It was Maddie’s idea to pose for a selfie while we waited to board our plane. Barely able to stifle her giggling, she chose a filter that added puppy tongues and ears to our faces. She was particularly amused that they complimented her new hair. Not long ago, her precious head was completely bare but today it is covered in a tender layer of platinum peach fuzz. I paused and took a good long look at her. Leg in a brace, propped up in a wheelchair, head exposed for the world to see, a port protruding from her chest…so many reasons to feel discouraged; yet there she was, flashing that grin. I couldn’t help but feel like a million bucks sitting next to her. Her tenacity inspires me and her ability to turn every challenge into an adventure reminds me that there must be a higher purpose for all she’s enduring.
Since Maddie’s diagnosis, I’ve made a conscious effort to try to live in the moment. Cancer has a way of reminding you that’s all you have anyway. But sometimes, despite my best efforts, my mind replays bits and pieces of the past, leaving me with questions that can never be answered. Looking at the pic we just snapped, I was reminded of a time when Maddie’s thick, wavy locks fell down to the middle of her back. Oh, how we would battle about combing the tangles. I never dreamt they’d be gone one day; taken by a greedy monster trying to steal more than just her tresses. I thought about how I’d give anything to go back in time. Would I have paid closer attention? Noticed something? Figured out she was sick?
When they called for passengers needing assistance, I didn’t move. It wasn’t until I felt a nudge and heard Maddie say, “Mamma- that’s us!” that I was brought back to our reality. We’d need help getting settled. This was our first foray into flying with a wheelchair. This trip would be full of firsts, in fact. It was Maddie’s first venture away from the hospital since June; a hard won weekend break from treatment, physical therapy, and the trappings of what will continue to be a lengthy battle for her life. She has big plans to make this weekend count. She can’t wait to see her Dad and her sister, Mackenzie. She’s looking forward to laughing with her cousins; watching her cheer squad; hugging her beloved puppies; sleeping in her own bed.
As I buckled for takeoff, I noticed Maddie was already drifting off to sleep. Getting up early and hustling to the airport had completely exhausted her and I hoped this trip wouldn’t be too much. It’s hard not to worry- while there’s no doubt she’s a trooper, she’s been through so much already. Before long, our plane taxied the runway and there was no turning back. Maddie napped peacefully with her head leaning on a pillow and as I admired her delicate silhouette, I revisited the whirlwind of events that led us to this moment.
It was such a blur. In late April, a dull ache in her knee led to an X-ray and by the beginning of May, she was hospitalized. We soon learned the name for her ache- Multi Centric Osteogenic Sarcoma- no ordinary ache at all. An invasive, terminal cancer so rare, most doctors won’t see a single case in their lifetime. The swift progression of her disease was awe striking. We had no idea how long this devil had been silently ravaging our beautiful child’s skeleton, but we did know it had an extensive foothold.
By mid-May, aggressive chemo therapy had begun and our old routine of cheer practice, homework, and laughing around the dinner table had given way to rotations on hospital cots and watching our sweet child become almost unrecognizable. Both the cancer and the treatment took an intense toll on Maddie’s small body. No longer able to walk, she lived in constant pain. She was frail from losing so much weight and her blood counts could not be sustained without transfusions. I remembered the anguish of watching her deteriorate.
When the flight attendant leaned over to ask what I’d like to drink, I realized we were already so high in the air that I couldn’t make out anything on the ground except a few squares of farm land that peeked out from the clouds beneath us. The sun was so bright; I could feel its warmth through the plane window. One of my favorite parts of flying is how beautiful the sky is, and today it seemed especially gorgeous. As I marveled at the shining blue span of endless possibilities, I savored the feeling of hope that replaced the despair of Maddie’s initial prognosis.
In late June, we were crushed by Maddie’s gut-wrenching discharge from the children’s hospital in Florida. The cancer was unrelenting, so treatment was being discontinued and hospice was recommended. We were encouraged to shift our focus to making her comfortable while she slipped from this existence. I was incredulous at the notion we could be expected to make peace with letting her die. Not an option.
With no time to spare, we were faced with tough choices. Our amazing community rallied together to raise the funds needed to move Maddie to Cleveland, where a bold and courageous oncologist dared us to dream about her future.
Under Dr. Anderson’s care, Maddie endured a harsh, lengthy round of a new chemo, with side effects as intense as the cancer itself. If the progression of her cancer could be arrested, she could receive a second phase of treatment- this one experimental in nature. 223Radium, an injection that delivers radiation internally, isn’t all that mysterious, in and of itself. It’s been used to fight prostate cancer for years, but it’s never been prescribed to treat bone cancer and this became a great source of contention for our insurance company.
It seemed Maddie would not be the only one fighting. Although Dr. Anderson believed his treatment would help her, we soon learned we’d have to bulldoze past a steady wall of arbitrary coverage denials to give our child a viable treatment. Unfortunately, treating cancer has exorbitant financial consequences and many of them would be paid out of pocket. Undeterred, and believing Maddie was worth every cent, we carried out an arduous campaign. At the eleventh hour, Dr. Anderson secured approval for two of the six treatments he prescribed, and the insurance company agreed to revisit the issue if they proved effective.
The weeks that followed were quiet. The Radium has fewer side effects than chemo and Maddie began to stabilize. Determined to come home, she asked for more school work and conquered an exhausting physical therapy schedule. Everyone remarked that the twinkle in her eyes was back. Her appetite returned and her blood counts increased. I will never forget how proud I felt watching her take her second set of first steps. Her real first steps were those of a clumsy one year old discovering her world, but these first steps represented a bolder, bigger accomplishment. These were the steps of a warrior who was reclaiming her freedom; taking back her destiny.
The days leading up to this trip were stressful. Only a few days earlier, Maddie underwent an emergency procedure to drain fluid from her lung and she received a small dose of chemo to ward off her cancer’s attempt to invade her soft tissue. We weren’t sure she’d be strong enough to visit home. We were also anxiously awaiting the results of Maddie’s PET scan; our first indication of whether or not the Radium was working.
What a relief to get approval to travel and amazing news about Maddie’s progress on the same day. Dr. Anderson shared that the Radium is working! Maddie’s tumors are shrinking! In fact, her response was so favorable that he was already petitioning for the coverage of more treatment. In a follow up email to me, he wrote, “It is Childhood Cancer Awareness Month and Madison truly shows need for better treatment as much as any child we know of…It has been so gratifying to see Madison begin to thrive, not just survive.” Though Maddie has no idea; she is a trail blazer. If she can be cured, it could pave the way for other children to receive innovative therapies. She is making history as we speak.
With the announcement to return seats and tray tables to upright positions, I knew we were almost ready to land. I paused to say a quick prayer of gratitude. I have placed my faith in the partnership between God and Maddie’s care providers and I believe together, they will help Maddie get this done. They have already accomplished so much. As I organized my carry on items and prepared for our decent, Maddie began to stir. “Are we there yet, mama?” she asked. “Almost, baby…almost.” Truer words were never spoken.