On a steamy August day in Georgia, over 300 people spent the morning walking a track and climbing stadium stairs all for a special purpose. It was the culmination of Lendmark’s Climb to a Million – an effort spurred on by the compassion of Lendmark CEO, Bobby Aiken, as he watched the son of his lifelong friend deal with the effects of a brain tumor.

“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.”

Bobby is a stadium runner, and spent the last few years thinking about Chip and kids like him who are facing the challenges of cancer.  So he took his love of stadium running and turned it into a fundraiser, engaging his company’s employees, partners and vendors in the fight against childhood cancer. In its first year, the climb raised $282,000 to fight childhood cancer. In its second year it surpassed expectations and raised over $505,000!

It wasn’t just in Georgia, either. Teams with creative names like Pirates of the CUREibbean and SWATT (Sprinters, Walkers, and Trash-Talkers) held friendly fundraising competitions across the country. It also wasn’t only about climbing. A poker tournament in Colorado, lollipops in Virginia, and sand dunes in California gave employees the chance to use their unique skills and interests to join the fight.

“We are inspired by Lendmark and their incredible commitment to make a difference in the lives of children with cancer,” said CURE’s Executive Director, Kristin Connor. “They saw a problem and set out to fix it in a creative and fun way. Their energy and passion is contagious!”

 

Read more about our good friends at Lendmark Financial here.

Working with Precise Tools to Fight Cancer

CURE commits $4.5 million to build a program which will develop tailored treatments for individual cancer patients

Hundreds of tools can be in a garage. But if the right, precise ones aren’t selected for a job, often the problem isn’t really fixed.

With cancer, researchers are finding they face a similar – albeit, far more complex – dilemma. There is now a stunning array of promising discoveries that might lead to innovative treatments and even cures. But as researchers learn more about the complexities of cancer, they are having to sort through – often at a molecular level – a myriad of possible treatments to find the best customized approach for each child with cancer.

At the Aflac Cancer and Blood Disorders Center of Children’s Healthcare of Atlanta, this search for tailored solutions has led to the creation of the Aflac Cancer Center and Blood Disorders Precision Medicine Program. Through a $4.5 million commitment from CURE Childhood Cancer, the program will allow researchers, technologists and doctors to work hand-in-hand to develop individualized cancer therapies for some pediatric patients – giving those children and their parents some optimism in often dismal situations.

“This could give immediate hope for patients who have failed with other therapies,” said Douglas Graham, M.D., Ph.D., director of the Aflac Cancer and Blood Disorders Center, who is leading the new program. “I hope this gives kids a chance at a better outcome – because we try to tailor medical treatment specifically to their needs.”

The program will be able to accomplish this through the “building blocks that are already in place,” Dr. Graham says, including:

• The large volume and diversity of the Aflac Cancer Center patient population. Right now, the Aflac Cancer Center is consistently among the top ten centers that treat pediatric cancer in the nation. This top-rated standing leads to stronger science and better studies, because there is a wider population to check – and recheck – initial findings.
• The commitment to state-of-the-art technology. Daniel Wechsler, M.D., Ph.D., director of pediatric oncology at the Aflac Cancer Center, said the program, for example, will use technologies that allow for rapid DNA and RNA sequencing, needed to understand the genetic markers of both individual patients and their cancers. In addition, this program will bring in a “bioinformatics specialist,” to analyze the data gathered.
• The recruitment and retention of top researchers, doctors and technologists who can collaborate on findings. The program is forming a new “Aflac Cancer Center Molecular Tumor Board,” which will bring the best minds together to review daunting cases with patients’ clinicians. In addition, it will strengthen Aflac Cancer Center’s relationships with Emory University and the Georgia Institute of Technology; and form strategic partnerships with other similar institutions around the nation.

