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Mark Myers

Protecting your Health: Immunizations in Cancer Survivors

By Karen Effinger, MD, MS | Children’s Healthcare of Atlanta

 

Vaccines have become a hot topic with the introduction of the new COVID-19 immunizations. News cycles are filled with information about vaccination rates and the hope these vaccines promise. However, for many people, along with hope comes fear. While the COVID-19 vaccines are new, questions about immunizations are not. Survivors and their families often have questions during and after cancer therapy. It’s always important to talk to your oncologist or pediatrician if you have questions about vaccines.

Vaccines are generally safe. However, people with a weakened immune system can get sick from live virus vaccines. Guidelines say to avoid live virus vaccines during cancer therapy and for at least three months after chemotherapy and two years after a bone marrow transplant (BMT). If patients remain on immune suppression due to graft-versus-host disease or after a solid organ transplant, they typically are not given live vaccines.

Other non-live vaccines are safe, even for patients receiving cancer therapy. However, the immune system may not react the same and give lifelong protection if people are receiving cancer therapy. For this reason, we typically do not give vaccines to patients receiving cancer therapy except for the flu vaccine. Because cancer patients can become very sick from the flu and may respond to the vaccine, we recommend the flu vaccine every year even during treatment.

It is important for cancer survivors to catch-up on missed vaccines after they complete their therapy. Survivors should ask their oncologists when it is safe to restart immunizations (usually 3-6 months after chemotherapy.) For survivors who underwent a BMT, immunity from prior vaccines is typically lost. Therefore, vaccines need to be repeated. The BMT team gives families instructions about when it is safe to start this process based on national guidelines.

The approved COVID-19 vaccines have been found to be safe in adults and have been recommended by the American Society of Clinical Oncology. There is no preference for specific vaccines. However, survivors with an allergy to PEG-asparaginase should not receive the Pfizer or Moderna vaccines due to concerns for allergic reactions. The Johnson & Johnson vaccine does not contain PEG and should be safe. Patients should talk to their oncologist or pediatrician for more information.

While all vaccines are important, the HPV (human papillomavirus) vaccine is one of the few vaccines that prevents cancer. HPV is a virus associated cervical, anal, and oropharyngeal (mouth/throat) cancers and genital warts. Most people will be exposed to HPV at some point in their lives; however, many people will clear the virus without developing cancer. Recent studies have shown that childhood cancer survivors are at increased risk for developing cancer from HPV compared to those who did not have childhood cancer. For this reason, we strongly recommend that survivors receive this vaccine, and the Children’s Oncology Group includes HPV vaccination in their guidelines for survivorship care. Vaccination can start as early as nine years of age and is recommended through 26 years of age. If survivors have questions about any vaccinations, they should talk to their primary care provider or oncologist.

 

Karen Effinger, MD, MS

Dr. Effinger specializes in pediatric oncology survivorship, and in the late effects of childhood cancer and stem cell transplantation.

2021 Research Grants

CURE CHILDHOOD CANCER PROUDLY ANNOUNCES MORE THAN $3 MILLION IN RESEARCH GRANTS

When CURE’s fiscal year began, we were squarely in the midst of the COVID-19 pandemic and couldn’t begin to predict how the year ahead would unfold. As circumstances became more dire for many families we serve, we quickly realized we needed to invest more funds in supporting our patients and families. At the same time, revenue was declining as the pandemic forced us to cancel events and hold others virtually. While we were confident that our priority needed to be helping families through these extraordinary times, we did not want to let up on research support. How would we be able to do it all, we wondered? Our community answered by giving generously to ensure critical research could move forward even in the pandemic.

Thanks to you, CURE is delighted to announce more than $3 million in research grants for the 2021 fiscal year!

Our research priorities are clear. First, we prioritize research that is likely to reach the bedside within five years. Second, we focus on research that will improve the outcomes for the 20% of children not surviving today’s methods of treatment. In furtherance of these goals, we continue to prioritize precision medicine and advancing the Aflac Precision Medicine Program at Children’s Healthcare of Atlanta.

