fbpx Skip to main content
Category

Uncategorized

Carter’s New Diagnosis

Last September, five-year-old Carter woke up from his nap acting very strange.

“He was giggling, acting goofy, and couldn’t walk straight, “described his father, Brad. “Honestly, if I didn’t know any better, I’d have thought he was drunk.”

Brad and his wife, Becky, were so alarmed that they took Carter to an urgent care practice, then to the emergency room. After testing, the original thought was that Carter had some kind of viral infection causing brain inflammation which triggered the abnormal behavior. A prescribed steroid treatment seemed to work. But after a week off of the steroids, the same strange behavior started again.

After more comprehensive testing, Brad and Becky were told that Carter had a brain tumor around his thalamus. The thalamus relays information from the brain to the rest of the body. Pressure from the tumor caused it to misfire, sending strange signals across Carter’s nervous system.

The original diagnosis was a low-grade glioma, so Carter started low-dose chemotherapy immediately. Through CURE’s Precision Medicine Program, his doctors also sent a sample off for genetic sequencing to see if they could learn more about his tumor and develop a personalized plan to treat it.

Even a low dose of chemo can leave harsh side effects, and Carter was no exception.

“In January, we pushed up the date of his MRI because he was going downhill,” explained Brad. “That showed that he had hydrocephalus – fluid on his brain that was likely caused by chemo. He got a shunt installed, and the pressure was relieved in about a week.”

The results of his gene sequencing came back and proved very interesting and helpful. Carter’s tumor was a high-grade glioma, meaning the treatment he had already endured was unlikely to have cured him. The tests also revealed a mutation that is very different than the mutation 90% of high-grade glioma patients have. However, this mutation is common in lung cancer patients, and there is a drug that is successful in inhibiting its growth. Carter began radiation therapy combined with the inhibitor, and the results have been fantastic.

“Carter has very minor side effects from this treatment, and his latest MRI showed that his tumor is stable,” said Brad. “We are so thankful for precision medicine. Doctors can now target his specific mutation instead of annihilating his little body with chemotherapy that most likely wouldn’t have worked.”

Carter recently celebrated his sixth birthday and started first grade. Because of the treatment, he has had to adjust slightly but has adapted well and is enjoying life again. He’s playing with his brother, riding his bike, and getting dirty… just like a boy should.

You Made September Golden

Every September, we celebrate Childhood Cancer Awareness Month, and it quickly becomes a month of continuous buzz for CURE. There are so many components that our staff, partners, and volunteers stay busy all month long. We loved the constant events and activities and watching so many people get involved. You have been the biggest part of September’s success! We would like to share a little of what you did for children with cancer.

The month started in grand style at Dragon Con. CURE was selected as their charitable partner for 2023, and we had so much fun participating. Everywhere we went, we saw attendees and exhibitors raising money in creative ways. Then Con matched donations up to $125,000. In total, Dragon Con contributed a whopping $272,875!

Maybe you saw or purchased this year’s garden flag, helping to line streets and neighborhoods. While the flag was a small investment, we heard from many families whose children are currently fighting cancer that seeing these flags all over town made them feel so supported and uplifted. The flags also raised $215,216 to fight childhood cancer.

Every day, we shared the stories of three remarkable childhood cancer heroes through CURE’s Kids. Many read them faithfully and couldn’t help but be moved and inspired. The journeys of these heroes motivated many to give, and CURE’s Kids raised $113,000 to fund life-saving research and support families in the fight.

Our September partners stood with us to drive awareness and raise funds. Our supporters filled their plates with burgers, burritos, sandwiches, chicken salad, cookies, pies, ice cream, Italian ice, and cookie dough to benefit CURE. Fortunately, yoga, CrossFit, and martial arts classes offered ways to stay fit while supporting CURE. Several businesses encouraged patrons to join our Coins4CURE campaign and raised $36,000. From jewelry and coffee to hardware, clothing, teeth cleanings, and haircuts, a variety of businesses made it their mission to put children with cancer on center stage. Thank you to old friends and new ones who joined us.

