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Building a legacy is a painstaking process that takes dedication, consistency, and time to accomplish. If a person meets an untimely death, that process is interrupted… or in the case of Sam Robb, it is picked up and carried by his family. By creating The Sam Robb Fund at CURE, the Robb family has ensured that Sam’s spirit and determination live on. Thanks to their tireless efforts, the Sam Robb Fund recently surpassed $1 million raised to fight childhood cancer in Sam’s memory. Although they have done the heavy lifting, the family credits many people for what has been accomplished.

“We are blessed with remarkable friends who consistently turn out and support the events enabling us to keep Sam’s spirit alive… and never forgotten,” said Sam’s father (also named Sam.) “We hope our efforts make a difference with future doctors and family support dealing with the impacts of childhood cancer.”

It all started with Sam.

Sam was larger than life. As a sophomore in high school, he stood six feet five inches and weighed two hundred twenty-five pounds. He was a gifted athlete with a gregarious personality. When he was diagnosed with osteosarcoma, Sam tackled treatment just like he would an opponent on the field. Unfortunately, four years after treatment ended, he noticed that he got winded during exercise. Doctors discovered that Sam had relapsed with a tumor on his lung. Never one to give up, Sam created the mantra, “Fightin’ till the last breath!”

A number of nationally renowned doctors felt the surgery to remove the tumor was life-threatening. Refusing to live in fear, Sam sought out several opinions until he found a brave surgeon who agreed to go for the “long ball” and remove the tumor and a lung. Sam died during surgery.

Soon after his death, his family formed The Sam Robb Fund in an effort to cement his legacy and continue his tenacious fight against childhood cancer. Their original desire was two-fold: to fund a future oncologist’s fellowship training at the Emory School of Medicine (now named the Sam Robb Fellow), and to support CURE’s Open Arms Meal Program. In 2018, Sam’s family identified an area of great need and decided to move part of their fundraising efforts toward healing the emotional and psychosocial needs of patients and families in and after treatment through CURE’s Counseling Program.

They continue to be committed to training fellows. In fact, 2019 saw the naming of the sixth Sam Robb Fellow, Dr. Juhi Jain. Former Sam Robb Fellows work in pediatric oncology in Dallas, Pittsburgh, Colorado,and Florida, as well as Atlanta. The funding provided by the Sam Robb Fund allows doctors working on their specialty to focus on their medical training without the burden of raising money.

The Sam Robb Fund raises money through various annual events – events that Sam would have enjoyed. Getting past the $1 million milestone is a testimony to the commitment and dedication of his family, friends, community, and volunteers who have poured their time and talent into building his legacy. And Sam’s legacy will continue to have an impact on children fighting cancer for a long time to come.

“13 years is a long time, and in today’s fast-paced world, it is easy for people to forget,” said Annamarie Robb, Sam’s mother. “Although we as a family don’t… and never will.”

by Carleen Newsome, LPC, CPCS, ACS

Emotions are designed to inform us about what is happening in the world around us. However, in the midst of our grief, emotions can be so overwhelming that we try to run from them. Instead of recognizing our emotions, we adopt ways to cope which can prolong our suffering.
Hurt doesn’t go away simply because we don’t acknowledge it. In fact, if left unchecked, our emotions can fester, grow, and lead to behaviors that are not in line with who we want to be. These behaviors are ineffective and usually end up sabotaging many areas of our life, ruining relationships, and harming careers.

Resorting to ineffective strategies of dealing with emotions is called “offloading.” Below are six common strategies for offloading hurt:

Chandeliering: This strategy is when we try to stuff the hurt so far down that we believe we have escaped the pain. What actually ends up happening is that we have tender trigger points. When these trigger points are touched we react in an out of proportion way. A small thing like spilling our coffee may cause us to lose control and cry for hours.

Bouncing Hurt: Bouncing hurt is when emotions become unbearable and we place that hurt on someone or something else. For example, we may be having a hard day fighting off grief and instead of acknowledging it, we end up yelling at our spouse for not taking out the trash or grounding our kids for not finishing their dinner.

Numbing: Numbing is when we take the edge off pain with whatever we can find that will bring the quickest relief. It may be food, alcohol, drugs, TV, money, or caretaking. The problem is that we cannot selectively numb emotions. If we numb one, we numb them all. We may numb the grief, but we also numb the joy and happiness.

Stockpiling: Stockpiling begins like chandeliering where we pack the hurt away. We become so good at packing down the pain that we begin to amass more and more hurt. Without another outlet for our emotions, our body takes the brunt and may begin to develop many different health problems.

