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It is important that childhood cancer survivors focus on staying healthy after cancer. Here are some helpful tips to consider:

1. Make your appointment to visit a cancer survivor clinic. Survivor visits begin when you are two years past the completion of cancer treatments. If you have reached this milestone, talk to your oncologist about a referral to your hospital’s survivor program. In the cancer survivor clinic, you will be educated about your risk for any late effects which might be side effects from your cancer treatment. You will also be checked for those side effects through labs or screening tests. You may see an oncologist, an endocrinologist, a pediatric psychologist, and a social worker. The number of providers you see is based on your health needs. If you already attend survivor clinic, be sure to make your appointment for 2018.
2.  Find and review your survivor healthcare plan. If you have already been to survivor clinic, review the survivor healthcare plan you received in clinic. The survivor healthcare plan will outline the cancer treatments you received, the late affects you are at risk to develop, and how the survivor team plans to check you for any late effects. If you have any questions about what you find in your survivor healthcare plan, jot them down and bring them to clinic with you. If you have been treated in Atlanta and can’t find your survivor healthcare plan, check Cancer Survivor Link online! When you register for Survivor Link at cancersurvivorlink.org, each year when you come to the survivor clinic, the team will upload the newest version of your survivor healthcare plan to your electronic record.
3. Learn a new self-management health skill. If you are an adolescent or young adult, work on a new survivor skill. A parent of a younger survivor could help him or her choose and develop a skill. This could be the survivor calling to make the clinic appointment, making the co-pay at the time of the appointment, or downloading the survivor healthcare plan from SurvivorLink. You may choose to know the names and doses of your medications or call in the refills this year. There are many skills that need to be learned, but if you learn them one at a time you will have them all down in no time.
4. Be sure to keep seeing your primary care provider for normal child and adolescent medical care and visit your dentist twice a year. Sometimes there are so many specialty doctor’s visits, it is hard to fit in the “normal” visits, but they are important too. You want to keep your primary care physician up-to-date on your health so he or she can take care of your routine medical needs. Also, don’t forget to get your teeth cleaned and eyes checked.

There are several skills a young survivor needs to learn to maintain health. By working to master one or more of these skills in the coming year, you will be setting yourself on the right path to a healthy life after cancer.

 

 

 

“Nothing’s been normal with Evan,” his father, Kraig, said. “Not in his whole life.”

Evan’s whole life consists of almost three years, and his abnormal childhood began in the womb. Kraig and his wife, Brittany, live in Leary, a tiny town in the southwest corner of Georgia. Doctors discovered a heart defect during a routine ultrasound while Brittany was pregnant. Knowing he would need open-heart surgery at birth, doctors induced labor as early as was safe.

Kraig said it was very stressful knowing their baby was going to need open-heart surgery as soon as he was born. His mind drifted toward the worst possible outcomes, and he worried about both his son and his wife. The surgery was a success, but complications forced more heart procedures over the next few months. Doctors also found a problem called hydronephrosis that resulted in an oversized kidney, possibly due to blockage. That became the next issue facing Evan’s medical team.

To fight these problems, the family had to make many trips to Atlanta where specialists were prepared to help. Depending on the traffic, that trip took roughly four hours each way. And the surgeries weren’t the only thing that forced them on the road. Because of his frail condition, normal childhood illnesses were harder on Evan than the average child.

Still, they rode out the surgeries and illness through his first year of life and felt like they were on the road to recovery. At sixteen months old, Evan was cleared by cardiologists and shortly thereafter had a scan to make sure the hydronephrosis was gone. The scan revealed a mass on his kidney. After surgery to remove it, Evan’s parents were introduced to a new team of doctors: pediatric oncologists. The tumor was neuroblastoma – a childhood cancer that can form anywhere in the nervous system.

The successful tumor removal put Evan into remission, but he quickly relapsed. Since then, he has had multiple rounds of chemotherapy, two bone marrow transplants, and antibody treatment. All of this treatment occurred in Atlanta. In fact, Kraig estimates the family has driven that well-worn path over one hundred times in the last three years. How has Evan taken it?

“Right now, you wouldn’t know he has health problems if you didn’t see the scars,” Kraig shared. “He loves to be outside and sit in my lap for a ride around the fields.”

Of course, it would be hard to miss his scars. By Kraig’s count, Evan has around ten of them on his tiny body: two from open-heart surgeries, two from the tumor removal, and six from chest tubes he has had over the years. He also has a gastric feeding tube that has been crucial for nourishment.

