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Added Strength

The name Kelson paid tribute to two Loveland family members, Nelson and Kelly. When his parents named him, they had no way of knowing how fitting his name would be. They soon learned there was a very similar nautical word, keelson, a structure added to a ship to strengthen its framework. As Kelson got older, everyone who knew him marveled at his added strength.

Kelson faced significant health challenges from the day he was born. He began having seizures at four weeks old, which forced him to spend twelve weeks in neonatal intensive care. At six months old, he was diagnosed with a form of epilepsy. That was followed by scoliosis, neuropathy, hydrocephalus, and a host of other medical complications. Poor Kelson couldn’t get a break.

Despite all of the bad medical news, Kelson had a smile that could light up the world and taught himself how to communicate by clapping. He started to improve when he was six years old. But soon, he faced his biggest challenge, a brain tumor called a pilocytic astrocytoma. Despite treatment, the tumor continued to grow. As his health deteriorated, his family was forced to stop treatment in 2019. Kelson passed away on May 5, 2020, surrounded by his loving family. Before he passed, his family made a promise to him – to honor his life in every way they were able and to live their lives in a way that would make him proud. Throughout his (almost) nine years, Kelson’s life was deeply enriched by compassion and kindness their family will never forget.
There are three ways his family honors Kelson’s life.

Kelson’s Curtains
When Kelson began treatment on the Aflac floor at CHOA, Kelson’s mom, Becky, explained that the windows to the hallway were very large and let in a lot of light, making it hard to sleep. Says Becky, “At first, I tried taping up a medical pad with an entire roll of paper tape, which fell down as soon as I fell asleep.” Now, the Loveland family and a team of volunteers make them out of bright, cheerful flannel and deliver Kelson’s Curtains to other families fighting cancer.

Seven Days of Kelson’s Kindness
“For the seven days leading up to his birthday, we host a kindness campaign and encourage others to spread kindness in Kelson’s memory,” Becky explained. “Kelson’s sister came up with the idea when we were trying to decide how to celebrate his first birthday without him, and it has been the perfect way to honor him.”

Bub’s Run
“I’ve been a runner all my life, so it was an easy decision to host a 5k to honor Kelson’s memory,” Becky said. “The first Bub’s Run was held in our neighborhood on May 8, 2021, which was a year after Kelson’s passing. We just sent notes to family and friends, expecting a small group to show up, but nearly 80 people did and we raised $8000 for MUST Ministries. Since then, Bub’s Run has grown each year and raised nearly $100,000 in three years for various organizations that impacted Kelson’s life.

 

CURE is the beneficiary of Bub’s Run this year. To learn more about Kelson and his “Added Strength,” join Kelson’s family on Saturday, May 4, at North Cobb Christian School in Kennesaw. For more information and to sign up, visit https://www.adventuresignup.com/Race/GA/Kennesaw/BubsRun.

 

Play & Expressive Arts Therapy

When we look at the impact that cancer has on a family, we find that all members are affected. As the family adjusts to support the child diagnosed with cancer, siblings may feel fear, anger, anxiety, loneliness, jealousy, and guilt as their family routines and schedules change and as parents are required to spend more time and effort with the child who is undergoing cancer treatment. Though siblings may cognitively understand that their sibling requires time and attention from parents, they may still grapple with feeling left out and unsure of how to adjust to changing family dynamics. Using play-based and expressive arts therapy techniques meets children where they are developmentally. Play is the language of children, and toys are their words. A therapy room stocked with a carefully curated selection of toys and art materials offers a safe ground for exploring and understanding changes in a family system due to a sibling’s diagnosis of cancer. Play and expressive arts with the grounding presence of a trained therapist provide children with a rich and natural way to express themselves, build emotional regulation, figure out which coping skills are and are not effective for them, and identify and manage sources of anxiety and strain. Therapy can help children build resilience and thrive, and working with a therapist can offer an additional source of support to parents as they address the needs of all of their children.

Mary-Beth Archer is a licensed master social worker who provides play-based and expressive arts therapy at Art It Out.
She is passionate about connecting with children and adolescents through developmentally appropriate play-based techniques. Her goal is to honor the individuality of each child and to help them develop the resilience they need to thrive. She has worked as an international children and families social worker and as a children’s trauma therapist. She has four children of her own and deeply understands the joys and challenges of parenting. Mary-Beth has additional training in Trauma-focused Cognitive Behavioral Therapy, Grief Counseling, and Sand Tray Expressive Arts.

