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Mark Myers

Keeping up with Zoe

Last year, Courtney Thomas sat snuggling her two-year-old daughter, Zoe, in her lap. As she rubbed Zoe’s neck, she felt an odd swelling. As a pediatric nurse, she knew something was wrong.

“My radar was already up because she was fatigued and had been fighting an ear infection,” Courtney said. “A few days later, my husband noticed tiny bruises on her collar bone. We took her to her pediatrician the next day.”

Bloodwork confirmed what Courtney had begun to fear. Zoe had leukemia. Ironically, Zoe became a patient in the very hospital where Courtney works as a nurse. Her initial hospital stay lasted 19 days. While they were inpatient, the COVID-19 pandemic began to rage.

“Her whole treatment has been during the pandemic, and it adds a layer of worry,” said Courtney. “During one of her hospital stays, I was seven months pregnant. At the time, only one parent could stay with her. It’s tough to be that pregnant and alone while trying to entertain and care for a sick toddler. Being away from home so much has been difficult for her and her older brother, Arlen.”

Courtney has since delivered a healthy little boy, and Zoe is thrilled to be a big sister. Zoe is now in the maintenance portion of her treatment. She takes oral chemo pills nightly and goes in once a month for a chemo infusion. But Zoe’s treatments often make her immunocompromised, and with COVID still around, life has yet to return to normal.

“We are incredibly thankful for friends delivering meals and helping us around the house,” said Courtney. “But the isolation has been hard. We miss being able to go to church and visit with friends, and sometimes we feel isolated or even forgotten.”

While the pandemic has caused Courtney and her husband, T.J., to feel alone at times, they met a new friend in the hospital who has made a big difference. Courtney said:

“CURE has been here for us from the very beginning. As soon as we were diagnosed, we were given a CURE tote which included basic toiletries, which was appreciated since we weren’t admitted until after 8 pm. We also realized very quickly what an enormous blessing the Open Arms meals are. Having food served to us took away a great deal of stress because it was one less thing to worry about.”

“CURE has also been a huge support for us out of the hospital as well. The Quiet Heroes event came right after we had gotten back home from the hospital and was such an uplifting and encouraging experience for us both. I began to realize that we are not alone – we are now a part of a huge tribe of people, parents who love their children fiercely and will all fight for these kids and support one another together.”

Lastly, we have been so thankful for the counseling services CURE offers. CURE found a counseling group that has experience helping families going through childhood cancer and covered the cost of our counseling sessions. We have been able to take advantage of these services to be sure we are processing and handling the stress and change well and openly communicating about how we are feeling and know that how we are feeling is okay!”

All of this support has meant so much to them that, even though Zoe is still in treatment, the Thomas family has sponsored Open Arms meals for families of hospitalized kids. And as for Zoe, she is feeling much better and is back to singing, dancing, and trying to keep up with Arlen. It’s been a year since her diagnosis, and her treatment will continue until June 2022. While that seems like a long time, the entire family has learned that mixed in with the tough days will be some really good days.

Ring the Bell Twice

When children get to the end of cancer treatment, ringing the bell to signify its end is perhaps the most joyous celebration of their lives. That wasn’t necessarily the case with 13-year-old Lily Stuckey. For her, ringing the bell after two and a half years of harsh treatment was a mixture of joy and sadness.

At the very end of 2017, Lily had been sick and had some visible knots on her neck. Even stranger, when a rare dusting of snow fell in her hometown of Savannah, Georgia, Lily didn’t have the energy to go outside to play.

“I honestly thought she was being lazy,” recalled her mother, Kelli. “It seemed like she was setting me up to try to stay out of school when the snow cleared.”

But a fever took her to the local emergency room where doctors discovered Lily had leukemia. She started chemotherapy right away and was plagued by “rare” side effects.  She lost weight on steroids, suffered with neuropathy in her feet and hands, and spent a month in intensive care because of brain swelling. Fortunately, Lily went into remission very early and stayed there, although the harsh side effects of treatment continued.

While Lily was plodding through treatment, another young lady in the same town was also diagnosed with leukemia. Described as sassy and spunky, Kylie Shiell became a friend almost immediately. Kylie and Lily hit it off so well, in fact, they even plotted to ensure they could get chemo infusions at the same time. As their friendship grew, they became a force to be reckoned with.

