CURE Childhood Cancer Archives - CURE Childhood Cancer

Mark Myers In Childhood Cancer, CURE Childhood Cancer

10 Ways to Help Children Fighting Cancer During the Holidays

The holidays are a time of generosity and goodwill. As you can imagine, trying to celebrate the holidays while managing their fight against childhood cancer can be overwhelming. During this season of giving, there are simple ways you can make the season a little brighter for children fighting cancer and their families.

Many families must travel long distances for treatment – often multiple times a week. To help defray some of the cost, CURE provides gas cards in $50 increments to places like QT, Racetrack, Kroger, and Walmart.

Get your company, friends, neighbors, or church together to begin a project by assembling meal bags, snack bags, toiletry bags, or boredom buster bags. These are critical to families who have long or unexpected hospital stays. Click HERE for more information and examples. Our supplies of each vary, so please email Lisa Odendahl at [email protected] before starting your project to find the greatest area of need.

A recent study indicates that 20-25% of children experience food insecurity during their cancer treatment, and this insecurity can lead to poorer outcomes. Your company or organization can make a difference and provide a meal to children with cancer and their families through CURE’s Open Arms Meal Program. These meals help alleviate the stress and cost of meals for family members during hospital stays while meeting nutritional needs. Click HERE to learn more about sponsoring a meal.

If you have a favorite restaurant and business, encourage them to host a percentage night during the holiday where a portion of the proceeds from your purchase will benefit CURE.

5. Start a Holiday Facebook Fundraiser. This is a great way to share our cause with your friends and family while raising essential funds to help. Click HERE to set yours up.

Visit the CURE Store. We’ve got several products to fend off the cold, like our zip-up sweatshirt and the CURE / Love Your Melon beanie. By buying and wearing CURE products, you are helping us to conquer childhood cancer while sharing the mission at the same time. Shop Now!

Host your own hot chocolate stand, chili cookoff, or other events in your neighborhood. The sky is the limit to what you can do. You can do it all yourself or use our handy DIY Fundraising site! Click HERE to get started.

If you like to exercise, encourage the owner of your gym or fitness studio to host a “give-back holiday class” where the proceeds raised for the class go towards our mission.

Your school or business can host an “ugly sweater fundraiser day” where students, teachers, or colleagues donate $1 or $5 to wear their sweaters that day. You could even make it a competition between grades or departments!

Host a neighborhood movie night with classic holiday movies like Elf, It’s a Wonderful Life, or A Christmas Story. There’s no shortage of holiday music and movies to listen to and watch. Your friend’s ticket to attend is a donation to CURE.

Of course, these are just some of the things you can do for children with cancer and their families. Your only limit is your imagination! If you need any help or direction, please reach out – we would love to talk to you. Please email Kristen Rudio at [email protected].

Mark Myers In CURE Childhood Cancer, Events

What it Means to be a Quiet Hero

On May 14, we will gather in person for A Tribute to Our Quiet Heroes. This special luncheon honors the mothers of children diagnosed with cancer, who guide their families through an unimaginable journey. The last two years have been virtual events, and many mothers whose children have been diagnosed during that time have no idea what to expect. So we sat down with Ramona King, whose son Ezra, was diagnosed with a brain tumor in 2018.

CURE: What is it like to be a mother walking through childhood cancer?

When Ezra was first diagnosed as a baby, I was terrified, mad, and alone. I felt like the only mother in the world having to deal with something so horrific. And in my own little world, I was. However, I soon found out that I am the farthest from being alone. There is a community of amazing mothers who are strong fighters for their children battling these diseases. I still struggle. I feel resentful at times for this being our story. I want so differently for my beautiful little boy. I have to fight so hard for his care, research things I never even dreamed of, and hold his body through things that children should never have to go through. It is traumatizing. However, I am a better person and a better mother for it. My perspectives on life and what is most important have shifted in the best way.

CURE: What was your first impression when you got the invitation to A Tribute to Our Quiet Heroes?

