Crossing the Finish Line

In this disposable world, very few things seem to last 25 years. But when something touches enough people’s lives it becomes engrained in the very fabric of the community. So it is with Lauren’s Run. On April 28 we celebrated the 25th Lauren’s Run and CURE Childhood Cancer Annual Picnic. The first running was in 1992 after the Zagoria family lost their beautiful daughter, Lauren, at the age of 2. In 2001, another Atlanta toddler, Lauren Kochman, passed away after battling neuroblastoma and the Kochman family joined the Lauren’s Run efforts in 2002. Today we run in memory of both Lauren’s – as well as in honor of the thousands of other children who have fought childhood cancer.

This year’s race started off in spectacular fashion as a beautiful double rainbow greeted us at the Concourse Office Park. The temperatures were perfect as runners began to arrive and warm up for the 5k. After the winners were announced and medals presented, the founders of the original race were honored and recognized as VIPs and the mothers of the two Laurens shared their emotions as they considered how much has been accomplished in their daughters’ legacies.

In the crowd was a special little boy named Knox. Knox and his parents were preparing to run the 2k. Although he is only seven, he’s traveled a long road to get to this point.

His journey started very early. As other boys his age were starting to walk and become rambunctious balls of energy, Knox refused to walk and was oddly sedate.

“I knew something wasn’t right,” said his mother, Kimberly. “We took him to several different doctors and got all kinds of opinions. They finally landed on synovitis – a virus that affects hip movement and told me it would run its course. I wasn’t sure, but miraculously he started walking and we thought his health scare was over.”

Knox’s newfound vigor lasted for six months when he refused to walk again. At the stubborn insistence of his parents, Knox was given an MRI which revealed a neuroepithelial spinal tumor – a tumor so rare that it was only the 9th diagnosed at CHOA. He was scheduled for immediate surgery during which Knox’s surgeon scraped every bit of the tumor he could find. A tiny portion remains, but it has never grown or caused him problems since. After a very tricky year of chemotherapy, Knox’s treatment was complete. But there are lasting effects.

“There were moments during our journey where we had no idea if Knox would ever be able to run let alone walk having a spinal tumor,” Kimberly relayed. “We have watched him since he was a baby learning to walk, try to figure out how to cope with it. He trips often, calls himself slow, has been made fun of and looks different when he runs. It never breaks his spirit.

“Today marked a huge milestone in our family’s life as we watched our son cross the finish line in his first 2K. To watch him dig deep today, stop to rest and talk with his friend Lake who is in Heaven, and persevere to finish strong melted my heart. I have learned so many life lessons from these sweet kids. If you had asked me yesterday if he would have been able to do this I would have bet no. It’s a testament to the fact that you can truly break any barrier and do anything you set your mind, heart and soul to do.”

Knox’s resilience represents the spirit and hope we celebrate at Lauren’s Run and the CURE Childhood Cancer Annual Picnic. It is a spirit of a community committed to conquering pediatric cancer and it cannot be denied. To date, Lauren’s Run has raised more than $4.4 million in the fight. Some of the original research funded in its early years is now frontline therapy for children fighting cancer. Children like Knox – who deserve the opportunity to cross the finish line.

 

Watch Knox cross the finish line at Lauren’s Run:

Statesboro’s Sisters on a Journey

When a child is diagnosed with cancer, it really does take a community of supporters to make the child’s family feel loved and supported. Statesboro mom Jody Polk knows this first hand. When her daughter, Anna Hays, was diagnosed with cancer at the age of two, the Polks’ family, friends, and the entire community rallied on her behalf. Jody’s desire to give back to other families facing a similar diagnosis was evident at the Statesboro Sisters on Journey Dinner on April 13. About 350 guests gathered at The Belle House, a beautiful venue that was perfect for the evening. Hostesses creatively decorated their tables in a variety of themes and every single table was unique and beautiful. Tears filled Jody’s eyes as she kicked of the 2019 event by dedicating the evening to the memory of sweet Morgan Frison, a four- year-old Statesboro girl who passed away in November due to complications from her cancer treatment.

“Morgan’s life held such beautiful potential,” Jody said. “She had such a future and her it was her treatment, not her cancer, that ultimately killed her. We want her family to know that precious Morgan and the thousands of children like her are the reason that CURE will continue to raise funds and push for less harsh treatments created specifically for children.”

