Your Piece of the Puzzle

Have you ever sat over a puzzle for endless hours searching for the last edge piece? It might be a color and pattern that should be easy to find and yet, among all of the others that look so similar, it can elude even the most relentless pursuit.

Sometimes the answer to a problem in real life can be just as elusive. Even when your soul yearns to help, the way to do so can be hard to find. Just ask Melissa. A few years ago, Melissa heard about a boy named Lake at her church who was fighting cancer for the second time. A mother herself, she felt an immediate connection with Lake’s mother who was about to have another child. Her heart went out to this family who were thrust back into a fight for his life and she felt compelled to do something. But she had no idea what piece she could play in this puzzle since she didn’t know the family personally.

Some people stop there. With the noblest of intentions, they scour the table, decide there is no way to find their piece and then put the puzzle in the box. They still feel bad and hope that someone will help, but they don’t continue to search for a way.

Not Melissa. She knew she had to do something. When Lake passed away in May of 2015, she was devastated. But that event cemented her calling to do something in his memory.

So she decided to raise money for CURE Childhood Cancer. The question of how she would go about doing that plagued her. As she considered the question, an idea of making and selling beaded bracelets began forming in her mind. This lead to even more questions because jewelry-making wasn’t something she had any experience with. But she took the plunge and decided to take up a new hobby with the hopes of honoring Lake and his family.

In August, she began to collect beads from broken jewelry, Goodwill, and friends who were willing to share their unwanted pieces and she made 400 bracelets. She sold them during September’s Childhood Cancer Awareness Month on Facebook for $6 apiece and when they were gone she had raised over $2000! This year she did the same thing and made $2700. She has received orders from as far away as Switzerland and Germany.

She has also met Lake’s mother, Anna, and the two have become friends. Melissa says that making jewelry for this worthy cause brings her joy. It is the part she can play – her piece of the puzzle.

What is your piece?

What can you do to help CURE support families fighting against cancer and fund research that will ultimately lead to a cure? Maybe you have a talent you can use or like Melissa, you could start something new. If you would like ideas, visit our Fundraising Page or send an email to [email protected]. We would love to help you find out where you can fit in.

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Five Reasons to Seek Counseling – And CURE Can Help!

Five Reasons to Seek Counseling When Your Child Has Cancer

Hearing the statement “your child has cancer” is quite possibly the most difficult and life changing information you could ever receive. You may immediately experience feelings of shock and denial. This is a common and natural response. Over time, you may start to experience other feelings as well – feelings of guilt, sadness, anger, hopelessness, and fear. These feelings are commonly associated with grief. Grief can mean the fear of losing someone we love and adore, or it may be the realization that our life will never be the same. Parents experiencing the impact of childhood cancer may find the following losses relatable and may benefit from the aid of counseling.

The loss of control and the ability to provide safety.

The feeling of loss could begin upon hearing your child’s diagnosis. You feel you can no longer control your child’s environment or his or her safety. As the parent, you know your child and his or her needs the best, yet know you have to put your trust in a team of doctors and staff to care for your child.

The loss of security.

The news that your child might be facing life or death could leave you questioning yourself, your beliefs, and your confidence in the future. You may also be questioning your financial security. Symptoms of anxiety and fear may emerge. You might find your mind racing, a heaviness in your chest, and difficulty falling or staying asleep.

The loss of a normal routine and freedom.

At one point you were juggling all of your children’s sports events, and now, you’re not only missing them, but you’re also missing work and time with your spouse and friends. Your life is now about survival. Through this time you may feel you are not doing enough or as if you are letting someone down. You may find yourself in a constant state of conflict and uncertainty about what you “should” be doing.

The loss of good health.

The loss of good health could mean lack of sleep, an unhealthy diet, lack of exercise, and not taking time for yourself. Stress takes a toll on the body. When our sole concern is being present and supportive of another person, oftentimes we become neglectful of ourselves. When we do not have the time or the ability to take care of ourselves we become more susceptible to physical illness and mental health issues. We may lose patience, find ourselves more irritable, experience foggy thinking and begin to isolate or feel alone.

The loss of a loved one.

The loss of a child is devastating, and quite honestly, unnatural. Fortunately, the majority of children with cancer today survive. But should you experience this loss, you may feel as though you don’t know what to do next, or even how to go on. These feelings are a natural response when we lose someone special to us.