About 80 percent of children diagnosed with childhood cancers can be cured. However, for two out of ten patients, the outcome is not good. Either the patients are temporarily cured, with the cancer relapsing; or they fail to initially respond to any traditional therapies, making their long-term survival bleak. In about two-thirds of the patients cured, the toxicity of the treatment causes long term side effects, especially in areas of healthy growth and brain function.

However, technology has helped researchers discover far more about different types of cancer – whether they be solid tumors, brain cancers, or leukemias and lymphomas. From gene sequencing to tissue banking to the molecular delivery of therapies, things that were too expensive just a few years ago are now more easily accomplished. This often means doctors can pinpoint the exact genetic make-up of an individual’s cancer. It also means that the program, with its combined resources, could tease out a customized therapy, specifically designed to fight that cancer.

The first barrier, however, is how to determine which treatment is the best one.

Now, researchers and doctors are often dealing with too much hard data and too many soft unknowns. The challenge is finding what information should be examined, and what should be tossed aside: a modern oncologists’ version of a needle in a haystack.

“I worry about giving false hope,” Dr. Wechsler said. “We have this new technology, but it’s still going to take some significant time to figure out the best way to use it.”

Dr. Graham agrees. “The struggle is, as powerful as this technology is, we’re still at the beginning stages of this,” he said. “However, that said, the goal in sight is to provide more effective treatments for children with cancer.”

 

 

“Government does not solve problems; it subsidizes them.”

-Ronald Reagan

If you’ve been a part of the childhood cancer world for any length of time, chances are you have heard the “More than 4” rally cry or seen the hashtag. It stems from the lack of federal spending on pediatric cancer research, which every year hovers just below four percent of the entire outlay by the National Cancer Institute (NCI). The NCI is a part of the National Institute of Health (NIH), the primary agency of the United States government responsible for biomedical and public health research.

Federal funding for research is largely based on incidence rates. Therefore, cancers that occur more often receive more funding. This includes cancer of the breast, lung, and prostate, just to name a few. In fact, we spend more on prostate cancer research, with an average cure rate of 95% and average diagnosis age of sixty-six years, than we do on all childhood cancers combined. And the budget for 2018 threatens to increase this disparity.

The proposed 2018 budget for the NIH carries a 17.41% decrease over 2017. That amounts to a reduction of $5.674 billion. Of course, every department under the NIH’s umbrella must take a hit, and the NCI stands to lose $1.03 billion. If the NCI allocates its typical 4% to childhood cancer, that means children will lose $38 million in federal funding, which is devastating considering childhood cancer incidence rates are on the rise.

This may prompt the obvious question, “As a country, do we value our children?”

Reframing the situation, a more appropriate response may be to stop relying on the government to solve the problem. In the immortal words of Milton Friedman:

“I think the government solution to a problem is usually as bad as the problem and very often makes the problem worse.”

With the decrease in NIH funding, families facing a cancer diagnosis need our help to provide funding for research in hopes of finding curative treatments… now more than ever.

CURE Childhood Cancer doesn’t spend its time fighting the government. We fight for children through the funding of targeted research which is likely to have a positive impact on children within five years. Our latest grants committed more than $4 million to promising research projects including several exciting chemotherapy-based projects, as well as cutting-edge immunotherapies and T-cell treatments. CURE has also committed $4.5 million over three years for the development of a Precision Medicine Program which exists in only a small handful of pediatric cancer centers across the country. This groundbreaking program launching at the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta envisions personalized, non-toxic, and curative cancer therapy for all children.

Children need better treatments and they can’t do it themselves. Especially with the federal government decreasing research dollars, we must take the lead by funding private, innovative research to give every child affected by cancer a chance at life.

Now more than ever, children need CURE.

You can be a part of this movement today. We believe that a cure to childhood cancer will be found in our lifetime, and every dollar gets us one step closer.