Savannah band, Tell Scarlet, provided musical entertainment as guests mingled and checked out table decorations and nearly 200 silent auction items on the back porch of The Belle House. Statesboro welcomed emcee Jamie Deen back for the third time. Jamie is son of cooking icon, Paula Deen, and a familiar face in South Georgia. Jamie entertained the guests until a delicious dinner, provided by Honey Catering, was served.

The focus then shifted to the purpose of the evening as Karen Rutherford and her daughter, Katie, took the stage. Karen is CURE’s Patient and Family Services Manager and Katie is a survivor of rhabdomyosarcoma. Both were open and transparent about the difficulties and triumphs of Katie’s battle. They movingly shared some of the toughest things about Katie’s treatment and helped everyone in attendance understand a little more of what it is like to fight cancer as a teenager. Karen wrapped up their story by sharing about the continued need for funding for research for better and more current treatments for kids battling cancer. The evening closed with an exciting live auction hosted by auctioneer, Joe Lanier. It was a beautiful, meaningful night.

We are thrilled to announce that our 2019 Statesboro Sisters on a Journey Event raised $81,000 for Catie’s Fund! These funds will support CURE’s precision medicine initiative, which brings individualized, gene-based treatment to children with cancer. Precision medicine is one of the most promising new areas of research for improving survival rates in children while lessening harsh side effects.

We are extremely grateful to all our sponsors, auction donors, volunteers, and tables hostesses who made this evening so special. Thank you, Statesboro!

 

 

Presenting Sponsors for our 2019 Sisters on a Journey Events are The Little Bird Foundation, Memorial Health, Coastal Electric, Savannah Toyota, and The McGraley Company.

Volunteer Spotlight on Leslie Edmond

If you attend CURE events, chances are you’ve seen Leslie Edmond. Although you might have to look hard to catch a glimpse because you typically won’t find her on stage or in the spotlight. No, she’ll be the one with her sleeves rolled up behind the scenes doing whatever it takes to ensure success. And there’s nowhere else she’d rather be.

Leslie found CURE during her family’s fight against childhood cancer. Her very active eight-year-old son, Matthew, ran a low-grade fever for two weeks and was noticeably slower at an end-of-season swim meet. When he complained of neck pain and she found a lump, her concern escalated. Fortunately, he had a routine check-up scheduled for the following day. But his pediatrician found more lumps on his chest and sent him to a specialist.

After a long process that included bloodwork, biopsy, and many more tests, Matthew was diagnosed with anaplastic large-cell lymphoma. His treatment consisted of chemotherapy that lasted a full year.

“I would describe him as a healthy cancer patient,” Leslie said. “He handled chemo well and we only had to make one emergency trip to the hospital.”

As a cancer mom, Leslie was invited to one of the first A Tribute to Our Quiet Heroes luncheons and it made quite an impression.

“Most Saturdays I was doing laundry or driving the mom shuttle somewhere,” she recalled. “But there I was dressed up and sitting at a table with these women I didn’t know. But really, I knew every one of them because we shared such a deep common experience. It was beautiful.”

That Saturday set something in motion for her – a desire to pay it forward. Leslie wanted other moms fighting for their children’s lives to be made to feel as special as she did that day. So she contacted CURE and offered to help. She didn’t limit her involvement to Quiet Heroes, though. Since then, she has served in many other capacities. Leslie delivers meals to the clinic on Tuesdays, she has tied up Christmas bows and pound cakes, stuffed invitations, and served on auction committees.

Leslie at Quiet Heroes with fellow volunteers: Leigh Ann Herrin, Eileen and Maggie Villoutreix

“I like to be a part of several things because I get to see the extent of CURE’s care and relationship with the families,” Leslie explained. “One of the most rewarding and challenging things I’ve done is volunteer at the bereavement weekends. Seeing the parents working through their grief and thinking maybe I had a small part in helping just one of them makes it all worthwhile.”

Leslie is constantly encouraging others to volunteer. For those interested, she has three pieces of advice:

  • Be flexible and fill whatever gaps are needed.
  • No job is insignificant. Every small thing is important to the whole effort.
  • Not everyone can write a big check, but everyone can do something to help.

Matthew is twenty-eight years old now and lives in Chattanooga where he can enjoy climbing, camping, and all of the outdoor activities he loves. He is very fortunate to have no obvious side effects from the treatment.

