Maddie's Fight: The Cost Of A Life

The price tag -- eternal nemesis of working folk.  I can't recall the last time I bought so much as a loaf of bread without first weighing sale prices in the grocery store flyer against the preferences of my kids and the overall cost of my shopping trip.  Much to the chagrin of my family, I’ve been unapologetic while serving chicken six nights in a row because breasts were on sale and I have, on occasion, stooped to the level of using one-ply toilet paper in my bathroom.  Don't worry -- the guest bathroom always has the good stuff.  My point is that we consider the cost of everything.  Except life.  Until today, I never thought one could quantify such a thing. 

This weekend we will board a private jet with an entourage. Don't envy me.  I'm no celebrity and this is no vacation.  That entourage is comprised of an EMT and a nurse, and that jet is especially designed to carry one forsaken patient on a lone stretcher along with two family members to a hospital offering experimental treatment. 

This flight is for the hopeless... the lost causes... the long-shots.  And we get to be on it... after we pay for it, that is.  And pay dearly we will. Business first, life second.  Please swipe your card here -- and $14,900 later -- we have a reservation! This sure gives “business class” a new meaning. 

Our treatment team may have given up hope, but how could we let money or conventional wisdom stand between our sweet daughter and the chance for her to live another season with us?  So we went for it.  We will move Maddie's care to the Cleveland Clinic Sunday, but making this decision wasn’t easy.

I can't imagine what we will face once we land.  We are going off the medical grid, if you will.  This is uncharted territory.  Maddie's cancer is virulent and unrelenting and it is barely understood by even the most seasoned experts in the field of cancer treatment. 

She is dying -- words I hate, but words that are true none the less. 

I am so angry to have to type them. I feel anguish I cannot describe that my child has been given this awful death sentence. And still, I have hope. Maybe, just maybe, there is someone somewhere who sees something the rest of her treatment team has missed. 

I am even more hopeful that this someone is Dr. Anderson from the Cleveland Clinic; he is the single medical expert who dared to speak of Maddie's future when he consulted with us.  The only one who has scrutinized the opinions of every doctor, questioned the findings from every scan, and challenged us to ask "why not" instead of "why" as we poured over lab results and treatment options.  He believes he can help Maddie with a promising immuno-therapy protocol, but as with the bread and the toilet paper, there is a cost. In this case, it is exorbitant.

When my family created a Go Fund Me account on Maddie's behalf, I was angry with them. I have always given, never taken. I volunteer in the community and I work hard. I have never asked for anything. To be completely honest, I was afraid of how it would look to receive anything from anyone, but I hadn't yet absorbed the enormity of what we were facing. 

Denial is a powerful drug. I genuinely believed we could manage this without help. I was wrong. Nothing has humbled me more than needing help... other than accepting it.

As it turns out, that $15,000 flight to Cleveland was just the tip of the iceberg. When Dr. Anderson gently asked if we have financial support, we had no idea we would learn that a single round of therapy may cost as much as $25,000 out of pocket. He softened the blow by volunteering his part in Maddie’s treatment for no charge, but there are things he cannot do for free. Housing while we are in Cleveland, medical services, hospital access, drugs, scans -- they all have costs associated with them. 

We have another beautiful daughter who needs to be cared for while we are gone. Our pups need to be fed. The utility companies don't care that we are trying to save our precious child's life. They want payment for services rendered. And so it goes... the heartless world keeps turning even though our lives are standing still.

As I sat on the phone with the team from the Cleveland Clinic, I felt reality closing in on me. They wanted to know if we were coming. Were we? Could we afford to? Could we afford not to? How does one determine how much a life is worth? How far do we take this? How much is too much? Where do we stop?

For a moment, I was brought back to the surreal experience of our care team meeting the day before in Orlando.  We were gathered in a room with the most loving group of care providers we had ever come to know.  They were kind, but direct.  They assembled us to break the news that they were stopping Maddie’s treatments.  The cancer is not responding and they don’t have any other treatment they can recommend or administer. 

I remember so little from the conversation -- just bits and pieces. As I gazed around the room, unable to clearly focus, words floated in the air like balloons waiting to pop. 

Hopeless- POP!  Chemo's not working- POP! Make her comfortable- POP! Hospice- POP! Quality of life- POP! We're discharging you- POP!  We're sorry- POP! 

No, no, no, no!  Take those words back! Please! Look at the scans again -- you missed something!  You had to have missed something!  But before we knew it, we zooming down the highway, headed home with our sick child and no plan.  No next steps.  Just despair and the most helpless, empty feeling I have ever had. 

I heard a voice on the other end of the phone asking if I was still there, and I was brought back to the moment.  I could see Maddie from where I was sitting.  She was finally resting comfortably while Anika, our normally rambunctious shepherd pup, calmly kept watch over her from the foot of the bed.  

It had been a tough day; she had been in so much pain. One of the tumors on her spine is pressing against her nerves. I was struck by how much she changed in just a matter of weeks. She looked so small to me all the sudden... and so helpless.

This is the same child who was splashing in the pool with her cousins and eating extra helpings of dessert at a family cookout in April. The same child who effortlessly climbed to the top of a human pyramid during cheer season, and who exuberantly raised her arms up to the heavens, proudly smiling at the crowd after doing so. The same child who giggled tirelessly at bedtime; who never walked anywhere, but ran instead; who loved having her nails painted; who studied hard; who sang her lungs out in church. This child was full of life. 

I realized there was no cost too great to try to help her live like that again. There was no effort too large. I don’t know where we stop -- I just know it isn’t here.  Without hesitation, I answered, “She’s priceless. We’re coming.” And with that, I finalized our plans to go to Cleveland. 

I am as terrified as I have ever been, but I am also hopeful.  And, most of all I am grateful. While we have been in and out of the hospital, our army has been out there fighting for us.  Our community has come out in droves, hosting benefits, raffles and fundraisers in Maddie’s honor.  We are flooded with pictures from across the country -- people donning purple wrist bands and Maddie’s Fight tee shirts; sending healing wishes and prayers.  Friends near and far, old and new, have given time, money, services, gifts, and love to this amazing child who is fighting for her life as we speak. 

Thanks to the kindness of others, this fight isn’t over -- not by any stretch. We are gathering our strength and we are laying all we have been so generously given on the line.  We want Maddie to have every chance possible to conquer this so she can live the rest of the amazing life that is waiting for her. I have never felt more love…more gratitude…more hope…or more fear.  Thank you to everyone who has gotten us here and who will help get us there. We promise we will be brave and we will fight with all we have. 

If you are interested in learning how you can support Maddie's Fight, please click the link below.