Four years ago, our funding made the Aflac Precision Medicine Program a reality. The results in these four short years have been dramatic. Since its clinical introduction, genetic sequencing of tumors has provided actionable results in 78% of the patients – meaning that the information obtained through this sequencing impacted the treatment of 78% of the children in some way. What an extraordinary impact this sequencing makes. CURE’s investment of $1.8 million this year will allow the Aflac Precision Medicine Program to provide genetic sequencing for more children in addition to going deeper with the genetic testing – in other words, analyzing even more genes that may be contributing to tumor growth. CURE’s Precision Medicine grant will also enable research into racial and ethnic differences which may affect a child’s outcome. With our funds, scientists will explore and identify the immune factors that contribute to racial and ethnic differences in outcome. This exciting research will significantly impact children of all races diagnosed with cancer now and in the future.

We are again funding the training of three future pediatric oncologists through our Fellowship Program: Dr. Frank Chien, Dr. Robert Lisac (Sam Robb Fellow), and Dr. Sanyu Janardan (Connolly Family Fellow). By funding their training, we remove financial impediments and allow the fellows to focus on research and care of children fighting cancer as they begin their careers.

Your generosity allowed us to do even more than we believed possible. In addition to our precision medicine initiative and our investment in the fellows, CURE is also funding eight individual research projects aimed at solving difficult to cure cancers. Our 2020-2021 Pediatric Cancer Research Initiative includes the following studies:

Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta

Waitman Aumann, MD     
The role of SIX1 in CALM-AF10 and other t-cell leukemias

Deboray DeRyckere, PhD
Nanoparticle delivery of MRX-2843 for treatment of pediatric leukemia

Robert Castellino, MD
Identifying and targeting therapeutic vulnerabilities in DIPG

Henry Curtis, PhD
Delineating the impact of anti-Galectin-9 immunotherapy on t-cell all epigenetics and survival

Shahab Shubin, MD, PhD 
Deciphering the oncogenic potential of LIN28B in group 3 medulloblastoma

Karen Effinger, MD, MS
Evaluation of vestibular dysfunction in survivors of childhood cand adolescent cancer treated with platinum-based chemotherapies

Swati Bhasin, PhD  
Therapeutic targeting of single cell RNA Seq derived t-all blast signatures

Children’s Hospital of Philadelphia

Michael Chorny, PhD
Combination Therapy of Neuroblastoma Using Co-drug Impregnated Nanocarriers

Madison Has a Purpose

Her voice is soulful, powerful, and angelic. When you hear Madison sing, you would never believe a voice like that could come out of a petite 21-year-old. You would also be surprised to know that five years ago, doctors found a tumor the size of a golf ball on her brain.

Her cancer fight started with a headache that came and went for three weeks. At the time, Madison was balancing life as a high school cheerleader and member of the golf team while maintaining a very high grade point average. She and her mother, Jennifer, were walking into a store when Madison stumbled and complained of a horrible headache.

“I asked if her headache was back,” Jennifer said. “She told me it had never completely gone away. I didn’t think much of it until she got sick the next morning.”

As a doctor of physical therapy, Jennifer knows more about the body than the average parent. The symptoms together had her worried, so she took Madison to the emergency room.

“I didn’t tell her because I didn’t want her to panic, but I felt like a brain tumor was a possibility and wanted to have them rule it out,” Jennifer recalled. “As we drove, her right arm started to go numb, and when we got there, her right leg became unusable.”

The emergency room staff rushed her to get a CT scan, and the doctor brought the news almost immediately. Madison had a tumor called anaplastic ependymoma on the left side of her brain. She was immediately flown by helicopter from Braselton to Children’s Healthcare of Atlanta. Because this type of tumor grows rapidly, Madison had surgery to remove it three days later.

