The full interview is available here.

Two years ago, Meredith Kelly and Steve Stuck took to their respective starting lines for their first running of the Under Armour Baltimore Running Festival. [...]]]> The following article is taken directly from the 2011 Baltimore Running Festival program. Read the original article (PDF).

Charity Partner: Cool Kids Campaign

Two years ago, Meredith Kelly and Steve Stuck took to their respective starting lines for their first running of the Under Armour Baltimore Running Festival. Kelly, a mother from Alabama, and Stuck, a father of four from Baltimore, didn’t know each other but were united to raise money for a common cause – The Cool Kids Campaign, one of the several charities associated with Baltimore’s premier fall event.

The Cool Kids Campaign was founded by Rob Belanger, Chris Federico and Sharon Perfetti in 2006 to provide kids with cancer a higher quality of life for themselves and their families while facing the challenges of cancer. The organization also has a more recognizable co-founder, the 2006 World and 2007 National Figure Skating Champion Kimmie Meissner. The Maryland native was drawn to the organization after losing her friend Kati when they were both just 15 years old.

Meissner said, “We had always talked about what we wanted to do when we grew up and mine was always to go to the Olympics and hers was to run in a marathon for Team in Training. She passed away a few months before I made the Olympic team in 2006. It had a very profound effect on me so when I started to have success in skating I knew that I wanted to somehow use it to help cancer patients.”Early on, the program involved the creation of packages sent directly to the kids which included books, games and anything else that would take their mind off the long road of treatment ahead of them. After compiling and sending 10 packages to West Virginia and Maryland the first year, Cool Kids has mailed more than 13,000 packages to all 50 states.

In addition to the packages, Perfetti and her team write, edit and publish a quarterly newsletter entitled Cool Kids Connection that is sent to more than 200 hospitals nationwide. The Connection’s goal is to give thousands of pediatric oncology patients a newspaper that they can relate to, that is filled with stories and pictures of kids just like them. Cancer patients are encouraged to send in anything they want to see in future editions so that others affected by the disease can share in their joy.

Based on the success of the packages and the newsletter, the Cool Kids Campaign has opened the Cool Kids Learning Center in Baltimore. This state of the art facility will help address the social and academic implications of childhood cancer. One of the drawbacks of the treatments is that all of the kids miss significant time away from the classroom and as a result fall behind in school. The missed class time also means that kids are unable to continue to foster the relationships with their classmates

This is what makes the Learning Center unique. Instead of being seen as outsiders due to their conditions from treatment, students at the facility will be attending the Learning Center with kids dealing with the same journey as them. Each student will receive personalized tutoring, music and art classes and movie nights of first run movies. In addition, there will be support groups for parents and siblings, date night for parents and Mommy and Me classes for preschool age children with cancer. The best part about the whole program is that it’s FREE.

“The Learning Center will assist kids with their social and emotional needs and provide them with opportunities that they wouldn’t have in a regular classroom setting,” stated Meredith Kelly.The Learning Center will serve the outpatient population from Hopkins, Maryland Medical Center and Sinai which means more than 500 children will be eligible for the Learning Center in its first year.

One of the first attendees at the Learning Center will be Meredith Kelly’s daughter, Allison. When Meredith ran the Half-Marathon in 2009, Allison hadn’t been diagnosed with Leukemia, but Meredith had grown up in a family struck by cancer and was excited to run for the cause. The thrill of running through her former and future hometown was an added bonus. Last year, Meredith raised money for Cool Kids by running the half-marathon again, but this year the event has “a whole new meaning” to her.

Earlier this year, Allison was diagnosed with ALL a form of Leukemia. With Allison’s treatments taking up a majority of her time, Meredith had to scale back her training, but it wasn’t enough to keep from participating in the event again, but this time in a new event – the four-person team relay. She likens the relay to her new journey, “Both events require friends and families to help you get through it together.” Meredith’s relay team is just one component of Allison’s All-Stars, which is a group of 20 people raising money to help and support Cool Kids. Allison herself wants to run but that all depends on how her remaining treatments go. Either way, she’ll be there at the finish line waiting for her All-Stars and hopefully several of her classmates.

When Allison attends the Learning Center and participates in Arts and Crafts, she’ll be sitting in the room named for Steve Stuck’s daughter – MacKenzie. MacKenzie was diagnosed with four brain tumors just months after the Cool Kids Campaign started and had been one of their most ardent supporters. “MacKenzie was part of a lot of groups,”stated Steve, “but Cool Kids was her favorite.”

While Steve participated in his first Baltimore Running Festival, MacKenzie and her sister were by his side as they took on the Kids Fun Run, a short run that takes kids ages 1-13 behind the rightfield wall of Camden Yards, down the Walk of Heroes and through the finish line like all the other runners at the BRF. Last year, Steve, who had knee surgery back in college, battled through the 5k as MacKenzie rested at home. Less than a week later, MacKenzie would pass away from the tumors.

