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Elena Tate first learned about childhood cancer in 2004 when her younger sister, Olivia, was diagnosed with a brain tumor. The two girls love each other and share a lot of things. But Elena had no way of knowing that just a few years later, her back and leg pain would lead to a cancer diagnosis of her own. You heard that right – both sisters were diagnosed with pediatric cancer.

After Olivia’s successful brain surgery, Elena fought hard for two and a half years and was declared cancer-free. Unfortunately, she relapsed less than six months off treatment and was back in the fight. Early into this second battle, Elena’s body was not responding to chemo, and doctors were running out of treatment options. As her medical team searched the country for a clinical trial, a new one opened here in Atlanta. Elena had to have nine intense days of chemo and radiation to prepare her body for a bone marrow transplant. On July 25, 2012, Elena received that lifesaving transplant and has been cancer-free ever since!

“I definitely learned that I had to persevere,” Elena said. “But out of adversity or difficult times, you can always turn a negative situation into a positive one.”

A year later, while reading CURE’s newsletter, her mother, Christy, read about a clinical trial CURE funded in which only one child participated. She realized immediately that Elena was that child.

“A brilliant doctor had an idea to use an old drug in a new way, and he was given a chance to explore this idea because of funding provided by CURE,” Christy said, “Because CURE said yes, Elena is alive today!”

Elena doesn’t remember all of the details of her treatment, but it definitely altered her story and what she plans to do in the future. Last December, she graduated Summa Cum Laude from Georgia Gwinnett College. During her time in college, Elena was the president of the psychology club, a Psi Chi International Honors Society member, an orientation leader, and a research assistant. She is now starting the process of researching graduate schools and plans to enroll in the fall.

After being a counselor for several summer camps, Elena knew that she wanted to work with kids. Because of the amount of time she spent in treatment and staff that made an impression on her, she considered becoming a child life specialist. But after deliberation, she decided she would like to work outside of a hospital setting. Elena’s experience has given her a profound empathy for children – especially younger children who sometimes don’t have a voice and cannot speak up for themselves. So she is planning on becoming an elementary school counselor.

“I want to work with the elementary school-age children,” Elena explained. “That is the age when they are in that stage of learning and developing, and we can help shape their lives in a positive way.”

Our staff has known and loved Elena and her family for a long time. We are proud to know the young women that she and Olivia have become. After a rough start, they both have the brightest of futures ahead!

Sadness over the loss of a loved one is always magnified during the holidays. This is especially true for a first Thanksgiving or Christmas. Holidays are synonymous with families gathering. So, if someone you love has died, this holiday may well be a struggle.

Our son Eric died many years ago, just a month before Thanksgiving. Our older son was still healing from the same accident as the holiday arrived, so there was no possibility of travel to be with extended family. We would be at home together. It was a quiet morning on Thanksgiving Day as the meal was prepared. Then early that afternoon, we sat down to eat – just the three of us, at a table for four. There was his chair. Eric’s chair. His place was as empty as our hearts were filled with grief.

If you will be grieving over these holidays, let me offer some guidance about how to handle this season intentionally and thoughtfully.

Grieve early – You will need to mourn going into the holidays. The pain will not subside without it. In fact, it will become even more intense. Don’t wait for Thanksgiving or Christmas to arrive and be swept away with your grief. Be open to how you feel as the season approaches.

Mourn fully as each wave of grief comes over you. Holiday grief denied maximizes the likelihood of post-holiday depression. Give your grief a voice. Cry it out. Talk it out. Write it out (if you journal, and I encourage it.)

Plan ahead – Do as few obligatory engagements as possible. Schedule your holidays in ways that will work for you. Keep the traditions that you like, drop those you don’t, and add any new ones that may be good for you now. This year needs to be your holiday. This one needs to be about you. Design it your way without a hint of guilt.

Take excellent care of yourself – both now and throughout the holiday season. Do and attend what you want to do and attend, and do not do or attend what you do not want to do or attend.

Working through all the emotions of these first holidays takes so much energy, so engage in whatever recharges and replenishes you. Make time for yourself. Get rest.

Be near to those you love – Plan to surround yourself through the holidays with those who are good for you and enrich you. Be with the people who give you life and energy. Graciously avoid those who don’t.