An analysis of the tumor found it to be grade 3, meaning it is malignant and carries a 30% chance of recurrence. After healing from surgery, Madison had proton radiation for eight weeks. She will have to have regular MRIs of her brain and spinal cord for the rest of her life, but fortunately, her scans have been clear for five years.

“Madison has both physical and emotional scars,” Jennifer said. “Her treatment left her with PTSD, trauma, anxiety, and hallucinations caused by medication. Because of this, she wasn’t able to sleep alone until she got an emotional support dog named Toby. But our family believes we go through experiences such as this for a purpose, and Madison is finding hers.”

In fact, Madison founded a nonprofit called Purpose. Her goal is to comfort children in treatment by sending them a nightlight, a note of encouragement, and a stuffed dog that looks like her labradoodle. She is also finding purpose in her budding music career.

Madison has written 13 songs, including one entitled Superman, which is about being diagnosed with a brain tumor. While she sometimes finds this song disturbing to play because it brings back the trauma of her experience, she does want to tell her story to raise awareness and funds to help kids going through treatment.

“I won’t say God gave me cancer for a reason,” Madison said. “But I will say God brought me through cancer being mostly whole in a way that many children aren’t. I have a purpose.”

Madison is uniquely talented, and the world is starting to take notice. You can listen to her sing on Instagram. Big things are ahead for this amazing young lady.

A Letter from the Robb Family

Dear Friends,

Some say that you die twice in life. Once when you take your last breath, and a second time when someone says your name for the last time. We are grateful that, in the 14 years since Sam took his last breath, we, along with so many others, are continuing to say his name and honor his memory.

As time has passed, we have been able to remember Sam and smile. As a family, we reflect on our favorite memories and share stories that make it seem like June 25, 2007 was just yesterday. But we are approaching another milestone, and with that milestone comes the hard truth that this fight is not over.

The average age of a child diagnosed with childhood cancer is six, and their battles with cancer can last for years. Doctors and nurses are pivotal in the success of each child’s diagnosis and battle with cancer. Sam was especially grateful for the care and support of his doctors, particularly Dr. George and Nurse Erika. They exemplified the immense value of having a medical team dedicated to supporting each child beyond the routine treatment. We are so grateful they were there for Sam, and their example motivates us to continue our work to support Childhood Cancer Research through the Fellow Program at Emory University School of Medicine.

Since founding the Sam Robb Fund in 2007, we have been able to fund six Sam Robb Fellows. We are grateful for your ongoing support, especially this year, as the world has been grappling with the coronavirus. Your generosity enables us to support our fellow and keep Sam’s memory alive.

We hope to gather in the upcoming year. Many blessings to you and your families,

Sam, Annamarie, Liz, Caroline, and Katherine

PS: It is a rare blessing to find a new picture after so long. But we found this picture of Sam recently and wanted to share it with you, our friends.

 

Surviving and Thriving

In 2010, Rachel Wang was excited to start first grade. She loved reading, arts and crafts and enjoyed every day until early October when her parents noticed that she looked very tired and pale. They thought she might be wearing herself out with her new schedule but decided to take her to the doctor anyway.

“When we got to the pediatrician’s office, Rachel’s hemoglobin was so low that we were sent right away to the hospital,” recalled Rachel’s mother, Amy. “The next day, our sweet Rachel was diagnosed with acute lymphoblastic leukemia.”

Rachel had a port put in her chest to administer chemotherapy, and her treatment began right away. She went into remission quickly but had to endure the standard treatment, which lasted two and a half years.

“Rachel was strong girl and didn’t have major side effects,” said Amy. “When she wasn’t in the hospital, she was in school and seemed to feel pretty good. We know that we were very lucky.”

