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Thumbs Up for Bernie

On a camping road trip with her three children, Jenny Jobson began feeling sick. By the time they arrived at their destination in Texas, she had identified the source of her illness and had quite a surprise for her husband.

“At some point, I realized my sickness was actually pregnancy,” she said. “We thought our family was complete since my then-youngest was ten years old. But God has the best sense of humor. Bernadette came along and turned out to be the missing puzzle piece we didn’t know we needed.”

Bernadette became affectionately known as Bernie and was adored by her family from the start. Her siblings had all been incredibly healthy children, so when Bernie had unusual symptoms at 18 months old, Jenny felt something was seriously wrong.

“She began sweating a lot, had unusual temper tantrums, and her face was swollen,” Jenny recalled. “Then she got a bump on her finger that wouldn’t go away even with an antibiotic.”

Unexplained bruising and splotches on her face convinced Bernie’s pediatrician to send her to the emergency room for further evaluation where a blood test revealed that Bernie’s white blood cell count had skyrocketed to 300,000. A healthy person has a white blood cell count of about 4,000 – 11,000. Further testing confirmed that Bernie had acute myeloid leukemia. She received her first dose of chemotherapy that very day.

Bernie’s treatment plan consisted of four rounds of chemotherapy. Along with wiping out cancer, chemo also destroys the white blood cells that fight infection in a healthy person. That meant that each round required a hospital stay of 20-25 days so her blood cells would recover. Bernie’s four rounds of chemo lasted 150 days, 97 of which were spent in the hospital – which is grueling for anyone, especially a toddler.

“If she wanted to leave the room, she had to wear a mask,” Jenny said. “But Bernie didn’t like to wear masks. So we spent all of our time in the room with the television on.”

Bernie finally got used to wearing her mask so they could explore other areas of the hospital. In the beginning, she fought every single needle poke – and there were many. Gradually she began to handle being in the hospital better and now she thinks it is normal to go to the doctor so much. Her parents got great news after her four rounds of chemo – Bernie was in remission! She began monthly labs that consistently showed her to be cancer-free, and now she has moved to appointments every six months at the survivor’s clinic. Although Bernie is doing great, she will always have to have her heart monitored due to the toxicity of the treatment she received.

But now, Bernie is thriving. She loves ballet and other forms of dancing, art, building things, and of course, princesses. She seems to have forgotten most of the rigors of her treatment. But her parents remember.

“I will never be grateful that Bernie was sick,” Jenny said. “But I’m thankful for the life lessons and perspective that it gave me and our family.”

Jenny also recognizes the role that CURE played. She appreciated the Open Arms meals and toiletry bags provided during her long stays. She also expressed gratitude for the Tote Bag she received.

“We got the CURE tote bag two hours after her diagnosis,” she explained. “At first I was a little resentful because it meant that Bernie really did have cancer. But that bag became my constant companion to all our appointments. The tips from other parents were very helpful, and I used the journal to track everything related to her treatment.”

Childhood Cancer Books for Teens & Kids

Reading about children with cancer or about cancer itself can sometimes make it less scary for young children. There are some great book titles that you can share with children of all ages. The following is a list of resources, most of which should be available on Amazon.com or your favorite bookseller.

Miss Fannie’s Hat by Jan Karon

H is for Hair Fairy by Kim Martin

When Someone You Love has Cancer by Alaric Lewis

Taking Cancer to School by Cynthia henry and Kim Gosselin

Butterfly Kisses and Wishes on Wings by Ellen McVicker

The Lemonade Club by Patricia Polacco

The Sibling Story Project by Allison Fine

Why Charlie Brown, Why? By Charles Schulz

The Amazing Hannah by Amy Klett

Alex and the Amazing Lemonade Stand by Liz and Jay Scott

*What About Me?  When Brothers and Sisters Get Sick by Allan Peterkin

Henry and the White Wolf by Tyler Karu and Tim Karu

Kathy’s Hats by Trudy Krisher

You and Leukemia by Baker

When Billy went Bald by Julie C Morse and Greg Mikrut

The Famous Hat by Kate Gaynor

How Do You Care for a Very Sick Bear?  By Vanessa Bayer

Cancer Party!  By Sara Olsher

Chemo to The Rescue by Mary Brent and Caitlin Knutsson

Chemo, Craziness, and Comfort: My Book about Childhood Cancer by Nancy Keene and Trevor Romain

