Uncategorized

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.”

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!

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.

 

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

 

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!”