Life video. The video of all the kids who fought with all they had but in the end it wasn’t enough to conquer this horrible disease. A video of pieces of our hearts. As we gaze across the dance floor and the stands, it’s a sea of, 15,000+ faces and bodies, all holding up the one beside them all with tears streaming sharing in the anguish of what should have been but never would be. As this video comes to a close, the entire stadium joins in singing together…There are angels among us! It’s heartbreakingly beautiful, the dancers, families supporters in the stands swaying together you feel almost as though heaven is surely in your midst. It’s awesome to witness before your very eyes the rejuvenation taking place among the dancers, it’s like silently communicate with each other that we can do this, we can be strong, we can courageously stand for a few more short hours to keep from having anymore families see their kids end up on the last video, because our 46 hours is but a drop in the bucket to the hours of agonizing these kids face. After this video there is a bit of time until 4pm when they are given the count down to sit. It’s another emotional wave as you see these dancers finally sink exhausted to the floor among much screaming and clapping for their bravery and courage and commitment and love for the kids. Then it’s time the credits are given out to different schools, organizations etc. for the amount of money they raised over the year. When that is over then comes the huge moment of suspense, HOW MUCH WAS RAISED???????? YES!!!! Waaaaayyyyy more than last year, a whopping $10,686,924.83 FOR THE KIDS!!! Seeing that number blows my mind!! That these college kids are this dedicated to finding a cure and to being there for these families going through childhood cancer, and the other mind numbing thing is this is not nationwide this is for PENN STATE HERSHEY MEDICAL cancer families only1!
Throughout our journey of childhood in spite of the horror of the disease, in spite of the long grueling days of trips to an from the hospital, the admittances an surgeries, in spite of all this and then having to still say good-bye to the most precious big brown eyed, heart of gold, smile to melt ya into a puddle, full of I love you’s son we called Devin….in spite of all this God gave us some very precious gifts. One being the support and love we feel every time we walk through the BJC doors. Another being the friendship of a few very dear ladies, some who lost as we did, some who are rejoicing in healing. The confidence that doctors and nurses are people with hearts and not just in it for money. And so many more blessings!! And as bittersweet as it is I do find it healing (some would feel it’s in a twisted sort of way, but I’m ok with that J ) to see those kids Devin was in treatment with doing so well, beating this thing and looking so healthy.
I’m sure there are innumerable other groups I’m missing, like those who organize all the registration details, all those businesses that donated food and drinks for the families, food and drinks for the dancers, those that donated all the little stuff from tooth brushes (battery operated ones), purrell, tissues (God knows we needed those) etc. etc. to fill the bags(donated drawstring back pack style) for each of the families, or the dancers or their organization or whoever it is that take the time to decorate the families motel rooms in to welcome them, or the people that cared enough to stand in line for hours to get a floor pass for 1 HOUR to show their support to dancers, family members or friends the list is endless.
Every time I read over what I’ve written so far I come away thinking this is lame it don’t even sound right, no ones still going to get it but it’s the best I can do, to just try and put it into words don’t do it justice but there it is a little window into my world, a world I knew nothing about until that ugly never ending roller coaster landed on my doorstep. We all have things in our lives we probably would never have dreamt of doing or thought about even but because the path we were asked to travel led us there and because of how these circumstances changed us and who we are we find ourselves playing a whole new ball game, one that is part of the new us, part of the new normal were trying to fit into. On a movie recently I heard this line, “it’s the moments in life that impact us, that set the course for who we are”! A side note to family and friends, don’t shut them out cause you don’t get it or roll your eyes in oh brother why would they do this or that? Or oh boy, hang on guys, here she goes again!! But come along side encourage them to do what feels healing, try and understand that this is part of who they are now, try and feel with them, above all else just support!!
I’ve been asked, Janette, what makes you go back there? Why do you go to THON? How can you face the kids still battling after losing yours? Isn’t it hard to see all the families? Doesn’t it bring back so many feelings, and emotions? Yes!! It does bring back a lot of feelings and emotions, some sad, bittersweet, but lots of happy, loving emotions and feelings too. Too me it truly feels like coming home!! We went through fourteen months of cancer with our Devin these people become your family! When I walk into that stadium and see all those families and kids my heart melts cause I’ve been there. Yeah there is a moment or two of cardiac arrest when this one kid pops up randomly outta the crowd now and then that could be Devin’s twin brother. Seriously!! He looked just like him!! I wanted so bad to touch him and squeeze him and chat with his parents but, reall, how do you blow up to a kids family and say oh my word I just had to tell you your son looks like a twin to mine!! And they look at you beaming and say, really?!! We want to meet him……….well umm ugh he’s like not really here, you see he’s umm, well, He’s an angel now! Not really a great conversation piece for someone with hope and prayers their story doesn’t end that way. Back to why I go and what makes it feel like I’m coming home! I look into those parents eyes and see myself, I look into those kids eyes and I see my son, and in my heart I know this is where I belong for however long the season lasts, I know with out a shadow of a doubt we are all in this together, we need to come together, to buckle in along side each other and help each other hang on in this nightmarish roller coaster ride. We’ve all been there in one way or another, no one understands this horror better than those who’ve walked in these shoes. And the other very important reason for going, is the dancers, the whole FOUR DIAMONDS, THON organization. Because of them we had no worries of how we were going to pay for hospital stays and treatments. Because of them, when our son passed away, we were able to hold onto our family and grieve and love and process with out bills coming in and slapping us between the eyes that here we are still paying hugely on something we no longer have. And that is some of the explainable reasons why I THON, I thank God for the gift of these people, this dear huge wonderful family!! There is so much more I wish I could say, but honestly, I have no idea how, it’s a lot for anyone to take in, even those of us who’ve been there every year. This year dear friends of ours, Gary and Paula went as our extended family, they LOVED it, and came away totally awed!! (and we only went one day J ) but was so awesome to me to share a small window of our life with them, it felt good to knowing they were open to trying to feel and understand what makes us who we’ve become and why. Thanks, guys, we’ll never forget it!!
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| this is the little guy that kept popping up...an angel?? hmmm, maybe :) |
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| this is my son Devin...definatley could have passed for brothers |
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| singing Angel's among us |
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| our extended family for the day!! love you guys!! |
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| love this little soldier Seanny!! And he's 5 years cancer free!!! |
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| the "J's" because of the path we've traveled these were our gifts along the way!! Left to right: Janelle, (Seanny's mama) Janette, Jamie (fellow Angel mama of Brandon) and Justin (17 years cancer free) Love these folks!! |
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| some gals ya just know are soul sisters!! |
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| the maxed out BRYCE JORDAN CENTER!! |