During that time, Rachel’s community and school were incredibly supportive. Rachel liked to wear sparkly hats to cover her bald head, and all of the girls in her class decided to wear the same hats so that she wouldn’t feel left out. Her teacher made sure the boys were able to encourage her also and got them “fight back” camouflage hats to wear! Even though it was a difficult time, Rachel has a lot of good memories of all the notes friends wrote to her and the support she received.

“Rachel stayed as active as possible during her treatment,” Amy said. “She always enjoyed sports and she started to focus on tennis at that time.”

As it turns out, she is very good at it. She just finished her junior year and played for the North Gwinnett High School team that won its region and advanced to the state playoffs. Rachel was undefeated this season and recently received the Al Parker Award for Junior Player of the Year by USTA Georgia. She also excels off the court. She won the Positive Athlete Regional Award this year and has been awarded the President’s Volunteer Service Award each year since sixth grade for performing more than 200 hours of community service each year.

“Rachel wants to give back and serve others,” said Amy. “She has been very active in school and has volunteered with organizations that assist children with cancer. Rachel has worked to raise money and awareness for childhood cancer and plans to continue to do so in the future.”

 

 

June is National Cancer Survivor Month and an opportunity for all cancer survivors to celebrate their milestones and recognize those who have supported them along the way. Our goal at CURE is that every child diagnosed has the chance to live out their dreams like Rachel, and we are thrilled to see her thriving!

Running with Hannah

As a soccer and tennis player, 14-year-old Hannah Hazen is athletic and used to pushing her body on the playing field. When she started complaining about breathing difficulties, her parents assumed it was due to typical exertion. But when she experienced the same issue on a day she didn’t play a sport, they became concerned.

“We went to our pediatrician and then to the hospital for an x-ray,” Hannah’s father, Brian, said. “We thought we would hear something in a day or two, but the hospital called two hours later and told us to pack a bag and come back.”

The x-ray revealed a mass in Hannah’s chest near her trachea. She was admitted to the Pediatric Intensive Care Unit because the doctors worried the tumor might shift and cut off her airway. After a biopsy she was moved to the pediatric oncology floor where Hannah was diagnosed with Hodgkin’s lymphoma.

“In those first 48 hours as Hannah was being diagnosed, we were overwhelmed and exhausted,” Brian said. “Then late one evening, the nurse walked in with a delicious dinner provided by CURE. While it sounds so simple, it was one less thing for us to worry about and allowed us to remain by Hannah’s side.”

The standard treatment for Hodgkin’s lymphoma is decades old. But research is finally starting to reach the bedside, and Hannah’s oncologist, Dr. Bergsagel, recommended she enroll in a clinical trial to add a new drug called brentuximab vedotin to her treatment. This immunotherapy drug has been used to treat adults for years and has only recently been available to children.

“The treatment will last for six months instead of four,” said Brian. “But the new drug reduces the toxicity of the chemo, so Hannah will have fewer long-term side effects. Even with the extra two months, it really made sense for us.”

Hannah is on round three of twelve and is doing great so far. She has experienced relatively mild side effects such as bone and nerve pain. The whole family has adjusted to life in treatment and has felt fantastic support from their Dunwoody community. When the virtual Lauren’s Run and CURE Childhood Cancer Annual Picnic rolled around, their neighborhood really stepped up. They formed a team in honor of Hannah and started inviting people to join and give.  Ironically, Brian used to work for NCR, which was Lauren’s Run presenting sponsor several years ago.

“I had run the race two or three times in the past,” Brian said. “I knew it was for a good cause back then, but I never knew the whole of it until cancer hit home.”

Friends originally set a goal for Team Hannah of $2500. But people gave enthusiastically and generously, and by race day, Team Hannah had raised more than $13,000! On May 2, the day of the virtual Lauren’s Run and CURE Picnic, about 75 people gathered in the Hazen’s front yard to run and walk together on a 5k route that friends mapped out. Hannah hasn’t been able to play soccer or tennis, but she had a ball running the 5k with so many people cheering her on.