Dozens of schools showed their energy and spirit through Gold Out games. These games shared awareness of the issues surrounding childhood cancer, and many raised much-needed funds to fight against it. Some honored specific heroes in their community with moving tributes.

September has shown us that our message resonates within the community, and it’s all thanks to you! Your contribution, no matter how big or small, has made a significant impact, and we are incredibly grateful.

Pirate Tales and Prosthetics: Alaina’s Unstoppable Sense of Humor

It doesn’t take very much time spent with Alaina to realize that she is hilarious. She is a joker who radiates positivity and has a sunny disposition despite going through a very difficult year.

Alaina started having severe knee pain early in the summer. Within a few days, it hurt so bad that she couldn’t walk. Her parents took her to the emergency room, where soon she was diagnosed with a bone cancer called osteosarcoma. The treatment plan consisted of eight rounds of chemotherapy to shrink the tumor, followed by amputation, and then eight more rounds of chemo to prevent the cancer from returning.

The amputation Alaina had is called rotationplasty – a unique surgery where the knee is removed and the ankle is rotated and reattached to the thigh to serve as a knee. Once fitted with a prosthetic, this new “knee” offers the broadest range of motion. During the operation, surgeons removed most of her femur but were able to save the tibia, and most importantly, they removed the entire tumor.

Alaina’s mom, Mary, recently shared, “So far in our cancer journey, we have had hard times and good times. We have had good days and days where we have slept all day. Days we have met some amazing people and days when we have learned so much. We have laughed, we have cried, we have even asked why. But we know with God’s help that she will ring that bell!”

Alaina has such a positive attitude and is determined to walk as soon as possible. There are milestones of flexibility she has to reach to get her prosthetic. Although physical therapy is grueling, Alaina is working hard and is far ahead of schedule. She wants to get out of her wheelchair and learn to walk with a prosthetic.

In the meantime, she works on pranks to play on people. Her newest party trick is to bring her foot to her mouth – she says that surprises everyone the first time. She also loves showing people her scar and creates stories about how she got it. Sometimes, she will say she was the victim of a shark attack or that she’s a pirate. With Halloween coming up, none of her family or friends would be surprised to see her dress up like a pirate. But with her sunny demeanor, she will likely be the smiliest pirate to roam the seven seas!

CURE is the Charity Partner of Dragon Con 2023

Dragon Con is the largest multi-media, pop culture convention focusing on science fiction & fantasy, gaming, comics, literature, art, music, and film in the universe – and the best place to celebrate all of these things with fellow fans on Labor Day Weekend.

August 31 – September 4

Atlanta, GA

Every year, Dragon Con raises money for designated charities throughout the convention via auctions and other events. In order to raise the most funds possible for our designated charity each year, they host several charity events throughout the show, including main auctions on Saturday and Sunday afternoons.

CURE Childhood Cancer has been selected as Dragon Con’s charity partner for 2023! Please join us at the event and support their efforts to make a difference in the lives of children fighting cancer.

For more information, visit https://www.dragoncon.org/.

Counseling Leads to a Better Place

In the summer of 2020, Paul and his family were enjoying a mountain vacation. Although he had been experiencing intermittent leg pain, he never let it slow him down, and he didn’t complain. So when an x-ray revealed a tumor in his right femur, his parents were shocked.

“We thought Paul had a muscle injury, or possibly a bone infection,” Paul’s mother, Charlotte Marie, said. “We weren’t prepared to hear the words cancer or Ewing sarcoma.”

More bad news came as further testing revealed more than 100 tumors in Paul’s lungs and a lesion on his spine and left femur. After nine rounds of chemotherapy, his lungs were clear, and the tumors on his left femur and spine were gone. The next step in his treatment was surgery to remove half of his right femur and replace it with a telescoping rod that will expand as Paul grows. Following the surgery, Paul endured more chemo and radiation until he was declared cancer-free in June 2021.

“Paul put his head down and handled treatment very well,” shared his father, Jonathan. “We had a goal of getting to the finish line of treatment, and we focused 100% of our energy on that day. What we weren’t prepared for was the day after.”

