Profiles in Resilience

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The Powell Family

By Kimberly Powell, One Summit Parent

By Kimberly Powell, One Summit Parent

Foreword by Maxwell Svec, Manager, Strategic Programs & Events at One Summit

Foreword

On the last day of September, about 24 hours before our Climb for Courage (CFC) began in New York City, a new family referral hit my inbox from Candlelighters NYC. We learned that the Powell family was en route to New York from their home in Arizona. Piper Powell, diagnosed with neuroblastoma, was headed to Sloan Kettering for a few weeks of treatment. Traveling with Piper was her twin sister Peyton, her older sister Maddie, and her parents, Kimberly and Garrett.

What stood out right away was the speed at which Kimberly registered the girls for the climb. I was impressed that this family of five was willing to get off a plane and head straight to an event they had just learned about, despite a time zone change, travel fatigue, and the fact that they were heading into a few weeks of chemo. But we are thankful they eagerly signed up and joined us despite everything that could have easily deterred them.

The following Profile in Resilience is in Powell matriarch Kimberly’s own words, only lightly edited for clarity and length. I know she will best tell the story of their journey. The Powell’s are an extraordinary family that we are lucky to have in the One Summit community. But don’t take my word for it. Keep reading to see for yourself.


Piper’s diagnosis was like watching a nightmare unfold in front of you and not being able to wake up. In February 2021, Piper had been sick for a few days, and after multiple urgent care and ER visits, everyone told me I was overreacting—that it was just a stomach bug. But I knew something was wrong. I carried Piper into her pediatrician’s office and “assertively” explained that I was not accepting “stomach bug” as an answer and wasn’t leaving until we knew what was wrong. Our pediatrician is an angel; he sent us right away for an x-ray. As we waited for the results at home, I remember washing dishes, looking into the front room, watching my girls play a card game together, and wanting to hold onto that moment forever. Something in me told me life would never be the same.

Sure enough, we got a call to immediately pack an overnight bag and drive to the children’s hospital. Shortly after midnight, following hours of tests and questions, the emergency room doctor asked us into the next room to talk. With every word he spoke, the already small room became smaller until it seemed to collapse on us. Our precious six-year-old, with an entire life ahead of her, had cancer.

I went to the bathroom and silently screamed until my breathless words became mourning sobs. The questions racing through my mind felt surreal. How much time did we have? What did this mean? How do you tell a 6-year-old this devastating news? My husband’s eyes were red and wet, and I couldn’t remember ever seeing him cry like that before. We couldn’t even comfort each other before the nurse came in and said visiting hours were over and only one of us could stay. It was heart-wrenching—the worst night of my entire life. I wished all the tears I had ever wasted, and prayers I had ever prayed could be taken back. There was nothing, and could never be anything, more important than saving my baby.

Telling Piper, it turned out, was harder on us than it was on her. At six years old, she didn’t quite understand the weight of what was happening. She was content, charming her doctors and nurses and spending time with mom and dad by herself. The novelty of being showered with new toys from the toy closet that she didn’t have to share with her twin eased most of her worries. And, besides the surgery to remove her tumor, she was feeling healthier than she had in months. But after Piper’s diagnosis, there was a definitely a shift in the dynamics within our family.

My husband Garrett and I were young parents when we had our oldest, Maddie. From the time she could talk, Maddie begged for siblings. We knew we wanted more children but wanted to wait until we were done with our degrees with established careers before trying for baby number two. When that time came, and after years of trying to grow our family, we faced the reality of infertility. Although we were heartbroken and felt something was missing, we kept moving forward. Shortly after, we discovered we were pregnant at long last, and all three of us were thrilled!