“When Lily got admitted, the doctor put on her chart that the girls couldn’t see each other because they both had fevers,” Kylie’s mother, Ashley, said. “When the doctor did rounds, the girls stood on either side of the hallway and cornered him to complain about his attempts to keep them apart.”

Lily and Kylie talked every day about life and their cancer journeys. In fact, they laughed about the hospital’s privacy rules.

“One time, we were in the room together and the doctor didn’t want to talk about me in front of Kylie,” Lily shared. “I told him, ‘You know we tell each other everything, so you might as well say what you’ve got to say.’”

Kylie overcame everything cancer threw at her. But an infection caused bouts of extreme pain and ultimately took her life on November 13, 2019. Lily was devastated and wrote a moving letter that was read at Kylie’s memorial service.

“She was the only one who understood what I was going through,” Lily said. “I miss her every day.”

When Lily celebrated the end of treatment, she rang the bell not only for herself, but also for her friend who she will carry in her heart forever. Of course, Kylie’s family was there to watch and celebrate the milestone with Lily.

“We wouldn’t miss it,” Ashley said. “We’re all family now.”

 

 

Getting Khairi Back on the Field

Khairi loves baseball. He doesn’t even mind the bumps and bruises that result from playing hard. But when he was four years old, something odd happened. He got hit in the eye with a ball, and his mother, Michella, expected swelling immediately. But it didn’t come. In fact, it was days before the shiner appeared, and it lasted for nearly a month.

Unbeknownst to Michella, the reason Khairi’s eye didn’t swell was because his platelet count was dangerously low. Soon after that incident, he began to lose weight and got several unexplained fevers. The second time Michella had to leave work to get him from school, she took him to the hospital for evaluation.

“The nurse took a blood sample,” Michella recalled. “Then she came back and took another. After a few hours and two more samples, I knew something was wrong.”

Michella’s family has a history of lupus, so she imagined this might be the cause. But when a team of six doctors, including an oncologist, came into the room, her world was shattered.

“They told me Khairi had leukemia,” she said quietly. “It’s a lot to hear that your baby has cancer when you’re all by yourself. I had to leave the room so I wouldn’t break down in front of my four-year-old.”

Soon Khairi was whisked away for blood transfusions to get his white blood cell count down, followed by surgery to place a port for chemotherapy. In a few days they learned that Khairi had acute myeloid leukemia (AML). His plan included seven rounds of intense chemo, with a break to recover in between each round. But it took Khairi’s body a long time to recover every time, and he rarely got to stay at home more than a few days.

Fortunately, Khairi was cancer-free after his final treatment and got to ring the bell at the hospital, a special tradition at the end of treatment. Michella had been forced to take a leave of absence from work, so they went home to rebuild their lives and get back to normal. But normal was short-lived. After a routine follow-up visit months later, Khairi’s doctor called them with the devastating news that the cancer was back.

“I was so angry,” Michella said. “I went back to work and thought we were finished. I never had one thought that this would come back and had let my guard down. When I got that call, I was lost.”

With just five days left in his first grade school year and a few baseball games left in the season, Michella let Khairi enjoy his school awards ceremony. Then she took him to the hospital where he began the process of a bone marrow transplant. The transplant went well, but Khairi reacted to the pain medication and was rushed to intensive care.  After he recovered and went home, he had some issues with graft versus host disease – a condition where the new bone marrow cells attack the recipient. But Khairi is strong and is pushing through it all.

“He’s finally doing pretty well,” Michella said. “Khairi has a long way to go, but we keep working through it all for each other.”

Khairi takes eighteen medications a day and is isolated because his immune system is so compromised. His transplant was a year ago, and he hopes to be back on the diamond playing baseball again soon. And with everything he’s been through, he will definitely be the strongest kid on the field.

Be the Light

Emily Riedinger and Caroline Paris have been best friends since the fifth grade. While they met in school around many other kids, they quickly became inseparable and have been ever since. Somewhere along the line, they saw a video in which a girl talked of how inspired she was after finding ways to give back to her community. Both girls were touched and immediately began forming plans to do charitable work.