Identify the one or two special people in your inner circle with whom you can be radically open. Let them know you may need a chat or two with them over the holidays. Then, whenever you need to, call them and pour out your heart.  Do not think for a moment you are burdening them. You are not. You are honoring them by inviting them into the inner sanctuary of your heart.

Tell your family and friends what you need – Having decided that this year it’s alright for it to be about you, then communicate clearly to those closest to you what you need. Let them know your preferences for the upcoming holidays. Those who love you will appreciate your candor and direction. They do love you and want to know how.

This will, of course, be your family’s first holiday without their parent or grandparent or brother as well. Ask them in advance how they are feeling and if there is anything special they will need as you begin planning.

Share your memories as a family together – As you sit around the table for that Thanksgiving dinner, instead of ignoring what everyone is thinking, give it a voice. Remember the good times. Retell the stories. Stories are told and events remembered about someone so dear. Laughter is heard. A tear or two quietly sneak down someone’s cheek. And out of it all – the telling and the remembering – you will have honored his or her memory in a most personal way and worked through a bit more of your grief.

Have realistic expectations – This won’t be a Currier & Ives holiday. It will be different. It will be tough. Anticipate times of deep sadness. Depression is sometimes experienced when expectations that are too high collide with reality. If this is your first year without someone you dearly loved, know that it will be difficult. Don’t set your bar too high and be disappointed. Remember the formula: reality divided by expectations equals happiness. Keep your expectations realistic.

 

When I ran marathons, I didn’t set the bar too high. My goal was just to make it through to the finish.  Let that be your goal – to have made it through…  to have made it through your first holiday season, to have honored his life, and to have savored the company of those you dearly love.

 

Written by Ron Greer, Pastoral Counseling Service
Peachtree Road United Methodist Church

As a young lawyer, Roger Weitkamp had a co-worker whose experience with pediatric cancer led him to volunteer with CURE and ultimately serve on its board of directors. But nothing prepared him for when cancer came home.

“As the father of two little boys, I saw Kristin dealing with her son’s cancer diagnosis, and I couldn’t imagine going through that,” Roger said. “It made me want to do something to help.”

Roger and his wife, Cheri, decided to volunteer at Lauren’s Run and the CURE Picnic, and they kept volunteering whenever possible. His family also provided gifts for families as a part of CURE’s Holiday Angel’s program. His friend, Kristin, eventually became CURE’s CEO, and even after Roger and his family moved to London for business, they continued to support CURE from afar.

His family spent three years in London, where he and his football-loving sons, Jake and Jared, even learned to love British “football.” Roger returned to the US in 2014, eventually returning to a previous employer, tax consulting firm DuCharme, McMillen & Associates, Inc. (DMA), as general counsel.

As he and his family planned their return to the States, he let Kristin know that he would like to get more involved with CURE. Presented with that opening, Kristin encouraged Roger to consider joining CURE’s board of directors.

“I was actually quite surprised by her request,” Roger recalled. “I didn’t have first-hand experience with pediatric cancer and didn’t feel like I could understand what these families go through. Without that perspective, I didn’t know if I could do justice to board service.”

Kristin persisted, and Roger agreed, eventually serving five years on the board. With his legal background, he got involved in the governance of the organization and helped to revamp its bylaws. During that time, CURE experienced dramatic growth and furthered its support of families.

“Meeting families while volunteering gave me a little peek into the childhood cancer world,” Roger said. “While I was serving dinner in the hospital one night, I helped a teenager back to his room and saw that he was doing math homework. When I got home, my teenage son, Jake, was sitting at the kitchen table doing his math homework. It really struck me that night how random and indiscriminate childhood cancer is. That kid in the hospital could just as easily have been my kid.”

Ultimately, it was. In 2019, Jake (then 19) discovered a lump and mentioned it to his doctor during the annual physical required to play his sophomore year of football for Berry College. After a series of tests, Jake was diagnosed with testicular cancer. He had successful surgery and was deemed cancer-free. Jake is now in the middle of his senior year of college and is still playing and loving football. This year he is excited to play alongside his not-so-little brother, Jared.

