Revisiting the Beginning – an Emotional Journey to Four Years ago

I’ve been avoiding doing this. The early days when Serenity was diagnosed were hard – some of the hardest days of my life. Diving into them and the emotions there isn’t something I’m super thrilled to do.

But, it’s important. It’s important because this is all about letting those outside ‘the circle’ know the details, the things you have to do and what you have to go through to make it through having a Cancer Kid.

It’s important because most of the world does not know about the Herculean effort made by non-profit organizations and their vast armies of volunteers to ease the burden that is thrust upon families who have an unwanted disease forced on them.

It’s important because it fully reminds me of what we went through and how incredibly …. RAW it was.

In those first 24 hours, we started out the morning taking Serenity for what we considered an annoying routine doctor visit. By the end of the day, I found myself in the hospital facing and trying to deal with the reality that my baby could be dead in the next 24 hours. Unbeknownst to me at the time, things would get worse moving forward, a lot worse, before they ever started getting better. And that’s why I don’t really want to go back to the beginning.

The purpose of doing this though, is pure. If I had a spare million bucks, I would give all of it to a select list of Cancer Kid/Family Support Organizations without a second thought. As it is, although Serenity has been off treatment for two years, we’re still only ‘close’ to overcoming the huge personal and financial burden/impact on our family as a result of what started that day.

Over the two and a half years that Serenity was on chemo and fighting for her life – the ONLY good memories, the ONLY good times were provided by organizations like Hope Kids. At least twice a month, Hope Kids puts on well organized, usually completely over-the-top and FUN events for the families of kids with life threatening illnesses. There are just a couple other organizations that I hold in the same esteem as Hope Kids, and they will get their post in the future. This story however, is all about Hope Kids Utah and their amazing Coordinator, C.R. Oldham. But, before we get into that, there are some things you need to understand. Things that way too many, yet very few parents and families understand. Dark things, things people should never have to experience, things that run deep, that go to the core of your soul, things that force you to question everything you know about yourself.

Once you’ve experienced the utter horror of holding your baby in your arms when she is nearly grey in color, is completely lethargic, responds to very little stimulus, has more wires and lines coming out of her than a DC motor – once you hold your baby like that and you look into her eyes and you can SEE the fear, the uncertainty, the pleading, the trust, the utter helplessness to defend herself – it CHANGES you. It creates a rift in your heart and soul that forces you to stare face to face with your greatest unspoken fears. The experience transforms you into something, someone …. different.

As a man, it evokes a primal, visceral response. It immediately demands your warrior mode in full battle readiness. You instantly don your armor, grab your spear, sword and dagger and prepare to wade onto the blood soaked battlefield with righteous intent; ready and willing to hack a new river of death, flowing with the failure of your assailants as they fall before you. You see Red. Your suppressed, controlled, oft denied protector of the family mode engages. As adrenaline rushes through your veins, you feel the tingle of power travel from your core out to your fingertips, through every follicle on your scalp, out through your heels – you are READY for battle. Nothing exists in the world any longer, except you stepping up and destroying the monster threatening your family. It is now literally YOU or the killer attacking your baby – and it SHALL NOT be you! As you raise your face to the sky, your wolf howl battle cry on the edge of your lips, your fists clenching for assault, the small muscles cording tightly throughout your body to provide further armor, your mighty roar rises up from the depths of your belly and fills your throat, your eyes glaze over, your vision narrows, focused in a tight tunnel, your ears hear every whisper of electronics surrounding you. You PUNCH to the sky! Your hands fly open as your arms raise over your head in defiance, every muscle in your chest, arms, back and stomach turn to knotted steel as your now lightening reflexes drive your arms down, your chest out, your head forward, your hips bent, ready for any attacker. Your battle cry now fills every fiber of your being and BURSTS forth from your mouth in abject challenge and defiance as you commit yourself fully to mortal combat against the destroyer of your offspring……..

…… and out comes a whimper. Your eyes well up and drain themselves down your cheeks, the adrenaline drains from you and you collapse to your knees, your weapons of war clanging to the ground along with your intent, your heart bursts out of your chest as you realize there is NOTHING you can do. There is no enemy to attack. There is no battle to be waged. You are completely, utterly, wholly – HELPLESS. You concede that you are relegated to standing by and observing as the life slips from your child. You confess your pathetic uselessness as a man; while everything you’ve ever felt and believed is the duty of a father, husband, brother, protector and provider is mercilessly stripped from you by that sneering enemy, scoffing while leaving you a hollow, helpless, hopeless shell of a man. Your catatonic avatar stands there, tears pouring down its face, your wife wondering what transpired in the last few seconds for she can SEE the visible change; the draining of your ego, your power, your strength – she SEES you give in, give up, shrivel, and concede defeat to that heinous, evil, remorseless and invisible killer of children – CANCER.