And Leslie, she is still serving at every opportunity. In fact, recently, as Leslie was working the registration desk at CURE’s Weekend of Hope and Healing, a mother noticed her name tag and said, “You’re a CURE Volunteer? I want to be a volunteer.”

Leslie just smiled and replied confidently, “When you’re ready, there is a place for you.”

Bikers Battling for Kids

Many people have an image in their mind when they think of motorcycle clubs – and it isn’t always positive. One group of motorcycle enthusiasts aims to change that perception.

“Our club operates similar to the clubs founded in the forties,” David Little explained. “Traditionally, a club founded from a group of like-minded people who want a brotherhood and ride motorcycles”.

In an effort to differentiate themselves, several club members started a new nationwide club called, Defiant Crew Motorcycle Club. While they kept the goal of brotherhood and riding, they also wanted to add a community service aspect to the club.

“We want to show that we are committed to our communities,” David said. “Everyone has been affected by cancer. In fact, I have recently lost two of my dearest friends to the disease and I can’t imagine what kids fighting cancer have to go through.”

To fight back, the Georgia chapter of Defiant Crew MC created an event called Bikers Battling for Kids. On April 27, 70-100 bikers will gather at the Knucklehead Café in Rockmart for a poker run. From there they will ride to a park in Cave Springs, then to Sixes Tavern in Cartersville, and finally to Bikers Gone Wild in Dallas before returning to Rockmart. The loop is approximately eighty miles and at each stop they will draw a card. When everyone finishes they will each have a hand to play and the winner will receive a prize.

In the five years they’ve been making this run, they have raised over $25,000 for CURE. The event is quite organic – they literally knock on doors to get items for auction and spread the word of the poker run through word of mouth and signs placed at locations bikers frequent.

“It’s fulfilling,” said David. “To know that we can get together, ride, and do what we love while making a difference in our community is huge.”

 

Maylee and Precision Medicine

Maylee has always been kind, intelligent, and slightly feisty. Since her birth in Lagrange, Georgia, she has also been a picture of health. So when she got a violent stomach virus at the age of three, her mother, Kristin, knew it was more than just a bug.

“I never expected she would go through life without being sick,” Kristin said. “But I knew right away this was different and something much worse.”

Mom was right. As the emergency room staff began giving Maylee fluids, they also tested to see if she had meningitis. Those tests found something much more sinister; Maylee’s blood had leukemia cells in it. After confirming the diagnosis, her doctor sent her by ambulance to Children’s Healthcare of Atlanta where she would spend the next six weeks.

“I had such a wide range of emotions when the doctor said my baby had cancer,” Kristin recalled. “I was confused, overwhelmed, and scared. But I also had a strange peace because I felt the Lord say, ‘I created this child and I will take care of her.’”

Maylee’s chemotherapy treatments were very aggressive. Every child responds differently to treatment, and her little body had difficulty rebounding, which forced longer hospital stays. She also had a very unusual emotional response.

“Chemo made her angry,” Kristin recalled. “She understood what was going on – that the chemo led to her feeling bad – and she took it out on the doctors. So she wouldn’t tell us when she felt bad or hurt because that would mean more doctors in the room.”

Fortunately, Maylee reached remission soon and found a routine in the hospital, although her feistiness never let her totally forgive the doctors. After seven months, she finished treatment and was declared cancer-free.

Maylee and her family began to settle into a new routine of normalcy. She welcomed her second brother into the world and began school. But during the summer of 2018, she began to snore. It might seem innocuous, but Kristin’s mother’s intuition struck again because she had been told sleep apnea can be a sign of relapse. As they rode to the hospital for doctors to evaluate Maylee, Kristin began steeling herself for another fight against cancer, feeling the familiar mix of fear, faith, and comfort.

Something new awaited Maylee at the hospital, though. Since her original diagnosis and with a $4.5 million grant from CURE, the Aflac Precision Medicine Program had launched. This program allows doctors to look at the genetic makeup of a child’s cancer and then search for a treatment designed specifically to treat the genetic abnormality at issue. Once doctors confirmed her cancer had returned, they looked at the genetics of Maylee’s leukemia and found very interesting results.