There is no denying the emotional and mental impact that cancer has on children, their parents, and their loved ones. Those who experience grief due to childhood cancer may also experience some of the following: post-traumatic stress, avoidance, isolation, depression, anxiety, resentment, and thoughts of death or suicide.

Counseling can help you adjust to challenges and manage your symptoms.
Don’t fight this fight alone. We are here for you.

CURE Childhood Cancer and Summit Counseling Center have teamed up to provide professional counseling resources to CURE families at little to no cost. To learn more please call Karen McCarthy at 770-986-0035 at ext.26 or email [email protected].

Article by Tori Goodling, MEd, LAPC (Applied), staff therapist at Summit Counseling Center.

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Five Ways to Stay Healthy After Treatment

Contributed by: Nancy Keene

National Cancer Survivors Day is an annual celebration of life held on the first Sunday in June. It inspires and supports survivors of cancer, including childhood cancer. There is much to celebrate––cure rates for many childhood cancers have dramatically increased. As a result, almost half a million children, teens, and adults living in the United States are survivors of childhood cancer.

The tough news is that most survivors of childhood cancer develop late effects months, years or decades after treatment. St. Jude Children’s Research Hospital found that 95% of long-term survivors of childhood cancer had at least one chronic health condition by age 45. The good news is that many of these late effects can be prevented or managed by getting excellent follow-up care and making healthy choices.

Here are five ways survivors can maintain their hard-won health:

1. Get a Summary of Your Treatment
Every survivor needs a summary of his or her cancer treatment. The type and dose of chemotherapy drugs and the location and amount of radiation affect your risk of developing certain late effects. If you don’t have a summary, ask your oncologist or nurse practitioner to fill out the treatment summary form found at:

http://www.childhoodcancerguides.org/wp-content/uploads/2016/02/treatment_record.pdf

This health history will become an indispensable part of your medical records for the rest of your life. Keep one completed copy in a safe place and give a copy to each of your medical providers (e.g., internist, ophthalmologist, gynecologist).

2. Go to a Comprehensive Survivorship Clinic Every Year
Children, teens and adults who survived childhood cancer should be seen by experts at survivorship clinics. This is because most primary care providers have little or no training in the late effects that arise after treatment for childhood and adolescent cancers. For example, Hodgkin disease usually strikes teens and young adults. Many treatment plans for this illness include radiation to the chest and neck (called mantle radiation). About one-third of women who have this type of radiation develop breast cancer before age 50, and many more can no longer make enough thyroid hormone for good health. Both male and female survivors who had radiation to the chest also tend to develop heart disease in their 40s and 50s. Survivorship experts know about these late effects, but most primary care doctors don’t. A recent study of 2,000 general internists who were given a vignette about a female survivor of Hodgkin disease found that:

91% did not recommend yearly breast cancer surveillance
85% did not recommend cardiac surveillance
24% did not recommend yearly thyroid surveillance

The number of survivorship clinics has increased over the years, including clinics for adult survivors of childhood cancer. A list of follow-up clinics can be found in the Pediatric Oncology Resource Center.

3. Tell Your Primary Care Doctor About the Long-term Follow-up Guideline
If you go to a comprehensive survivorship clinic, the experts will base the screening tests you need on your treatment summary. They then will send a detailed report of their exam and screening results to your primary care doctor. But what should you do if you aren’t able to go to a survivorship clinic? The Children’s Oncology Group (the world’s largest organization devoted exclusively to childhood and adolescent cancer research) developed a set of clinical practice guidelines that provide recommendations for screening and management of late effects in survivors of childhood cancer. The guidelines, developed by the 9,000 experts in the group, help physicians provide comprehensive follow-up care to survivors. If you are a survivor who doesn’t see an expert in late effects after childhood cancer, tell your healthcare provider about these guidelines so you can get the care you need and deserve.