My first impression when I heard about it was to not go. That sounds weird but I felt nervous. I didn’t know what to expect. I felt so alone, and I thought by going and being around that many people, I’d feel even more alone. My husband urged me to go. I was timid when I parked and walked in. I felt overwhelmed. As soon as I put my name tag on, I felt like I was somebody. Not just someone who was hurting inside secretly, but like someone who everyone else with a nametag could relate to. I quickly made friends and saw other moms I had seen in the hospital hallways.

CURE: Did you enjoy the event?

I went to the Quiet Heroes event for the first time in 2018, just weeks after my baby began chemotherapy. I felt overwhelmed at first, but I quickly realized that I was in a room full of mothers who knew just exactly all that I had been through and felt during those horrific months following diagnosis. I wasn’t alone in my heartbreak for the first time. There were hugs, smiles, tears and “I’ve been there’s.” It was incredible. It felt nice to have an event just for me.

CURE: What was your biggest take-away?

It was like I could finally relate to someone face to face. For months in my community, I was the person everyone couldn’t look at, the person they pitied. I was the mother living everyone’s worst nightmare. At Quiet Heroes, I was just a friend. I could look into other moms’ faces and understand what they had been through, too. There were moms fresh in the fight and those that had decades of experience being in these shoes. It was so nice not to be the sad person in the room. We were all strong moms who had all walked similar paths.

CURE: Are you excited about Quiet Heroes being in person again?

I cannot wait to attend this year! I get to see friends that I haven’t seen in a while. I always am so proud to see my son’s sweet face on the screen. It’s a mix of fellowship, friendship, hugs, tears, and feeling so proud of our children who have been through so much.

CURE: What would you tell a mom whose child has recently been diagnosed with cancer?

You feel alone. You are the only person you know in your community who is hurting like this. But I want you to know that you aren’t alone. There are moms who have been where you are, who have had their hearts broken, have had to hold their child through the worst. We want to meet you because you make us feel not alone, too. There are so many of us out here making these tough decisions.

CURE: What would you tell a mom who might be hesitant to go to Quiet Heroes?

Just go. Just try it. You will love it! Just stand tall and be brave for a few minutes and get yourself in the door. Once you find a seat, you will realize you are a part of a friendly, fun, and amazing community of warrior moms.

You are invited to join us as we honor the mothers of children with cancer at A Tribute to Our Quiet Heroes. This luncheon features inspiring speakers, a special musical performance, and an over-the-top silent auction and raffle. It is also a day to raise money to fund critical research aimed at solving cancers that affect children.

Won’t you join us?

Get Tickets

Mark Myers In Childhood Cancer, Children, CURE Childhood Cancer

Nurse Nelson

She is often called “Nurse Nelson” because she will not hesitate to give instructions to her medical team. Since she is only four years old, this confidence may sound surprising. But Jeneva Nelson is the youngest of five children and is used to bossing her siblings around. At her annual visit to the pediatrician last November, her doctor pressed her stomach during the examination and felt nothing abnormal. Two weeks later, Jeneva woke up sick in the middle of the night and was in great pain in the morning. Her mother rubbed her stomach to soothe her and felt a hard knot on her right side. They went to the emergency room, where several scans, an x-ray, and an ultrasound revealed a large tumor on her kidney.

“Our doctor told us it looked like a Wilms tumor and advised us to start her on the standard treatment. That meant several rounds of chemo to shrink the tumor,” recalled Jeneva’s mother, Shauna. “But it was growing so fast that I wanted it removed. They respected my wishes and scheduled surgery a week later.”

During an eight-hour surgery, doctors removed the entire tumor and her right kidney. A biopsy confirmed it was a Wilms tumor and also showed it to have an anaplastic histology. This means that the cells’ nuclei are large and distorted, making the tumor harder to treat. Because of this finding, Jeneva had 30 weeks of chemotherapy and full stomach radiation after recovering from surgery.

“Most Wilms patients don’t have this unfavorable trait,” explained Jeneva’s father, James. “The anaplastic cells grow much faster, and there is a higher chance of recurrence after treatment is over.”

Throughout her treatment, Jeneva has been a regular fun-loving child. There are times she doesn’t feel well, but she seems to bounce right back and will give her family a thumbs-up when she’s ready to play again. Her mother describes her as resilient and strong. While they will be vigilant to monitor Jeneva after treatment, Shauna and James refuse to live in fear.