Oliver’s Story: For Sibs of Kids with Cancer by Michael Dodd

Do I have to go to the Hospital? By Pat Thomas

Cuddle Bear by Claire Freedman

The Hare Who Lost Her Hair by Amy Leonard

Books about coping with loss

What’s Heaven by Maria Shriver

The Invisible String by Patrice Karst

And Still They Bloom: A Family’s Journey of Loss and Healing by Amy Rovere

 

Kyla Bands

When faced with weeks of quarantine earlier this year, people dealt with the time at home in all different ways. Some people read books, binged television series, or figured out how to work out at home to stay in shape. Others complained that they were too close to their refrigerator 24 hours a day. Some people dove into their hobbies. One 8-year-old girl in New Jersey spent her time learning something useful.

That girl’s name is Kyla, and when faced with hours at home, she decided to learn a new craft. Kyla had been given a finger loom kit, which has a tool used to weave colorful rubber bands into decorative items. So she learned how to make bracelets out of the rubber bands.

“She made them all day long,” said her mother, Shannon. “We thought she would get bored with it, but she kept on going until they piled up!”

Once Kyla had accumulated inventory, she came up with a plan. Kyla is no stranger to childhood cancer. She has a friend who lost her cousin to neuroblastoma, and she also met a girl at camp who had cancer one year and came back as a survivor the next. Kyla’s heart was touched by both children, and she wanted to do something.

“I want to help kids so they don’t have to get sick anymore,” Kyla declared to her parents one day.
With this in mind, she started calling her bracelets Kylabands and worked with her parents to sell them and donate all of the proceeds to CURE. She started selling them to friends online and the first day made $600! Sales trailed off a little after that day, but Kyla is thinking of new ways to market her bands.

“She may make kits that kids can use to create their own bands,” explained Shannon. “She is also considering making mask chains so that kids can wear their facemasks around their necks and won’t lose them or have to set them down on their desks at school.”

Each shipment of a Kylaband includes a note from Kyla:

Thank you for supporting CURE Childhood Cancer. Let’s band together to help fight pediatric cancer.

Kyla is in the third grade, and her school has recently returned to in-person classes. While this cuts into her Kylaband production time, she is happy to be getting back to normal. She told her mother that she feels like she is making a difference.

We can assure you, Kyla… you’re making a huge difference!

More Like a Friend

How a unique relationship between patient and doctor led to an unexpected gift

 

One day, Dionne Gould was holding and nuzzling a friend’s baby and she teased her teenage son, Matthew, that she was going to nuzzle his neck, too. But when she moved toward him, she noticed that his neck was swollen. After a closer look, she decided to take Matthew to an urgent care clinic. The clinic sent Matthew to the hospital. About an hour after arrival, the emergency room doctor came back with a surprise diagnosis – acute lymphoblastic leukemia (ALL). Matthew’s chemotherapy treatment began right away.

“It took a long time for Matthew to reach remission,” Dionne recalled. “Every time they tested him, there was always a trace of the cancer.”

Finally, he received a bone marrow transplant that helped him achieve remission. For Matthew, this was the worst part of his treatment. After a second bone marrow transplant, Matthew’s cancer has been stable. Being a member of a close family helped see him through the hardships of treatment. Matthew also had a small group of very close friends to lean on during treatment. He and three other young men have been friends since middle school, and his friends were there for him the entire time! He also enlarged that circle of friends by beginning an unlikely friendship during his cancer treatment.

For nearly two decades, CURE has funded the training of pediatric oncology fellows at Emory University School of Medicine. Providing funding to further their education helps ensure that those future oncologists become the clinicians and researchers we need in order to eradicate childhood cancer.

During his medical training at Emory, Dr. Ryan Summers was a CURE fellow. Now he is a pediatric oncologist at Children’s Healthcare of Atlanta. He happened to be in a group of doctors who congregated in Matthew’s room to discuss his care with his mother. Overwhelmed by them, Matthew pulled the covers over his head. But he soon realized that there was something special about one of those doctors – Dr. Summers.