 

Article Sources:

https://CAC2.org

https://www.hhs.gov/about/budget/fy2018/budget-in-brief/nih/index.html

As our hearts turn toward Thanksgiving, CURE wants to express our thanks to you, our donors. Without you, we wouldn’t be able to touch the lives of families fighting childhood cancer. During the year, we receive notes from these families and would like to pass them along to you. These are real comments from real families in crisis whose lives have been impacted by the generosity of your gifts. Thank you.

Early Outreach

“We had treatment in Atlanta at Egleston while she received her radiation at Emory. During that time, my family was given one of the CURE totes and I cannot even begin to tell you how much of a blessing it was and still is. The provided notebook has been to every appointment and hospital stay, as it contains every piece of information pertaining to our daughter’s diagnosis and treatment plan.”

Family Emergency Fund

“Our sweet girl went home and received complete healing on August 2, 2017. I haven’t had the chance to sit down and let everyone know what a difference they have made! All the times we were inpatient and I was so hungry and couldn’t leave and you would provide food, all the gas cards we so desperately needed from our haul to Atlanta from Chattanooga, or just simply the smiles and joys you would bring during our chemo days! Thank you for making our journey a little easier. What a blessing”

Bo Story Lodging Fund

“I wanted to tell you how important that hotel stay was to us. When he had a short amount of time to go in between outpatient and impatient, he was at his weakest and very sick. You put us in the most comfortable spot with the best people. They made our stay so enjoyable. And he was his happiest during our treatment time. Those three days gave us hope and me time to recoup and gather the things we needed to get grounded and move into a place here in Atlanta. That meant the world to us.”

Bereavement Care

“Our son just passed away in October so this is still all very new to us. Having the opportunity to talk to others was very helpful. I also sat in the break-out sessions listening and not realizing how helpful they really were. But in the past 48 hours, two things have come up that were things that we talked about and it really helped with those situations.”

One last comment that speaks so well to the overall impact CURE has had because of you.

“If you ever wondered what effect your work has on the families and others that have the pleasure to see and be a part of it, please know my tears yesterday were of overwhelming awe and joy. It has been a long journey being on the frontline of our son’s diagnosis and treatment. Knowing what he’s been through and how he’s changed and evolved through it all. Looking at that beautiful, healthy, strong, larger-than-life image of him brought up so many feelings of hope and gratitude; so much of the constant roller coaster emotions that are a part of having a child whose life is threatened, and the helplessness felt at not being able to tangibly defeat it.

I wouldn’t know where to begin to express my gratitude for everything CURE has done for our family to ease the impact of our boy’s developing cancer. CURE definitely makes a positive difference in our ability to cope and navigate this life-changing event.”

 

From everyone here at CURE, “Thank you”

 

From Cancer Warrior to Marine

 

“I don’t remember being scared. I just remember it as something I had to plug through.”

Those are the words of Chad Burger when he looks back at his treatment for stage 4 Non-Hodgkin lymphoma. At eight years old, that steady outlook would carry him through nearly two years of treatment and create a foundation for the young man who now serves his country as a Marine Captain.

Chad and his family were vacationing when they noticed the first signs of trouble. An athletic boy roughhousing with his siblings at the beach, he found that he couldn’t catch his breath. Thinking it might be the onset of asthma or something similar, his parents took him to the doctor for examination when they returned home. They were all shocked to discover that the cause of his breathing trouble was a massive tumor in his neck and chest area. Chemotherapy started immediately.

“I was young and naïve then,” Chad recounts. “I never considered that I wouldn’t get over it. I actually hated that I couldn’t go to school and really didn’t like not being able to play sports. But mostly I just hated being stuck in the hospital.”

And stuck he was. Cancer forced Chad to miss eighty days of school with chemo, spinal taps, and shots. All the while his weight fluctuated between being skin and bones for a time until steroids would make him eat everything in sight. While in the hospital, he watched movies and played games with the other patients but always yearned to get home.

Then there was the day he got to go home for good! When his treatment ended, he built up strength and slowly began playing sports again. He went to the University of Georgia with one goal in mind.