At the time, Caroline’s older sister Natalie was finishing up her leukemia treatment. The girls felt a natural draw toward helping children with cancer and, at Natalie’s suggestion, looked into what they could do for CURE.

“We found out we could assemble Boredom Buster Bags that would help kids during long hospital stays,” Emily said. “I mean, I get bored just being at home sometimes. I can’t imagine how bored I would get if I had to be in the hospital for days on end.”

So the two of them engaged their community and put together bags full of games and activities to entertain a child in the hospital for treatment. They got such great joy out of making these bags that they did it again the following year.

“When she was in treatment, Natalie got several of these bags from CURE,” Caroline said. “They really helped her through some long and difficult days.”

Making Boredom Buster Bags has now become a tradition, and the girls have also made snack bags, toiletry bags, and more. The past few years, they got their local Target, Kroger, and CVS involved to make bags and donate supplies. In December, Target on Windward Parkway put together forty bags as an employee project and added these to its donation.

Since they had been inspired by the video they saw in middle school, Emily and Caroline wanted to share the joy of giving back with kids their age. That led them to a new endeavor to raise funds – t-shirts that said, “[be the light.]”

“By buying t-shirts, the kids got something out of it,” Caroline said. “It makes people feel like they’re a part of something big when they see others wearing them around school.”

While they’ve been inseparable for seven years, they’ll soon be going different directions. Caroline plans to study to become a physical therapist at Berry College, and Emily hopes to enroll in University of Georgia’s child psychology program. Unsurprisingly, giving back plays a part in Emily’s future plans.

“I’ve struggled with anxiety since I was young, and there was someone who really impacted me,” Emily said. “I hope that once I have my degree, I can help others like I was helped.”

We truly appreciate these two young ladies’ dedication to making hospital stays a little easier for the children we serve. They are certainly a “light” and good example for all of us.

 

An End in Sight

Tori has been through a lot in her 23 years. When she was just two, she fell at a family friend’s house and was obviously in a great deal of pain. At first, her parents assumed the pain was because of her fall. But an astute eye doctor noticed something else. Tori had a large tumor behind her eye and, her fall put pressure on it, which was the cause of her pain. She was diagnosed with stage 3 orbital rhabdomyosarcoma and began treatment immediately.

She had chemotherapy, radiation, and an 8-hour surgery to remove her eye and everything inside her eye socket.

“All-in-all, my treatment went pretty smoothly,” Tori recalled. “I wasn’t sick very often from the chemo and recovered from the surgery without pain medication. After it was over, I started to adjust to having a prosthetic eye.”

Tori naively believed that surviving would mean that she would be able to leave cancer behind. But that was not to be. Because of the harsh treatments necessary to achieve a cure, many children experience a wide variety of side effects, which can be realized immediately after treatment or years later. For Tori, the damage done by her treatment began to manifest itself right away.

Tori had to wear braces on her teeth for ten years. She had multiple jaw reconstruction surgeries, wore upper dentures, and finally got dental implants. Because the scar tissue from her surgeries made it impossible for her prosthetic eye to stay in place, she also had several surgeries to build up her eye socket. Tori estimates that throughout her life, she has had around 100 reconstructive surgeries to rebuild her face. That can be very hard on a girl at any age, much less as she is coming of age.

“The situation caused a lot of self-esteem and anxiety issues for me in school,” Tori said. “I wore my hair over my eye during high school so people couldn’t see. In college, I sucked up my anxiety and wore an eye patch. Most people were nice about it, but of course, some people stared or had a question or comment.”

Things have gotten a lot better for her over the last few years. She finally got a working prosthetic eye and dental implants that have boosted her confidence. While she has missed some school because of her surgeries, she is currently studying nursing with a minor in psychology at Kennesaw State University. She hopes to become a pediatric oncology nurse practitioner at Children’s Healthcare of Atlanta, where she spent most of her youth in treatment.

“I really want to use my experience to help kids,” she said. “Growing up is already hard enough as it is, and I want to be able to put them at ease when they’re in the hospital and to show them that they’re not alone. Having someone who’s been through what they’re going through helps both the child and the parents.”

For all she’s been through, Tori has an amazingly positive outlook.

“It took a lot of faith and the support of my family and real friends to get here,” Tori said. “It’s taken a long time, but things are getting better now because I can finally see the end.”

