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A Heart that Beat for Others

In the world of childhood cancer, heroes come in many forms. Some wear white coats, others don nursing scrubs, and then there are those who wield drumsticks and a heart of gold. Brit Turner, the founding drummer of Blackberry Smoke, was one such hero — a man whose rhythm not only moved feet but also touched countless hearts.

Brit’s journey with CURE began in 2009 when his daughter was diagnosed with stage-4 neuroblastoma. For two grueling years, the Turner family navigated the storm of childhood cancer, finally reaching remission. But for Brit, this wasn’t the end of the story — it was just the beginning.

Where others might have stepped back, grateful for their own child’s recovery, Brit stepped forward. He made a promise: “When my daughter was diagnosed, I felt completely helpless and I made a promise to help people going through the same thing.” It was a promise he kept until his last breath.

Through Blackberry Smoke, Brit orchestrated the raising and donating of over $700,000 to childhood cancer organizations. But numbers, impressive as they are, fail to capture the essence of Brit’s impact. It was in the quiet, often anonymous acts of kindness that Brit’s true character shone brightest.

Picture a single mother struggling to keep a roof over her family’s head while her child battles cancer. Brit, moved to tears by her story, silently paid this stranger’s mortgage for six months. Or the hundreds of nurses at the Aflac Cancer Center receiving light-up shoes — a gesture of appreciation from a man most had never met. These weren’t publicity stunts; they were the actions of a man whose empathy knew no bounds.

Brit had a unique ability to turn conversations away from himself, always more interested in the stories and needs of others. When we shared tales of families in need, Brit’s eyes would immediately well up. His response was always the same: “What can we do to help?”

Even when faced with his own glioblastoma diagnosis in 2022, Brit’s resolve to help children with cancer only strengthened. He approached his own battle with the same courage and grace he had witnessed in so many children, all while continuing his mission to support others.

To us at CURE, Brit wasn’t just a supporter or a donor — he was family. He was the brother who shows up unannounced with exactly what you need, the friend who listens without judgment, and the warrior who fights tirelessly for a cause bigger than himself.

As we move forward, we carry Brit’s spirit with us. The Brit Turner Family Fund at CURE will continue his legacy, helping children and families who need it most. But perhaps the greatest tribute we can pay to Brit is to approach our mission with the same love, empathy, and selflessness that he exemplified every day.

Brit Turner left an indelible mark on the childhood cancer community — not just through his music or his fundraising, but through the countless lives he touched with his kindness and compassion. He showed us that true heroism lies in the quiet, consistent acts of love that change lives one at a time.

*In loving memory of Brit Turner (1967-2024) — a devoted father and husband, a talented musician, a tireless advocate, and a true friend to all who knew him and to countless others he never met but held close to his heart.

Learn more about the Brit Turner Family Fund

LEARN MORE

Courage on Two Wheels

Finnley has been around motorcycles her whole life. Her uncle is a retired professional motocross racer, and her grandparents own a track called Georgia Practice Facility in Cairo, Georgia. Every year, they hold a competition called The Cla$h, which brings in riders from all over the country. When it was time for this year’s race, Finnley had an idea to raise money for children fighting cancer… because she knows how hard that is since she’s battling leukemia herself.

In early 2023, Finnley had ankle pain that went on for months, compounded with compression fractures. After many doctor appointments and tests, her mother, Stacy, knew something wasn’t right.

“We were told it might be growing pains,” recalled Stacy. “But I’m an emergency room nurse. So, as her pain increased, I just knew in my heart that it wasn’t right. I pushed for a blood test, and the doctor confirmed my suspicions immediately.”

Finnley was diagnosed with leukemia in April 2023. At just eight years old, she has proven how resilient she is time and time again. She has smiled and kept in good spirits even at the most difficult stages of treatment. Finnley is very social, so the most challenging thing for her has been missing so much school and being away from her friends.