“Jake had a suspicious and alarming scan recently that has doctors baffled, and he may require further treatment. But for the time-being, it is just something that we are monitoring,” Roger said. “Of course, we feel very fortunate that Jake’s cancer was detected and treated early. But the fear of it coming back will always hang over our heads.”

Earlier this year, Roger was in a meeting with DMA’s CEO and marketing and communications leaders, where they talked about increasing and consolidating the company’s charitable efforts across their offices in the US, Canada, and Europe. After his long involvement with CURE, it was an easy choice for Roger to advocate for CURE to become DMA’s primary charitable partner. His inside knowledge of the organization brought credibility. Marry that with the mission, and everyone at DMA quickly got on board. In September, DMA announced that they had adopted CURE Childhood Cancer as their company-wide charitable cause.

“The DMA family is a generous and caring group, and our company culture reflects that,” Roger said. “CURE and its mission are a natural fit. Although we’re just in the infancy of our efforts to conquer childhood cancer with CURE, we’ve already seen our people come together for Childhood Cancer Awareness Month in September and for the upcoming Holiday Angels program. Knowing how generous and committed the 600+ members of the DMA family are, it’s going to be fun to see how big an impact DMA can make in its support of CURE.”

After the presents were opened and the stockings taken down, Eli Lowery got a gift that he really didn’t want. His parents noticed that he was limping and found considerable swelling under his knee. At ten years old, they assumed his issues to be growing pains. But ice and ibuprofen didn’t make the pain go away.

The pandemic made a doctor’s appointment hard to get. Finally in February, the doctor agreed that the likely cause was growth-related. Eli’s mother, Taylor, wanted to find out for sure and asked for a referral to an orthopedist, where an x-ray revealed a tumor on his left tibia.

“I was in shock!” Taylor recalled. “After they did bloodwork, we went to a bone cancer specialist who told us that the tumor appeared to be one of three cancers – two of which would demand an amputation.”

Eli is very active and wants to be involved in every sport he can play. But an amputation would infringe upon his greatest love: dancing. Taylor dreaded telling him that he may not be able to dance again, or at least not in the same way.

“There is no such thing as a good cancer,” Taylor said. “But the biopsy showed that Eli had a form of non-Hodgkin lymphoma, which was the best of the three options. It has a more positive prognosis, and the treatment for it didn’t involve losing his leg.”

Eli started his chemotherapy the following week. Soon after treatment began, his hair started falling out, and he decided to shave his head to avoid the inevitable. He was also hesitant to eat and drink but didn’t have other significant side effects until a few weeks later.

At a clinic visit in late April, Eli complained of a headache. When the appointment was over and he got home, Eli began slurring his words and saying nonsensical things. When he woke up screaming during the night in agony, his parents rushed him to the emergency room where the staff found he had posterior reversible encephalopathy syndrome (PRES) caused by his treatment.

PRES is a syndrome characterized by a headache, seizures, altered mental status, and visual loss. Fortunately, if promptly recognized and treated, it usually resolves within a week.

“He basically reverted back to the age of three years old,” Taylor said. “He couldn’t breathe and needed to be sedated for 36 hours. It did go away quickly. But that was very scary.”

Since that time, Eli has been a rock star in his treatment. He has shown few side effects and is getting stronger every day. On his eleventh birthday, Eli got a much better present. Scans showed that he is in remission! He can’t put weight on his leg quite yet, but he should be back on the dance floor very soon.

Two-year-old Gunner lives just outside of Savannah and spends his time trying to keep up with his five older siblings. It’s a full-time job, but he is in constant motion and doesn’t let anything get him down. Last August, he had sporadic fevers and stomachaches but still kept moving as best he could. His mother, Ciji, chalked it up to teething and the typical ailments a toddler gets. She wasn’t really worried about him until one day when she was rocking him and felt a bulge on his side.

“I knew something was very wrong when I felt that bulge, so took him to his pediatrician the next day,” recalled Ciji. “She said his blood counts were off and thought he might have leukemia. Our next stop was the emergency room.”

That news was terrifying for Ciji but proved to be incorrect. Scans and bloodwork revealed that leukemia wasn’t the culprit; Gunner had a Wilms tumor. At the hospital, a whole new set of rules were in place because of the pandemic, and Ciji was the only parent able to be with him. This meant that she had to tell her husband, Cody, about Gunner’s diagnosis over the phone.