“When I first saw him, I thought he was too young to be a doctor,” laughed Matthew. “I found out he likes Star Wars and the same video games as me. And he would talk to me about his kids. He always treated me more like a friend than a patient.”

That friendship led to something very special. At the time, Dr. Summers was working on a research project involving mouse models that he was particularly excited about. So much so, that he would discuss it with Matthew and the “mouse research” became an inside joke between the two.

When Matthew was offered a wish by the Make-A-Wish Foundation, he began pondering his options.

“I was walking the halls one day and I saw the little kids and babies in treatment,” Matthew shared. “Right then I knew that I wanted better treatments for them than what I had, so I told my mom I wanted to give my wish to the mice.”

From that moment, Matthew never wavered. Although his mother playfully suggested a Hawaiian vacation, she knew his mind was made up. Dr. Summers also tried to talk Matthew out of it to no avail. It took a little time, but in an incredibly selfless gesture, Matthew contributed his wish ($5000) to Dr. Summers’ research.

That’s not the end of their story either. Matthew is a senior in high school this year and plans on becoming a doctor. Given his own experience with the disease, Matthew hopes to focus on pediatric oncology research. And if he and Dr. Summers have their way, they will work side by side and conquer childhood cancer together.

 

A Lasting Legacy

Larry Connolly was recruited to CURE’s Board of Directors in 2006 by his good friend, Vernon O’Neal. He ended up serving on the board for nine years, including two years as president, one as vice president, and one year as treasurer. Those years were pivotal years for CURE, during which the organization experienced tremendous growth.

Larry sold his company in 2012 and started the Connolly Family Foundation. After looking for the best way to support CURE now and in the future, Larry decided to focus on CURE’s partnership with Emory University School of Medicine in support of fellowship training. Larry decided to work with CURE to create a fellowship endowment at Emory.

CURE has funded fellows for more than 20 years, and 18 former CURE fellows are now practicing medicine in top institutions around the country, treating patients and pursuing research for cures. The funding of a pediatric oncology fellow allows these young doctors to further their education and ensure that they become clinicians and researchers focused on cancers that affect children. Larry is a staunch supporter of CURE’s vision to invest in the training of these young doctors and sees it as beneficial for more than just the young doctor funded.

“What I like about providing funding for a fellow is that it is not only good for CURE, it is good for the city of Atlanta,” explained Larry. “This funding will hopefully bring quality young professionals into the city and keep them here to the benefit of our children.”

By making this an endowment, it isn’t one fellow who will be funded. The CURE Connolly Family Fellow is a lasting legacy that will perpetually fund fellow after fellow for years to come.

The first Connolly Family Fellow is Dr. Sanyu Janardan.

Dr. Janardan earned her MD at the University of Minnesota and completed her pediatrics residency at Yale. Dr. Janardan’s fellowship research will focus on studying barriers to exercise in childhood cancer survivors and she will be completing her Masters of Science in Clinical Research at Emory University during her fellowship.

“Because of your generosity, I will be able to dedicate my time and energy to my research during my second and third years of my fellowship,” Dr. Janardan said. “My goal is to study the late effects of treatment in childhood cancer survivors. This is a topic I’ve been interested in since medical school and I’m excited to be able to further explore this area during my research time in order to help make meaningful contributions to our patients and improve their long-term outcomes.”

CURE is grateful to Larry Connolly for his years of dedication to CURE and to him and the Connolly family for entrusting us with this gift that will impact children fighting cancer for years to come.

 

 

“It is very gratifying to observe from afar how CURE continues to evolve and is making such an impact on so many lives.”

-Larry Connolly

 

My Golden Boy

By Kay Buelvas

 

Gold: (adjective) bright, metallic; exceptionally valuable; having glowing vitality; radiant; full of happiness, prosperity, or vigor; highly talented and favored; destined for success

Once upon a time I had a Golden Boy. He was everything listed above, but most of all he was our precious treasure. Then cancer showed its repulsive face on June 14, 2006.