Madeline and Precision Medicine

At the age of two, Madeline’s fine motor skills were in the lower 5% range. She had more baby fat than most of her little peers, and an awkward gate when she tried to run. Her family was referred to several doctors, but never discovered the cause behind her issues.

“She fell down a lot and would cry no matter how hard the fall,” recalled her mother, Bethany. “We just thought she was sensitive, but her motor skills continued to fall behind children her age.”

Just after her third birthday, Madeline had terrible leg pain and refused to walk, so Bethany took her back to the hospital. Madeline’s blood work showed that inflammation markers were very high, so doctors ordered a total body scan. They found a football-sized mass in her abdomen that had smashed her bladder and pushed into her intestines, kidney, and liver.  A biopsy of the mass confirmed a diagnosis of neuroblastoma.

“The signs were there if we look back,” Bethany said. “Madeline wasn’t sensitive. She was probably the toughest kid around. Every one of those falls hurt her badly.”

Madeline began chemotherapy right away.  After two rounds, she was able to walk again. The chemo that proved effective at first slowly stopped working to shrink the tumor. A long surgery allowed doctors to extract 85% of what remained. Unfortunately, the tumor was too intricately woven into Madeline’s spinal column for complete removal.

Madeline was enrolled in the Aflac Precision Medicine Program (APMP) funded by CURE, and the results of her genetic testing were both interesting and useful. Madeline’s tumor had a gene mutation often associated with an aggressive form of neuroblastoma. But fortunately, the remnants of Madeline’s tumor have been stable. Knowing that Madeline has that particular genetic mutation will help doctors in the future should her tumor become active.

Another part of the APMP is the genetic predisposition program, which provides care for children who are at risk for developing cancer due to a cancer predisposition syndrome or a family history of cancer. Madeline’s younger sister, Sedona, has a known genetic disorder called hemihypertrophy. So she was referred to the genetic predisposition clinic to see if her genetic mutation was the same as Madeline’s. If a genetic link between the two was revealed, it might indicate that Sedona had a high risk of developing cancer in the future.

Although no link was found, the fact that both of their children have genetic disorders had an impact on the family as a whole.

“We’ve decided not to risk having additional biological children,” Bethany said. “If we want to grow our family in the future, there are certainly other ways to do so.”

With the mass removed from her stomach and cancer treatment behind her, Madeline is a completely different child. She loves climbing on the playground and using her body now that it works better for her. She rarely cries when she falls down, which proves she is one of the toughest four-year-old kids around.

Take the next step to support research that will help kids fighting cancer… Kids like Madeline.

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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. Lauren’s story shows how important this program has become.

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. “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.”

The first step in the process is getting the child’s genetic information. Since July 2018, more than 40 relapsed or high-risk patients have been enrolled in the Aflac Cancer Center’s Precision Medicine Protocol.

At CURE’s Board of Directors meeting in October 2018, Dr. Daniel Wechsler, Director of Pediatric Oncology at the Aflac Cancer Center, shared, “We have received sequencing results back so far on 36 patients. Several patients have had ambiguous diagnoses confirmed as a result of (genetic) sequencing, which has helped us choose appropriate therapeutic protocols. A couple of patient tumors have shown mutations that have directed us to specific clinical trials for targeted agents.”

Fully funded by a three-year grant from CURE Childhood Cancer, the APMP is well ahead of schedule. In this second year, thirty patients were expected to be enrolled in the program.  However, Dr. Graham and Dr. Wechsler report they have enrolled many more than that. The groundwork has now been laid for more and more children to benefit from this new area of science.

While information is the key to the program, it is also the most significant limiting factor. The sheer complexity of the human genome is overwhelming, and not many are people trained to interpret genetic data. Biological informatics is a growing field of study due to this demand, and the APMP is working with the best resources available.

Also, there are currently only a handful of pediatric cancer centers across the country which precision medicine programs and the volume of information being recorded by each is significant. Finding ways to share information is a challenge to progress. This is changing, however. Doctors from the APMP are working with Memorial Sloan Kettering in New York, Cincinnati Children’s Hospital, and other leading centers to develop collaborations and efficient ways to share data.

 

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.