After a year of being entirely consumed by Paul’s health, Jonathan and Charlotte Marie began to take stock of the unseen toll of his treatment. They describe Paul as an “old soul” who was slightly stoic before cancer. But his experience increased that stoicism. He has also become very protective of his family and doesn’t want them to feel sad. So he tries to manage his own emotions so no one worries about him.

“In many ways, his innocence was stolen from him,” Jonathan said. “Instead of going to kindergarten, he was getting a port placed in his chest and beginning chemo. That’s a lot for anyone to deal with, much less a six-year-old.”

Paul’s parents turned to CURE for help, and Paul now works with a therapist to help unlock his feelings about his cancer experience and to learn how to express his emotions. It seems to be helping him greatly. But Paul wasn’t the only one who needed support.

“We started seeing a counselor through CURE’s Counseling Program,” said Jonathan. “Everything about the year in treatment hit us, and we weren’t prepared to process it all. It has been very helpful to carve out an hour to talk to someone who can help us work through these things. We also get to hear each other’s side of the trauma.”

“I feel like we woke up after treatment ended and had to deal with a great many issues we had buried while we focused on getting Paul better,” added Charlotte Marie. “I’m glad we weren’t alone and had a third party help us resolve these things. It’s been a truly invaluable resource. Jonathan and I are in a better place because of the counseling we’ve done.”

After working through a couple of very traumatic years, the future is looking much brighter for Paul’s family. Jonathan and Charlotte Marie would encourage others to seek counseling when needed as everyone can benefit from help processing such a terrifying and stressful experience.

If your family has been impacted by a childhood cancer diagnosis, we would love to be a counseling resource for you. Through our Counseling Program, we make sessions available for patients, parents, and siblings. Click the button below to learn more.

LEARN MORE

Thank you, South Georgia

We’ve been blown away this year by the generous people of South Georgia. You have shown your overwhelming love and support for children with cancer in so many ways. When we’ve called for volunteers, you raised your hands. As we’ve needed toiletry, meal, and boredom buster bags, you put them together and brought them to us. And when we’ve hosted events, you showed up and gave your all. We are so excited to announce that our four events in 2023 have raised more than $869,000 to fund lifesaving research and support local families devastated by a childhood cancer diagnosis. We can’t thank you enough!

Shell Out for a CURE is an oyster roast event in Richmond Hill, Georgia. The close-knit community comes together every year to raise money for children with cancer. This year the evening honored two local kids, Kai and Kaia. They touched everyone’s hearts as they shared their cancer journeys with us. Besides the delicious oysters and the fixings, attendees enjoyed live music, a raucous action, and an evening of fellowship. Through the generosity of sponsors, ticket sales, and auctions, the event raised $89,317.

Catie’s Gathering Events are special dinners featuring unique, individually themed table decorations, a silent auction, a live auction, and a moving program. Our first of 2023 was Catie’s Gathering Savannah, and it did not disappoint! The room was filled with extravagantly decorated tables such as Barbie’s Dreamhouse, Gaga for a CURE, and Curing Little Cuties, and the attendees dressed up to match their themes. The highlight of the night was a hilarious bidding war for the head table, which ended up going to the highest bidder for $25,000! The night raised a total of $255,706 to fight childhood cancer!

After three years, Catie’s Gathering Statesboro came back better than ever! The Statesboro community welcomed CURE in full swing with the first annual Catie’s Gathering Golf Tournament, followed by a lovely Catie’s Gathering dinner. The table settings were worthy of a museum exhibition – from a pickle jar/pickleball theme to groovy tie-dye roses. After dinner, guests were treated to a sweet performance by Anna Hayes Polk and inspiring words from Greyson Kennedy, both local childhood cancer survivors. The two events raised more than $137,000 in the fight against childhood cancer.