Our son, Raul, was diagnosed with metastatic osteosarcoma two weeks before his 13th birthday. This was the day that everything changed. Instead of carefree summer days at the pool, we were thrust into a dark world of chemotherapy, surgeries, blood counts, and transfusions. Life continued for others – birthday parties, movies, ice cream, sports. Our life became blurred by hours at clinics, days, and nights in the hospital, weight loss, and lack of sleep. I cried silent tears as I secretly collected the clumps of hair on his pillow, stuffing the cherished locks into plastic bags. Every holiday, every photo, my mind faced the possibility that this is it: the last family gathering, the last Christmas. Each milestone that was reached felt like I was laughing in cancer’s face, that we were winning. I pretended that life was fine and normal, when every cell within me was screaming in pain.

It hurts to remember, but I have to act. What can I do to make life better for the next child and his or her family? How can you help make a difference in the suffering of a child?

Childhood cancer is on the rise. It is the number 1 cause of death by disease in children. Children are the most valuable thing we have. They are more precious than gold.

September is Childhood Cancer Awareness Month. CURE Childhood Cancer is a Georgia-based organization that donates more than $4.3 million annually to research projects at leading U.S. institutions with the goal of improving pediatric cancer survival statistics, while seeking less toxic treatment methods. CURE also provides emergency assistance to ease financial burdens during treatment, brings meals to patients and caregivers, holds outreach programs, and offers counseling and bereavement care. 87% of all donations go to research and patient family support. CURE is making a difference for children with cancer.

CURE’s September Gold Mailbox Campaign is in full swing. I will proudly display a bow on my mailbox in memory of my golden boy.

 

 

 

Charlie’s Fight Club

It’s not unusual for Charlie to have bruises on his legs. After all, he’s a super-active nine-year-old who loves hockey, baseball, and pretty much every other sport. But besides the bruising, his mother, Rachel, also noticed small red spots on his skin that caused her concern.

“We have friends whose son is fighting leukemia,” explained Charlie’s father, Joe. “So we had some knowledge of their journey and all the individual symptoms taken together seemed very similar.”

In late January the symptoms continued to mount. Charlie came home from school sick and lethargic, so his parents took him to their pediatrician who did a blood test. She called the next day and told them to go to the emergency room right away. She also told them that Charlie had leukemia.

When they arrived, the doctor told them that he had never seen a child’s white blood cell count as high as Charlie’s. The hospital had to move a special machine from the adult side of the hospital to do a type of dialysis that would filter out his white blood cells. Their fear was that Charlie’s elevated blood levels could damage his kidneys if they started chemotherapy right away.

Charlie reached remission at 30 days and that was a huge milestone. But it hasn’t been smooth sailing. The first phase of treatment involved heavy steroids. While he didn’t have an anger response, Charlie did have a strange reaction when a new chemotherapy was added.

“When he got what is called PEG chemo, he began to talk nonsense.” Joe said. “He was disoriented and forgot where he was and who he was. A neurologist evaluated him and said his brain was fine, but he was suffering from steroid-induced psychosis brought on by the steroids in combination with the new chemo.”

This condition lasted for two weeks. Charlie would go from being fine one minute to babbling the next. His doctor stopped the steroids one day early and the condition stopped almost immediately. Charlie is doing well now. He is halfway through his third phase of treatment and they hope to reach the less-intensive maintenance phase sometime in October.

Recently, Charlie’s Aunt found out about CURE’s Virtual Lauren’s Run and his family created a team called Charlie’s Fight Club.

“We appreciate organizations like CURE who are fighting childhood cancer,” said Joe. “This was a great way for us to raise awareness and some money to help. We’re in the middle of Charlie’s fight, but we feel compelled to do our part. We had a great time participating the Lauren’s Run!  Between our family, we completed two 5K runs, several neighborhood bike rides/scooter rides, sidewalk chalk, many acts of kindness and great family picnic with cousins to top it off.  We will definitely be doing it again next year!”

 

 

 

 

The Tallest Kid in Chemo

Jeff Bryant is used to looking down on people. At 6’8” tall, he sees the world from a different perspective than most. After his high school team won two championship rings in a row, Jeff was poised to continue his basketball career at the collegiate level until a mass on his leg derailed his plans.

“My father noticed that my left thigh was larger than my right,” Jeff said. “And as I lifted weights, my bigger leg was weaker than my smaller one, which made no sense.”

Jeff’s parents took him for an X-ray and the results showed a large tumor covering his femur. A biopsy would soon reveal the tumor to be osteosarcoma – a rare type of bone cancer in which cancerous cells produce irregular bone. Jeff’s team of doctors developed a nine-month treatment plan that included several rounds of chemotherapy and an intense limb salvage surgery. But first, he had to graduate high school.