I kept having dreams that I was carrying twins, and the dreams felt so real that I was certain it was true. Our first appointment confirmed one strong heartbeat, and while we were excited, I couldn’t shake the feeling that I was missing a baby. I recall that I was brought to tears one afternoon a few days later, mourning the unexplainable loss I felt. But when we went in for our 20-week appointment and gender scan, our ultrasound tech gasped when she saw two perfect babies—Peyton and Piper. It was the shock of our lives—twins! Garrett nearly fainted, and I laughed uncontrollably until I cried. Our family finally felt complete when the girls were born, as if Piper and Peyton were the exact puzzle pieces we needed.

The twins were daredevils from the moment they could walk. I found each of them scaling the refrigerator or stair railing on many occasions. We had a small plastic slide in our playroom, and rather than slide down it, they would often pile pillows on the floor and take turns jumping off. I was exasperated trying to keep them out of danger. As an outlet for the girls, our family got into hiking and spent our weekends seeking out adventures. The higher the peak or bigger the boulder, the more excited the girls were to conquer it.

Although Maddie is nine years older than her sisters, they have been best friends from day one. Even at sixteen, Maddie would rather hang out with her sisters than her friends. Maddie never handled her sisters with kid gloves. She didn’t let them win games or outrun her in a competition just because they were younger. They were competitive in the most loving way, and their relationship pushed all three girls to be strong and resilient. They were all extremely active too. Maddie is a talented volleyball player, and the twins never missed a game; they were known to choreograph cheers from the bleachers. Between weekend adventures, the girls played soccer, did gymnastics, and took swim lessons and ballet. We were very busy, but very happy.

But after Piper’s diagnosis, coordinating practices and games was overwhelming and nearly impossible. Piper was so sick that she barely had the energy to get out of bed, so we even stopped hiking as a family. Garrett and I attempted to continue hiking as our own outlet, but Piper couldn’t stand to be away from me, and truthfully, the feeling was mutual. Slowly, all the extracurricular activities that once filled our schedules fell away.

The inpatient hospital stays were harder than we expected. Maddie went from being best friends with her sisters to being Peyton’s surrogate mom. Maddie was no longer carefree; she had the weight of the world on her shoulders. Piper wanted me all to herself, and I became her security blanket. My once brave and adventurous girl refused to separate from me even for a moment. On the weeks we were home, Piper was so sick that we stayed in bed most days. The drift between Peyton and Piper was heartbreaking. I could tell Piper resented her twin for being able to live a “normal” life, and Peyton resented Piper for “taking her mom away” from her.

The days and weeks in the hospital became a blur of surgeries, tests, and so many what-ifs, but before we knew it, they sent us home. Miraculously, once the tumor was removed, there was no other sign of disease. We felt as if we had somehow snuck past this boogeyman unscathed, and we didn’t dare look back. It took time for Piper to regain her strength, but within a month, our family was back to normal, and it was as if it had all been a bad dream.

Then, shortly before Halloween 2021, we took Piper for her regular scans and, upon our return home, checked the online health portal, hoping for a confirmation of “unremarkable.” What we saw was anything but; the cancer had metastasized, and it was everywhere. The scariest thing I’ve ever had to Google was, “Stage 4, high risk, metastatic neuroblastoma, MYCN amplified.” The outlook felt hopeless.

For the next two weeks, before treatment began again, we filled every second, completely enthralled with Piper. All three girls stayed out of school. We woke up daily at 5 AM to chalk the backyard fence, hang out in the comfy chairs at Starbucks, and visit every little park in the city. We went to Halloween dance parties and amusement parks, bought sparkly dresses, and said “yes” to absolutely everything Piper asked for. We didn’t spend a single moment of downtime. It felt like if we just kept going, we could outrun this monster. We didn’t tell the girls, but they knew something was wrong.

The night before Piper was to be admitted for port placement and chemo, we went for late-night pancakes to break the news that the cancer was back and to tell them what the next 18 months would look like. On the drive to the restaurant, Piper looked at me and asked, “Am I going to die? When I close my eyes, it’s black. I used to be able to see my life, but not anymore.” In that moment, I no longer wanted to run; I wanted time to stop. I wanted to hide her, to keep her safe.