Watch Mary-Beth discuss an art project you can do at home with your child.

CURE Childhood Cancer recognizes the impact that a childhood cancer diagnosis can have on the whole family. CURE’s Counseling Program helps address the unique psychological needs of families affected by childhood cancer. CURE’s family-centered approach to addressing these unique experiences includes partnering with a network of licensed community-based therapists to offer counseling sessions to CURE families.

For more information about CURE’s counseling program, contact Chelsea Key at [email protected], or learn more through the button below.

Run with Ella

Lauren’s Run & Picnic is getting close, and this year marks a very special anniversary. April 28 will be the 30th time we’ve lined up to run this cherished race. It will also be a special day for a young girl running the 5k for the first time.

When Ella was seven months old, her parents noticed a change in her demeanor and a type of gastric reflux that started suddenly. Doctors put her on a new formula, but she continued struggling to eat and had to be taken to the emergency room. Soon, she was diagnosed with Langerhans cell histiocytosis or LCH.

LCH is a rare, cancer-like condition that forces the body to make too many of a specific type of immune cells. These cells can cluster and form tumors. Ella’s had clustered in her GI tract, blocking the movement of food. As she began her treatment, Ella was hooked up to a pump that delivered nutrition directly to her bloodstream.

“You learn very quickly when you start treatment that you can’t ask questions about the future,” shared Ella’s mother, Allison. “Her doctors didn’t know if she would ever be able to eat or have a normal life. She didn’t learn to eat until she was 18 months old, and her mouth muscles didn’t develop. She had to have intense speech therapy until she was three years old. But she is a picture of resiliency and is now ahead of where she should be developmentally.”

Ella is now eight and in the second grade. She plays soccer and loves to run. She especially loves road races; in fact, her whole family does. She has run the 2k at Lauren’s Run and is excited to do the 5k for the first time this year!

“Growing up, my family liked to run a 5k in Plains, Georgia together. It became our tradition,” Allison said. “My mother is one of seven girls, so our family is large. We’ve all adopted Lauren’s Run as our new family race tradition.”

Ella’s grandmother, Ellen Rose, has spearheaded the team – Cousins for a Cure. On April 28, many of Ella’s cousins, aunts, uncles, and grandparents will join the fun.

“She absolutely loves the picnic afterward,” Allison added. “She looks forward to the bouncy houses, cake walks, and all of the games. It really is a wonderful day.”

Cousins for a Cure is not only a running team; they are also a fundraising team, and Ella is right in the thick of it. Ever a competitor, she calls her grandmother regularly to see how the team is faring with donations.

Ella would like to invite you to run and picnic with her. Registration is now open for a day filled with excitement and inspiration! The 30th annual Lauren’s Run & Picnic, presented by AutoNation, will be held on April 28 in the shadow of the King and Queen buildings. Following the race, you’ll love the over-the-top picnic featuring delicious food from Chicken Salad Chick, Dunkin’, Jimmy John’s, Bad Daddy’s Burger Bar, and award-winning BBQ from our friends at Duval Semi Trailers.

For more information and to register, visit laurensrun.org.

Thank You for Bringing Joy

December can be a difficult month for families whose children are fighting cancer. Hospitalizations and treatment schedules, along with the financial burdens of childhood cancer, make it difficult, if not impossible, for parents to provide festive holiday experiences for their families or buy gifts. The CURE community stepped forward with compassion and characteristic generosity to make sure these families felt loved and supported during this festive time of year. We want you to know how much your support meant to our families.

More than 120 families were treated to an afternoon of fun at CURE’s Holiday Parties, where they enjoyed lots of special treats, dancing, face painting, crafts, and visiting with Santa.

“Thank you to everyone who sponsored, planned, and volunteered at the holiday party today. Our family had an absolute blast, and we appreciate everything you all have done for us!”

Through our Holiday Angel program, donors filled wish lists to provide mountains of gifts for 161 families – more families than ever before.