“She didn’t suffer from too many side effects until she reached the long-term maintenance phase, which is supposed to be easier,” said Stacy. “She had more hospital stays and a lung infection that was difficult to treat. Going on our wish trip changed everything for her.”

When planning for The Cla$h began, the family looked to add a charity element to the weekend. Stacy and Finnley knew who they wanted to raise money for immediately.

“CURE was with us from day one,” shared Stacy. “When we were first diagnosed, we didn’t go home for eight days. We were in survival mode – only eating and leaving the room sporadically. One day, a lady from CURE peeked into the door with a bag of food. She said, ‘I know it’s hard right now, but you need to eat. So I’m going to leave this here for you.’ That was everything to me because I knew right then that I wasn’t alone. And CURE has been there the entire time.”

Finnley set up a table at the event to sell coffee and donuts and share CURE’s mission with all the riders and spectators. She set her own alarm and got up at 5:30 a.m. so she could get the donuts and be at the track when people began to show up. She stayed until 11:00 p.m. both nights and raised $1500 for CURE.

“We were so proud of her,” said Stacy. “She had a purpose, and it meant a lot for her to be able to give back.”

Finnley is doing great these days. She loves school and spending time with friends. Her treatment should end in June, but her mom believes that Finnley’s unselfish heart will always want to help children who have to fight cancer like she has.

A Community of Hope

Your Impact on Families During the Holidays

Last month, as decorations and lights adorned neighborhoods and holiday music filled the air, many families faced the sobering reality of childhood cancer. Between ongoing treatments, unexpected hospital stays, and mounting medical bills, creating holiday magic felt out of reach for many parents already stretched thin. But thanks to the extraordinary generosity of our donors, these families didn’t have to face the season alone. Your outpouring of support changed what could have been an overwhelmingly difficult month into one filled with moments of joy, hope, and community. We want to share with you the profound difference you made in the lives of families during the holiday season.

CURE’s Holiday Party

More than 500 family members were treated to an afternoon of fun at CURE’s Holiday Parties, where they enjoyed lots of special treats, dancing, face painting, crafts, and more. We heard so many parents share how nice it was to step away from treatment for an afternoon and just be a family.

“We had such a wonderful time at the CURE Holiday Party this year. Ever since our son was diagnosed with AML several years ago, our community has been so important to us, and CURE is at the heart of that community. Over the summer, when we were staying far away for months while our son received a bone marrow transplant, we encouraged ourselves by imagining what it would be like at the holidays when we were once again back at home and reunited with our friends and family. CURE made that vision a reality. At the CURE Holiday Party, watching the kids play and reconnecting with other families we’ve grown close to, we were so grateful for all we have to celebrate and this amazing community.”

-The Michael Family

Holiday Angels

Through our Holiday Angel program, donors fulfilled the wish lists of 150 families. These gifts were not only for the children fighting cancer but also for their siblings and parents. As you can see from the comments below, the families that received these gifts were more than grateful, they were deeply impacted by your generosity.

“Thank you for your kindness toward our family this Christmas! We were amazed at all the toys for our kids that you purchased along with the generous gift card. It is so touching to know there are people so kind and so thoughtful, and we have been blessed by that. Thank you for the abundance of gifts and support! We are so grateful!”

-The Croscutt Family

“The gifts we received have changed my whole mood and outlook towards my situation. The art supplies you sent have not gone to waste. They have awakened a creative spark in me like never before! I hope you all had the best holidays ever because you have made this mine. Thank you.”

The Haralson Family

Critical Financial Assistance

Your gifts also allowed us to provide more than $46,000 in financial assistance in December to families experiencing financial hardship as a result of their child’s cancer treatment. This crucial support played a vital role in helping these families maintain housing, utilities, and transportation.

When notified that their December mortgage payment had been paid, one mother said:

“Thank You! Wow! We are so very grateful! This will relieve a lot of pressure on our finances. Thank you all so much for all you do for us and all the families in the fight.”