The genetic testing revealed that Maylee has a gene called CEBPA, which causes her to be predisposed to developing leukemia. Strangely enough, doctors were happy to find this gene because they know it responds well to treatment. If genetic testing had been available when Maylee was originally diagnosed and this gene discovered, Maylee’s treatment would have been different. Rather than the months of chemotherapy, Maylee would have immediately received a bone marrow transplant. Thankfully CURE’s funding allowed the program to launch in 2017, in time to help Maylee when her cancer returned not to mention so many other children yet to be diagnosed.

Maylee has since had what is called an allogenic stem cell transplant and is recovering nicely. She is once again in remission and focusing on getting well.

The discoveries from her genetic testing didn’t end there, however. Doctors also found that her leukemia is familial and that her two brothers share the gene that predisposed Maylee to it. Maylee’s brothers were immediately enrolled in the new genetic predisposition clinic.

“We had many different options available to us when they found out,” explained Kristin. “We chose to monitor the boys and watch for any symptoms. There is no guarantee that they will ever have leukemia. We just need to look for things out of the norm, and since they are enrolled in the predisposition clinic, we can have bloodwork done immediately.”

Maylee has completed treatment and is home growing stronger each day. She ultimately forgave her doctors but was thrilled to leave them behind. While she gets better, Maylee dreams of a return to normal life with no more hospitals, cancer, or chemo. And as each day passes, she inches closer to lacing up her cleats and playing soccer without a care in the world besides the goalie in her way.

Take the next step to support research that will help save kids with cancer… kids like Maylee

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What is Precision Medicine?

In 2017, CURE made an unprecedented $4.5 million commitment to the Aflac Cancer Center of Children’s Healthcare of Atlanta to launch the Aflac Precision Medicine Program (APMP). With this award, the Aflac Cancer Center would become one of only a small handful of pediatric cancer centers nationwide able to offer this cutting-edge treatment approach to children with cancer.

An easy way to understand precision medicine is to think of it as “personalized medicine.” Although we know that every child is unique, today’s childhood cancer treatment does not take into account the genetic differences of each child. Rather, a child’s cancer is treated according to disease type. But often, children with the same type of cancer respond differently to the same treatment. A chemotherapy which is effective for some may fail altogether for others because of the genetic differences at play. That is where personalized medicine comes in.

Over the past twenty years science has made incredible leaps in discovery by finding what is referred to as genetic barcodes – our DNA and RNA. We now understand what healthy cells look like and can often find triggers or markers in a tumor where something went wrong with a gene. By locating and isolating that problem and finding chemotherapies or other treatments proven effective against the genetic problem, doctors hope to improve survival while also minimizing exposures to toxic treatments which are not likely to work.

“There are really four outcomes when we look at genetic information taken from a child’s tumor,” explains Dr. Douglas Graham, Director of the Aflac Cancer Center. “The first is the perfect storm – we find a target that has a drug which is known to be effective against it and that drug is approved for children. We also may find a target with a matching drug that is not approved for children and would have to petition for access. The other options are not as optimistic. We may find a target with no drug known to work against it or we may find no target at all.”Scientist examining samples in a laboratory for childhood cancer research.

The first step in the process is getting the child’s genetic information. Since July 2018, CURE has funded the genetic sequencing of more than 200 children with high risk or refractory cancers who would not have otherwise received the sequencing through another source.

 For 78% of the children sequenced, their treatment was impacted by the genetic information obtained!

CURE Childhood Cancer remains determined that precision medicine is one of the most promising methods for improving survival rates in children. And we steadfastly believe that our children deserve the best and safest options available.

Effingham County’s Sisters on a Journey

Effingham County showed up and gave generously once again at the Effingham Sisters on Journey Dinner on March 9, 2019. Over 900 guests gathered at beautiful Honey Ridge Plantation near Guyton, GA, a venue generously donated for use by the Effingham County Board of Education. The tables were set in a spacious white tent (provided by Ranco Tent Rentals) that was perfect for the event. Hostesses once again creatively decorated their tables in a variety of themes and every, single one was unique and beautiful.

Guests perused more than 400 silent auction items under the rustic barn lit with Edison bulbs donated by Carlson’s Premier Events. A local band, Goshen Travelers, provided great entertainment as guests mingled and checked out the beautifully decorated tables. Later, emcee Lonnie Pate began the program by drawing door prizes, and then a delicious dinner was provided by Simply Southern Catering. Following dinner, auctioneer, Kenny Williams got the crowd going for an exciting live auction. Next came one of the favorite parts of the Effingham dinner: the raffle drawings for themed baskets donated by generous hostesses.