“I’m hoping and praying that this treatment works, and we have no relapses,” Shauna said. “But because of what I’ve read and been told, I won’t be surprised. That isn’t me being negative – it’s like having a spare tire in your trunk. You don’t want to have a flat, but the spare means you are prepared if it happens.”

Jeneva will have scans every three months, and her parents will be on the lookout for fevers, bumps, and any unexplained sickness. While this journey has involved many hard days, there have also been some beautiful moments.

“It’s been a sad journey, but it has also been heartwarming to receive such love from family, friends, and even strangers,” Shauna said. “CURE is an organization that has been with us from the very beginning. We have never felt that we are alone.”

Mark Myers In CURE Childhood Cancer, Events

What it Means to be a Quiet Hero

CURE: What is it like to be a mother walking through childhood cancer?

CURE: What was your first impression when you got the invitation to A Tribute to Our Quiet Heroes?

CURE: Did you enjoy the event?

CURE: What was your biggest take-away?

CURE: Are you excited about Quiet Heroes being in person again?

CURE: What would you tell a mom whose child has recently been diagnosed with cancer?

CURE: What would you tell a mom who might be hesitant to go to Quiet Heroes?

Mark Myers In CURE Childhood Cancer

It’s Personal

Every member of the CURE staff is whole-heartedly devoted to our mission. Each person understands the gravity of our work – children are literally depending on our success. However, for some CURE staff, the fight against childhood cancer is intensely personal. Seven have been in that unimaginable place – seated across from a doctor completely unprepared to hear those awful words: “Your child has cancer.” Each journey was unique, yet these seven emerged from their experiences changed – and forever committed to fight the disease that tormented, and in two cases, took their children.

“Although Mitchell was diagnosed 18 years ago,” said Lisa Odendahl. “I have vivid memories of my world turning upside down with no warning. It makes me sympathetic to families whose kids are going through treatment. Every day I wish I could do more. But, I have reconciled the fact that I can offer a listening ear, encouragement to live in the moment, and a glimmer of hope beyond treatment.”

The ability to understand and offer support as only one who has been there can do is a common theme.

“I have stayed in the same rooms, eaten the same food, know the same staff, and have endured the same sleepless nights,” added Kerry Kavlie. “I have prayed the same prayers. All cancer journeys are unique, but there is a common thread throughout. I now get to be that ray of hope for newly-diagnosed families to offer a light at the end of the tunnel and to care for them when the treatment isn’t going how they had hoped.”

A sense of urgency was also forged by the bedside.

“I can’t unsee what I’ve seen,” said Mark Myers. “The treatment Kylie received was devastating and, in the end, ineffective. She told me to cure childhood cancer, and I am determined that when I look into a patient’s eyes, I can honestly say I am doing everything within my power to make things better for them.”

“My eyes had been opened to a disease that was plaguing children and ripping them from their families forever, and very little was being done to fix it,” explained Mandy Garola. “I wake up each day knowing that I’m working and fighting for children who can’t fight for themselves.”

The experience left many with a pressing need to make a difference for other children and families.

“I was somewhat clueless prior to Katie’s diagnosis. I didn’t know about lack of funding for research, lack of new medicines, or risks of secondary cancers,” Karen Rutherford recalled. “Once the dust settled from our battle, I knew I had to do something productive with what our family had just been through. I know I can’t cure cancer, but I can walk alongside another family battling, be a shoulder for them to lean on, help serve a hot meal, and raise money for the vital research needed.”

We are often asked if our experience makes our job hard.

“It is sometimes so hard to see those sweet bald heads,” said Jenny Wilkins. “I always want to rub a bald head like I did Catie’s. I never do because it’s such a personal thing. But if I close my eyes, it takes me back. And while my work at CURE is focused on events, I still have the opportunity to meet amazing kids and families and that reminds me that God can use the suffering I’ve been through by allowing us to be there for and help others.”

“People always ask me how I can do what I do,” offered Kerry. “It isn’t always easy, but the good days far outweigh the bad. Giving back is not an obligation, it is a privilege. It is putting yourself aside, diving head-first into the trenches, and not turning back.”