Lendmark Financial Services Climbs On

Take away the stadium stairs, the track, and all the fun of Lendmark Financial Services’ annual Climb to CURE and you might think the event would fold altogether. Yet it did not. Despite the fact that the event looked drastically different this year due to COVID -19, the 2020 climb was the most successful to date. Its overwhelming success is a credit to the company’s leadership, teamwork, passion, and determination to make a difference.

Bobby Aiken and Chip Madren

The Climb to CURE is the brainchild of Bobby Aiken, CEO of Lendmark Financial Services, who watched one of his childhood friends struggle through his son’s cancer treatment. Chip Madren’s fight became an inspiration to Bobby.

“I watched Chip literally fight for his life and win,” he said. “Chip’s fight has made me a better person and has positively impacted many, many lives.”

Being an avid stadium runner, Bobby decided to combine his love of running stadium stairs and his passion for helping children with cancer. He created a company-wide fundraiser – the Climb to CURE. With his own commitment to contributing to better outcomes for children with cancer, Bobby inspired employees, partners, and vendors to join the fight. That was five years ago. Nationwide, Lendmark employees and partners gave and hosted mini-fundraisers. The effort culminated with an in-person stadium climb involving 200-300 people the first four years. Altogether, those efforts raised an amazing $1,843,000.

This year’s COVID-19 requirements of social distancing and limited gatherings forced Lendmark to change the format of the Climb to CURE. Instead of the traditional in-person stadium event, they created a seven-day virtual step competition and fundraising challenge.

“While the local offices missed the fun and spirit of getting together, this year’s format allowed branches from coast-to-coast to fully participate. Being virtual was a different dynamic that spawned a lot of creativity,” said Kelsey Treadwell, Lendmark’s Marketing Manager.

Lendmark has 366 branches across the country, and many of them raised money in traditional ways. But some held unique fundraisers perfectly suited to this unique year. In Princeton, Kentucky, the branch formed a partnership with an Auntie Anne’s truck which donated proceeds of pretzel sales. The Pueblo, Colorado branch organized a motocross race complete with sponsors and merchandise which raised $8,000. Employees in the Clarksburg, West Virginia branch hosted a bingo night. Even though they had to limit attendance to half-capacity, they were able to raise the highest total of any branch at $11,000!

The company also stepped up in a big way by creating an incentive raffle. For every $100 a branch raised, they received a raffle ticket. The winning branch received quite a prize: all employees get to attend the company’s Choice Awards next year in Scottsdale, Arizona. Lendmark’s partners and vendors continued their support of the company’s efforts by giving generously. To culminate the event, Lendmark held a virtual “climb”. Employees laced up their tennis shoes and walked 13,186,408 steps, totaling more than 6,500 miles. Incredibly, the Climb to CURE raised a record-breaking $617,195!

The funds raised by Lendmark support CURE’s Precision Medicine Initiative, which involves precise gene-based treatment. CURE is leading the way in advancing this innovative therapy. Our work would not be possible without Lendmark’s support.

“People want to know where their money is going, which is why we focus on precision medicine,” said Ethan Andelman, Lendmark’s Chief Marketing Officer. “We’ve embraced CURE and their Precision Medicine Initiative in the hopes that it becomes the first line of treatment for kids with cancer.”

In October, CEO Bobby Aiken made a stunning announcement: Lendmark’s goal for the 2021 Climb to CURE is $1 million! With the passion and dedication they’ve shown, Lendmark has proven there is no mountain they won’t climb for kids fighting cancer.

What Amaiyah Is Wishing For

Until early this year, Amaiyah had always led a very active life. She enjoyed hanging out with her three sisters, drawing, and praise-dancing at church. But in February she stopped acting like a typical seven-year-old. She slept more than normal, had little appetite, and got tired very quickly. Her mother took her to their pediatrician, who drew blood and diagnosed Amaiyah with mononucleosis. The doctor recommended that they schedule a follow-up visit in a month if she wasn’t feeling better. But Amaiyah continued to slow down and her symptoms only got worse. So in March, her parents took her straight to the emergency room.

When they arrived, Amaiyah’s blood sugar was at a level considered very dangerous, and she began going through an adrenal crisis. These symptoms indicated problems with the endocrine system, which is controlled by the pituitary gland. She was admitted to the hospital to stabilize her condition while doctors performed further testing.

