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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.

When Emmy Rings the Bell

A high fever drove Emmy Waymire’s parents to take their 5-month-old to their pediatrician. After trying to figure out the source of the problem, a sonogram later revealed that one of her kidneys was enlarged. It was then that they learned a very long new word: nephroblastomatosis, or the presence of excess tissue within the kidney. This rare condition is often benign and not worrisome. But in some children, the condition is a pre-cursor to a Wilm’s tumor, which must be treated.

“We lived in Kansas at the time and the doctor told us there were only 19 other cases of this,” said Emmy’s father, Kevin. “She did a year of chemo and it shrunk by 50% by the time we moved to Florida. When we arrived, the doctors there immediately diagnosed her with a Wilm’s tumor.”

Their new doctor recommended removal of the kidney. That seemed very drastic to her parents who were originally advised removal could later cause the tumor to spread to her healthy kidney, so they sought a second opinion from an expert in Boston. What they learned there validated their decision to wait, but their new team felt removing the kidney had become the right course of treatment. The surgery took place in November of 2019. After she recovered, they came home and began her chemotherapy in Atlanta.

“Our doctors in Boston originally wanted us to stay there to do chemo,” Kevin said. “But logistically that would have been very hard for us to travel and stay so far away from home. It also would have been quite expensive!”

They’ve been coming to Children’s Healthcare of Atlanta ever since. She had weekly chemo infusions until mid-February. After that they made the trip to Atlanta once every three weeks. Her last chemotherapy treatment is scheduled for mid-May and they couldn’t be more excited!

Emmy will be a spunky three-year-old in July. Her father describes her as a girly-girl who likes tutus and frilly bows. But she also likes playing in the sand at the beach, building with blocks, and pestering her 4-year-old brother. And while they are almost finished with treatment, the pandemic has affected them in a few ways.

“For the most part, it hasn’t been that much of a change for us. We were already isolating ourselves and living in a bubble,” Kevin explained. “Our issues with the pandemic have had more to do with our jobs than Emmy’s health.”

Emmy’s mother, Ashleigh, is a nurse at an OBGYN clinic. She hasn’t worked very much this year because of Emmy’s treatment, but she recently started back. Kevin is a marriage and family therapist and registered play therapist. He recently had to close his practice because so many adults are not yet comfortable with telehealth.

“The hospital stays also became very different for us,” Kevin said. “Emmy has to be admitted and we are used to switching out to give each other a break while she’s there. But now only one parent can be with the child for the duration of their stay. I understand why. But it’s hard not being able to be with them.”

They also found out that she will not be able to have a traditional bell-ringing ceremony to mark the end of treatment. While they are disappointed, the Waymire’s plan to give Emmy a special celebration when they can. They’ll likely do it at home – which seems appropriate during this time of quarantine. But hopefully some of the restrictions will be over and they will be able to invite friends and family to join them to cheer Emmy on when she rings the bell!

 

A Mother’s Heart

Anna Thompson was scrolling through Facebook one evening when a particular post made her pause. The post showed the picture of a young man named James who was in dire need of a liver transplant. The situation struck a chord with Anna.

“When I read James’ mother’s words, my heart went out to her because I could feel her desperation,” Anna recalled. “It mentioned that his sister had tried to donate but was unable. The next thing I saw was that our blood types matched.”

At this point, most of us would feel great sympathy for the situation and keep scrolling. But not Anna. Her mother’s heart wouldn’t let her because she has felt that same desperation.

Anna’s son, Lake

Anna’s oldest son, Lake, was non-stop motion and best described as “all boy”. Whether shooting basketball, wrestling his little brother, or playing with friends, he was constantly moving until he suddenly began to slow down and complain of exhaustion. Since that was so abnormal, Anna took him to his pediatrician who quickly sent them to the hospital where he was diagnosed with acute myeloid leukemia (AML). Lake reached remission quickly but relapsed a year later. After a few rounds of chemotherapy, he needed a bone marrow transplant, which proved to be a problem.

“When Lake was ready for his transplant, we couldn’t find a match,” Anna said. “His doctors were able to use donated cord blood, but we knew that wasn’t ideal. Still, it worked for a time.”