The heart of the evening was panel of patients and moms who took the stage to share about their journey through childhood cancer. Kelli Stuckey and her daughter, Lily, shared about some scary moments in Lily’s treatment for leukemia. Alana Williams and her daughter, Nevaeh, talked about the difficulties of travelling back and forth to Atlanta for treatment and shared about Nevaeh’s sixteen-hour surgery to remove thirteen tumors from her abdomen. Ashley Shiell and her daughter, Kylie, talked about the challenges of being a teenager and having cancer. Kylie pointed out how difficult it has been to miss playing the sport she loves while battling leukemia. Finally, Ashley Beam told the crowd about her son, John, who died last October after a difficult battle with neuroblastoma. She graciously helped the crowd know who John was and shared how new neuroblastoma treatments are desperately needed. All of the panel guests were open and honest about the difficulties of their journeys, but each also shared of the things they have learned during this time in a powerful and moving manner.

It was a beautiful evening, and we are thrilled to announce that our 2019 Effingham Sisters on a Journey Event raised $144,000 for Catie’s Fund! These funds will support CURE’s precision medicine program which offers individualized therapies based on the patient’s genetics. This innovative research envisions more effective treatment while limited the harsh side effects of current methods.

We are extremely grateful to all our sponsors, auction donors, volunteers, and tables hostesses who made this evening possible. Thank you, Effingham County!

 

Presenting Sponsors for our 2019 Sisters on a Journey Events are Memorial Health, Coastal Electric, Savannah Toyota, and The McGraley Company.

Robert is Ready for Lauren’s Run

Diagnosed with Acute Lymphoblastic Leukemia (ALL) at just six years old, 15-year-old Robert’s childhood has been consumed by cancer. In the eight years since his diagnosis, Robert has endured 800 rounds of chemotherapy, 65 spinal taps, and countless surgeries trying to beat his cancer. It’s been an arduous fight!  But Robert is such an incredible boy and has earned his nickname, Robert the Great.

There is one event Robert looks forward to every year – Lauren’s Run and the CURE Childhood Cancer Annual Picnic. Each year he creates Team Robert the Great and raises money to fight for kids like him. Having won the award for top fundraising team several years, Robert is a pro when it comes to inspiring people to give.

We sat down with Robert to ask him to share the secrets of his success.

CCC: How many years have you been doing Lauren’s Run?

RTG: I think seven.

CCC: How do you build your team?

RTG: We ask family and friends to come. Most of them agree, and if they can’t they always donate. Last year we had around forty members on our team, and we won the team spirit award.

CCC: How did you win that?

RTG: My mom and her friends are loud.

CCC: You also won the fundraising award last year. Tell me how you did that.

RTG: We ask people for money. If I ask, they’ll usually give something. It’s hard to ask and ask, so we tried to make it a game. My mom shared the page on Facebook and then we started doing funny videos. I told everybody I would smash my dad’s X-box if we got to $10,000.

CCC: Did you get there?

RTG: Yup! Then I challenged another team captain. Whoever raised the most would  get to throw an egg at the loser.

CCC: Did you win?

CCC: That looks like more than one egg.

RTG: It was a dozen, I won by a lot.

CCC: What else do you like about Lauren’s Run.

RTG: I love seeing all my friends I’ve met since I been fighting cancer. And I love the picnic too. There is great food, games to play, and oh yeah, and the game truck is awesome.

CCC: Any plans for this year?

RTG: Just to win.

When asked about his cancer, Robert simply said,

“I don’t know much about it, but I know it won’t go away.”

Robert is a fierce competitor in his fight against cancer and his goal of repeating as fundraising champion. You can join Robert, create a team, and work to end childhood cancer with us. Who knows, if things get competitive, Robert might challenge you!

This year marks the 25th Lauren’s Run and the CURE Childhood Cancer Annual Picnic. We are celebrating this incredible milestone on April 28 at the Concourse Office Park in Atlanta.

Over the years, thousands of families have gathered to walk and run in support of CURE, raising more than $4.1 million for lifesaving pediatric cancer research. Lauren’s Run and the CURE Childhood Cancer Annual Picnic truly brings the community together, with families, schools, and companies forming teams to support our fight.