Your generosity did more than just brighten the holidays – it strengthened an entire community of families facing childhood cancer. From the laughter at our holiday parties to crucial financial support and thoughtfully chosen gifts, each act of giving will help carry these families forward into the new year. Thank you for being part of our CURE community and for showing these brave families that they never have to face this challenge alone.

Jewelry with a Purpose

Stilla Vitae, Jewelry with a purpose.

How D. Geller & Son Turned Inspiration into Purpose

The Geller family has been in the jewelry business for 15 generations. In the late 1800’s, David Geller was a personal jeweler to Czar Nicholas II. After immigrating from Russia, the family swiftly integrated into the Atlanta community through active involvement in local charitable efforts. The support of nonprofit organizations is still an integral part of the business today.

Jonathan Geller is the current President and CEO of D. Geller & Son. After serving as an infantry officer in the U.S. Army, Jonathan returned to the family business in 2022 when his father was ready to retire. He learned about CURE Childhood Cancer soon after returning when the store donated a gift card to the silent auction for CURE’s Believe Ball. When a CURE board member came to the store to pick it up, Jonathan was moved as she shared CURE’s mission. She invited him to an upcoming event called Quiet Heroes. Quiet Heroes honors the mothers of children with cancer, and more than 250 were in the room during the event. The afternoon profoundly impacted Jonathan and his wife.

“We have three healthy children,” he said. “I looked around the room and knew we needed to do more to help those who aren’t as fortunate in that regard. Using the company’s skill at designing and marketing jewelry was the perfect way to support CURE, so I started planning a new line on the way home.”

While he has been around jewelry his whole life, he hasn’t done a significant amount of jewelry design. The drop of blood in CURE’s logo became his inspiration. The blood drop signifies life – every drop makes a difference. As he worked through the theme of the line, he landed on the name Stilla Vitae, which means “Drop of Life” in Latin.

“I was deeply moved by the remarkable courage and resilience of children battling cancer,” Jonathan shared. “The Stilla Vitae line recognizes the strength within us all and serves as a meaningful gift for anyone navigating life’s challenges – a beautiful daily reminder that we possess the inner strength to overcome any obstacle.”

The original Stilla Vitae pieces sold well, and the custom design group added new pieces. The website has a page dedicated to the line, and it is constantly in the marketing plan. Visit dgeller.com/pages/stilla-vitae to browse the very special pieces of jewelry with a purpose.

Ring the Bell, Daniel

A few weeks ago, Daniel Morgan rang the bell to signify the end of his cancer treatment. He doesn’t like to be the center of attention and actually didn’t want to have the bell ringing. But his family knew this was a milestone to be remembered, so they convinced him to do it.

It’s been a long journey for Daniel – two years, four months, and two days to be exact. It started with a swollen lymph node on his neck and a fever. Because it was a weekend, his mother, Felicia, took him to an urgent care clinic, where the nurse thought it was a dental issue. He got steroids that suppressed his symptoms for a few weeks, but they came roaring back when the medicine wore off.

He finally went to the pediatrician, where bloodwork reviewed a high white blood cell count. Further testing on June 1, 2022, revealed that Daniel had leukemia. It was the first day of summer after his sophomore year of what turned out to be a very odd high school experience.

Daniel Morgan at graduation“Daniel’s freshman year and part of his sophomore year were from home because of COVID,” Felicia said. “He could only do partial days during his junior year because of treatment and finally got to go back to school full time for his senior year. He was very ready to get back to his friends and routine.”

“He didn’t really share what he was going through,” Felicia said. “He didn’t want to be treated differently or have people feel sorry for him. When he lost his hair, it was winter, so he was able to wear his beanie to school.”

Treatment was very hard on Daniel. He was often sick and had an allergic reaction to one of the chemotherapies. Because of this reaction, he was forced to have a very painful injection in his leg. He would have to psych himself up in the morning, knowing that he was going to get the shot that hurt badly.