Evan is currently receiving antibody treatment, a type of immunotherapy where agents designed to attack cancer cells are introduced into the body. This targeted therapy seeks to kill the cancer without damaging healthy cells. CURE has invested heavily in such innovative research with the hopes of speeding it to the bedside of children who need it – children like Evan.

During Evan’s battles, Kraig has felt overwhelming support from their community and his employer, the Coastal Plywood Company. But he is quick to point out the most important member of his team.

“If it wasn’t for Brittany, I don’t know where we would be,” he said. “She keeps up with all of Evan’s appointments and medications and makes sure he gets everything he needs. We’d be lost without her.”

Doctor’s estimate Evan has six months left in treatment before he can put cancer in the rear-view mirror. Kraig said he will keep driving as long as it takes to give Evan a normal life.

“I don’t want much,” he explained. “I just want us to be a family again.”

 

 

 

April in Atlanta means short sleeves, bursts of azaleas, a robin’s song, and pollen… lots and lots of pollen. April also means it is time for Lauren’s Run and CURE Annual Picnic. Nestled at the very end of the month, Lauren’s Run has become a can’t-miss family event for our community. It also brings out the competitive fire in some.

One of those competitors is Robert. This year’s Lauren’s Run will be Robert’s fifth. While he might seem unlikely to win the race, his team is the reigning champion in one very important category and he doesn’t intend to relinquish that honor without a fight.

Robert’s run with cancer started in 2010, when he was only six years old. His parents noticed that he was more tired than usual and when dark circles appeared under his eyes, they immediately took him to the doctor. Soon they were on their way to Children’s Healthcare of Atlanta where they learned that Robert had leukemia. His treatment lasted three years and just as they finished, a spinal tap indicated that he had relapsed. Since that time, he hasn’t been able to outrun cancer. Whenever he beats it, the cancer seems to catch right back up to him. His treatment has taken him across the country a few times in a search for long-term success.

Throughout this whole journey of chemotherapy, spinal tabs, side effects, hospital stays, and family separation, Robert has shown amazing strength. He’s never complained and has dealt with every situation better than most adults would. His smile is big and his laughter infectious.

“Robert has taught us what is important in life and what really matters,” said his mother, Kasie. “This year Robert turned 13 and has officially been battling cancer longer than he has not.”

Last year, Robert and his Team Robert the Great won the coveted title of Top Fundraising Team with nearly $10,000. Just like in the picture, he was at the very center of the competition.

“He really wanted to win,” Kasie said with a laugh. “When other teams got close to our total, he would share a video of himself dancing and ask for more on Facebook. And people responded.”

Kasie doesn’t want Robert to know, but she shared her fundraising secrets with us.

“The key is to express the need. And to do that, you have to ask – face to face and by email, as well as on Facebook! People just don’t know how little is spent on childhood cancer research. But when you tell them, they almost always want to help.” she said. “CURE Childhood Cancer has been a big part of our lives since Robert’s first day at the hospital and we’re proud that the money Robert’s team raises for Lauren’s Run goes to fight cancers that affect kids.”

Robert’s team is already in first place for this year with over $5500 raised and he is working on his dance moves in case he falls behind.

Whether you want to join Robert or compete with him, we are all on the same team when it comes to fighting childhood cancer. By participating in Lauren’s Run, you’re taking a small step that can have a massive impact in the fight against childhood cancer. Won’t you join us?

Join Us at Lauren’s Run

 

In the summer of 2015, three-year-old Ava began complaining of lower back pain. After being sent home from daycare on several occasions and multiple inconclusive trips to the pediatrician, Ava’s mother, Julie knew that something had to be wrong. One Sunday after Ava began crying and complaining about her back, Julie took her to the emergency room. An ultrasound immediately revealed what the technician said was, “something that shouldn’t be there.”

That something turned out to be a tumor the size of a man’s fist on Ava’s right adrenal gland. After waiting anxiously for several days for biopsy results, the doctor came back with a diagnosis of stage three, high-risk neuroblastoma.

“I fell apart,” Julie recalls. “The idea of cancer never entered my mind. I always thought of cancer as something that old people get, not kids.”

Ava’s treatment plan was overwhelming: chemotherapy to shrink the tumor followed by surgery to remove the remainder of the tumor along with the adrenal gland to which it was attached. This was to be followed by more chemotherapy, two stem cell transplants, radiation, and finally, immunotherapy.