“Hannah’s a great all-around kid,” said Brian. “It is heartwarming and a little overwhelming to have all of these people come out and support our girl. Our community has been amazing.”

All told, more than 600 people participated in the virtual Lauren’s Run and CURE Picnic. Groups gathered all over Atlanta, as well as in Texas, Ohio, Colorado, and even South Africa. Most importantly, Lauren’s Run and the CURE Picnic raised more than $260,000 for childhood cancer research, so kids like Hannah can receive safe and effective treatments which will allow them to thrive!

Because of Joseph

Joseph Lee was known for being tenacious and funny. Even when circumstances in his life seemed to conspire against him, he always maintained hope, faith, and his sense of humor.

When he was twelve years old, a bump on his forearm caused Joseph’s parents to seek medical attention. Initially, his doctor thought it was a cyst of some kind. But his parents sought a second opinion which later revealed a diagnosis of rhabdomyosarcoma – a type of cancer that affects muscle tissue.

Initially, his doctors recommended surgery to amputate Joseph’s arm. But surgery, chemotherapy, and radiation worked to eliminate the tumor. Joseph celebrated clean scans for several years. He also celebrated life in special ways.

“Joseph was my only sibling, and we were very close,” said his sister, Rachel. “During his cancer journey, he taught me to be grateful for life’s little things. He had such a kind spirit and loved to encourage others because of the unique perspective cancer gave him.”

Joseph inspired others with his motto, “keep fighting… and living – as normally as you possibly can.” After treatment ended, Joseph demonstrated his tenacity on the football field as a running back. He worked hard to graduate high school and was accepted into the University of Georgia. But cancer had other plans. Joseph’s cancer returned and spread to the lymph nodes of his left arm.

After he beat cancer again, Joseph went on to study criminology at UGA, walk on the football team, and later work in the Cobb County Police Department. In 2018, he was working as a government contractor in Kuwait when his cancer came back again and forced him to return home.

“He declined rapidly when he got home,” Rachel recalled. “One day he was having trouble speaking but called my name clearly as I was leaving his room. When I turned around, he held up praying hands and bowed his head as a gesture of thanks. That made me feel a special peace, and I knew he felt peaceful, too.”

Joseph Lee passed away on May 9, 2018, at the age of 29. His family has been involved with CURE in many ways over the years, but Rachel went a step further in 2020 by joining the Young Professional Leadership Council. The YPLC is a group of dynamic and emerging leaders in the Atlanta community with a passion for and commitment to advancing CURE’s mission. Rachel hopes to combine her experience as a Digital Transformation Privacy Program Manager at Chick-fil-A and her passion for fighting childhood cancer to help provide better options to children with cancer.

“I am impressed with the work CURE has done to achieve better treatments for kids,” she said. “But there is a long way to go, and I hope together we can raise money for research that will make a difference.”

To further that effort, the YPLC is hosting the 5th annual Spring Fever on June 12 at Guardian Works at Echo Street West. This event will feature live music, delicious food, unforgettable cocktails, and an incredible silent auction. In the past four years, Spring Fever has raised $400,000 to assist families in their battle with pediatric cancer as well as support critical research. You can learn more about Spring Fever by clicking the image below or visiting curespringfever.org.

Crucial Members of the Team

While we rightfully acknowledge and applaud the doctors and nurses who care for the precious patients we serve, they aren’t the only members of the healthcare team who work so hard to return children to health. This month, we celebrate two important members of the team who don’t always get the recognition they deserve.

March is Social Work Month, and a social worker is an essential resource for a family fighting pediatric cancer. Kristin Frazier has been a social worker at Children’s Healthcare of Atlanta for 11 years. Her focus is on children fighting leukemia or lymphoma, and she works with families from the moment of diagnosis.

“Our primary role is to provide emotional support,” Kristin said. “It’s hard to think clearly when you’ve just been told your child has cancer. So I will visit with them often in the beginning to act as a bridge between the medical team and the family to make sure they understand the plan.”