“That was hard on both of us,” Ciji said. “Cody wanted to be in the hospital with us, and Gunner certainly wanted his daddy with him. We both understood why the precautions were necessary. But that didn’t make being alone to get that news any easier.”

A Wilms tumor is a rare kidney cancer that primarily affects children. Gunner’s was situated on his right kidney. By the time it was discovered, the tumor was enormous. His medical team rushed him to surgery with the hopes of removing the tumor along with his kidney. But the tumor was so large it had roots attached to vital organs, so they couldn’t even remove enough for a biopsy. Gunner was put on a six-week chemotherapy regimen with the hopes of shrinking the tumor so surgery would be possible.

A scan after the chemo showed that the tumor had shrunk significantly, making surgery possible. Doctors removed the tumor along with his kidney and a few lymph nodes. Even after the chemo, the tumor was the size of a softball!

Gunner’s surgery was followed by another six weeks of chemo and radiation to kill any remaining cancer cells, so the tumor never returns.

The pandemic added much stress to Gunner’s treatment. While his three oldest siblings wanted to be home to help, they were in school while Gunner was immunocompromised. One of his brothers was exposed to the virus and had to quarantine away from home. Fortunately, he didn’t contract COVID, but the family knew they had to keep him away to protect Gunner’s health.

Gunner recently completed his treatment and is back to chasing his siblings around the house. With six kids, there is always something going on. While Ciji looks forward to getting back to normal, her experience with pediatric cancer has opened her eyes to a whole new world.

“I know Gunner’s treatment has been relatively easy,” she said. “I sometimes feel guilty when I see other kids who aren’t doing as well. I’m very thankful for his health and I realize that we are blessed. I hope our story can encourage other people to stay positive when they get horrible news.”

I had childhood cancer in 1971 when I was less than two years old. At the time, the doctors gave my parents a poor prognosis for my survival due to the rapid spread of an aggressive rhabdomyosarcoma tumor. But my parents refused to accept the reality that there was nothing else that could be done. It was then that they had the good fortune of meeting Dr. Abdel Ragab, a young doctor at St. Louis Children’s Hospital. He gave my parents hope when they had little left. He told them not to give up – that there were still options for treatment that might save my life.

Due to his guidance and encouragement, I began a chemotherapy treatment that was a clinical trial. (Consequently, this trial happens to be the standard treatment for rhabdomyosarcoma today.) I also received the maximum dose of radiation which allowed doctors to remove the tumor threatening my life. As a result of these treatments, I beat the odds and survived. Since then, my life has included multiple surgeries, hospital stays, and procedures to address the side effects from the treatment that saved my life.

Dr. Ragab founded CURE Childhood Cancer in Atlanta in 1975, shortly after leaving St. Louis, where he treated me. Unfortunately, I lost track of Dr. Ragab over the years and hadn’t talked to him since my wedding, which he attended in 1998. Kristin Connor, Executive Director of CURE, called me in 2017 and asked if I would be willing to present Dr. Ragab the Spirit of Hope Award at the Believe Ball. Of course, I jumped at the opportunity. I was excited to see him again and honored to present him with an award to recognize his many contributions and his career dedicated to fighting childhood cancer. My parents flew to Atlanta, and we presented him the Spirt of Hope Award together as a surprise. As you can imagine, it was a powerfully emotional reunion. Unfortunately, Dr. Ragab lost his own battle with cancer less than a year later.

Due to Dr. Ragab’s tireless work, CURE has invested over $32 million over the last ten years in research to help save children like me. I joined CURE’s Board of Directors to help carry forward Dr. Ragab’s legacy and support CURE’s mission to cure childhood cancer in our lifetime. Until we achieve that mission, CURE will continue to support families during their most challenging time while advancing research that not only improves the outcomes for children but also reduces the life-long impact of today’s harsh treatments.

Dr. Ragab had an unwavering belief that childhood cancer can and will be conquered. It is this belief that saved my life and I will spend the remainder of it working to make his vision a reality. I hope you will join us in this critical mission!

With Hope,

Matthew Gephardt
President, CURE’s Board of Directors