Despite the interruptions and difficulty of treatment, Daniel graduated from John’s Creek High School with honors last spring. He is studying computer science at Kennesaw State University. He loves creating websites and programming.

“Our family feels compelled to give back to others fighting childhood cancer now that we’re done,” said Felicia. “Daniel has done surveys about the stress of treatment and described how he handled it. We’ve been proud of his responses. His thoughtful answers showed a great deal of maturity.”

CURE has been a support for the Morgans since day one. Felicia raves about the binder notebook that is in the Tote Bag we provided at diagnosis.

“I still have my binder and continue to keep records in it,” she said. “The Open Arms meals meant a lot. They allowed us to put all of our focus on getting Daniel well. It’s been a long road, but it is great to see Daniel happy, healthy, and loving life.”

Daniel Morgan standing near the bell

Milestones and Monsters: Navigating Life with Leukemia

When Levi was diagnosed with leukemia in 2022, his mother, Hannah, began to share the roller coaster ride that is a childhood cancer diagnosis. Her writing style is compelling because of its authenticity and truthfulness, and she finds it helpful to release some of the emotions through words.

Levi had a very rough first year of treatment. He was sick most of the time, suffered from neuropathy, and one of his medications gave him seizures. His treatment will last for three and a half years and should be complete in August 2025.

Here is a brief look into his journey through his mother’s heart. Hannah is mindful to celebrate milestones, including his kindergarten graduation:

I’m so proud of him.
All parents are proud of their kids.
But with him, there’s a deep, immeasurable amount of beaming pride.
He’s fought and is still fighting for his life.
He’s closed huge gaps in his “academics.”
He’s covered and conquered pre-k and kindergarten skills in a year.
He’s pushed himself even though not feeling good.
He’s never, ever once quit.
He’s so strong. And he’s one of the best people I know. Being his mama is my greatest pride.

A few weeks later she shared a glimpse into her own feelings that many parents can relate to:

I’m tired. Deep in my bones, deliriously tired from this journey. I’m tired of watching my child suffer with indescribable pain and nothing that helps him. I’m so tired of fighting to get him help. I’m tired of this being our life. I’m so tired of very, very few people understanding. I don’t know how I can do this for another year. But as he continues to fight, we will stand by him each step of the way.

Then she shared a glimpse of what is in Levi’s heart and mind on a visit to celebrate the end of treatment for a friend:

We walked into the hospital and Levi began having what I can only explain as a panic attack. He clung to me and wouldn’t let go. He was terrified to go back to the 5th floor where he was diagnosed. He kept saying, “Mama, don’t you remember how bad it is there? It’s my worst nightmare. Mama I already lived my worst nightmare.”

After leaving the hospital, he asked, “Mama, what if my cancer comes back?”

A day that was so exciting was also so heavy. I don’t have the answers to his question. I can’t tell him the cancer won’t come back. I can’t tell him everyone will be okay. It’s heartbreaking, and it’s not fair.

In dealing with all of the emotions inherent in this world of childhood cancer, Hannah found herself angry, which isn’t typical for her. CURE helped to connect her to a therapist who listened to her concerns and helped her understand that it is okay to feel angry, as long as she doesn’t park herself there.

“CURE’s Counseling Program has been a huge blessing for me,” Hannah said. “Because Levi became stoic and didn’t want to tell us when he was in pain, he began seeing a counselor also and learned that he doesn’t have to wait until the pain is at a high level before telling us.”

Levi is in the homestretch of his treatment now. He’s smiling more and loves to go swimming whenever he can. His strength and perseverance make an impression on anyone lucky enough to meet him or read his mother’s writing.

 

2024 Research Awards

We are excited to share a significant step forward in CURE’s 49-year effort to find cures for childhood cancers as we proudly announce a $5.6 million investment in innovative research studies – the largest amount we’ve ever committed in a single year.

This record-breaking investment represents an important advancement in our ongoing work. It reflects the growing support of our community, the persistent dedication of researchers, and our unwavering commitment to finding better treatments for children with cancer.