“There are certainly difficult, heartbreaking days,” added Mandy. “But when I think of the children we’ve lost and the potential they possessed, it’s easy to press on. I’m better off having known these precious kids in the first place. I’m honored and humbled to be a part of an amazing organization like CURE.”

“For so many of us, this fight is absolutely personal,” explained Kristin Connor. “Nothing about it is a ‘job.’ We all know from our very difficult experiences that our children deserve better. They deserve the chance to grow up and pursue their dreams. We have to do what we can to ensure that happens. It’s not optional; we all feel compelled to lock arms and fight this fight together.”

There’s something special about the CURE staff, no doubt. We won’t stop fighting until every child is guaranteed a cure… after all, it’s personal.

Mark Myers In CURE Childhood Cancer

A December to Remember

The bulletin board at CURE typically holds announcements and a letter or two. Tucked between the refrigerator and water cooler in the breakroom, it is rarely seen by visitors to the office. It’s really just for us. But in December, it came alive with pictures, notes, and cards and became a stark reminder of the lives we are touching because of the generosity of our donors.

Along with many sweet holiday wishes, one note says:

“My family dearly thanks you for your help with our utility bill last month. It could have meant less food, waiting for winter jackets, or quite a small Christmas for our family of 6. But you stepped in. You’ve truly blessed us.”

Another family in treatment benefited from our Holiday Angels program and wrote to say:

“Thank you all for looking out for my family this Christmas, because this year was NOT looking like a Christmas for us at all, but because of the CURE program we will have one.”

Tacked between warm letters such as these are pictures of children we met as bald patients who now are healthy and participating in life as a child should. Through the cards from families who have lost their children, we are reminded that our work is still not done; but we’re heartened to know that CURE remains a part of their family’s life and holiday traditions.

In that season of giving, you allowed us to do so much for families distressed by childhood cancer. During the month of December, we served nearly 1000 meals to patients and their families in treatment, including a special Christmas Eve meal at both campuses of Children’s Healthcare of Atlanta. Imagine the impact of a warm meal and a smile to those stuck in the hospital instead of at home for the holidays.

Imagine also being a parent balancing the high cost of treatment with your children’s wish lists. CURE donors stepped up to tip the scales and became Holiday Angels. Throughout Georgia, our donors provided gifts for 101 families whose Christmas or Hanukkah gift giving was unlikely. Between our little cancer fighters and their siblings, 300 children experienced holiday joy with gifts from their lists.

More than 125 families attended amazing holiday parties in Atlanta and Savannah, where children decorated gingerbread houses, made slime, ate snacks, and got to sit on Santa’s lap. Most importantly, they were able to take a break from the worries of treatment and enjoy the merriment of the season. One parent wrote:

“Our sweet girls had so much fun at the holiday party. They enjoyed the day and will remember the fun times. All the princesses and Spider Man were a hit and the girls enjoyed talking to Santa”

None of this would be possible without the generous support of donors like you. As we settle into a new year, we’re heartened to know your support didn’t end in December. You are with us all year long, and from the bottom of our hearts, we are thankful.

Cure In CURE Childhood Cancer

An Inside Look at CURE

By day, Kevin Kennedy works as a vice president with Morgan Stanley in the Institutional Securities Group. But if you have the chance to speak to him, he likely won’t want to discuss market information, strategic thinking, or challenges with listed derivatives trading technology. No, Kevin will tell you about his family, share pictures from his latest motorcycle adventure, or bring you up to speed with his other passion – helping children with cancer.

Kevin and his wife, Margaret Ann, had a first-hand experience with cancer when their eighteen-year-old son, Joe, was diagnosed with aplastic anemia, a rare bone marrow failure disease. Joe enrolled in a clinical trial at the National Institute of Health in Bethesda, Maryland. While the trial was not successful for everyone, it worked to send Joe into remission. Once in remission, Joe was abruptly released from the hospital. Weak from the treatment, Joe was unable to fly commercially or drive back to Atlanta. Kevin shared their dilemma on Caringbridge, and within an hour he had five offers to transport his family by private jet.

“I had seen people in need while we were in treatment. But that day showed me just how much people want to help children and their families,” Kevin recalled. “I couldn’t believe that people – many of whom we didn’t know – were making such kind offers.”