“This has been the hardest year of our lives, hands down. Throughout the year, CURE has provided much-needed bright spots during some very dark times. You made our Christmas when we didn’t think we would have one. We truly appreciate all you have done to help us.”

Your gifts allowed us to provide more than $50,000 in emergency 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.

“Please pass along – CURE’s help doesn’t just mean ‘something’ – it means EVERYTHING. We would not have made it these past few months, literally, without CURE.”

The holidays can be such a difficult time for families fighting childhood cancer. We can’t thank you enough for brightening their season with compassion and kindness.

Faith Has a Future

The last five years have been a true tempest for Faith. But you would never know it if you talked to her. Despite what she has been through, this beautiful 19-year-old exudes positivity.

Her cancer journey began when she was fifteen. After finding a lump in her chest, her doctors determined that Faith had Hodgkin’s lymphoma. Her treatment consisted of eight months of chemotherapy, which caused her to lose her hair, which was very traumatizing for her. She was declared cancer-free at the end of her treatment. But that only lasted six months before she relapsed.

After chemotherapy, immunotherapy, and radiation did nothing to stop her cancer, Faith’s doctors looked for a bone marrow match for her. Unfortunately, the national registry did not have a match. Faith underwent CAR T cell therapy, which uses immune cells that are genetically altered in a lab to locate and destroy cancer cells. This therapy worked well, and Faith was able to resume a normal teenage life.

“I lived each day as if it were my last,” Faith shared. “My family and I celebrated every milestone that most people take for granted.”

Three years later, another lump put her back in treatment. This time, a bone marrow match was located, and Faith underwent a bone marrow transplant, which worked to stop the lymphoma. But it came with a complication that she is fighting now.

Transplant patients are given an immunosuppressant drug to prevent the immune system from attacking the new organ or bone marrow. This drug depletes the immune system, leaving the patient susceptible to infection. Unfortunately, Faith contracted a virus that led to a condition called post-transplant lymphoproliferative disorder or PTLD, which she is currently fighting.

Faith has kept a journal about her journey. The words she uses to begin the account of her fight with cancer are haunting.

“I used to stare into the mirror, haunted by the reflection looking back at me. The girl who once had long blonde hair and a perfect, scarless body was gone. My face was inflamed, my ribs were poking out, and dark circles surrounded my eyes. I blinked, and dresses became hospital gowns, hoping for good grades became hoping for good test results, and spending time with friends became spending time with doctors. When my doctor revealed that I had Stage 4 Hodgkin’s lymphoma, it felt as if my entire identity was ripped away. The old me was gone, and the only thing left to do was accept this new life of mine.”

Now that she sees the end of her cancer fight, Faith wants to use her story to raise awareness about childhood cancer and funds for research. She wants to be a part of the solution for children forced to fight like she has.

“My biggest goal is to use my story as a survival guide for kids and give back and help in any way that I can to help other people,” Faith said.  “I’ve just started thinking about my future now that I know that I have one.

Carter’s New Diagnosis

Last September, five-year-old Carter woke up from his nap acting very strange.

“He was giggling, acting goofy, and couldn’t walk straight, “described his father, Brad. “Honestly, if I didn’t know any better, I’d have thought he was drunk.”

Brad and his wife, Becky, were so alarmed that they took Carter to an urgent care practice, then to the emergency room. After testing, the original thought was that Carter had some kind of viral infection causing brain inflammation which triggered the abnormal behavior. A prescribed steroid treatment seemed to work. But after a week off of the steroids, the same strange behavior started again.

After more comprehensive testing, Brad and Becky were told that Carter had a brain tumor around his thalamus. The thalamus relays information from the brain to the rest of the body. Pressure from the tumor caused it to misfire, sending strange signals across Carter’s nervous system.

The original diagnosis was a low-grade glioma, so Carter started low-dose chemotherapy immediately. Through CURE’s Precision Medicine Program, his doctors also sent a sample off for genetic sequencing to see if they could learn more about his tumor and develop a personalized plan to treat it.

Even a low dose of chemo can leave harsh side effects, and Carter was no exception.

“In January, we pushed up the date of his MRI because he was going downhill,” explained Brad. “That showed that he had hydrocephalus – fluid on his brain that was likely caused by chemo. He got a shunt installed, and the pressure was relieved in about a week.”