Balancing life and cancer treatment can be a nightmare, so the second aspect of the social workers’ job is logistical. Families have to quickly learn how to manage things such as school for the patient and siblings, insurance, work, and finances. Social workers connect families with resources needed to cope with all of these newfound pressures. CURE is one of those resources.

“The cost of cancer treatment is so high it can affect a family of any income level,” said Kristin. “CURE is responsive to any need we identify, from emergency financial assistance to lodging and counseling. Being able to reduce the stress of a family in treatment is huge.”

Kristin said the ultimate win in her job is seeing a child finish treatment and ring the bell. But even during tough days, there are things that encourage her.

“Seeing a child who pushes through things that are really hard or watching a family come together to make difficult decisions is gratifying.”

March is also National Child Life Month. A child life specialist wears many hats in the patient journey. Becca Doobrow has been a child life specialist at Children’s Healthcare of Atlanta for four years. As a youngster, she raised money for children fighting cancer and knew she wanted her life’s work to be in pediatric oncology.

According to Becca, there are five main roles that the child life specialist plays.

  1. Decrease anxiety and fear when a patient is admitted and to help normalize the hospital setting through play and therapeutic activities.
  2. Help children cope through medical procedures and provide a distraction as the procedure gets started.
  3. Make a child feel empowered by explaining their diagnosis and treatment in terms they can understand.
  4. Help connect siblings throughout the hospital experience, which has been incredibly difficult during the pandemic.
  5. Provide bereavement and legacy-building opportunities for parents should the worst happen.

“Watching a child you’ve been working with since diagnosis ring the bell is incredibly fulfilling,” Becca said. “But it is very rewarding when I help a child who is really scared about a procedure cope with their anxiety.”

Ultimately, her goal is for the patient to gain the skills to cope with procedures and treatments on their own. Even if the child can cope, there is still room for a child life specialist.

“I try to be a consistent part of the patient’s treatment,” Becca said. “I want to do one fun little thing with all of my patients every day to bring them up.”

There are many members of the team that make sick children well. This month, we recognize and thank the social workers and child life specialists who work with the patients and families we serve.

Get After Leukemia

Hank Steed’s college career started off with a bang. Early in his second semester, Hank began suffering from a headache. When it lingered a couple of days, he decided he should get a COVID test. As the pain intensified, he went to an urgent care facility that sent him on to the emergency room.

Hank attends Mercer University in Macon, which is about two and a half hours away from his hometown of Bowdon, Georgia. Since he was alone, his father, Noah, was advising text while he waited to see what was wrong.

“The hospital ran a few tests and everything came back okay except they told him his white blood cell count was elevated,” said Noah. “While he was waiting for more results, he got word that his COVID test was negative. At that point I got in the car to be with him because I knew we were looking at something more serious than a headache.”

As soon as Noah arrived at the hospital, a hematologist sat he and Hank down and told them that Hank had t-cell leukemia. Due to his age, Hank was transferred to an adult hospital in Atlanta to begin treatment. But this form of leukemia is typically considered a childhood disease. So on the advice of their family doctor, Hank and his family opted to accept an offer to transfer to Children’s Healthcare of Atlanta.

“It’s a little weird being in a children’s hospital,” laughed Hank. “But because of COVID, I would have had to go through treatment alone at the adult hospital. I don’t think I could have handled that. Sometimes it’s nice to be treated like a kid, and this is definitely one of those times.”

As he started treatment, the family moved from shock into fight posture.

“I knew right away that I wanted to get after leukemia, and not just my case,” said Hank. “I want to get after it for every kid.”

As friends and neighbors asked how they could help, Hank decided to raise money by selling t-shirts. His hometown community and friends in college bought more than 400 of them, raising $3000. Since he met CURE while being served meals in the hospital, Hank planned on donating the money until his father had another idea.