4. Take Control of Your Health
Survivors have little or no control over their genetic make-up or the environment in which they live. However, making healthy choices about how to live the rest of their lives gives them quite a bit of control over their future. A sizable number of adult health problems are linked to lifestyle choices, so following are ways you can stay healthy:

Don’t smoke (your insurance might cover programs to help you quit)
Eat a healthy diet (see a nutritionist if you need support)
Exercise and maintain a healthy weight (work out with a buddy to help stay on track)
Use sunscreen (especially on any areas that were irradiated)
Make sleep a priority
Drink alcohol in moderation, or not at all
Good health habits and regular medical care from experts will help protect your health and lessen the likelihood of late effects from your cancer treatment. You can learn more by reading Childhood Cancer Survivors: A Practical Guide to Your Future.

5. Do Things That Make You Happy
Happiness not only makes you feel good, but it helps you stay healthy and live longer. Different people need different ingredients for happiness. Some people join clubs to meet people with similar interests. Others like to hike, kayak or climb mountains. You might relax by reading a good book with a purring cat in your lap. Or contentment might come from helping others, working in a garden or spending time with close friends. Seeking out activities that bring you happiness will not only make you feel better but will improve your health. As a cancer survivor, you have something other people don’t have––an awareness that life can change in an instant and that huge challenges can be overcome, one day at a time. Through your cancer journey, you probably lost friends, gained friends, and laughed harder and cried more than ever before. By taking a few actions to protect your health, you’ll have many more years to enjoy the life you fought so hard to save

*Nancy Keene is a childhood cancer advocate, speaker, writer and co- founder of a nonprofit (Childhood Cancer Guides) that publishes books to help families of children with cancer and survivors of childhood cancer. She has written/co-authored fifteen books––some chosen for Library Journal’s “Best Consumer Health Books of the Year” list. Her work has appeared in Coping Magazine, Reader’s Digest, Journal of the American Medical Association, Exceptional Parent and other publications. She served as chair of the patient advocacy committee of a consortium of 350 children’s hospitals and as the public member on an FDA committee that reviews medications given to children with cancer. Her mission is to help families of sick children and survivors of childhood cancer find their way through the medical maze—one step at a time.

View her blog and books at:
www.childhoodcancerguides.org.

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Lendmark Climb to a Million

Bobby Aiken, CEO of Lendmark Financial, is passionate about finding cures for childhood cancers. Over the last six years, he has known three different young men who were diagnosed with varying types of cancer. All three survived, but their individual journeys caused Bobby to step back and rethink his view of challenges.

It was Chip Madren who had the most profound effect on Bobby. Chip’s father, Ken, and Bobby have had a friendship that’s spanned their lifetimes. The Friday before Chip was diagnosed with Stage IV Metastatic Anaplastic Medulloblastoma and given a very slim chance for survival, the three were fishing together. A normal weekend. But the news that broke on Monday was staggering. Bobby recalls, “In less than five days, we fished, laughed, ribbed one another, encountered a diagnosis of cancer, endured the first of many surgeries, and felt hearts breaking all around us. I’ll never forget the tears that filled the eyes of my family when I shared the news. Life kind of seemed to stop in its tracks.”

As difficult as the early days were, it is the path since then that served as an inspiration to Bobby. “Seeing people pull together to make a difference, watching Chip literally fight for his life and win, having Ken share stories of Lea’s (Chip’s mom) persistence and determination to keep everything aligned, the fight inside a mother for her child is incredible, it goes on and on. Chip’s fight has made me a better person and has positively impacted many, many lives.”

Bobby is a stadium runner, and has spent the last few years thinking about Chip and kids like him who are facing the challenges of cancer while running. He had an idea. What if 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. The Climb to a Millon was born.

On Saturday, August 13, 2016 at Oconee County High School Stadium, Bobby’s vision became a reality as Lendmark Financial Services held its inaugural Climb to a Million. His $150,000 goal was easily surpassed as employees and partners ran and walked 1 million steps. When all was said and done, Lendmark raised more than $225,000 for CURE.

Bobby says, “The Madren family is one of thousands that have to take on this fight every day. It’s hard on every one of them and it’s a fight for every child. It takes every characteristic of strength, persistence, and faith; requiring reliance on one another and on those that surround them. They did it, they continue to do it, and they set the example for others to follow.”

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A Moment with CURE’s Founder, Dr. Abdel Ragab

When Dr. Abdel Ragab started CURE Childhood Cancer in Atlanta 41 years ago, his mission was two-fold. He wanted to raise money for pediatric cancer research, and he wanted cancer patients and their families to have a support group. Today, with CURE funding millions of dollars in research and helping thousands of families throughout Georgia, Dr. Ragab says he is “stunned” at CURE’s growth and success.