The results of his gene sequencing came back and proved very interesting and helpful. Carter’s tumor was a high-grade glioma, meaning the treatment he had already endured was unlikely to have cured him. The tests also revealed a mutation that is very different than the mutation 90% of high-grade glioma patients have. However, this mutation is common in lung cancer patients, and there is a drug that is successful in inhibiting its growth. Carter began radiation therapy combined with the inhibitor, and the results have been fantastic.

“Carter has very minor side effects from this treatment, and his latest MRI showed that his tumor is stable,” said Brad. “We are so thankful for precision medicine. Doctors can now target his specific mutation instead of annihilating his little body with chemotherapy that most likely wouldn’t have worked.”

Carter recently celebrated his sixth birthday and started first grade. Because of the treatment, he has had to adjust slightly but has adapted well and is enjoying life again. He’s playing with his brother, riding his bike, and getting dirty… just like a boy should.

Take the next step to support research that will help save kids with cancer… kids like Carter.

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You Made September Golden

Every September, we celebrate Childhood Cancer Awareness Month, and it quickly becomes a month of continuous buzz for CURE. There are so many components that our staff, partners, and volunteers stay busy all month long. We loved the constant events and activities and watching so many people get involved. You have been the biggest part of September’s success! We would like to share a little of what you did for children with cancer.

The month started in grand style at Dragon Con. CURE was selected as their charitable partner for 2023, and we had so much fun participating. Everywhere we went, we saw attendees and exhibitors raising money in creative ways. Then Con matched donations up to $125,000. In total, Dragon Con contributed a whopping $272,875!

Maybe you saw or purchased this year’s garden flag, helping to line streets and neighborhoods. While the flag was a small investment, we heard from many families whose children are currently fighting cancer that seeing these flags all over town made them feel so supported and uplifted. The flags also raised $215,216 to fight childhood cancer.

Every day, we shared the stories of three remarkable childhood cancer heroes through CURE’s Kids. Many read them faithfully and couldn’t help but be moved and inspired. The journeys of these heroes motivated many to give, and CURE’s Kids raised $113,000 to fund life-saving research and support families in the fight.

Our September partners stood with us to drive awareness and raise funds. Our supporters filled their plates with burgers, burritos, sandwiches, chicken salad, cookies, pies, ice cream, Italian ice, and cookie dough to benefit CURE. Fortunately, yoga, CrossFit, and martial arts classes offered ways to stay fit while supporting CURE. Several businesses encouraged patrons to join our Coins4CURE campaign and raised $36,000. From jewelry and coffee to hardware, clothing, teeth cleanings, and haircuts, a variety of businesses made it their mission to put children with cancer on center stage. Thank you to old friends and new ones who joined us.

Dozens of schools showed their energy and spirit through Gold Out games. These games shared awareness of the issues surrounding childhood cancer, and many raised much-needed funds to fight against it. Some honored specific heroes in their community with moving tributes.

September has shown us that our message resonates within the community, and it’s all thanks to you! Your contribution, no matter how big or small, has made a significant impact, and we are incredibly grateful.

Pirate Tales and Prosthetics: Alaina’s Unstoppable Sense of Humor

It doesn’t take very much time spent with Alaina to realize that she is hilarious. She is a joker who radiates positivity and has a sunny disposition despite going through a very difficult year.

Alaina started having severe knee pain early in the summer. Within a few days, it hurt so bad that she couldn’t walk. Her parents took her to the emergency room, where soon she was diagnosed with a bone cancer called osteosarcoma. The treatment plan consisted of eight rounds of chemotherapy to shrink the tumor, followed by amputation, and then eight more rounds of chemo to prevent the cancer from returning.

The amputation Alaina had is called rotationplasty – a unique surgery where the knee is removed and the ankle is rotated and reattached to the thigh to serve as a knee. Once fitted with a prosthetic, this new “knee” offers the broadest range of motion. During the operation, surgeons removed most of her femur but were able to save the tibia, and most importantly, they removed the entire tumor.

Alaina’s mom, Mary, recently shared, “So far in our cancer journey, we have had hard times and good times. We have had good days and days where we have slept all day. Days we have met some amazing people and days when we have learned so much. We have laughed, we have cried, we have even asked why. But we know with God’s help that she will ring that bell!”