These studies are led by top scientists at leading pediatric cancer research institutions nationwide and focus on the most critical needs. Here’s what makes this investment so impactful:

  • Advancing Precision Medicine: We’re awarding $2 million to the Aflac Precision Medicine Program, reinforcing our leadership in this crucial field. This funding expands access to genetic sequencing for young patients. It accelerates research into targeted therapies, bringing us closer to truly personalized treatments and giving hope to many children with aggressive or recurring cancers.
  • Funding Diverse, Innovative Research: The remaining $3.6 million funds 11 promising projects carefully selected from over 90 applications. These studies address some of the most challenging childhood cancers with limited or outdated treatments, employing innovative approaches that could significantly improve treatment outcomes.
  • Bridging Research and Treatment: Time is precious in the fight against childhood cancer. That’s why we’ve prioritized studies with strong potential for rapid clinical translation, potentially bringing new treatments to children faster than ever before.
  • Harnessing Immune Power: Within every child’s body lies an army of potential cancer-fighting cells. Several projects focus on enhancing cutting-edge immunotherapy approaches, unlocking the full potential of the body’s own defense mechanisms, and offering new possibilities for children battling resistant forms of cancer.
  • Looking Beyond Remission: The fear of relapse looms heavy for patients and families. By investigating mechanisms of recurrence, these studies aim to improve long-term outcomes and quality of life for survivors – and offer children a chance at a cancer-free future.

As we make these awards, we’re filled with a sense of purpose and hope. While the road ahead may be challenging, each step forward brings us closer to our goal of conquering childhood cancer.

Thank you for being an essential part of this journey.

CURE’s 2024 RESEARCH AWARDS

Early Investigator Awards

Rula Green Gladden, MD, Fred Hutchinson Cancer Center
Redefining residual disease detection in pediatric AML

Elizabeth Young, MD, University of California, San Francisco
Defining determinants of a cGAS-STIGN-mediated anti-tumor inflammatory response in osteosarcoma

Translation to CURE Awards

Eric Sweet-Cordero, MD, University of California, San Francisco
Defining replication stress and DNA damage as a therapeutic vulnerability in osteosarcoma

Pavithra Viswanath, PhD, University of California, San Francisco
Targeting and imaging serine metabolism in the tumor microenvironment in pediatric brain tumors

Michael Andreeff, MD, PhD,  University of Texas, M.D. Anderson Cancer Center,
c-MYC protein degradation in therapy-resistant pediatric leukemias

Eugenie Kleinerman, MD, University of Texas, M.D, Anderson Cancer Center
Metabolic reprogramming of the Ewing Sarcoma tumor microenvironment using pramlintide to augment NK cell immunotherapy

Kristopher Bosse, MD, Children’s Hospital of Philadelphia
Development of a GPC2 CAR T cell amplifying RNA vaccine

Alex Huang, MD, PhD, Case Western Reserve University
Effective TGF-beta signaling blockade synergizes cryoablation-induced STING activation in treating refractory and metastatic sarcoma

Jason Yustein, MD, Emory University
Dissecting and targeting PAK4-mediated signaling in Ewing Sarcoma development and metastasis

David Robbins, PhD, Georgetown University
Defining the druggable GLI Interactome in medulloblastoma

Soheil Meshinchi, MD, PhD, Fred Hutchinson Cancer Center
Rapid Transition of B7-H3 Targeted Therapies to High-Risk Childhood AML

Precision Medicine Program, Children’s Healthcare of Atlanta
A program leveraging genomic sequencing for pediatric patients with high-risk tumors, with the goal of identifying alterations that can impact therapies and improve outcomes.

Parent-Child Interaction Therapy and Childhood Cancer

a mother and daughter practicing Parent-Child Interaction Therapy

Contributed By: *Terresha Anthony, LCSW, PCIT Trained Clinician

What is Parent-Child Interaction Therapy?

