The things on my “gotta do” list always seemed so important, even if I never got to them. I’ve gotta start working out again. I’ve gotta organize the garage. I’ve gotta get my finances in check so I can buy a house. But nothing made my accomplishment wish list seem insignificant like adding this: I’ve gotta scour the planet for someone…anyone…who can cure multi centric osteogenic sarcoma. And I’ve gotta do it now. Like, RIGHT NOW, because the one thing I don’t think I can face adding to this list is “I’ve gotta say goodbye to my precious daughter.” Sobering? You bet. But that is exactly what I am up against after learning my vibrant, energetic, full of life, nine year old, Maddie, was secretly harboring a dangerous fugitive. CANCER. An unusual, evil, sneaky, aggressive, incurable, mysterious, rare BONE CANCER.
Maddie is, by every definition, a superstar. I know all moms say that but in this case, I’m not biased. She lights up a room! Friend to all, cheer captain, animal lover, avid Spiderman fan, adoring little sister, standout student, charitable soul, community volunteer, giggling goofball, loving family member…seems like every part of life she comes in contact with is made better for having had her in it. How then, did I find myself at Nemours Children’s Hospital after a routine appointment for her sore knee, being told my sweet baby has only months to live? How did I end up sitting in a room where phrases like “we want to focus on making her comfortable” were leaving the lips of the most talented doctors on this earth? I was numb. I hoped it was nightmare. She was healthy last week. I thought maybe she had growing pains. Surely this is a mistake!
Before I could dismiss it as a mistake, I was signing treatment consent forms, sleeping on a cot in Maddie’s hospital room, researching statistics, and making decisions I never thought I’d have to make. We. Not me. We. My husband Mike and I….we were a power team when it came to raising kids; when it came to coaching cheer and volunteering with the football league; when it came to doing work for the community; when it came to juggling careers and family and the pressures of life. Put us on the case of just about any challenge and we were all over it. But given the grim diagnosis of terminal cancer for our little girl, we crumbled. Nothing on earth could have prepared us for this. Nothing.
It took a few days, but realizing every moment is precious , we rallied our spirits. There was no time to waste feeling heartsick. Maddie needed us. We had to get busy scouring every corner of the world for hope- hope there is a miracle for her. But how do two regular people scour the world? And where are miracles located? This task felt so big. And we felt so small. How could we do this while also making sure Maddie’s immediate needs were met and while still being terrific parents to Mackenzie, Maddie’s equally amazing 11 year old sister? How would we juggle this with our jobs and the rest of life? Make no mistake; life didn’t stop because we were facing the scariest moment we could have imagined. Life just kept plowing forward. School didn’t stop; bills didn’t stop; obligations didn’t stop. The cancer didn’t stop.
Then it hit me. It’s about good people. And letting go. And finding purpose in things that don’t make sense. While I was in the throes of my own crisis, an army was mobilizing in the background. It was an army I wasn’t prepared to enlist but it didn’t wait for my permission to wage war on our challenges. It’s a good thing, too. I can be stubborn. I didn’t want to be the family who had a GoFundMe account. I didn’t want people going out of their way for us. I didn’t want to ask for prayers or take assistance. I was always more comfortable doing the praying and the giving. But all I have to give right now and every prayer I can say, I owe to Maddie. Before I knew it, an amazing community of family, friends and strangers alike had assembled to help us. They did it without being asked. They did it because they are amazing. They called themselves Team Maddie and their generosity and loving energy has showered us in prayer, relieved some of the burden of our circumstances, and given us the opportunity to reflect on how richly blessed we truly are.
While nothing we’ve lived through has been more devastating than Maddie’s diagnosis, nothing has been as humbling and as awe strikingly impressive as the grace and kindness of a group of people I don’t know how I will ever thank. Yet, at the risk of sounding ungrateful, the one thing I really want is what Team Maddie cannot give me. I want to know Maddie will live. I want assurance that I will see her graduate high school….get married….raise a family….make her mark in this world. Nobody can tell us what lies ahead for Maddie. We simply don’t have answers and the prognosis has not been hopeful. What we do know is this: whatever time she has, unless we find a miracle, is more precious than we care to imagine.
The power of Team Maddie suddenly made sense to me. They came together in our weakest moment to get the ball rolling so we could focus on mustering up the strength to send it sailing into orbit. So, with grateful and humble hearts, Mike and I have asked Maddie for something. It’s the only thing we will ask of her; and its for her to fight. How hard she fights and how long she fights are decisions only she can make. In exchange for her fight, and in honor of Team Maddie, we have made Maddie two promises of our own. The first is that we will love her the rest of our days and the second is that we will fight too. We will fight with ALL WE HAVE. WE WILL FIGHT HARD. So that’s what we are doing- we are leaning on Team Maddie and we are fighting.
Help us- please. Join Team Maddie. Help us find someone who knows something about a cancer so rare, most doctors won’t see a single case in their lifetime. Help us find a way to make Maddie’s fight worth every moment. Help us save this precious child; as well as the next precious child to receive a diagnosis of multi centric osteogenic sarcoma. Maddie would want you to know she’s grateful for every prayer and gift and good wish; but we want you to know we still need you! Please- Help us however you can: spread the word, search for hope, scour the earth, find a cure, say a prayer. Every bit of that helps us…every bit.