As you sit there watching, praying, hoping against hope, trying to steel yourself for what’s coming soon; you resolve that your true purpose in God’s plan is to be there to comfort, to love, to smile when there is nothing but the beauty of your broken, beaten, failing child to smile at – you covenant to do whatever is required to save her, to fight the battles for her that you possibly can, to advocate for her, to comfort her, to care for her, to never leave her side no matter what. In short time, you build a new ego for yourself – not of the battle ready veteran, but of the caring, loving, cautious provider. You commit to protecting her against germs – to forcefully expel any who would dare come within 50 feet of her without proper washing and masking, to judiciously sterilize every minuscule thing that comes within her space, to demand everyone within touching distance of her immediately sanitize – not 3 minutes ago, that’s not good enough – do it NOW. You agree to force toxic chemicals down her throat against her will, you commit to denying her the opportunity to be around other people for the foreseeable future, you accept the daunting challenge of being the valiant provider for an immune compromised child. In exchange for her chance at her life, you immediately and willingly give up yours.

You shut down your business. Over time you lose your home, your nice new cars, your luxurious and comfortable items, you commit to sacrifice your entire lifestyle, your family’s comfort, your hopes, your dreams, your aspirations, everything – and you do it – in anticipation of that chance at life.

And THAT, my friends, is precisely what I have avoided re-living in my mind.

During the years of cancer treatment, our lives were literally consumed with the endless demands of caring for a cancer kid. We did not have the time, money, opportunity and honestly – not even the inclination – to do anything other than care for Serenity.

Except that every other week, we were able to pack Serenity and the rest of the family into the newly purchased ramshackle, run-down vehicle that we were ecstatic to acquire after our Eddie Bauer edition SUVs were taken back, and simply drive to a Hope Kids event. The beauty of a Hope Kids event is that it focuses around the physically, and often immunologically, severely compromised children who make up its membership. NOBODY gives weird looks at the tubes your child has, or the bald head, or wheelchair, walker, breathing tubes, disformity, scarring or other obvious handicap. Nobody stares, nobody points, nobody is irritated at slow moving blockades of amazing kids using equipment typically reserved for the elderly. Instead, everyone is able to ask other families “what does your child have?”, “how did your child’s last radiation treatment go?” or “can I help you with your NG tube or wheelchair?”. You can have an immediate heart-felt, heart-breaking conversation with other parents there, who are complete strangers, because you all KNOW. Each of you know what the other is going through, each of you have amazing stories, accomplishments, failures, heartbreaks and experiences in common. Each of you is a shell of what you once were and is a protector and advocate for their child. The children – whether the patient or the siblings – have no social barriers against walking up to a clearly suffering and injured child and hugging them, talking to them, asking what they can do for them – because they KNOW. They know that this child is just like their sibling or themselves. This child is waging a massive, powerful, lethal battle within themselves against invisible monsters hell-bent on killing them. And each of them know that the next time Hope Kids gathers, the next time we all get together, we’ll have the talk. The talk where we inform each other of which angels in the group have earned their wings. Which of the beautiful children we were visiting with last week has lost their battle and is now free, defeated by DNA, germs or microscopic deadly and invisible enemies. It could EASILY be that child sitting in front of you right there. So you visit with them, you comfort them if you can; you take an odyssey for them, you lasso a mountain, tame that rock and loosen its feet from the ground and drag, push, prod and shove it to the feet of that child so they can experience and appreciate the beauty of it just once before they are no longer able to – and you do it right now because they might be the one we’re sharing a moment for at our next gathering.

You, your children, your spouse, all the families at a Hope Kids event are able to let down their guard ever so slightly, if only for a moment, and relax and enjoy LIFE in this mutually cautioned gathering where each person is on alert for all of the Hope Kids.

And that child who for the past 8 days has barely moved about, been exhausted, been puking their guts out, had every sickness that anyone within 500 feet carried, spent the last 40 hours crying in pain from their chemo and steroids attacking their frail little bodies – that child suddenly GLOWS! There is perhaps the slightest hint of a smile, possibly even a full smile. And if we’re fortunate, we might be blessed with a laugh: a laugh that says “SCREW YOU WORLD! You might kill me, but right now, I’m going to enjoy myself!” The laugh of the child who for the last several days has had NO HOPE. Then several of them might contagiously catch it – and you may be gifted with that beautiful chorus of angels laughing, playing, glowing, LIVING. Even if for just that moment. For quickly, the pain sets back in, the nausea returns or, energy spent, fatigue takes over – and the moment is passed. But they HAD that moment. That Gift. That momentary, fleeting, flicker of light. They had it. It is theirs. And they can keep it, always. It is a solitary memory that things aren’t ALWAYS so bad. That their trial of pain, suffering and misery as their life is slowly drained from them against their will has its little reprieves, its little flickers of light, its passing calm – that sometimes; rarely, but every once in a great while – there is a sliver of HOPE.
THAT is the value that Hope Kids provides. THAT is their selfless offering that is conceived, created and given – without any strings, expectations, guilt or otherwise – as a completely PUREgift of LOVE.