High-Centered: This strategy makes us feel stuck, powerless, and indecisive. We are afraid to allow emotion because we feel we may experience a floodgate of emotion and lose control. We are afraid that we may cry at work, in the grocery store, at a graduation, or around friends or family. We want to feel but we are afraid to allow emotions.

The Umbridge: We attempt to deal with hurt and grief by pretending. We become overly accommodating and people-pleasing. It feels and looks like a mask but is inconsistent with what we feel inside. It harms us and drives a wedge between us and others because it hides our true self within relationships.

Most employ these strategies at various times to survive and cope through difficult periods. But if you still find yourself using these strategies six months to a year after your loss or traumatic experience, it may be time to talk to a counselor so you can learn the steps to release you from added suffering.

The question, “what can I do?” often plagues us when a friend or family member is hurting. We want to help, but the problem sometimes seems too overwhelming. Unable to figure out how to help, many well-meaning people often do nothing. But not Tom Jones. He figured out what he could do when cancer struck someone he cared about.

The Austin Taylor Challenge is an ultra-marathon benefiting CURE which was founded in memory of a little boy, Austin Taylor, who passed away in 2014 after a courageous battle with neuroblastoma. Tom participated in the 2017 Austin Taylor Challenge and reached out following the race.

He wrote: I completed the 50k yesterday to honor a 12-year-old boy named Collin who had his foot amputated as a result of a rare form of cancer called epithelioid sarcoma. He has been fitted with a prosthetic and is doing well and is quite active. He has been through chemo and has lost all his hair but has a very positive attitude. I hope to meet him for the first time soon and present him with the finishers medal and hat and shirt from Austin’s race.

I was very moved by Austin’s story and understand the accomplishment of fellow-ultramarathoner, Joe Urban, in completing the Leadville 100 to honor Austin. I find it unbelievable that he could finish that race! I am sure Austin had inspired him so he was up to the impossible task! What an incredible young man! I know he made you very proud.

Moved by his note, we caught up with Tom and found him more unassuming and humble than would befit his accomplishments. It all started in 2009 when his pastor was facing liver cancer for the third time. They had run together in several local races, and Tom got the idea to run the Augusta half-marathon in honor of his pastor. He didn’t know how much it would mean until he gave the medal, race t-shirt, and a note of encouragement to his friend.

“His reaction was more than what we had expected,” Tom said.

From that experience, a ministry was born. Over time, Tom’s distances increased from half-marathons to full marathons, and then eventually he began running ultras. He runs about forty miles in a typical week unless he is building up to a long race. While he is training, he focuses on the beauty of nature and the one for whom he is running.

“Running to me is a celebration of life, and now a way to honor others,” explained Tom. “When I find someone who is hurting or struggling with a medical issue, my goal is to lift them up and also encourage their families during whatever journey they are on.”

Typically, Tom selects someone from the prayer list of his church in Evan, GA as his inspiration. But this year, a co-worker who knows Collin’s family asked if he would consider running for the boy. Tom was quick to agree. He had his own brush with childhood cancer. Tom and his wife, Karen, have six daughters. His now 18-year-old old daughter, Hannah, had her thyroid removed because it was cancerous.

“We have experienced the dreaded diagnosis of cancer in a child,” he relayed. “That makes me thankful for The Austin Taylor Challenge – a great race for a great cause. I’m also thankful for CURE Childhood Cancer and their efforts to rid so many young people of this horrible disease!”

Tom is an inspiration to all of us who struggle to put action to our compassion. He is making a huge difference in the lives of others by doing something he loves.

“If I can put a smile on someone’s face just because I ran a race for them, then it is totally worth the effort.”

It is quite an honor for a student to be accepted into the Governor’s Honors Program (or GHP) in Georgia. The GHP is a four-week, summer educational program designed for intellectually gifted and artistically talented high school students. Rising juniors and seniors are nominated by their teachers and are screened through a rigorous round of essays, auditions, and interviews. The overall acceptance rate of the program is around 3%.

Those who know Loren Bass-Sanford and have heard her play probably were not surprised when they learned of her acceptance into the GHP as a jazz pianist. What might surprise them are the obstacles she overcame to get to there.

A persistent cough and what seemed to be regular cold symptoms escalated until she stopped walking and talking. Just before her third birthday, she became so weak that she could only lay in bed staring blankly at the ceiling. Her mother’s intuition drove them to the hospital where Loren needed a blood transfusion to make it through the night and was soon diagnosed with leukemia.