Upon arriving home, Kevin and his daughter attended CURE’s A Tribute to our Quiet Heroes luncheon in September 2007. Touched by what he saw there and the people he met, the Kennedys began fundraising and regularly attending CURE events. From the outside, Kevin felt that the organization was sound and well-managed. The more his family’s involvement increased, the more respect he developed for CURE. So five years later when he received a call from a CURE board member to discuss Kevin’s interest in serving on the board of directors, he jumped at the opportunity.

“I was thrilled to grow my relationship with CURE,” said Kevin. “But I did have a nagging little fear that when the curtain was pulled back and I drilled into the details, it would taint my perception of the CURE I had come to love. Fortunately, what I found out impressed me as I witnessed the heart of CURE come out in everything the staff did. I grew to love the organization even more!”

Because he had first-hand knowledge of the needs of patients and their families, Kevin immediately dove into CURE’s patient and family services programs. He also became an active part of the organization’s fundraising efforts and took a leadership role with the board governance committee. Later he served as board president for two years.

“As president of the board, I was able to dig even deeper into the inner workings of CURE. I saw the good, bad, and the ugly. Fortunately, there was more good than anything,” Kevin explained. “The staff and board of any organization have to work hand in hand to ensure success. The effort demands a well-orchestrated partnership. In my years on the board I truly enjoyed working with Kristin and the team, and I thought we all worked together very well.”

As Kevin prepares to rotate off the board, he reflects on his service, “I have loved my time on the board. Besides the rewarding work, over the years I have had the opportunity to meet many interesting and influential individuals and have made great friendships,” Kevin shared. “I’ve never been star-struck in my life, not until I had the opportunity to meet the Aflac Duck at CHOA!”

As he looks to the future, Kevin sees elevating the CURE message above other well-deserving charities and donor retention as two of the biggest challenges. He also views millennials and other non-conventional givers as a huge opportunity.

“No one will question what we are doing,” Kevin insisted. “Our cause is just and our organization is sound. We just have to be persistent and keep telling the story. I will miss being involved with the day to day workings of CURE.”

We will miss you too, Kevin.

Cure In CURE Childhood Cancer

The Difference You Made: CURE’s Fiscal Year Comes to an End

With the close of CURE Childhood Cancer’s fiscal year on June 30, 2016, we are eager to share with you the incredible difference you made over the past 12 months for children with cancer and their families. With your help, we raised more than $5.2 million to advance our mission!

This year, CURE awarded nearly $2.7 million in grants to support research initiatives all with the goal of improving survival for those battling childhood cancer. We are focused on moving the needle ever closer to a cure for all children with cancer and advancing immunotherapies and other treatments which are safer and less toxic for children. Our grants funded 20 pediatric cancer research labs at top institutions around the country.

Supporting patients and their families is paramount to us, and you enabled us to do this well.

In total, our busy patient and family services team – with the help of dedicated volunteers – served dinner to 2720 and lunch to more than 6000 hospitalized patients, parents, siblings, nurses and survivors. They delivered 638 brown bag lunches to parents of hospitalized children in Atlanta and Savannah, more than 1060 snack bags to patients and families in Atlanta, Savannah, Augusta and Macon and 342 toiletry bags. More than 300 families received CURE totes at diagnosis full of practical items and tips from other families who have walked the childhood cancer journey. We assisted 229 families with emergency financial assistance grants totaling $114,747, and provided $20,000 in transportation assistance to 44 families. We distributed an additional $14,395 in gas, grocery and pharmacy cards.

CURE recognizes the incredible psychological and emotional hardships of childhood cancer and offers families the opportunity to receive professional counseling. In the last year, we provided 56 counseling sessions. We also hosted more than 100 parents at bereavement weekends.

Families let us know the difference this support made to them. One mother wrote, “Thank you for all you have done during this difficult time in our lives. Without your help, many donations, meals, gas cards, Publix grocery cards and financial support when we had no money… we would have never made it this far. We are utterly indebted to your organization and plan to pay it forward as you have graciously shown us how to.”