“I explained the concept of leverage to Hank,” Noah said. “I told him that he could donate that money, or he could use it to make more money by issuing a challenge to our community to match their donations up to $3000.”

Hank’s fraternity brothers & little sisters

So Hank issued the challenge and reached his goal almost immediately!

“It’s been insane,” Hank said. “We keep getting donations from friends, family, schools, and even complete strangers. Our community has been great. Just seeing all the love and support we are getting is overwhelming at times.”

Hank finally got to go home after his initial hospital stay. He had to withdraw from school because of his diagnosis and has a long treatment ahead. His treatment calls for intensive chemo for 6-8 months, but he is hopeful that he’ll be well enough to re-enroll in school in the fall. Until then, he’ll have some time to work on plans to beat leukemia for good!

If you want to help Hank get after leukemia, you can donate by texting “hankstrong” to 44321.

Raegan’s Playground

Raegan lived life on her own terms. She was sweet and spunky and loved unicorns. Her parents never knew how much of a fighter she was until she had to be.

She was thriving in kindergarten when she began suffering from minor illnesses that wouldn’t go away. After shuffling back and forth to appointments and different kinds of testing, Raegan was finally diagnosed with a pediatric brain tumor called DIPG.

“To say your life can change in the blink of an eye, four letters, DIPG, completely devastated our family,” recalled Raegan’s father, Marc. “We had never heard of this disease, and what we learned broke our hearts.”

Marc and his wife, Andrea, would soon learn that DIPG is a rare brain cancer for which there is no known cure. As if that wasn’t bad enough, Raegan had the worst possible genetic mutation and was given a prognosis of 6-9 months. Both Marc and Andrea work in the medical field and began scouring the internet for information and potential clinical trials.

“We shut down everything,” said Marc. “Our entire focus became about saving Raegan’s life.”

They found three clinical trials at St. Jude’s in Memphis, but by the time they arrived, two of them had closed and the third had little information available. So they packed up and came to Children’s Healthcare of Atlanta, where there were open trials that looked promising. There they met CURE.

“When we first got admitted to the Aflac Cancer Center, we were given one of the CURE tote bags,” said Andrea. “We were going through so much right then that I was very touched to feel like someone was thinking of us.”

At the same time they were facing this monumental battle, friends and fire departments around the country began to “Rally for Raegan” by posting pictures of support and contributing to a fund meant to help with Raegan’s medical expenses.

The first clinical trial worked well for seven months. But in January 2020, Raegan began to show symptoms of progression. When they came back to Atlanta for radiation, the COVID-19 pandemic hit, and the family was forced to stay in a hotel for twelve weeks. During this time, Raegan started a new clinical trial funded by CURE. She continued this treatment for five months until her tumor again showed progression.

“This all showed us how much of a fighter Raegan was,” said Marc. “She had already lived way beyond her diagnosis, and her doctor said, ‘I can tell you what we expect, but this is Raegan we’re talking about.’”

Sweet Raegan passed away at home during a tropical storm on November 8, 2020. She outlived her original diagnosis by nearly a year. And, oh how she lived.

“Raegan never stopped smiling and laughing,” said Marc. “She turned everything into her playground. The trials we went through weren’t failures because they bought us time to be with her, and every moment was precious.”

Marc and Andrea returned to Atlanta recently to pay it forward for the support they received during Raegan’s treatment.

They wanted to pay it forward to the organizations that cared for them during Raegan’s treatment. So they split the remaining funds between CURE, the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta, and the Winship Cancer Institute where she received radiation. Despite losing Raegan, they are dedicated to advancing research that will lead to cures for children with cancer.

After their experience, Andrea shared advice for parents of newly diagnosed children.

“When your child is diagnosed, it knocks the air out of you,” she said. “Once you catch your breath, start doing your own research. There may be other options out there and new treatments on the horizon. I have no regrets. The trials gave us 18 good months, much of which we wouldn’t have had. Keep fighting every day.”

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