The 13th annual Catie’s Gathering Effingham, was a beautiful night when the Effingham community came out in force. The moving program included an inspirational message from Melodie Wall about her brave son, John, and his journey with leukemia. After Melodie finished speaking, she invited her family to the stage so they could sing together. There wasn’t a dry eye in the house. Effingham businesses and schools continue to support our cause, as evidenced by the fact that there were an astounding 59 sponsors for the event! Thanks to the generosity of donors, sponsors, and supporters, Catie’s Gathering raised $387,000 this year!

Jersey Mike’s Month of Giving

CURE Childhood Cancer is joining forces with Atlanta area Jersey Mike’s Subs for the 13th Annual March “Month of Giving” campaign. During the month of March, customers can donate to CURE at participating Atlanta-area Jersey Mike’s restaurants.

The Month of Giving campaign will culminate with Jersey Mike’s “Day of Giving” on Wednesday, March 29, when local Jersey Mike’s restaurants will give 100 percent of the day’s sales – not just profit – to CURE.

On Day of Giving, local Jersey Mike’s owners and operators throughout the country will donate their resources and every single dollar that comes in to more than 200 different charities including hospitals, youth organizations, food banks, and more.

This March, Jersey Mike’s hopes to exceed last year’s record-breaking national fundraising total of $20 million and help local charities striving to fulfill their missions and make a difference.

“I would like to extend a personal invitation to you and your family to visit Jersey Mike’s Subs throughout the month of March, and especially on Day of Giving when 100 percent of sales – every penny – goes to help a great local cause,” said Peter Cancro, Jersey Mike’s founder and CEO, who started the company when he was only 17 years old.

Throughout March, customers can make donations through the Jersey Mike’s mobile app or onsite. On Day of Giving, Jersey Mike’s restaurants will donate their resources and every single dollar that comes in — whether in-store, on-line, or through the app.

Since Month of Giving began in 2011, Jersey Mike’s has raised more than $67 million for local charities! Click HERE to find a Jersey Mike’s near you.

 

Big Goals & a Big Heart

Patricia started her new year with big goals and a big heart.

The Austin, Texas, native has always enjoyed running. She ran cross country in high school and often runs with her father. But in 2023, she plans on stretching her runs even further. She signed up for the Steamboat Marathon in June and is starting the training that will get her to the finish line.

“Running is my happy space,” Patricia said. “I like the mental aspect of it and have always wanted to do a marathon.”

While she is in great shape already, she’s not running just for herself. She’s also running for a little girl named Claire and other children with cancer. Patricia earned a Master’s Degree in Education with a concentration in Special Education. During her first year of teaching, three-year-old Claire was one of her students. They immediately became close, so Claire’s diagnosis was devastating to her.

“Claire was diagnosed with DIPG, which is a brain tumor with a very poor prognosis,” Patricia explained. “She came to school as often as she could. But after four months, she wasn’t able to. So for the next four months, I would go to her home to spend time with her. We didn’t really have a teacher/student relationship. They welcomed me into their family.”

Sadly, Claire passed away after an eight-month fight. But she left an indelible mark on Patricia’s life. In fact, Patricia quit teaching and went back to school to become a play therapist. Play therapists help children to make sense of difficult life experiences or complex psychological issues through play.

“I had to come to school and explain Claire’s sickness to other students, and then I had to share when she died,” Patricia said. “I wasn’t equipped for that role, but helping children is what I’ve always wanted to do.”

Claire’s fingerprints are also all over Patricia’s marathon. An important part of her effort is raising money to fund research through CURE. She uses the hashtag #Morethan4forClaire

“When I learned that less than 4% of the federal cancer research budget goes to solving childhood cancers, I had to do something to help,” Patricia said. “It is incredibly difficult to see a child you love go through treatment. The least I can do is run a marathon to raise money.”

Patricia’s fundraising goal is $5000, and with more than five months to go, she’s already well on her way. So if you see her pounding out long runs on the streets of Austin, cheer her on. Better yet, click HERE and support her effort.

Quiet Heroes offers a Special Connection

Being a mom can be exhausting on the best of days. The effort required to keep every family member fed, clothed, clean, and delivered, not to mention happy, is exhausting. When you add a childhood cancer diagnosis, things can unravel quickly.