This year, Steve will again take on the 5k while other members of Team MacKenzie will participate in other events including one of his daughters running the team relay and another in the Kids’ Fun Run. Each runs with a heavy heart as the BRF is just days before MacKenzie’s anniversary.

It’s never easy to lose a child, but the Stucks are happy that MacKenzie’s spirit will live on through the Learning Center. “She loved arts and crafts,” added Steve “and the new Learning Center is phenomenal. It will allow kids to know there are others out there just like them. I can’t say enough about the organization and will do whatever they need me to help.”

As has been the case each of the last two years, Steve and Meredith will toe the starting line at the Baltimore Running Festival to begin their respective journeys through the streets Charm City. Though they still have yet to meet, their mindset remains the same – to promote the organization that helps kids with cancer feel like the coolest ones in the world.

Find out more about the programs offered by the Cool Kids Campaign programs or about the Learning Center specifically.

Two years ago we launched a new slogan for our Cool Kids Campaign-–Cancer Fears ME! The slogan was created after seeing the “Cancer Sucks” buttons on young cancer patients shirts. While that phrase is certainly true it just didn’t seem appropriate for [...]]]>

A Letter from Sharon Perfetti, Cool Kids Campaign’s Executive Director

Two years ago we launched a new slogan for our Cool Kids Campaign-–Cancer Fears ME! The slogan was created after seeing the “Cancer Sucks” buttons on young cancer patients shirts. While that phrase is certainly true it just didn’t seem appropriate for the audience that was wearing them.

“Cancer Fears ME!” came to us after years of observing that fear was the overriding emotion that many families and patients deal with while battling cancer. Fear of the unknown randomness surrounding the very scary diagnosis of cancer. We wanted to turn around that fear and give the patient something that empowers them. And what better and simple way than to say, “Cancer Fears ME!”

Shortly after developing and trademarking the slogan, we had the opportunity to partner with pharmaceutical giant, McKesson. They paid for and distributed over 15,000 “Cancer Fears ME!” chemo caps to pediatric oncology patients across the country. Soon we were flooded with emotional photos of children proudly wearing our caps and living our slogan. It was more than we could have hoped for.

One photo in particular struck me as it crossed my desk. Little Samuel S. who was being treated for cancer of the eye at the Children’s Hospital of Philadelphia. Something about his expression of determination at such a young age wrapped up what the “Cancer Fears ME!” slogan was all about. I hung that photo above my desk, and it has remained there for the past two years. When the opportunity was presented to us to have a billboard on 1st Mariner Arena we knew we wanted it to be perfect. But what photo to use? As usual, the answer is usually right in front of your face. Samuel became our first and only choice. And the determination that is etched on his face in the photo paid off. He is now a happy and prospering three year old. Thank you for taking the time to learn more about the Cool Kids Campaign! Samuel’s story, as told by his mom, Sabrina, is below.

Sincerely,
Sharon Perfetti
Executive Director
Cool Kids Campaign

Samuel’s Story

My name is Sabrina, and I am Samuel’s mom. I was thrilled when Sharon contacted me asking if Samuel’s picture could be used on the billboard. However, nothing felt more true for my family and me than what Sharon’s words above explain: the feelings of fear and helplessness that the cancer diagnosis brought were more intense and overwhelming than anything else I’ve ever experianced. Here is Samuel’s story:

On August 23, 2007, I gave birth to a sweet little boy with 10 tiny fingers and 10 tiny toes. Samuel was nothing shy of perfect in my eyes. Only two hours after delivery I noticed something was wrong – my baby was breathing rapidly as though he couldn’t catch his breath.

My best friend and I tried to convince the nurses that something was wrong – no one listened. Our concerns were brushed aside until Samuel turned purple. He was rushed to the Neonatal Intensive Care Unit where he remained for a week on oxygen and treated for TTN, pneumonia, jaundice, and fluid in his premature lungs.

Seven days later, my husband and I brought home our baby boy. But our happiness was short-lived. A week later we noticed his eyes abnormally drifting to the sides of his head. At the baby’s six-week checkup, his doctor said it was normal. Yet this condition gradually worsened.

My neighbors and friends demanded that I seek a second opinion so Samuel visited several doctors – each saw nothing wrong. By October, Samuel’s eye began to glow – it looked like a cat’s eye.

My husband serves in the United States Air Force and was transferred a month later to Anchorage, Alaska. We were thrilled to start a new life with our children and give them the opportunity to see another part of the world. We also had hope of finding a good doctor on the base to help our son.

That Christmas, as we took a family portrait, we could not find a photo out of 30 shots without a red eye and a white eye on Samuel – it was horrific. He was four months old and had yet to look at me for more than a few seconds. As I nursed and bonded with my baby, I prayed to God to let Samuel look into my eyes. But he could not see his mother.