Parent-Child-Interaction Therapy (PCIT), a treatment developed over 30 years ago for children and families, has been researched to discover how it may benefit families of young children with cancer or chronic illness. PCIT was originally developed for children ages 2-7 with behavioral challenges. Sessions are conducted with the child and the parents. The parents learn therapeutic interventions that have a high success rate in helping children to become more cooperative and behave in a more socially acceptable way.

Over the years, PCIT and adaptations to PCIT have been studied and shown effective for more than behavioral issues. PCIT and adaptations to the treatment are also effective for anxiety, depression, trauma, ADHD, and children with Autism Spectrum Disorder.

Why Ongoing Support is Crucial for Childhood Cancer Survivors

Facing cancer is an immense challenge for anyone, but for children, it means grappling with their health at an age meant for dreams of being a princess or a superhero. For their parents, it is a terrifying ordeal to witness the effects of treatment. To say the least, it is a traumatic experience for both parents and children.

Childhood cancer and other childhood illnesses can have a significant impact on a child’s behavior and how parents respond to their child. Children with cancer are at risk for a range of behavioral challenges, short-term and long-term. Effects of childhood cancer can interfere with development, social skills, and self-esteem. Childhood cancer can also increase the risk of developing anxiety and depression.

Why Try Parent-Child Interaction Therapy?

Parent-Child Interaction Therapy is the gold standard of treatment for children with behavioral issues. However, new research shows that trained clinicians can adapt the protocol to meet the needs of children with cancer or recovering from cancer, providing treatment at home or in hospital settings. PCIT is a valuable intervention to build resiliency in children and mitigate the long-lasting effects of cancer or other chronic illnesses.

Specifically for children with cancer or chronic illnesses, PCIT helps children feel safe and connected to their caregivers. PCIT merges play therapy and behavioral techniques while actively involving parents in the therapeutic process. PCIT offers the child a break from constant focus on their treatment and helps children manage their fears and anxiety about doctor’s visits or home treatments.

In summary, PCIT empowers parents of children with cancer. It gives them effective strategies to manage their child’s behavior and the reassurance to maintain consistent and firm discipline. Many parents find it difficult to set limits with their children because they feel the urge to protect their fragile child from any consequences. PCIT can provide a sense of normalcy for the child, supplying the structure they need to recover not only physically, but emotionally, from the traumatic experience of cancer.

Learn More About CURE’s Counseling Program

If your family has been impacted by a childhood cancer diagnosis, we would love to be a counseling resource for you. CURE’s Counseling Program has sessions available for patients, parents, and siblings. Please submit a counseling form (HIPAA compliant) and we will be in touch.

*Terresha practices at the Summit Counseling Center and is an in-network provider for CURE’s Counseling Program. Terresha’s professional focus revolves around the intricate dynamics of relationships. Specializing in Parent-Child Interaction Therapy (PCIT), allows Terresha to help children between the ages of 2-7 with emotional and behavioral challenges. Terresha received her Master of Social Work and a Bachelor of Social Work from Georgia State University. Her professional background spans from developing comprehensive case plans for children in foster care to developing programs to support women experiencing homelessness. Beyond her counseling endeavors, Terresha finds joy in the simple pleasures of life. She cherishes moments spent with her husband of 18 years, enjoying outdoor activities like hiking and biking, and savoring a cup of excellent coffee. Through her multifaceted experiences, Terresha embodies relatability and empathy, striving to make a meaningful impact in the lives of those she encounters.

Tips for Parenting a Teen During Cancer Treatment

Parenting a teenager can be challenging, and a cancer diagnosis within the family can make it even more difficult for a teenage patient or sibling. Genuine connection with teens doesn’t always come easily or even naturally. The GIVE skill is a particularly helpful tool to utilize as parents consider how to prepare for connection opportunities with their teenagers.

The GIVE skill encourages us to: be Gentle, act Interested, Validate, and use an Easy manner.