“I have some vivid memories of life during treatment,” Loren said. “Once when I was in pre-k, one of my little friends asked me about the bump in my chest. I tried to explain about the port, but I’m sure she didn’t understand.”

The standard treatment for pediatric leukemia lasts between two and three years for most children. Loren was cancer-free and considered a survivor at five. When she was ten, a long, six-hour appointment marked the end of her five-year remission period. She will continue to go to survivor’s visits every year until she reaches the age of 21.

One of the chemotherapies administered to Loren during her treatment was vincristine, which can cause numbness, tingling, and fine motor skill issues in the hands and feet. Sometimes, these side effects occur during treatment and sometimes they appear long treatment is complete. When Loren began experiencing such issues in her hands, she turned to the piano as a form of therapy. Her aptitude quickly revealed itself and the level at which she can now play is truly astonishing when the side effects she deals with are taken into consideration!

Loren is often complimented on her talent. Humbly she replied, “I just love playing piano. It was an honor to be at GHP; I learned so much.”

This rising senior at Lovett School doesn’t take her health for granted. She is on the Student Service Board and has joined the fight against childhood cancer. Last year, she led an effort for the Leukemia & Lymphoma Society’s Students of the Year project. This year, she is leading Lovett’s Gold Out game during September’s Childhood Cancer Awareness Month.

“Lovett has a long history of partnering with CURE in fight against childhood cancer and it is incredibly special to have a childhood cancer survivor lead the charge this year,” said CURE’s Executive Director, Kristin Connor.

In addition to the Lovett School, many high schools are holding Gold Out games in September.  If you’d like to host a gold out game at your school, visit www.gogold4CURE.com where you can download everything you need to plan your event.  If you have any questions, please contact Mark Myers at [email protected].

When CURE’s good friend and long-time partner, the St. Regis Atlanta, shared with us a concept for a new culinary event in Atlanta called Out of the Kitchen, we were immediately excited. The enthusiasm of General Manager, Guntram Merl, who had started Out of the Kitchen charity events at other properties he has managed, was contagious.

“Honestly, the over-the-top, elaborate idea was unlike anything offered in Atlanta,” recalled Lauren Sims, CURE’s Director of Development. “I thought Guntram had an incredible concept, and we were thrilled to be chosen as the charity partner. During the planning of the event ,we watched in amazement as the best chefs in the city jumped right in.”

The inaugural event took place on November 16, 2017. The beautiful St. Regis ballroom was transformed into sixteen intimate tables with seats surrounding a food preparation area. Each table had its own chef who created a unique menu just for the event. During the night, these chefs prepared food in front of the guests, talked and laughed with them, explained techniques, and shared culinary secrets. To walk the floor was to stroll from country to country as the smells of cuisine from Italy, France, Greece, Thailand, and many others wafted in the aisles.

And if the smells and tastes weren’t enough, after the dinner a spontaneous auction erupted. Local foodie legend, Steak Shapiro served as the master of ceremonies as the chefs offered extraordinary, personal culinary experiences for the top bidders. The room roared with laughter when Chef Kevin Rathbun took over the host duties and handled the microphone nearly as well as he handles a knife. Every guest raved about the evening, and CURE was thrilled to be a part of it. All told, the night raised $225,000 and left our hearts as full as our stomachs.

“The incredible generosity of time and passion from our Atlanta Chef’s community makes an event like Out of the Kitchen possible,” said Guntram. “Partner this with the truly amazing organization that CURE is… what a ‘recipe’ for a truly remarkable evening. The St Regis Atlanta is so grateful for being able to bring this to our community and we hope that this will become the marque culinary event for years to come.”

Thank you to the St. Regis Atlanta, Steak Shapiro, and all of the incredible chefs who donated their time and talent to benefit our mission to find a cure for childhood cancer. Out of the Kitchen 2018 will take place November 15. After the success of the inaugural event, we know it won’t take four weeks to sell out this time.

It is important that childhood cancer survivors focus on staying healthy after cancer. Here are some helpful tips to consider:

1. Make your appointment to visit a cancer survivor clinic. Survivor visits begin when you are two years past the completion of cancer treatments. If you have reached this milestone, talk to your oncologist about a referral to your hospital’s survivor program. In the cancer survivor clinic, you will be educated about your risk for any late effects which might be side effects from your cancer treatment. You will also be checked for those side effects through labs or screening tests. You may see an oncologist, an endocrinologist, a pediatric psychologist, and a social worker. The number of providers you see is based on your health needs. If you already attend survivor clinic, be sure to make your appointment for 2018.
2.  Find and review your survivor healthcare plan. If you have already been to survivor clinic, review the survivor healthcare plan you received in clinic. The survivor healthcare plan will outline the cancer treatments you received, the late affects you are at risk to develop, and how the survivor team plans to check you for any late effects. If you have any questions about what you find in your survivor healthcare plan, jot them down and bring them to clinic with you. If you have been treated in Atlanta and can’t find your survivor healthcare plan, check Cancer Survivor Link online! When you register for Survivor Link at cancersurvivorlink.org, each year when you come to the survivor clinic, the team will upload the newest version of your survivor healthcare plan to your electronic record.
3. Learn a new self-management health skill. If you are an adolescent or young adult, work on a new survivor skill. A parent of a younger survivor could help him or her choose and develop a skill. This could be the survivor calling to make the clinic appointment, making the co-pay at the time of the appointment, or downloading the survivor healthcare plan from SurvivorLink. You may choose to know the names and doses of your medications or call in the refills this year. There are many skills that need to be learned, but if you learn them one at a time you will have them all down in no time.
4. Be sure to keep seeing your primary care provider for normal child and adolescent medical care and visit your dentist twice a year. Sometimes there are so many specialty doctor’s visits, it is hard to fit in the “normal” visits, but they are important too. You want to keep your primary care physician up-to-date on your health so he or she can take care of your routine medical needs. Also, don’t forget to get your teeth cleaned and eyes checked.

There are several skills a young survivor needs to learn to maintain health. By working to master one or more of these skills in the coming year, you will be setting yourself on the right path to a healthy life after cancer.

“Nothing’s been normal with Evan,” his father, Kraig, said. “Not in his whole life.”

Evan’s whole life consists of almost three years, and his abnormal childhood began in the womb. Kraig and his wife, Brittany, live in Leary, a tiny town in the southwest corner of Georgia. Doctors discovered a heart defect during a routine ultrasound while Brittany was pregnant. Knowing he would need open-heart surgery at birth, doctors induced labor as early as was safe.

Kraig said it was very stressful knowing their baby was going to need open-heart surgery as soon as he was born. His mind drifted toward the worst possible outcomes, and he worried about both his son and his wife. The surgery was a success, but complications forced more heart procedures over the next few months. Doctors also found a problem called hydronephrosis that resulted in an oversized kidney, possibly due to blockage. That became the next issue facing Evan’s medical team.

To fight these problems, the family had to make many trips to Atlanta where specialists were prepared to help. Depending on the traffic, that trip took roughly four hours each way. And the surgeries weren’t the only thing that forced them on the road. Because of his frail condition, normal childhood illnesses were harder on Evan than the average child.

Still, they rode out the surgeries and illness through his first year of life and felt like they were on the road to recovery. At sixteen months old, Evan was cleared by cardiologists and shortly thereafter had a scan to make sure the hydronephrosis was gone. The scan revealed a mass on his kidney. After surgery to remove it, Evan’s parents were introduced to a new team of doctors: pediatric oncologists. The tumor was neuroblastoma – a childhood cancer that can form anywhere in the nervous system.

The successful tumor removal put Evan into remission, but he quickly relapsed. Since then, he has had multiple rounds of chemotherapy, two bone marrow transplants, and antibody treatment. All of this treatment occurred in Atlanta. In fact, Kraig estimates the family has driven that well-worn path over one hundred times in the last three years. How has Evan taken it?

“Right now, you wouldn’t know he has health problems if you didn’t see the scars,” Kraig shared. “He loves to be outside and sit in my lap for a ride around the fields.”

Of course, it would be hard to miss his scars. By Kraig’s count, Evan has around ten of them on his tiny body: two from open-heart surgeries, two from the tumor removal, and six from chest tubes he has had over the years. He also has a gastric feeding tube that has been crucial for nourishment.

Evan is currently receiving antibody treatment, a type of immunotherapy where agents designed to attack cancer cells are introduced into the body. This targeted therapy seeks to kill the cancer without damaging healthy cells. CURE has invested heavily in such innovative research with the hopes of speeding it to the bedside of children who need it – children like Evan.

During Evan’s battles, Kraig has felt overwhelming support from their community and his employer, the Coastal Plywood Company. But he is quick to point out the most important member of his team.

“If it wasn’t for Brittany, I don’t know where we would be,” he said. “She keeps up with all of Evan’s appointments and medications and makes sure he gets everything he needs. We’d be lost without her.”

Doctor’s estimate Evan has six months left in treatment before he can put cancer in the rear-view mirror. Kraig said he will keep driving as long as it takes to give Evan a normal life.

“I don’t want much,” he explained. “I just want us to be a family again.”