On New Year’s Eve, during a party in our home, Samuel spiked a low-grade fever. In the ER, doctors discovered he had pneumonia. Four days later at a follow-up appointment with his pediatrician, I took the opportunity to voice my concern about Samuel’s eyes. That doctor agreed that something didn’t add up. When light hit the baby’s left eye, it glowed white. She referred Samuel to an eye doctor on base.

As I picked up my contact lenses the next day, I explained my concern about the baby’s eye and asked if my eye doctor could look at it. He recommended we see a specialist as soon as possible. Deeply frightened, I thought that Samuel could be possibly blind, yet what I was about to hear was something that never crossed my mind.

A specialist named Dr. Shang did an ultrasound on the baby’s eyes. In the left one, he showed me what looked like a ball inside. He sent me to the waiting room while he made a few phone calls. An hour later, he emerged to say that Samuel might have cancer. In disbelief, I began to black out and my body went numb. Did I hear correctly? Words cannot describe my emotions when I heard that my child had cancer. Was there a chance he might die?

I remember making three phone calls: first to my husband – I needed him there – and secondly to my mother at work. We sobbed together. Then I called a close friend and poured out my heart. We cried until my phone lost its signal. Here was this precious baby boy asleep in my arms, hurting and very sick. I wished I could have taken his place. I wanted to take away his pain.

Sam and his Dad watch TV at the hospital

The doctor came back in as my husband arrived with our oldest son Dean. It was almost 100% certain that Samuel had Retinoblastoma. Dr. Shang scheduled him for an appointment in Philadelphia at Will’s Eye Hospital. The worst was yet to come.

Samuel went through many tests – devastating to watch as a parent – although they had to be performed. He had a class D tumor in his eye (class E is the worse case, usually requiring removal of the eye); his right eye had a class A tumor. Chemo began the next day – by far the worst thing I could have imagined putting my child through. Samuel endured six months of it and had a rocky time recovering. He stayed in the hospital more than at home.

My husband returned to Alaska, while my children and I remained in Virginia to be closer to the Children’s Hospital of Philadelphia (CHOP). Somehow Samuel got through it. Samuel is now 3-years-old and in complete remission. He was able to keep both eyes and has 100% vision in his right one. Out of his left, he can see peripherally. He enjoys reading, coloring and playing outdoors and will soon begin Pre-K.

A Few Pictures of Samuel Post Treatment

Samuel proudly displays his certificate following his race

Samuel and His Older Brother

On the swings – smile on his face as always

Playing in the yard

Retinoblastoma is a rare cancer often undiagnosed. Statistics say that out of a million children worldwide, only one will be diagnosed. Oddly though, here on Dover Air Force Base, I have met two other children living with the same cancer.

Thank you for listening to Samuel’s story. Let’s all continue to raise cancer awareness, especially for children, and especially through such wonderful programs like the Cool Kids Campaign.

Sincerely,

Sabrina S.

To order your own “Cancer Fears ME!” gear, check out the Cancer Fears ME! Store. Click here to learn more about the programs offered by the Cool Kids Campaign.

To financially support the Cool Kids Campaign:
Donate Now

In 2006, after selling my business, I wanted to get involved with a foundation whose primary mission was to help children and families of children battling cancer. A friend suggested a wonderful organization called The Cool Kids Campaign. I soon became a board member and was asked to visit a little, 9-year old girl, [...]]]>

In 2006, after selling my business, I wanted to get involved with a foundation whose primary mission was to help children and families of children battling cancer. A friend suggested a wonderful organization called The Cool Kids Campaign. I soon became a board member and was asked to visit a little, 9-year old girl, MacKenzie Stuck, who was undergoing chemotherapy treatment for a malignant brain tumor. I met MacKenzie and her mom—who later asked me to call her daughter “Kenzie”—at the Johns Hopkins Kimmel Cancer Center. Kenzie was dressed in pink jeans and a pink shirt, both covered in colorful sequins and studs. The surgical mask she had to wear was also decorated in pink/green/yellow sequins. Her mom told me that Kenzie was overcompensating, because a doctor mistook her for a little boy the prior day.

I asked Kenzie what she thought was the hardest part of the cancer fight. She surprised me with her response. It wasn’t the chemotherapy treatments or hospital stays, but having to wear the pale, bluish-green surgical masks which label you as “sick.” Although she was having difficulties breathing through all the sequins covering her mask, an idea came to me! I had been in the teen fashion business for 32 years and knew the importance style had on kids’ attitude. I wanted to see if I could make Kenzie look cool and not sickly. I began with an awesome bandana for her head to cover her thinning hair, and superimposed an image of Angelina Jolie’s face on a surgical mask for Kenzie to wear. Wow! She looked like a movie star! The next challenge was to find a sterile, breathable, peel & stick cover that could be used to create all types of fun and colorful mask covers… and Kenzie-Covers® were created.

- Rick

Rick Levin

Cool Kids Campaign Board Member

Founder of Kenzie Covers