“It’s like you put a seed in the ground and it’s now a huge tree,” said Dr. Ragab. “I think that shows the dedication of all the people who work there.”

Dr. Ragab retired from pediatric oncology in 1993. We talked with him recently about CURE, its humble beginnings and the advances in children’s cancer treatments today.

You say when you came to Atlanta and Emory back in 1975, there was a major need for an organization like CURE Childhood Cancer.

“It was critical that we started CURE, because universities are always lacking in funds. Emory at that time was not what you see today. We needed a new microscope to differentiate different types of leukemia, and they didn’t have the funds.”

“CURE started in 1975, and by 1976 we had $6,000. That’s how we bought the microscope. My office was at Grady Hospital at the time and of course it was difficult to go from one office to the next (at Emory). So, the CURE group came up with funds to have a trailer put in at Emory. In that trailer we had a research lab and we had our offices.”

Who were the people who helped raise money for CURE in those early days?

“I would recruit them from our patients’ families. I felt a little bad about that because they were going through a rough time with their kids, and they had to juggle their jobs as well. The Atlanta Alumnae Chapter of the Tri Delta Sorority was also very instrumental in collecting funds. They all did an excellent job.”

What are your thoughts on treatments for pediatric cancer today and the future of treatment?

“My belief is that all childhood cancers are of genetic origin…not to say they are inherited from the parents, although that is always a possibility. But that it has to do with genes and oncogenes and tumor suppressor genes. Destroying these oncogenes is the key. Surgery, chemotherapy and radiation got us this far, but at great cost to the patient. The future lies in manipulating the genetic code, which is proceeding, but very slowly. One day we will look at the present treatment and say ‘How barbaric…’ I hope.”

What’s your reaction to CURE’s growth since you started it in 1975?

“Kristin Connor (CURE’s Executive Director) called and told me that CURE had collected over five million dollars this (fiscal) year. CURE has done a fantastic job and I think there should be a great celebration for that. I think more money should be spent locally, but you never know where the next breakthrough will come from.”

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Tenacious John vs. the Hurricane

After Hurricane Matthew ripped through the Caribbean and moved toward the east coast of the United States, some residents of coastal Georgia had a decision to make. Should they hunker down and stay put or flee their homes until the storm moved out into the ocean? For most the decision was made clear when Georgia Governor Nathan Deal ordered everyone east of Interstate 95 to evacuate.

Faced with this, what would you do? Would you defy reason, logic, and the law to stay behind, or would you pack whatever you could carry and hit the crowded interstate headed west?

If you are five-year-old Tenacious John, you would lie in bed, snuggle your stuffed angelfish and ride out the storm. He is just that tough.

Unfortunately, despite the Governor’s mandate and the storm headed their way, John was unable to leave. You see, John has neuroblastoma – a childhood cancer that develops from immature nerve cells found in several areas of the body. Fresh off of surgery to remove a tumor on his adrenal gland, John was immobile and relatively unconcerned about the storm outside. In fact, John never even bothered to wake up during the entire hurricane, even when two tornado warnings forced his caregivers to wheel his bed into the hallway.

While the hurricane was raging around them, his mother, Ashley said they could hear the wind and rain, but the building made them feel safe. Some water that leaked in around a few windows was their only exposure to the elements. The entire family stayed together in the hospital, and one of their biggest challenges was keeping John’s two-year-old brother entertained during the ordeal. Ashley is extremely thankful for the dedicated staff at Memorial University Medical Center who stayed with them and other patients who couldn’t leave.

Ironically, weeks before the surgery John decided that the doctors were going to use “wind medicine” to blow out the tumor. Little did he know that the wind would be outside the hospital and not in the operating room.

Although the storm is now gone, John still has a long way to go. He will have more chemotherapy, a stem cell transplant, and radiation before he is through with cancer. Brave and hopeful, nothing can stop the boy who slept through one of the roughest storms in Savannah’s history. John beat the hurricane, and in a little while he will laugh in the face of cancer, too.

See what CURE is doing to ensure more tenacious kids like John can weather their storms.