“We were so thankful that the tumor responded to the chemo and the doctors were able to remove it before it invaded any of Ava’s other organs,” Julie said.

Ava lost her hair and became thin but never really minded being bald. Her mother says that Ava took everything in stride and always had a good attitude. She remembers the stem cell transplants as the worst part of the treatment.

“Ava was so sick each time and the room would start to feel like a prison,” she said.

Ava completed her treatment in October 2016. Now five years old, she will start kindergarten in the fall. She gets scans regularly and is enrolled in a clinical trial designed to prevent relapse.

“Ava will never truly be free from cancer,” Julie says. “The treatment they gave her to kill the neuroblastoma has affected her teeth and could have affected her body in many other ways that we won’t know about until she gets older.”

But for now, Ava gets to be a kid again and return to her favorite pursuits: singing, dancing, and all things creative. She plans on becoming a ballerina when she grows up. Through this experience, her family has learned just how precious life is.

“We are so fortunate,” Julie says. “We saw other parents lose their children to this disease. We have always enjoyed spending time together as a family, but cancer showed us how fragile life is and now we make each moment count because of it.”

 

 

There aren’t many eleven-year-old boys who love to watch cooking shows and help mom when she cooks. Fewer still could recognize celebrity chef, Gordon Ramsay. But Adeshino (Kaleb) isn’t your typical boy, and after what he’s been through, he can watch whatever he would like.

At the tender age of five, Kaleb began experiencing back pain. His mother, Adeyinka, remembers taking him to the doctor several times over the next year.

“The pain wasn’t normal, and the doctor found trace amounts of blood in his urine a few times,” she said. “He wasn’t worried, though. He just thought Kaleb had a urinary tract infection and treated him with antibiotics.”

But as Kaleb got older, his symptoms persisted until finally Adeyinka took Kaleb to the emergency room where an ultrasound was performed. Before she got home, she received a call telling her to turn around and come back to the hospital. It was there doctors told her that seven-year-old Kaleb had cancer.

Desmoplastic Small Round Cell Tumor (DSRCT) is an aggressive and rare cancer which primarily occurs as a mass in the abdomen. Kaleb’s tumor was attached to one of his kidneys. The first step was to remove the tumor and along with it, his kidney. The surgery was followed by a year of chemotherapy which caused a dramatic transformation in Kaleb.

“It took a long time to figure out how to keep him eating. He was so sick that his weight got below fifty pounds,” Adeyinka explained. “One scary night, he was barely responsive and couldn’t walk, so I took him to the clinic. I had to carry him to the car, and I had to wheel him into the hospital in a wagon. In the room, they gave him fluids and revived him. I thought I was going to lose him.”

Once he began eating and gaining weight, Kaleb finished chemo and moved on to radiation until his treatment for DSRCT was finished. But cancer wasn’t through with him yet. Doctors had warned Adeyinka there was a five percent chance he could get leukemia from his original treatment. Then, a follow-up scan revealed something on his lung. Although the likelihood of leukemia was slim, Adeyinka’s worst fears came true.  Adeyinka had Acute Myeloid Leukemia (AML), an aggressive form of leukemia, possibly a result of the chemo and radiation administered to save his life. Unfortunately, secondary cancers are not uncommon side effects of today’s treatments for childhood cancer.

Kaleb started treatment for AML in June of 2016 and had a bone marrow transplant in September. Once again, he lost weight and was forced to deal with mouth sores and other painful side effects. But he quickly went in to remission and now only has to have his blood levels monitored.

“He has good days and bad days,” his mother said. “He has had some digestive issues and leg pain that we are dealing with. I wish our story was different, but these are the cards we were dealt.”

Kaleb missed two years of school due to his treatment. But with a little hard work he will move to fifth grade next year. He enjoys video games, The Walking Dead, Ellen, and shows about criminal investigations. Kaleb is active, but he has to be cautious because of everything his body has been through. Of course, that doesn’t keep him from whipping up a mean stack of blueberry pancakes. And he isn’t afraid of Gordon Ramsay, either. After all, he beat cancer twice and has been cooking along ever since.

Kyle knows all about living with what he calls, “The Incurable Curse.” A childhood cancer survivor, Kyle is in the sixth grade and wrote this piece as an essay assignment. His work earned first place in his school and is an illuminating look into what today’s cancer treatment looks like from a child’s perspective.