As a family, the only thing we want is for our sweet Piper to beat this monster. Everything we do, every thought, every action is to ensure she is happy, loved, and healthy. I remember when our family was so full of life and adventure and lighthearted joy. A year into this journey, that family is a distant memory, but slowly we are finding our way back there together.

Climb for Courage, New York City 2022

A connection at home in Arizona knew we were headed to New York and bringing all three girls for a little NYC fun before Piper’s treatment. He shared our information with Candlelighters, and just before our flight out that night, they called and told us about One Summit and Climb for Courage. The girls were in the background listening and were immediately begging to go. We took a red-eye flight out, and by the time we landed, Dianne from One Summit had emailed us, letting us know that the girls could participate.

When we arrived, the parents were called downstairs to join the Navy SEALs to greet the kiddos and cheer for them as they entered the rock wall space. When the group descended the stairs, I saw Piper leading the pack with the biggest grin I’ve ever seen on her face. Right behind her were her equally excited sisters. Garrett and I felt a little bit nervous about being separated from Piper. The last time I was apart from her was before her diagnosis. But it seemed like if I was going to trust her with anyone, it would be a room full of Navy SEALs! Honestly, I thought she would back out when the time came for the parents to leave. But the entire experience was so exciting I don’t think the thought ever crossed her mind.

When the climb was over, we returned to the gym to see our girls decked out in climbing gear and scaling walls. I saw Peyton first; she wore a military-style helmet and looked fearless. I couldn’t help but think how brave she had been over the last year. I often refer to Piper as Piper the Brave, but here was her seven-year-old twin who has had her entire life turned upside down and yet continues to face every day with the strength of a warrior.

Then, I heard Piper call out from across the room for me to “watch this!” I looked on as she climbed wall after wall with confidence. When she finally unhooked from the ropes, she ran to hug me, but instead of clinging to me, she quickly let go and joined her twin in powdering her hands and laughing with their Navy SEAL.

Maddie was across the room carrying a camera, snapping pictures of the kids and their SEALs. She loves photography and was genuinely happy when Dianne asked if she wanted to help take some pictures. It was the first time in months she didn’t have to worry about parenting Peyton or wonder if Piper was okay. She didn’t have to do anything other than be a kid.

That afternoon when we got back to our hotel, the girls were laughing and enjoying each other like we hadn’t seen them do in a very long time. The experience with the Navy SEALs seemed to refuel them and spark resilience. Garrett and I watched in awe as if we were seeing a glimpse of the family we used to be slowly returning.

Since the climb, the girls have continued to regain their relationship with each other. We have stayed in touch with our Navy SEAL and even received friendship bracelets made by his daughter. Initially, Climb for Courage seemed like an awesome way to spend an afternoon in New York. But in hindsight, I believe wholeheartedly that this experience with One Summit and the Navy SEALs was the beginning of a return to normalcy for our family. We have participated in many activities offered to families impacted by childhood cancer and have been grateful for the distractions. But the experience One Summit offered was unique in so many ways. It was truly an opportunity for our girls to bond in a safe environment, and it had an amazing, long-term impact on their relationship.

When we came home after Piper’s first round of chemo, Maddie chased her through the house, trying to pin her down for some hugs and kisses. Through her giggles, Piper paused and, in her most matter-of-fact voice, informed her sister, “Don’t mess with me; I’m a cancer survivor!” It took almost a year of treatment for Piper to be NED (“no evidence of disease”). She won’t be considered a “survivor” until she’s been cancer free for ten years. But, to us, Piper has always been a survivor.

This terrible thing has happened to our family, to our sweet girl. We have taken a beating, financially, emotionally, spiritually, and physically. We are forever changed. But we will not allow this disease, this boogeyman who hides in the dark, to hold us down. We are resilient. Our girls are resilient.