“I was always going to be a Marine,” he said. “My grandfather and great-grandfather served and I knew that was what I wanted.”

There were some hitches, though. Because of his medical history, he needed recommendations from doctors to get accepted. He had no issue at all with the physical aspect of service, and once the letters came in, his training began. Chad was commissioned in December 2010, then attended The Basic School and the Infantry Officer Course. Since that time, he has served around the globe.

While in the Operating Forces, highlights include deployment in support of Operation Enduring Freedom (OEF) 13.1 in Helmond Province, Afghanistan. Additionally, he deployed as Company Executive Officer and Theater Security Cooperation (TSC) team leader in support of Special Purpose Marine Air Ground Task Force Crisis Response Africa (SPMAGTF-CR-AF). As TSC team leader, he deployed twice to Senegal to assist the Senegalese military in training to counter narcotics and the flow of other illicit materials.

Captain Burger’s personal decorations include the Navy and Marine Corps Achievement Medal and various unit awards and campaign medals. Currently, he is a platoon commander at Marine Corps Security Forces Battalion in Kings Bay, Georgia.

 

When he was home on leave a few years ago, he got the opportunity to visit young cancer patients wearing his dress blues. For Chad, this was his journey coming full-circle.

“I hoped that maybe one of these kids would look at me and think, ‘here’s a guy who had the same thing I have and he didn’t let it stop him from doing what he wanted to do,’” Chad said. “I got to talk to one little guy who had the same cancer as me. We hung out for about an hour. Six months later, I found out he beat it, too!”

Chad wants to give back to kids fighting cancer more often when he completes his service next year. He has nearly twelve months until his time in the Marines is over and then he will be a veteran. Of course, he is already a veteran of the toughest battle any child can face.

 

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Cohen Does it BIG!

 

When asked to describe her son, Cohen, Valorie is quick to say, “He is strong-willed. Whatever he does, he does big.”

That’s the way he goes through life and that is the way he fought back against cancer, too. His battle started nearly two years ago, when Cohen was three. Constipation forced his mother to take him to the pediatrician a couple of times. He was given routine treatments until one day Cohen’s stomach grew so large that he looked like he was pregnant. The doctor sent him to the emergency room immediately and after a week, Cohen was diagnosed with embryonal rhabdomyosarcoma, a rare childhood cancer that manifested itself as a fifteen-centimeter tumor in his abdomen.

Cohen’s treatment started right away. Because the tumor was too large to remove, he began chemotherapy designed to shrink the tumor to a more manageable size. The side effects of chemo were hard on him. But even in his pain, Cohen’s strong will pushed back. He fought every finger prick, every blood draw, and every needle brought his way. His fighting spirit guided him even as he lost his hair and so much weight that he needed to have a feeding tube. Unfortunately, the tumor was stubborn too. It didn’t shrink.

Cohen’s family was running out of hope until Dr. Megan Durham of Children’s Healthcare of Atlanta decided to undertake the dangerous surgery. Cohen was wheeled back for what was supposed to be a thirteen-hour procedure. They were relieved when Dr. Durham emerged after only four hours and said she got it all. Valorie says it was an absolute miracle.

After recovering from the surgery, Cohen continued taking chemotherapy and also began receiving radiation to ensure that the tumor never returns. He lost even more weight, but took his last chemo at the end of March and as he has recovered from his treatment, he has finally been able to pack on a few pounds. He still has random pain and some nausea, but his recovery is progressing well. In fact, he started Kindergarten at the McDonough Presbyterian Children’s Academy this fall.

“These kids are amazingly resilient. They just want to be kids. Any day Cohen felt good during treatment, he took that chance to just be a kid,” Valorie recalls. “And now it makes my heart happy to see him jump out of the van and run into school without looking back because there were days when I was afraid that might never happen.”