The next day, the world began to shut down as COVID-19 took hold.

Imagine dealing with a sick child in the midst of a once-in-a-lifetime pandemic, with quarantines and social distancing. While Amaiyah’s family searched for answers, they worried that Amaiyah would be exposed to COVID-19 at the hospital and doctors’ offices they were visiting. They wondered how to keep her three sisters safe, as well.

After a week in the hospital, Amaiyah’s family got devastating news.

“The doctor finally came back and said she had a tumor pressing on her optic nerve,” said Amaiyah’s mother, Tequila. “The doctors informed us that she would need surgery in the near future, and they sent us home with medication to replace the function of the pituitary gland.”

Amaiyah’s surgery to remove the tumor took place on June 18. The tumor was wrapped around her pituitary gland, which regulates many of the body’s functions including blood sugar levels. A slice of the tumor was sent off to determine the type of cancer, and soon her family learned that she was fighting a malignant pure germinoma, a type of brain tumor that responds well to chemotherapy and radiation. After recovering from the surgery, Amaiyah had her port placed and began chemotherapy to shrink what remained of the tumor before moving on to radiation therapy.

“After her first chemo treatment, she did better than I expected,” said Tequila. “She was even able to eat afterward. But the chemo treatments have gotten progressively worse for her and recovery time takes longer.”

Knowing that the chemo would result in Amaiyah losing her hair, her mother, father, aunt, and even her grandmother shaved their heads in support. While the chemotherapy wasn’t easy, she knocked it out with only a few side effects. When she was with younger patients in the clinic, Amaiyah would even offer advice – telling them to remain still while receiving their treatment so the process would go faster.

Amaiyah’s next phase of treatment involved daily radiation at the Emory Proton Therapy Center in Atlanta. Proton therapy differs from standard radiation by delivering a beam of radiation that stops at the tumor instead of spreading beyond it like traditional radiation therapy, thereby reducing damage to healthy tissue. On the way to her appointments, she got a surprise when she saw herself on a CURE billboard.

“The first time we saw her face on the billboard, she almost missed it,” said Tequila. “We had to pull over and wait for the billboard to show her again. She was so excited to see herself up there!”

The proton therapy was a welcome relief from chemo and has been much easier to handle. Her energy level has been good, and Amaiyah’s family hopes to hear the words “No Evidence of Disease” very soon. Amaiyah is looking forward to being finished with treatment just in time to celebrate Christmas with her family. Being healthy again will be the best gift of all.

CURE is dedicated to conquering childhood cancer through funding targeted research while supporting patients and their families. Your gift of any amount will fund research that will allow kids like Amaiyah to live out her dreams.

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A Rain on Parched Hearts

Anna Hanger was an extraordinary young woman, wise beyond her years and generous beyond words. In June 2003, Anna was diagnosed with a brain tumor. Her treatment was long and hard, and she suffered many complications which caused her to be hospitalized for the better part of a year. While she achieved remission in 2004, it was short lived, and her cancer returned just months later. Doctors told her family there was no further treatment for Anna and urged her parents to quickly take a Make-A-Wish trip due to Anna’s poor prognosis and their concern that her quality of life would begin to decline quickly.

Anna and her parents did take a “final” trip. Anna was scheduled to have surgery two days after they returned. Prior to surgery Anna had an MRI. With tears in her eyes, Anna’s doctor shared the incredible results: Anna’s tumor was shrinking. Anna’s tumor continued to shrink over the next year. Although she remained cancer-free for many years, Anna faced several challenges in her young life.

No one would have blamed Anna if she became sad and angry as a result of her limitations and very serious challenges caused by the brain cancer and treatment. But that just wasn’t Anna. From the time she was diagnosed and received an outpouring of love and support, including gifts and cards from family and friends, Anna became very aware of the other children at the hospital who were not getting the same kind of support. It touched Anna deeply and was very hard for her to accept. In spite of the fact that Anna was almost completely deaf, had severe scoliosis from radiation treatments, significant balance issues, loss of feeling on one side of her face, and many other permanent disabilities, she became obsessed with finding a way to help the other children with cancer. The idea of Anna’s Angel Fund was born.

