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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!”

 

 

 

 

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.”

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!

 

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 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.”

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.

 

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.”