Lake surged for a year. He got to go to camp, enjoy a Disney cruise, play hard, and meet his new little sister. He even signed a one-day contract with the Atlanta Hawks. But all the while, his cancer had regrouped and became too much for his tired body. Lake passed away on May 1, 2015.

“We miss him like crazy,” Anna said. “We take comfort in knowing that he is now cancer-free and perfect once again. But when I read that post, it made me think of my boy. I will always wonder whether Lake would still be here today if we had found a perfect match for him.”

Anna didn’t hesitate. She reached out to James’ transplant team to start the screening process. Testing to ensure a correct match can take several months, but Anna and James found out she was a perfect match in February. Overjoyed, James’ mother, Janice, contacted Anna to thank her and they made plans to meet just before the surgery.

“His mother sent me their address and it turns out they live less than a mile away,” Anna shared. “They could have lived anywhere, and we were neighbors the whole time. Our families spent three hours together that Sunday and truly enjoyed the afternoon.”

Anna and James before surgery.

James is a 22-year-old engineering student at Mercer who has a rare auto-immune disorder that attacked his liver. Like Lake’s cancer, this particular disorder is usually only found in people much older. He knew he would need a liver someday, but his quality of life was severely declining.

The transplant surgery took place on Valentine’s Day and was successful. Although recovery was difficult for both of them, Anna has no regrets about her decision.

“Surgery and recovery brought so much perspective to me,” Anna said. “When I started to hurt and feel a little sorry for myself, I realized that this is how Lake felt for more than three years and he still functioned and had a positive attitude. One of the biggest things I learned from Lake is that our life does not belong to us. It is meant to be shared to help others, inspire others, and love others. Lake did those things, so I’m doing my best to be just like him. I pray that this will inspire people to think of others more than themselves.”

And how does Janice feel about Anna?

“Anna is an angel,” Janice said. “It is overwhelming to receive such a gift – literally my child’s life. A lot of people offered sympathy and help, and many of our friends and family tested to see if they could donate. But Anna was the only one who said she could feel my desperation… because she had been there. While spending time with Anna and her family, I heard many heartfelt stories of Lake’s generous heart and ability to shine his inner light on others. Honestly, the Thompsons felt like family from that very first day we met, and I wish we had gotten the opportunity to meet Lake.”

Two days after surgery, James came to Anna’s room and he looked great. The jaundice that had been so noticeable just days before was gone. Anna and James have become friends with a special bond. She describes him as brilliant and very sweet, and she can’t wait to see what his future holds.

A future made possible by her mother’s heart.

 

 

**  Anna and her family fight cancer in Lake’s memory through a named fund called United for a CURE. Together with two other families, they work tirelessly to fund research that will end pediatric AML.

 

There’s No Replacing Remi

Remi is a tough little four-year-old who rarely sat still until a cancer diagnosis slowed her down. Her entire family had gotten bronchitis and her mother, Ashley, first attributed Remi’s exhaustion to the virus. But when she saw that Remi had bruises from head to toe, she knew something else was wrong.

“She and her brother roughhouse, so I thought maybe it was from playing too hard.” Ashley said. “But she was visiting a friend who called me and said that Remi’s lips were blue and her color was bad, so I took her to the emergency room.”

It was there that she discovered that bronchitis was the least of Remi’s issues. A blood test revealed her white blood cell count to be 144,000 where a healthy child’s count would be around 10,000. A doctor told Ashley that Remi had leukemia. Things unraveled quickly from there.

The day Remi was to come home, she screamed during a diaper change and her doctors found she had a pseudomonas infection. This prompted a surgery and a temporary ostomy to allow her body to pass waste. She needed transfusions to recover and since she had not had enough chemo to fight the blood cancer, her body started attacking itself. Remi’s organs started to shut down and she was put on a ventilator to help her breath.

“It was awful seeing her that way,” Ashley recalled. “She had to be taken off chemo to let her body recover. But amazingly, we found out she was in remission while she was still unconscious. She is my miracle baby.”

