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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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Using yoga, movement, breath and sound to help address pain and struggle

Your body is naturally built to handle stress. Stress is any demand that is placed on your brain and body. An event occurs, and your body reacts, but then the body settles down. This is a natural part of our autonomic nervous system, the Sympathetic Nervous System or Fight or Flight mode. Think of it as the gas peddle on your car. It is the part of our nervous system that helps us deal with danger or a threat.

Having a child diagnosed with cancer creates ongoing struggle and feelings of fear and worry for everyone in the family. This ongoing stress can morph into anxiety. This happens when things are beyond our control when the mind goes to the past and to the future. This situation keeps your body in the Fight or Flight mode. Imagine an unbalanced teeter totter, one side has overwhelm sitting on the seat and the other side has calm on the seat.

Overwhelm is taking over. Finding relief from Fight or Flight can be difficult when you have a foggy brain from lack of sleep, many appointments, other children to care for, and so much unknown. So bringing awareness to one of the most natural things you do, can help significantly. It does not take much to help bring your body into a little more balance. Utilizing your breath can change the
way your body functions.

Your Parasympathetic Nervous System or Rest and Digest mode, helps to calm the body. Now, imagine the brake on your car. This allows for the body to slow itself and receive input that it is safe in the moment. It allows for smoother functioning of bodily systems, such as sleep and digestion, to name a few. Revisit the teeter-totter… this system helps balance out the gas peddle (overwhelm) and bring some balance (calm) to your body.

Diaphragmatic Breathing: This is a very simple breath technique. The belly expands as you begin to take deeper breaths. However, do not force this breath. Kindness to yourself here is key. You may decide to place your hands on the abdomen to actually feel the breath move the belly. As your exhale arrives, the abdomen contracts, and the air slowly reverses direction. Extending the exhale is what helps to put on the brake and calm the nervous system.

Of note, it is important to say that when you are under significant stress and/or anxiety, you can take very shallow breaths in the upper chest. So this breath may take a little while to get used to performing. Be kind to yourself and practice with patience. Understandably, this is difficult when you feel upset, but know that you’re doing your best just trying.

  • Welcome a tall, upright posture to create more space in the torso for your breath to enter and exit.
  • Having a small change of scenery can be a game-changer. If you’re in a hospital room, go in the hallway or family room. Perhaps outside if that is accessible. However, practicing this breath right where you are is always perfect. If you’re comfortable, maybe closing your eyes or having a soft, downward gaze can help bring your mind inward toward the breath without as many distractions.
  • Welcome any feelings in your body. Feel your feet on the floor. Hips on the chair. Arms in your lap. Your body can become numb when faced with heavy overwhelm. Notice areas of tension or pain and offer these spaces your compassion.
  • To practice this breath pattern, invite in the breath for a count of 3-4. Notice the belly expand. Exhale for the same count. Notice the belly contract. As you practice, see if you are able to extend your exhale. Inhale for 3-4 counts. Exhale for 6-8 counts. Practice making the exhale twice as long as the inhale.
  • Perform 2-3 minutes at a time, and as frequently as you’d like, to help keep your body at ease. You cannot use this breath too much.

Some tips from Jan

Jen Herndon is a Yoga Therapist and Yoga and Grief Yoga® Teacher. She is a Grief Educator and has been an inpatient rehabilitation-based Physical Therapist Assistant for 29 years. Grief Yoga®’s mission statement: Using yoga, movement, breath and sound to help address pain and struggle. This makes space for more empowerment and love. Please consider joining me at the link below for Rise: A Healing Community.

If you find stress and/or anxiety is interfering immensely with your everyday life, you may wish to speak to a professional counselor for
ongoing support. As a yoga therapist, together, we seek out the best route for you to journey down to manage your specific situation as it evolves. Options include yoga movements, breath practices, meditation, visualizations, and practices of connection.

Lauren’s Run & Picnic is one for the Ages

Gorgeous weather made the perfect backdrop for the 30th annual Lauren’s Run & Picnic, presented by AutoNation. This special race brought together 1500 participants, many of whom have been personally affected by pediatric cancer. The spirit of the event is always so special as the community comes together to honor fighters, remember those children we’ve lost, and celebrate survivors. Two young survivors not only beat cancer but also medaled at Lauren’s Run.

Ella Nelson was seven months old when she was diagnosed with Langerhans cell histiocytosis or LCH. The fight against cancer caused significant growth delays. 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. But now she is eight and loves to run. Ella has run the 2k at Lauren’s Run, but this is the first time she has run the 5k and she came in second place in her age group.

Jackson Fenchak was also diagnosed with cancer as an infant. After a fourteen-hour surgery and chemotherapy, Jackson was declared cancer-free. Over the years, he has had several foot surgeries. In fact, his foot is now made of a cadaver bone! Which makes it all the more amazing that he is an accomplished cross country runner. He brought his speed to Lauren’s Run, finishing first in his age group and 20th overall.

Lauren’s Run & Picnic is so much more than just another run. The picnic that follows is epic for the children and the whole family. There were so many activities to choose from – a row of huge inflatables, crafts, games, music, face painters, balloon artists, and more. But it wouldn’t be a picnic without food, and that was covered. Our good friends at Chicken Salad Chick brought delicious meals and gladly served all afternoon. There was also delicious food from Jimmy John’s, Dunkin’, Bad Daddy’s Burger Bar, and a special addition this year of award-winning barbecue.

Duval Semi Trailers has been a great supporter of CURE for several years through their DST Gives Back program. This year, they volunteered to bring their cooker trailer to Lauren’s Run & Picnic. They set up the day before the race and began cooking delicious BBQ that truly gave the picnic a homespun feel. The date marked Vice President Danny Carroll’s 50th birthday, and his family and the DST team surprised him to celebrate him and serve.

“Our entire team that was there cooking has been changed forever,” Danny said. “We absolutely loved being there, and we all did it with complete joy in our hearts.”

Families were also moved. Nathan Samples is in the middle of a fight with leukemia, and his mother, Morgan, said. “These events are so important because they raise funds to help CURE fund research and care for families. But they are also so important because they give families like ours a “break” from cancer. There is an understanding among cancer families, and it’s a relief for our whole family to be surrounded by others who have fought or are fighting a battle that none of us would choose for ourselves and certainly not for our children.”

This year’s Lauren Zagoria Champions for Children Award was presented to Sam and Gary Alexander and the Northeast Atlanta Chapter of the National Charity League for their longtime dedication and tireless service to children with cancer. Through the support of so many sponsors, donors, volunteers, and participants, more than $315,000 was raised to support childhood cancer research. We are thankful to all who played a part in making the 30th annual Lauren’s Run & Picnic an incredible success.

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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