We also hosted fantastic holiday parties in both Atlanta and Savannah and provided holiday assistance to 76 families, ensuring their holidays were special. And so much more – all because of you!

We could not do what we do without the help of each and every one of you. YOU are CURE and we are so grateful.

Cure In CURE Childhood Cancer, Family & Patient Support

CURE’s Partners in Caring Counseling Program

At the heart of CURE Childhood Cancer is the desire to address the critical and urgent needs of families affected by childhood cancer. CURE recognizes that childhood cancer is an extremely difficult, traumatic diagnosis, in which treatment and outcomes put strain and stress on the entire family. To offer additional support, help and encouragement for families of children diagnosed with cancer, we connected with licensed counseling centers across the state of Georgia and launched CURE’s Partners in Caring (PIC) program in 2013.

The PIC program was designed to provide families’ access to professional counselors who understand how childhood cancer, and its experiences, can affect the psychological and emotional well-being of the entire family. Since the launch of the PIC program we have continually strived to break down barriers associated with accessing counseling services. Our PIC network includes 24 centers and over 50 therapists across the state of Georgia!

Accessing the PIC benefit therapists is an easy process. To qualify, families must have a child who meets one of these qualifications:

Diagnosed with a childhood cancer, LCH, HLH, or aplastic anemia
Relapsed with a childhood cancer, LCH, HLH, or aplastic anemia
Passed away due to childhood cancer, a cancer-related circumstance, LCH, HLH or aplastic anemia

The PIC program provides up to ten (10) counseling sessions at a minimal cost to families. Additional details:

If you choose to utilize these counseling services, CURE will pay 100% of the first session.
After the first session, families are responsible for $25.00 copay for each additional session (sessions 2-10).
Counseling sessions may range from individual counseling for the patient, siblings and/or parent to marriage counseling, grief counseling, or any combination of these services.
You also have the option to divide the 10 sessions between multiple family members based on your family’s needs.

To sign up or learn more, contact Karen McCarthy at [email protected].

Cure In CURE Childhood Cancer

CURE Executive Director Kristin Connor Named Atlanta Magazine’s “Women Making a Mark” Honoree.

Each year Atlanta Magazine recognizes “Women Making a Mark,” placing a spotlight on women from our community who exhibit tireless dedication, strong leadership and impassioned goodwill. We’re thrilled to announce CURE Executive Director, Kristin Connor, was just named one of this year’s Women Making a Mark honorees. Please enjoy a transcription of the article, which is available on-stands now.

“Kristin Connor didn’t know an unborn child could get cancer. The successful business litigator was thirty-three weeks pregnant in 2001 when an ultrasound revealed a mass on her son’s tiny spine. Brandon was diagnosed with neuroblastoma at one month old. At age two, he was set to undergo a complex surgery to remove the tumor. But the day before the operation, a last-minute MRI showed nothing short of a miracle. The tumor has simply disappeared.

Now the executive director of Atlanta nonprofit CURE Childhood Cancer, Connor still has no explanation for her family’s happy ending. (Brandon is now 14 and thriving.) But it was other family’s stories she couldn’t shake – like a friend whose child suffered thirty rounds of chemotherapy, only for the cancer to return weeks later. “I thought, ‘This is madness. We have to stop this madness.'”

She started pressing the American Cancer Society for more funding for pediatric cancers (the vast majority of national cancer research dollars go to adult forms). A mutual friend arranged a meeting with Tom Glassine’s wife, Chris; the Hall of Fame pitcher tapped Major League Baseball to raise $2 million for the cause. That feat earned Connor a job with CureSearch, a national childhood cancer nonprofit. A year and a half later, Atlanta’s CURE Childhood Cancer contacted her about its top post.

In her decade long tenure, Connor, forty-seven, has furthered CURE’s mission of offering financial assistance, counseling, meals, and other support to affected families. But she has also built a research juggernaut. With the help of her board of directors, she has increased CURE’s annual investment from $200,000 to $2.5 million to recipients such as the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta and the Vanderbilt-Ingram Cancer Center at Vanderbilt University. Advances in these laboratories could lead to a 100 percent cure rate for childhood cancers in as soon as twenty years, Connor says. And that would let all families have their happy ending.”