 

 

Vaccinations and Cancer Treatment

 

Brooke Cherven, RN, MPH, Karen Effinger, MD, Lillian Meacham, MD

Most children and teens with cancer will have their routine vaccines delayed while they are going through treatment. Patients receiving chemotherapy or radiation have weakened immune systems, meaning the vaccines may not work as well, and some vaccines are dangerous for people with weakened immune systems. Children and teens should wait until after completing treatment and receiving permission from their oncologist to receive most vaccines.

However, all patients should get a yearly flu vaccine while going through treatment and after treatment. The flu is dangerous in patients with weakened immune systems. Receiving the flu vaccine and making sure family members do as well can help prevent flu in cancer patients and cancer survivors. Be sure to ask your oncologist which type of flu vaccine is appropriate for the patient and family. Most guidelines strongly recommend the shot containing dead virus and not the spray which contains live virus due to the patient’s weakened immune system.

Most patients should begin to receive their routine vaccines around 3-6 months after completing treatment. If you missed some vaccines, you can follow a catch-up schedule to get back on track. Patients who have had a bone marrow transplant will have a different schedule for vaccines which they will get from the bone marrow transplant team. All patients should talk with their oncologist before receiving any vaccinations.

The human papillomavirus (HPV) vaccine is highly recommended for cancer survivors who are 9-26 years old. HPV is a sexually transmitted infection, and most people in the United States will become infected at some point in their lifetime. Some types of HPV can lead to the development of future cancers. HPV is associated with almost all cervical cancers and the majority of anal, genital, oral and throat cancers. Getting the HPV vaccine is a way for cancer survivors to protect themselves against future cancers.

For more information about vaccines during and after cancer treatment:

• Catch up immunization schedule for children and adolescents or adults:
  • https://www.cdc.gov/vaccines/imz-schedules/
• Learn more about the HPV vaccine
  • https://www.cdc.gov/hpv/vaccines/

 

 

 

Most of us measure our success in terms of degrees, accomplishments, titles, and accounts. But a doctor numbers successes one by one – marked by the life of every patient who is able to walk out of the hospital’s doors. When Dr. Abdel Ragab began practicing pediatric oncology, unfortunately, survival rates were very low and these successes quite rare. As we prepared to honor him at the 4^th annual Believe Ball, he spoke with great emotion of a particular patient who was one of his first successes.

His name was Matt. When he was 17 months-old, his parents brought him into the hospital in St. Louis with an obstruction of the bladder that turned out to be rhabdomyosarcoma. The tumor was inoperable – too large and involving too many organs. Doctors gave the family little hope that any treatment could help to save their little boy. Undaunted, Dr. Ragab called a colleague at MD Anderson, and together they discussed a radical treatment of three chemo drugs in combination along with massive doses of radiation. Chemotherapy drugs were not typically used in combination at that point and certainly not on a child. The little boy might die from the treatment, but it was all they had, and he would surely die without it. Matt’s desperate parents agreed to try it.

This groundbreaking chemo combination worked to stop the growth of the very aggressive tumor, and the radiation shrunk the tumor enough to allow surgeons to remove it. With tears in his eyes, Dr. Ragab told us that this little boy is now a grown man. He is Matt Gephardt, son of former Speaker of the House, Dick Gephardt. The entire Gephardt family, including Matt’s wife and two sons, joined us at the Believe Ball to present Dr. Ragab with a special award as our honoree this year.

 

Dr. Ragab was surprised and overcome with emotion as they approached the stage, and although Mr. Gephardt has delivered many speeches in his political career, none have been so difficult and heartwarming as when he thanked the man who saved his son’s life. When he finished, their hug was one for the ages, and it set the tone for the rest of the evening.

 

The Believe Ball exceeded all expectations. It raised over $1 million, thanks to the attendees and our generous sponsors. Throughout the night the crowd smiled, cheered, and laughed as they came together for a good cause. And the man honored for all of his successes, including founding CURE Childhood Cancer, told CURE Executive Director, Kristin Connor, “That was one of the highlights of my LIFE!”