Ashley’s words proved true because to the surprise of her medical team, Remi was up and walking three days after she woke up! When she was well enough, she restarted her regular chemotherapy and was able to go home. She has had further complications, but when she gets knocked down, she seems to recover quickly.

Remi has a year left of her treatment. Her mom describes her as funky, sassy, and the self-proclaimed boss of the house. She loves taking care of her brother and doing anything outside. Just before the pandemic swept through, Remi had a tough time. She tested negative for COVID-19 but did have to contend with the flu and bacterial pneumonia. During this time her mother has had to make difficult choices.

As the manager of a local drug store, Ashley’s job is considered essential. Additionally, the county in which she lives has barely been touched. So she has continued to work and balance Remi’s treatment and home life.

 

“I am so fortunate that my parents can keep Remi and her brother fulltime. I don’t know what I’d do without them,” Ashley said. “After work, I’ll come home to shower and change, and then go have dinner at their house and visit until bedtime. I also work longer shifts so I can take three consecutive days off and spend more time with them.”

If the pandemic worsens, Ashley will have to make a choice to continue that pattern or take a leave of absence.

“It would hurt financially, but it isn’t really a decision,” Ashley said. “I’ll take a leave of absence if it gets bad in Jasper County. I can always find another job and replace my stuff. I can’t replace Remi.”

Cancer Made a Better Me

When Schuylar was a junior in high school, she had a health scare that threatened to derail her future. But this recent college graduate wouldn’t let anything stand in her way, including a fight with cancer.

One night, Schuylar turned her head and her mother noticed a bump on her neck. Since it didn’t hurt, they didn’t think much of it until later in the year she began to feel sluggish and fatigued. Her doctor thought it might be her wisdom teeth coming in, but her mother felt like something else was to blame and pushed for more tests. She was right. A biopsy revealed that Schuylar had Hodgkin’s lymphoma, and the bump on her neck was a swollen lymph node.

“I remember the hospital elevator doors opened and I saw the sign that said, Aflac Cancer and Blood Disorder Center,” Schuylar recalled. “I turned to my mom and said, ‘why are we here?’ I cried when they told me.”

Schuylar began the standard protocol which consisted of four rounds of chemotherapy and lasted over three months. She planned to shave her head, but when she went to the beautician, all of her hair fell out in the sink.

“It didn’t really settle in that I had cancer until I lost my hair,” she said. “I was just going through the motions until I was bald. I know three months of treatment isn’t a long time, but it felt like forever to me. I was assigned a homebound teacher for school and I really pushed myself too hard because I didn’t want to feel weak or incapable.”

Schuylar had bouts with nausea and bone pain during her treatment. She also got to go to Camp Sunshine, which was a wonderful break where she could be with people who understood what was going on with her.

Her treatment ended early in her senior year and her hair started to come back. Because she missed so many days, her grades suffered. But everyone at Luella High in Locust Grove worked with her and she got back on track. Schuylar was adamant about graduating with her class in 2014 – and she did!

“I had some tough moments after treatment was over,” she said. “My school’s principal, Harry Kustik, was a great help to me and my family during the whole thing. He asked me to come and share my story with his soccer team and it really helped me to talk to those girls about overcoming cancer.”

After high school, Schuylar began college at Georgia Southern University, but returned home too attend college in the local area. While at home, Schuylar and her mother connected with newly diagnosed patients as a way to encourage them. She has continued to express a desire to share her story and serve as a visual of hope for families in the fight against cancer.

Her cancer experience pushed her to work toward a degree in healthcare. She began in nursing, but decided that wasn’t the path for her and attained a Bachelor of Health Science from Clayton State University. Two internships and several volunteer hours helped her to decide she would like to work at a place like the CDC where she can review and implement public health programs.

Schuylar is nearly seven years cancer-free and knows that while it was difficult, her cancer journey also helped her in many ways.

“My cancer experience made me stronger and set my focus,” she said. “I want to encourage people who are going through treatment to not let a cancer diagnosis hold them back. On the other hand, sitting down to take a breath doesn’t make you weak. I should have rested more. I got caught up in wanting to be the old me all the time. But after it was over, I came out of it as a better me!”

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