After the race, Lauren’s Run participants, as well as families diagnosed with childhood cancer, join together for the CURE Childhood Cancer Annual Picnic. The picnic is a day unlike any other! Dozens of games, prizes, elaborate face painting, enormous inflatables, music and dancing, arts and crafts, a full lunch, and so much more.

Registration is open at www.laurensrun.org

Bailey’s Full-Court Press

Many people want to play basketball at an elite level. But only a few possess the necessary talent, and most wouldn’t be willing to put in the work required to get there. As all eyes turn to the NCAA and March Madness, one young lady will watch a game or two only if her workout schedule allows it.

Basketball has always been Bailey Moody’s favorite sport. After bone cancer forced a partial amputation of her right leg when she was ten years old, she wasn’t sure if she would be able to continue to play.  Then she discovered wheelchair basketball. Bailey made the U.S. National Women’s Basketball Team last year at 16 and was one of the youngest players on the team. While she enjoys the travel, it has been incredibly hard work.

“I travelled to the Olympic Training Center in Colorado several times, and I got to represent the United States in the Netherlands and Germany last year,” she said. “This year we are playing in Thailand in May, and if I can play well, I’ll hopefully make the cut to go to Peru for the Pan Am Games in August.”

Globetrotting sounds glamorous until you hear her training schedule.

“I have nine workouts a week,” Bailey said. “I do three for strength, three for conditioning, and three for shooting. I try to compress them into six days so I can have Sundays off, but it doesn’t always work out. During the shooting workout, I have to shoot from different areas on the court, and then I log the percentages for the coach to see.”

That’s a lot of work – especially considering that Bailey is a junior in high school and has other interests. Bailey had to stop participating in theater this year, but she still manages to keep excellent grades, lead in student council, and play guitar and piano in two bands – one at school and one at church.

Is there anything this girl can’t do well?

“I’m not good at baking or responding to texts,” Bailey laughed. “Seriously, I love the training, but the hardest part is discipline. I have to say ‘no’ to a lot of things I want to do.”

But it is paying off. She’s currently looking into college and knows she wants to continue playing ball. She also wants to help CURE put the full-court press on childhood cancer.

“In wheelchair basketball, there is a lot of strategy involving pressing,” she explained. “We press on defense just like stand-up basketball. On offense, we press to keep a player or two off our side of the court. The chairs take up a lot of room and keeping one pent up at mid-court makes more space for our offense to move around.”

Bailey is passionate about helping kids fighting cancer. Although she admittedly doesn’t have time to watch a lot of basketball, she will be playing CURE Madness and invites you to play too. For a $25 donation, you can fill in a bracket and have a chance to win a $200 gift card. Bailey offered three tips to pick a winning bracket:

  1. Don’t pick who everyone else is picking.
  2. Don’t pick all number 1 seeds – crazy things always happen.
  3. If you have a toss-up, pick your favorite uniform color. You never know!

Join Bailey for CURE Madness by signing up today.

Savannah’s Sisters on a Journey

“A beautiful night, an amazing evening, a worthy cause, an outstanding event!”

These are the words Sisters on a Journey guests are using to describe Savannah’s Sisters on Journey Dinner on February 8th. Over 500 guests gathered at the restored historic Kehoe Ironworks building at The Trustees’ Garden venue in downtown Savannah. As guests walked through the doors, they posed for photos taken by South Magazine. Upon entry to the main event space, guests were overwhelmed by the lovely, original table themes and décor. The hostesses decorated tables with everything from traditional dinner décor to themed tables in honor or memory of a patient such as the sailboat tables in honor of Malone, a 16-year-old leukemia patient who loves sailing. There were just fun themes that lent themselves to easily dressing up as a group. Some original group themes this year were a karate kid themed table, “Kick Childhood Cancer”, a Beetles Yellow Submarine Table, “All Together for a CURE” complete with Beetles shaped cookies and record album dinner chargers, a Succulent filled table containing signs with phrases like “Childhood Cancer is a real prick”, and a Frida Kahlo inspired table created by Tequilla’s Town Restaurant with a sign that read, “Let’s TeqKILLa Cancer.” Every single table was unique and beautiful.