By every measure, the Believe Ball turned out to be a true success.

Please plan on joining us on May 19, 2018 for the 5^th annual Believe Ball. It is sure to be another incredible success!

What do experiencing a fire storm in Fallujah and watching your child undergo cancer treatment have in common? Both events trigger our internal alarm system and have the potential to create a reaction of Post-Traumatic Stress Disorder (PTSD).

When we find ourselves in a fearful situation, our physical alarm system is triggered. It is an ingenuous mechanism. Hormones like Adrenaline and Cortisol flood our bodies, shutting down our executive reason or conscious mind. Our bodies react first. We respond immediately, and we are propelled to either flight (run away), fight, or freeze (become numb, check out, or play dead like possums). Many a caveman survived surely because of these quick reactions.

However, when our ability to run, fight, freeze, or essentially take effective action is blocked, our brain simply continues to react in distress by continuing to release hormones. Our alarm system can become stuck in the “on” position. The brain continues to send danger signals long after the threat has subsided. As an example, a child may be in remission and doing well but every time his parents take him for a checkup, they experience thoughts, emotions, and physical reactions identical to the intense fear they experienced during their first cancer treatment or diagnosis.

The symptoms of PTSD are varied but can include the following:

Flashbacks: Flashbacks are snapshots or internal movies of fearful or traumatic events which can cause intense emotions, heart palpitations, sweating, and even panic attacks. A person’s reaction to these flashbacks put him or her right back into the moment as if it was happening again. Flashbacks are not memories. They are intrusive and pop into your mind even when you are not trying to recall them.

Jumpy and Hypervigilant: You may find yourself reacting with heightened senses or an exaggerated startle effect. Your heart may jump in response to any small reminder of your fear. One mother recalled that five years after her child’s allergic reaction, she still found herself checking her child’s breathing and panicking anytime he appeared to change his breathing rate.

Nightmares: Nightmares are different than flashbacks. The content of the nightmare may not seem to have anything to do with the fearful event and is more a product of the subconscious mind. However, frequent nightmares are a symptom of a heightened alarm system and PTSD.

Insomnia or difficulty sleeping: Having trouble falling asleep because your mind will not shut off and finding yourself ruminating on your fears is another symptom of PTSD. In addition to having trouble falling asleep, people with PTSD may wake up frequently during the night because of nightmares and then have difficulty going back to sleep.

Avoiding People and Places: When you find yourself avoiding people or places because you are afraid of how you may react or the feeling you may have, you may be experiencing PTSD. Driving a mile out of your way so you do not pass the hospital where your child was treated is a symptom of PTSD.

Feeling Detached or Estranged from Others: You might find yourself feeling isolated, alone, or misunderstood. Comfort that you used to experience through connection to others and/or your interest in pleasurable activities is diminished.

Difficulty Remembering or Concentrating: With PTSD, it is common to find you are unable to concentrate or remember things that are currently happening. This is one reason it is recommended to have someone with you taking notes when you are meeting with doctors or discussing treatments.

Extremes of Emotions: At times, people with PTSD may feel intense moments of anger, sadness, or distress. They may experience moments of rage, physical aggression, and suicidal thoughts. At other times, they may feel numb, hopeless, and unable to have loving feelings.

Today we understand a lot more about PTSD than we did even ten years ago. There is help. You do not have to grit your teeth and bear it. Today’s treatments include Eye Movement Desensitization Reprocessing Therapy, Cognitive Reprocessing Therapy, Neurofeedback, acupuncture, massage, yoga, and narrative therapy. If you notice these symptoms in yourself or a loved one, please seek out the treatment that will help you manage your PTSD. For more information on how CURE can help through our Counseling Program, click here.

 

 

*Carleen Newsome, LPC, CPCS, ACS is the Director of Clinical Services and Staff Therapist for Summit Counseling Center