When we do these things, we have the opportunity to move from a quick check-in about school that involves the parent looking at the calendar on their phone to check the family’s itinerary and the teenager answering quickly before going to their room to a more intentional interaction that includes eye contact, lightheartedness in nonverbal communication and shared laughter about an event of the day, and two family members ending the conversation hopefully feeling more connected to one another. If a conversation is not as pleasant in subject matter, this skill still allows for connection via expressing understanding of one another’s points, even if full agreement cannot be reached. While many of us know the importance of aspects of the GIVE skill, intentionally utilizing the skill as a whole grounds us in the goal of connection with our teenager and provides us with a framework of how to do so.

Dialectical Behavior Therapy (DBT) is an evidence-based therapeutic process built on modules that allow people to better understand their own feelings and how to achieve their goals in connection with others. One of the modules that focuses on connection with others is interpersonal effectiveness, which teaches ways to communicate our needs, wants, and values without jeopardizing our relationship with others.

 

Alyssa Morrison, LCSW, is a psychotherapist specializing in grief and loss processes, trauma, and mood disorders. Prior to opening her therapy practice, she worked at Children’s Healthcare of Atlanta as a social worker including roles with the Aflac Cancer and Blood Disorders Center and also the Emergency Department/Psychiatry liaison services. She is honored to continue to work with CURE and connect with families impacted by childhood cancer. She offers in-person appointments in her Decatur office as well as telehealth appointments. She can be reached at alyssamorrisoncounseling.com.

A House Full of Love

Ross and Heather Strunk already had a full house with their three daughters. But they wanted to try for a son and were soon surprised to find out they were going to have two. They welcomed twin boys, Charles and Edward, on November 1, 2022. Life got quite a bit more hectic… and noisy.

“I like to say that our house is loud but full of love,” said Heather. “Someone is constantly moving around, and it is a very rare moment when we are all still.”

They had no way of knowing that life was about to get much busier. When Charles was three months old, Heather noticed a bump near his ear while sitting in church. She thought it might be a mosquito bite. But she realized it was causing pain when she touched it. The next morning, it was larger and purple.

She bundled Charles to the emergency room, where he was treated for an ear infection. But even after taking a course of antibiotics, it continued to grow. Her pediatrician thought it might be a clogged lymph node or ingrown hair.

“My mother’s intuition was telling me it was something different,” recalled Heather. “It continued to grow and grow until it began to change the shape of his face. When his eye was swollen shut, I knew we had to get to someone who could figure this out.”

Heather took Charles to the emergency room again and refused to leave until they had a diagnosis. After a biopsy, they were told that Charles had Langerhans cell histiocytosis (LCH), an incredibly rare, cancer-like condition. It happens when a person’s body makes too many immature Langerhans cells that build up and can form tumors or damage tissue, bone, and organs.

“My world just dropped with those three letters,” Heather said. “I was absolutely crushed.”

A few days later, he had his port placed and began chemotherapy.

“He was diagnosed at night and didn’t get to the oncology floor until 3 am,” Heather shared. “My husband and I didn’t sleep and had no clue what we were doing. That day, CURE was serving lunch in the family room, but we were both too emotional and exhausted to get it. Emily from CURE knocked on my door and asked if I wanted a sandwich. I immediately burst into tears! She hugged me and asked if I wanted turkey or ham. I couldn’t stop crying to answer. So I held up two fingers, and she got me a ham sandwich. I needed to know I wasn’t alone – and that moment told me that I wasn’t.”

Charles’ treatment lasted eleven months, and he has reacted fairly well to the steroids and chemo. He was delayed in walking and was given a prescription for physical therapy to help. He never needed it because he started walking the very next day and hasn’t slowed down.

Charles’ latest scans indicate that the chemo is working, and there has been no tumor growth. With nothing to slow him down, he spends as much time as possible outside and loves to play with trucks. He also loves to cuddle his mother. And while she leads a busy life with all her kids, Heather knows just how special those cuddles are and will stop anything to take them.

 

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