Guests enjoyed cocktails and perusing silent auction items on the patio while listening to music provided by local band, Tell Scarlet. A delicious dinner was provided by Silk Road Catering. After dinner, emcee Andrew Davis drew door prizes, allowed patients to share why CURE is important, and introduced keynote speaker, Kristine Bothwell. Kristine shared the story of her daughter Ella’s cancer journey. Kristine drove home the need for new improved research for pediatric cancer by sharing that Astronaut Neil Armstrong’s young daughter, Karen, lost her life in 1962 to the same disease, Diffuse Intrinsic Pontine Glioma, that took Ella’s life in 2016. Kristine said, “In 55 years, we can put a man on the moon, but we still do not have an effective treatment for DIPG. This is unacceptable.” There was not a dry eye in the crowd when Kristine showed a video tribute of Ella’s life.

At the end of the evening, Andrew Davis and Auctioneer, Kenny Williams got the crowd going during an exciting live auction. We are thrilled to announce that our 2019 Savannah Sisters on a Journey Event raised $130,000 for Catie’s Fund! These funds will support Precision Medicine which enables patients whose cancer has not responded to traditional methods to undergo genetic testing to help doctors decide which treatment might target that patient’s specific cancer without harsh side effects. We are extremely grateful to all our sponsors, auction donors, volunteers, high school volunteers, and tables hostesses who made this evening possible. Thank you, Savannah!

 

Presenting Sponsors for our 2019 Sisters on a Journey Events are Memorial Health, Coastal Electric, Savannah Toyota, and The McGraley Company.

Hope after Loss

The loss of a child is so unnatural in our society that many parents feel utterly alone in their grief. Since it is such a rare occurrence, most people have no idea how to help or even engage with a bereaved parent. As part of our commitment to support families devastated by childhood cancer, CURE brings these parents together every year at our Weekend of Hope and Healing. During this weekend, families celebrate the lives of their children while attending presentations and workshops designed to assist them in their grief process.

But it is so much more than that. Each year, we hear of new ways lives have been touched as parents of different races, religion, income levels, and ages come together and realize they are not alone. Last month, parents of 51 precious children gathered together to move forward in their grief. Here is just a taste of what they discovered.

Jonathan Day lost his son, Owen, in September of 2017 and found peace during the weekend.

“Whenever I am in a normal group of people, I can stop a conversation or destroy the mood by just talking honestly about my children,” he explained. “But here, I sat in a room with people who know exactly what I went through. I got to talk about Owen without making anyone feel uncomfortable. I found that soul-settling.”

Jonathan also took comfort in hearing that other men share many of the same feelings with which he has struggled.

“The rational side of me understands that cancer was out of my control,” he said. “But the emotional part of me still holds onto the feeling that I failed as a father. My principle job was to protect Owen and I didn’t. It was very powerful to hear that there are other men dealing with that same feeling. I didn’t feel isolated when I was in that room.”

Also in attendance was Trish McKay, who lost her nine year old daughter, Kate in April of last year. She found meeting the parents and learning about their children particularly meaningful.

“I got to make some new friends, share our stories, and learn all about their children,” she said. “And that was the best part, getting to know some of Kate’s new neighbors! I am always wondering about the new things she is doing now in heaven, and for once, I know a little bit of who she is probably hanging out with! They are really cool kids. Morgan, the sassy three-year-old who loves glitter and purple. Alyssa, the sweet fourteen-year-old who danced at her school. Anna-Charles, the six-year-old fashionista who sang Meghan Trainor songs for the nurses. Kian, the two-year-old who charmed the nurses and had an afro bigger than his head.”

We recognize that everyone grieves differently and there is nothing we could ever do to completely alleviate a parent’s grief. Grief is a process and we hope the weekend helps to move people forward wherever they are in that process. When we hear comments like those of Benji Hollis, we are assured that the weekend was meaningful.

“Our daughter, Anna Charles, passed away 4 months ago after a bout with Acute Myeloid Leukemia,” Benji relayed. “Our emotions were, and still are, too raw and we weren’t quite sure if we were ready to attend Hope and Healing. But attending was the best decision we’ve made. It was helpful to meet other parents who could relate to the pain and suffering that we are enduring. It didn’t make our pain go away, but it was comforting to know that we aren’t alone. We got the chance to really get to know some of the other parents, and we look forward to staying in touch with them, as well as seeing them next year. There was definitely a healing factor to the event that we didn’t have before we arrived. We showed up with hope and left with even more.”

 

If you’ve experienced loss, please note the common theme running through all three parents: community. There is something significant about sharing your pain with other people who understand. Whether online or in person, we urge you to seek out others whose similar experiences can help you move forward in your grief. There is hope after loss.