 

Slowly sneaking, creeping through you, silent, deadly, changing, transforming cells multiplying, and growing at an alarming rate, all happening inside, the conflict begins without a clue, without your knowing.

All of a sudden, one day, one moment in time everything changes, the words are spoken in quiet tones  but it seems like a shout to my ears, it becomes life impacting, extracting your freedom, strong bonds tying you to your bed, holding you down,chaining you to a metal pole of poison.

Mysterious figures, clothed and protected in suits of plastic, gloves of rubber, hanging bags of neon liquid dread, connecting you by a tube, poison dripping through a needle into your veins, controlling all you do, imprisoned, ruled by time and beeps.

What choice do I have? Lay my head down? Give up?  Never! Into the fray, fighting for what seems impossible! The Curse has struck; nausea and pain are my constant companions, the toxic medicine drains my energy, keeps me isolated, leaving my body open to other attacks.

They keep me here in this place to make me better, to give me life, though I’ve realized the struggle will never truly end, it has begun a lifetime of torture, mental and physical, an eternity of fighting, struggling against the effects of the supposed cure, grasping for life, for one more day as a regular kid.

Constantly receiving summons to appear before the medical tribunal, always more radiation, more tests and needles, more blood loss, I never will be the same, always wondering, pondering, what will the verdict be? Will this keep Incurable Curse of Cancer Away? Will another rival come to takes its place?

 

I am one of the Warriors, there are more of us than you can imagine! Why us? No one knows the answer. We are knights putting on our armor, bald heads going to war, strength and courage found in the smile on our faces, never letting the enemy steal the light of joy in our eyes, our war cry a laugh in the face of fear.

Many Allies have succumbed to this curse, lives fall every day, my heart aches with agony, I miss them terribly, but deep inside is the knowledge that others are also in the battle, experts, armies, continuing to work for a solution, a permanent antidote, waving the banner high, a golden ribbon, and I have hope, Hope that a true Cure for Childhood Cancer is within reach!

Children with certain types of cancer receive bone marrow transplants as part of their life-saving treatment. Bone marrow transplants carry many risks and can be wrought with complications. The most serious risk and leading cause of mortality is acute graft versus host disease (GvHD). GvHD can be a deadly complication and unfortunately, it is very common. About half of all bone marrow transplant patients develop this complication, which occurs when the newly transplanted materials, or graft cells, form pathogenic Tcells which attack the recipient’s body.

In 2010, Dr. Leslie Kean, then the Director of Bone Marrow Transplantation at Children’s Healthcare of Atlanta, launched a phase 1 clinical trial to test a new agent called Abatacept. She believed that in order to prevent GvHD, Tcells need to be treated and changed so they do not attack the recipient’s body. Dr. Kean theorized that Abatacept would decrease the risk of acute GvHD while not increasing the risk of infection. CURE agreed to the merit of the trial and funded the phase 1 study.

“The money from CURE is absolutely essential to preventing and treating GvHD,” said Kean.

Because of CURE ’s grant, Kean was able to test her research on humans for the very first time. For Kean, who started this research ten years ago, it was rewarding “to watch an idea blossom into something greater that can help thousands of children.”

The phase 1 Abatacept clinical trial began with five leukemia patients, all over the age of twelve and in need of a bone marrow transplant. Patients received the drug during the transplant, after which Kean and her team ran tests to determine the effectiveness of Abatacept in preventing acute GvHD.

The data was so promising that Dr. Kean continued with a larger, phase 2 clinical trial. When the drug was used in addition to standard GvHD treatment, it reduced the occurrence of acute GvHD from 32 to 3 percent. The group who received Abatacept alongside their normal treatment experienced increased survival and recovery.

The results from this Phase 2 study are so promising that Dr. Kean is working with the company that makes the drug, Bristol Myers Squibb, to file a “breakthrough therapy” application with the FDA. The breakthrough designation seeks to expedite the review and approval process for promising drugs, allowing them to get to the bedside quicker.

Dr. Kean explains, “As a transplant physician, it’s beyond heartbreaking to witness a patient develop severe acute graft-versus-host disease after having their leukemia cured through bone marrow transplant. To have a therapy at our disposal that safely targets just the Tcells causing graft-versus-host disease represents a major step forward in stem cell transplantation. It not only offers new hope that we can prevent graft-versus-host disease upfront, but that we can also significantly improve outcomes for patients requiring high-risk transplants.”