“I never would have imagined high school would end with me as a cancer patient,” Jeff recalled. “I attended the ceremony in a wheelchair because it took place on our football field, which consisted of very bumpy grass. The entire crowd stood and cheered as I accepted my diploma. Although my time there did not end the best way possible, I will always remember all of the amazing things that came out of my high school experience.”

Jeff started chemotherapy with a positive attitude and his community behind him. The first cycle lasted ten weeks and then it was time for surgery where his femur and knee were replaced with a rod and artificial knee. His chemo continued during the recovery and two more surgeries were required because the cancer had metastasized to his lungs. But on St. Patrick’s Day of 2015, Jeff was declared cancer-free.

“Words could not describe how it felt to finally be done with cancer treatment,” Jeff said. “It was time to move forward with life!”

But Jeff’s victory came with a price. His new leg would never be able to tolerate the impact of a rigorous sport and he knew that his basketball career was over. So Jeff left for Flagler College to pursue his other passion, history. But while he was finished with cancer, it wasn’t quite finished with him. Jeff began experiencing pain in his reconstructed leg and had several setbacks that required several surgeries to correct issues with his leg. Undeterred, he persevered through the pain, surgeries, and rehab to get his degree in the spring of 2020 and will soon pursue a master’s in museum studies at George Washington University. While there, he hopes to fulfill his lifelong dream of working in a history museum.

Jeff has also created an online presence with the goal of building a community of bone cancer fighters and survivors. Beat Bone Cancer aims to raise awareness of the disease and encourage those who are in the middle of their fight.

“I feel that by offering guidance to those going through what I went through,” Jeff said. “They can feel more hopeful that they too can beat bone cancer.”

Why the Thompsons Run

Why are you in the race? That’s the question we’re asking registrants for this year’s Virtual Lauren’s Run & CURE Picnic Weekend Challenge. When they downloaded their bib, the Thompson family didn’t hesitate to share their answer. They have organized a team called Hayley’s Heroes for the last 15 years and they are getting out the pink are doing it again… virtually! Here’s why:

Dayna (Hayley’s mother)

Lauren’s Run has been a tradition in our family for the last 15 years now and it is truly one of our favorite days of the year. We’re able to remember our first-born daughter, Hayley, in a way that is light-hearted and fun while raising money for a disease that is anything but. Our friends and family- both those who knew Hayley personally and those who embraced her story years later- get to join us, and our other children witness firsthand the difference Hayley’s life continues to make. The whole day is full of positive, uplifting energy from the race emcees, to friends cheering friends across the finish line, to the volunteers working the carnival game booths. There’s no stress, pressure to look good, and not even a need to spend a lot of money to participate. It’s just friends and family coming together year after year to make a difference in the fight on childhood cancer and to remember a chubby-cheeked little girl who loved pink, painting, Play Doh, and puppy dogs.

Riley (Hayley’s Sister, age 11)

I’ve been going to Lauren’s run as long as I can remember and love it. When I was little, I didn’t understand how participating in a run could help other kids with cancer, but now I know that the money from every registration and donation goes to help those kids, which is really cool. It’s such a fun day, and we all wear pink for my sister – it was her favorite color! I love trying to beat my dad in the 5K, but the picnic with games afterwards is my favorite part!

Alan (Hayley’s father)

From the moment Hayley was diagnosed with cancer an entire community was hit hard. Our friends and colleagues and neighbors and family traveled the journey with us. Once a year, on Lauren’s Run, our community gathers again. We laugh and smile…run a little, walk a lot…we watch our growing children reconnect and make new friends. We eat fried chicken and catch up on life. And as we remember our precious daughter, we reinforce the bonds of a community we never want to forget. It’s a community that has amazingly continued to grow over the years. It now includes new friends who may have never known our daughter, but who have embraced her story and the fight on childhood cancer as if they did. Old, new, young, old from all areas of our life – one community for one very important cause.

So why will you run?

Wherever you are, join us June 12-14 for the Virtual Weekend Challenge when your family can have a blast and win prizes by competing in challenges of fitness, family fun, and fundraising. Visit laurensrun.com to see all the fun and register.

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