Alaina has such a positive attitude and is determined to walk as soon as possible. There are milestones of flexibility she has to reach to get her prosthetic. Although physical therapy is grueling, Alaina is working hard and is far ahead of schedule. She wants to get out of her wheelchair and learn to walk with a prosthetic.

In the meantime, she works on pranks to play on people. Her newest party trick is to bring her foot to her mouth – she says that surprises everyone the first time. She also loves showing people her scar and creates stories about how she got it. Sometimes, she will say she was the victim of a shark attack or that she’s a pirate. With Halloween coming up, none of her family or friends would be surprised to see her dress up like a pirate. But with her sunny demeanor, she will likely be the smiliest pirate to roam the seven seas!

CURE is the Charity Partner of Dragon Con 2023

Dragon Con is the largest multi-media, pop culture convention focusing on science fiction & fantasy, gaming, comics, literature, art, music, and film in the universe – and the best place to celebrate all of these things with fellow fans on Labor Day Weekend.

August 31 – September 4

Atlanta, GA

Every year, Dragon Con raises money for designated charities throughout the convention via auctions and other events. In order to raise the most funds possible for our designated charity each year, they host several charity events throughout the show, including main auctions on Saturday and Sunday afternoons.

CURE Childhood Cancer has been selected as Dragon Con’s charity partner for 2023! Please join us at the event and support their efforts to make a difference in the lives of children fighting cancer.

For more information, visit https://www.dragoncon.org/.

Counseling Leads to a Better Place

In the summer of 2020, Paul and his family were enjoying a mountain vacation. Although he had been experiencing intermittent leg pain, he never let it slow him down, and he didn’t complain. So when an x-ray revealed a tumor in his right femur, his parents were shocked.

“We thought Paul had a muscle injury, or possibly a bone infection,” Paul’s mother, Charlotte Marie, said. “We weren’t prepared to hear the words cancer or Ewing sarcoma.”

More bad news came as further testing revealed more than 100 tumors in Paul’s lungs and a lesion on his spine and left femur. After nine rounds of chemotherapy, his lungs were clear, and the tumors on his left femur and spine were gone. The next step in his treatment was surgery to remove half of his right femur and replace it with a telescoping rod that will expand as Paul grows. Following the surgery, Paul endured more chemo and radiation until he was declared cancer-free in June 2021.

“Paul put his head down and handled treatment very well,” shared his father, Jonathan. “We had a goal of getting to the finish line of treatment, and we focused 100% of our energy on that day. What we weren’t prepared for was the day after.”

After a year of being entirely consumed by Paul’s health, Jonathan and Charlotte Marie began to take stock of the unseen toll of his treatment. They describe Paul as an “old soul” who was slightly stoic before cancer. But his experience increased that stoicism. He has also become very protective of his family and doesn’t want them to feel sad. So he tries to manage his own emotions so no one worries about him.

“In many ways, his innocence was stolen from him,” Jonathan said. “Instead of going to kindergarten, he was getting a port placed in his chest and beginning chemo. That’s a lot for anyone to deal with, much less a six-year-old.”

Paul’s parents turned to CURE for help, and Paul now works with a therapist to help unlock his feelings about his cancer experience and to learn how to express his emotions. It seems to be helping him greatly. But Paul wasn’t the only one who needed support.

“We started seeing a counselor through CURE’s Counseling Program,” said Jonathan. “Everything about the year in treatment hit us, and we weren’t prepared to process it all. It has been very helpful to carve out an hour to talk to someone who can help us work through these things. We also get to hear each other’s side of the trauma.”

“I feel like we woke up after treatment ended and had to deal with a great many issues we had buried while we focused on getting Paul better,” added Charlotte Marie. “I’m glad we weren’t alone and had a third party help us resolve these things. It’s been a truly invaluable resource. Jonathan and I are in a better place because of the counseling we’ve done.”

After working through a couple of very traumatic years, the future is looking much brighter for Paul’s family. Jonathan and Charlotte Marie would encourage others to seek counseling when needed as everyone can benefit from help processing such a terrifying and stressful experience.

If your family has been impacted by a childhood cancer diagnosis, we would love to be a counseling resource for you. Through our Counseling Program, we make sessions available for patients, parents, and siblings. Click the button below to learn more.

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