A Hope Kids event is filled with Love. It is palpable, it thickens the air, it fills your nostrils and lightens your load. It lets parents unwind – just a titch. It lets siblings interact with children outside their family – but with their family there for a change, it lets patients feel NORMAL. They feel normal because Hope Kids CHANGES Normal. A Hope Kids event is crafted to re-engineer normal into being a Hope Family. At these events, every family has a Hope Kid. The wonderful volunteers who come and lovingly put on the event, they don’t always have a Hope Kid – and that’s pretty weird. It’s weird because in the Hope Kids world – fighting for the life of one of their own is what every family does. If you’re not in a battle for life or recently been in one – it’s kind of difficult to fit in. And that is the magic and beauty of the Hope Kids environment!

Whether it’s pony rides, picnics, motorcycles, movies, parties with the entire Disney lineup, taking over the whole roller-rink, swimming, flying, exploring the zoo, an aquarium or driving race cars; a Hope Kids event is always designed to be fantastic enough to encourage these bruised and worn children to let down their guard, to participate in life, to have FUN!

The only good memories during the battle for my daughters life are memories CREATED by Hope Kids. And that is why I search for ways to help support them.

You CANNOT put on events over and over that are so amazing, unique and intricately done that kids fighting for their lives will relax and participate – without MONEY. It is unfortunate that Hope Kids must acquire donations in order to provide the loving opportunities they do – but they MUST. In their entire organization in Utah, there is only ONE paid employee. Everything else is done by volunteers. Nearly ALL the money raised goes directly to putting on exciting and enticing events for children who, without Hope Kids, would otherwise be sitting at home with their respirators and their chemo drips, bored out of their minds, resigned to and just waiting to die.

There is no organization that I know of who fulfills this need, other than Hope Kids. Their name communicates their mission – to GIVE Hope to Kids who have no reason to hope. To change their lives, to show them that even while you’re dying, it is possible to move past the pain and enjoy life, even if just for a minute. To provide them with a dose of that well known best medicine; Hope.

Hope Kids SHOULD have an unlimited budget. They SHOULD have access to all the money they could possibly need. Their Mission merits it. And, perhaps they WOULD if people slowed down to the pace of a Hope Kid and looked around. If people were to come to one of these events and see the Hope Kids’ “customers” and how their “product” was received; I believe that most everyone would begin emptying their pockets just to be able to be involved with these very special children who are desperately fighting for something most of us have never had to fight for: literally their very lives.

It takes hundreds of thousands of dollars a year to provide the Hope Kids vision. That money is raised through multiple methods and events. But one way is for those of us who have benefited from their services and who’s children are no longer at risk of losing their lives, to give back – to do what we can to raise some portion that can bring that momentary beam of light to a warrior angels eyes.

I’ve done what I can on my own. It isn’t much. It isn’t what I would like it to be. It isn’t enough.

Now I’m asking you. Now I’m turning to my network of friends and acquaintances and sharing the experiences and heartbreak of which I have never previously spoken. I’m sharing these things because I want you to understand that asking for donations is not something I take lightly. I’m not accustomed to asking for anything. But, for this, I will.

I’m asking for your help. I want to see Hope Kids be able to continue doing what they do year in and year out. Unfortunately, there is no end to the demographic they provide for. New “customers” are diagnosed every single day. The need for their services does not wane as these little angels return home, when one moves on, two more step into their place.

Let’s keep Hope Kids providing those little smiles to these precious kids. I’m asking you to consider donating $5.00. But that’s just because I’m asking it openly to everyone. Obviously, $5.00 does not go very far to creating magical experiences for hundreds of kids. So, I’m asking you to dig deep. Consider what a bit of your money COULD do for Kids and Families who have had their entire existence yanked up, shredded and thrown into the inferno. Consider the parents, siblings and patients who simply do not have the time – and maybe not the money, resources, opportunity – but especially they do not have the TIME to create memories like a Hope Kid memory. They are too busy fighting off invisible demons with sanitizer, toxic drugs and pure force of will to rise up anew each morning and return to the endless battle. If you’re currently struggling the way we are, I’m not attempting to disparage that. Five dollars is a wonderfully thoughtful gift when that is all you can muster. There are enough of us who are having challenging times right now, that perhaps if all of us provide $5 to this worthy cause, the sheer multiples of that $5 will become powerful.

Think hard, dig deep, feel great! You can see some of your potential benefactors right here.

To donate through Serenity’s Hope Kids fundraiser page, just click here.

Thank you for your time reading my experiences and for your consideration to this amazing organization! And may God Bless you and your family as He has blessed mine.