Kristen Hazen found out just how isolating a cancer diagnosis can be. Her fifteen-year-old daughter, Hannah, is a Hodgkin’s lymphoma survivor who was diagnosed during the COVID-19 pandemic. She finished her treatment in October 2021 and is doing great today. One thing that Kristen missed out on was getting to know other parents dealing with cancer treatment.

“When you’re in this unfortunate club, you want to share your feelings and fears with other people who understand,” she explained. “I didn’t get to be around other moms. In fact, last year’s A Tribute to Our Quiet Heroes was the first time I got the chance to sit down with moms like me.”

CURE created A Tribute to Our Quiet Heroes to be a haven where the moms of children with cancer can rest and lay down their concerns for one afternoon to enjoy laughing, pampering, and a unique sisterhood. The luncheon honors more than 250 mothers, many of whom come straight from the hospital to attend.

Kristen (center) with two new friends at Quiet Heroes

“Once we got through the introductions, our conversation around the table was very meaningful,” Kristen said. “It was a place where I felt understood, and we were able to offer validation, support, and encouragement to each other. This was the first place where I felt completely comfortable sharing my journey.”

Kristen admits that she was a little hesitant to go since she didn’t know anyone who would be there. But she found a quick and solid connection very quickly.

“To that mom who might be worried about going, I would encourage her to take that step and attend,” Kristen said. “You will be surrounded by like-minded ladies and will build bonds quickly. I am so glad I went and look forward to this year’s event.”

Quiet Heroes is a special place of rest like no other – and not just for the moms of children with cancer. This luncheon is the perfect time to share a relaxing and inspirational afternoon featuring radio host and Quiet Hero Jenn Hobby as emcee, keynote message by comedian, life lover, and inspirational speaker Derrick Tennant, and a special performance by American Idol season 12 winner Candice Glover and the SCAD HoneyBees.

Make plans to attend the Quiet Heroes luncheon on Saturday, March 25, at Flourish Atlanta. For more information and to purchase tickets, visit quietheroes.org.

Lorelai and Precision Medicine

You are the reason a child is alive!

When Lorelai couldn’t perform tasks typical for a four-month-old, like rolling over or holding her head up, her parents became very concerned. They took her to the hospital, and a CT scan showed an enormous tumor on her brain. Lorelai had a high-grade glioma, a fast-growing tumor that spreads quickly and has a dire prognosis.

Despite risky surgery and six months of toxic chemotherapy, the tumor continued to grow.

Because traditional treatments were failing her, Lorelai’s doctors turned to CURE’s donor-funded Precision Medicine Program for answers. A sample of her tumor was sent for genetic analysis, and a specific mutation was identified. Fortunately, a drug exists that targets this mutation and stops tumor growth.

The results saved her life.

After two months of this new therapy, the residual tumor drastically reduced in size. Lorelai is now progressing in her age-related milestones, and with physical therapy, she is developing as she should. Her mother, Kathryn, said:

“This drug has been revolutionary for us.
It is essentially why my child is alive today.”

Your generosity to CURE gave Lorelai a most precious gift – the gift of life. This holiday season, you can give kids with cancer a gift more valuable than any toy —their best chance to beat their disease.

Please give today to bring us one step closer to a world without childhood cancer.

DONATE

What Is Precision Medicine?

Every child is unique. Thanks to your support, their cancer treatments can be too.

Our focus on advancing the use of precision medicine to treat children with cancer launched in 2017 and has been our highest priority since then, with a total investment of $12 million.

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.

The vision of precision medicine is to provide personalized, non-toxic, and curative therapy for all children with cancer by genetically mapping a child’s tumor and targeting the problem mutations. To achieve this aim, genetic testing seeks to identify targets that allow doctors to create individualized treatments to destroy the mutated cells.

Since our focus on precision medicine began, 85% of the children who received genetic mapping with CURE’s funding found their treatments impacted by the information obtained. But the impact of precision medicine goes well beyond the child’s cancer treatment. Genetic testing can change a diagnosis or reveal a genetic predisposition to cancer that can affect a family for generations.