When people asked what they could do for her or what gifts they could bring her, Anna suggested they make a donation to her Angel Fund instead.

The Angel Fund gave Anna a way to help the children who touched her heart and also became something positive for her to focus on while facing her own battles every day. Anna maintained this fund for years, and of course, she insisted that all of her financial aid and gifts be made anonymously. Over the years, Anna raised and gave away more than $600,000 to children and families whose lives had been devastated by pediatric cancer. Anna found joy every day in making her gift of life count for other children. The fund was eventually retired, but Anna never stopped caring about and working to make life better for children with cancer.

“Through the generosity of its supporters, Anna’s Angel Fund will be a much-needed rain on their terribly parched hearts.”

In June 2019, Anna’s cancer returned, and she passed away in August 2020. Her parents, Larry and Lisa, recently faced their first Thanksgiving without their precious daughter. They drew on her grateful spirit and generous heart to get through.

“Throughout Anna’s life, and especially during her battle with cancer, we’ve expressed just how precious it has been to embrace gratitude,” Lisa shared. “Even now as we face the hardest days of our lives and struggle to learn to live without Anna, gratitude and grace sustain us.”

It is in that same spirit that her family has revived Anna’s Angel Fund as a Named Fund of CURE. All funds received will be directed towards CURE’s patient and family support programs.

“Reviving Anna’s Angel Fund is what Anna would want,” Lisa said. “Donations to the fund are directed toward CURE’s patient and family support programs because families fighting cancer are trapped in thoughts of mounting bills, loneliness, and fear of what the future holds. Through the generosity of its supporters, Anna’s Angel Fund will be a much-needed rain on their terribly parched hearts. In that way, our sweet Anna will still be making life better for children with cancer and their families.”

A gift to Anna’s Angel Fund will help to continue her legacy of caring for and helping families of children with cancer.

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Cancer for Christmas

My wife sat at her laptop furiously compiling the lists for our four girls. She checked it once, then again while travelling to website after website scouring the internet for the best price and delivery. Items were added to baskets and carts checked out at such a frantic pace that I literally felt a warmth emanate from the credit card in my back pocket. Shopping at a fever pitch – Christmas delivered in two days or less. Not like most years, where she disappears for hours on end to find the perfect gift at the mall. She didn’t have time for that because we got cancer for Christmas.

We didn’t ask for it. It wasn’t circled in a catalog or written in red crayon. No one sat on Santa’s lap and begged for it. No, cancer just showed up unannounced and took our year away. So rather than spending quality time with each of the girls to weigh their enormous wants against our limited budget as in years past, my wife spent Saturday morning hunting and pecking under great duress. Do they have the right size? Will it be delivered on time? Is that really something she will use, or should we just give her cash?

At some point during the madness, I asked her what she wanted for Christmas. She paused to consider. Her eyes got red and her mouth failed her. She didn’t answer, but I knew. I knew what she wanted the second I asked the question. It was the only thing either of us wanted.

We wanted our baby to stop hurting. We wanted her to stop having to face treatments that made her sick and waste away. We wanted her legs to work. We wanted her hair to grow back so people wouldn’t stare at her.

We wanted to give cancer back!

But giving cancer back wasn’t an option for us that year, so we worked hard to navigate cancer treatment and the holidays together. Did you get cancer for Christmas? From our experience, here are five things you can do to make your family’s holiday season as bright as possible.

  • Keep as many holiday traditions as you can. Much loved traditions remind us of better times when the current situation is not the way we would want it.
  • Take cues from your little patient. If they are ready to celebrate, celebrate hard. If they need to rest, accommodate that.
  • Find a balance. Your other children are hurting too, but they need and deserve to have as much normalcy as they can. It is a tough and stressful job to find a balance that allows everyone to have the best holiday possible. But it can be done.
  • Be open and get input. If you can find out what is most important to each family member, no one has to lose the things they love best about the holidays.
  • Find joy wherever you can. Whether in the giving of special gifts or time spent together, there is always joy to be found if you seek it out.

Dealing with a cancer diagnosis during December certainly puts a damper on holiday spirit. But it doesn’t have to end it altogether. Although it may seem impossible, if you are intentional, you and your family can still have a wonderful holiday.

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