 

 

Source: https://futurism.com/immunotherapy-drug-proven-successful-against-serious-stem-cell-transplant-complication/

 

 

 

As we look back over the holidays, our hearts are full. You did so much to ease the burden of families fighting childhood cancer. It is with great pride that we share how you supported so many children and families with your generous giving.

Through CURE’s Holiday Angels program, you provided holiday gifts to 115 families who are not only battling childhood cancer in a medical fight, they are squared up against it financially as well. That means more than 300 children received gifts and special holiday meals who may not have otherwise had much holiday joy. Parents were overwhelmed by the toys, bikes, games, and baby dolls we loaded into their cars, sometimes shedding tears and almost always giving hugs.

 

Here are just two notes of thanks we received:

“I just wanted to say a HUGE thank you to you and the family that helped make this year’s Christmas so special. The kids are going to be thrilled when they see those presents under the tree. We couldn’t be more humbled by the generosity of CURE. I’m sure so many other families will feel extra blessed as we did this Christmas.”

 

“I am very grateful for all the Christmas gifts. It was so much and not expected. CURE has made this Christmas so wonderful and not so stressful financially.”

 

 

With your help, we were able to treat 130 families to incredible holiday parties in Atlanta and Savannah, providing a festive break from the worries of treatment. From gingerbread houses, crafts, and special snacks to a visit with Santa, children had an incredible afternoon.

You also provided food for more than 1000 hospitalized patients, family members, and staff throughout the month of December through our Open Arms Meal Program. Additionally, thanks to Church’s Chicken, we served special holiday meals to approximately 75 hospitalized children and family members on Christmas Eve.

 

And you gave. We are thankful for every gift – whether big or small – because each one tells us that you believe in what we are doing for children.

We truly appreciate your holiday spirit and all that you allowed us to do for these incredible children and their families devastated by a childhood cancer diagnosis. Without your support, many would be fighting alone. But together, we are making a difference – not just in December, but all year long.

 

 

Dear friends,

Inspired. Almost every day I learn something or hear something or see something that just leaves me feeling inspired. I’m going to wear out that word, I use it so often. But I can’t think of any other way to describe the emotions I constantly feel.

Serving as the Executive Director of CURE Childhood Cancer is such an incredible privilege. Every day I meet people who leave me feeling completely inspired. Sometimes it’s a patient like Ansley, featured in our Spotlight article, who maintains faith and resolve in the face of a relentless disease, or a parent who writes Caringbridge updates that leave me staring at my computer screen wondering where the wisdom and perspective come from. Or it’s a nurse who has devoted 19 years to expertly caring for and loving cancer’s youngest patients – or a board member who so loves serving CURE that he can’t wait for the next meeting, despite his demanding “real job.” Sometimes the inspiration is in a volunteer who spends hours in our office each month sorting and labeling and keeping us organized because she knows that will enable us to spend more of our time serving families, or it’s in a CURE staff member who is fueled to do whatever is needed by genuine passion for the mission and purpose of the organization.

Sometimes the inspiration is a team of doctors who, with brilliance and compassion, are working to find better, more effective ways to treat children with cancer. Are you familiar with precision medicine? This is an emerging approach for disease treatment that takes into account the individual variability in the genes of each patient. We believe precision medicine offers tremendous hope for more effectively treating childhood cancer, and we are investing significant resources – $4.5 million – in ensuring children have this available to them. With our funds, the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta is launching the Aflac Cancer Center Precision Medicine Program. We believe this will be a game changer for hundreds and eventually thousands of children with cancer across the nation as knowledge is developed and individualized, non-toxic, curative treatments are developed.

As I write this letter, it happens to be the 16^th anniversary of the day my son was diagnosed with cancer. Thankfully, today he is a healthy and active teenager. But in the years since his diagnosis, it has been my strong desire to make some kind of difference in the fight against childhood cancer. CURE has been doing that with research support in the tens of millions of dollars. That research has been important and impactful.

But my level of inspiration has reached new heights with the decision to fully fund a new Precision Medicine program. In doing so, we are bringing new treatment possibilities to so many kids with otherwise dismal prognosis. This is hope! And while it will take time to reach its full potential, the first and biggest step has been taken. Precision medicine will be a reality at the Aflac Cancer Center because of CURE and the incredible team of doctors doing the hard and highly complex work.

Thank you for letting me share my inspiration. I hope you will be inspired to join our efforts.

Warmly,

Kristin