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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/schedules/index.html
• Learn more about the HPV vaccine
  • https://www.cdc.gov/hpv/parents/vaccine.html

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

As I look back over the past twelve months, I am amazed at what we have accomplished. CURE Childhood Cancer has made a big difference in the lives of children and their families. We see the impact every day as we serve on the front lines. But we could do nothing without your generous support. Let’s look at what we’ve done together.

The heartbeat of CURE is our families, and we increased the amount of financial assistance given to families in crisis by 26% over last year. That translates into $153,217 in emergency assistance and $20,000 in transportation assistance grants given to 373 families in need. We also provided $15,265 worth of gas, grocery, and pharmacy cards. This is tangible support given to hundreds of families forced to deal with the devastation a childhood cancer diagnosis brings. In order to meet a need we recently discovered, your gifts allowed us to create a new lodging assistance fund to help families who travel for treatment and need a place to stay for one or two nights.

We quadrupled the number of counseling sessions provided to families in need of emotional support, helping 37 families through the psychological and emotional hardships of childhood cancer. We also hosted more than 100 parents at our bereavement weekends.

CURE’s Open Arms Meal Program served lunches and dinners to over 10,000 hospitalized patients, parents, siblings, and nurses in Atlanta and Savannah. Our patient and family services team also delivered 1854 snack bags and 400 toiletry bags. CURE joined 396 families in their first days of diagnosis by giving a tote full of practical items and tips from other families who have walked the childhood cancer journey. And when we learned that many South Georgia families receive treatment in Jacksonville, your gifts allowed us to offer our support there, also.

Those are numbers; and they are both impressive and important. But our work is not in numbers, it is in people – specifically children fighting cancer and their families. So I wanted to share a recent note we received from a mom dealing with the aftermath of her son’s cancer treatment.

“The implications of our son’s cancer diagnosis did not end the day treatment was completed. Post-treatment implications were just different. I was deeply grateful for the counseling sessions CURE provided because they helped us move forward in a positive manner after cancer treatment and our son has transitioned beautifully back into school, play dates with other children and normal daily living.”

That is a real family, a real problem, and a real solution provided by CURE – made possible only through your generosity. We are grateful for the opportunity to serve families in crisis, but that is only part of our mission. Because children are still fighting cancer, we will too.

Our goal is to eradicate childhood cancer. To that end, CURE awarded over $3.2 million in research grants aimed at improving the survival rates of children fighting cancer. While survival rates are increasing for some childhood cancers, too many children are still left behind. With your support, we are changing that.

Thank you for entrusting us with this work. We are grateful every day for the role your generosity allows us to play in the lives of these precious families. Our hope remains that this will be the year we find a cure.

With Gratitude,

Kristin Connor

Executive Director, CURE Childhood Cancer

Her last name, Abbas, means “lion” in Arabic and you don’t have to talk with Anisah very long to realize that behind her beautiful, smiling countenance beats the heart of a lion.

Anisah is twelve. She is outgoing and incredibly bright. She wants to go to Bali, Italy, and Japan. She wants to visit every state – a goal she is fast approaching. She wants to road-trip to California; but mostly, she wants to leave cancer in her dust as she drives away. Because this lion is fighting cancer for the fourth time.

Anisah was first diagnosed with a Wilms tumor at two years-old. After harsh treatment and surgery to remove a kidney, the cancer returned when she was eight, and then again when she was ten.

Last year, Anisah’s cousin, Misha, convinced her to make a short movie about her life’s story. Then Misha submitted it to The America I Am Youth Film Competition, which is part of the Tribeca Film Institute. Films in the competition had to be five minutes or less and created by a child between the ages of twelve and eighteen. As a budding actress, Anisah had a great time creating the film but also developed a passion for the production and editing aspects of filmmaking.

And then the call came!

Anisah’s film, Life of a Lion, was chosen as one of the top five finalists out of two hundred entries.

“I was so excited,” she recalled. “I started screaming and jumping up and down. And then I started getting ready to go to New York!”

Just before she left, a routine six-month scan revealed that her cancer was back for the fourth time.

“It’s heartbreaking,” she said. “I’ve been through so much and I don’t think I deserve this. But I’m more positive this time and I’m not scared. Sometimes people treat you different, but all of my friends are really supporting me.”

Right away, there were questions about whether she would be able to go to awards ceremony in New York City. She told her doctors she would do whatever it took, and they gave her a bridge chemo which allowed her to travel. She said she actually felt pretty good as she prepared to leave.

The trip was wonderful. She went with her mom and sister, Asiya, and Misha flew in from California to join them. She got to attend classes on filmmaking and meet the other entrants. When it came time for the awards, Anisah’s story won the award for Best Story!

“All of the other kids had expensive cameras and production crews,” Anisah laughed. “I made mine with an iPhone 6 and only my cousin and sister helped me. I heard someone say their budget was a thousand dollars. My budget was zero.”

Anisah was the youngest film finalist in Tribeca Film history.

With that honor under her belt, Anisah hopes to make more films, specifically documentaries, after she is finished with cancer. She also loves to sing and Bollywood dance. Although it seems that she is on track to a career in the arts, she has a strong desire to be in the military. Her grandfather was a pilot in her family’s home country of Bangladesh, and she wants to follow his footsteps into the Air Force.

“Even though I am small, I feel that I’m a lion because I am fierce and strong,” she says. “And nothing can stop me!”

Don’t put it past her to be a pilot, soldier, or anything else she chooses. After all, lions are beautiful, but they were made to roar.

You can watch Anisah’s winning film by clicking here.

How would you creatively engage attendees at a trade show with your products while at the same time teaching them about your company’s social initiatives? Our friends at Virtustream found a unique way.

In May, Virtustream sponsored a booth at the Sapphire Now conference in Orlando, where business and IT executives come from around the world to learn more about new SAP products. But they wanted to do more than promote their products. They wanted to share their social conscience with everyone they met at the show.

While their presenters held sessions on their product offering at Virtustream’s booth, a digital whiteboard artist drew renderings pertaining to the topics. She worked the presentation into a piece of art right before the attendees’ eyes. This allowed everyone passing by to see what was going on and basically acted as an advertisement for their booth. Further, when the session was finished, Virtustream had the images downloaded to a t-shirt press so those who attended could literally wear the notes home.

Now they were ready to add their heart to the effort. They call their cause marketing “Virtustream In Action,” and CURE Childhood Cancer is one of their chosen charities. Not only did they highlight CURE’s important work in the life of children and families fighting cancer, but in keeping with the artistic theme, presenters gave out crayons. Nothing can link art and children like a crayon. Crayons were given for attendance, participation, and for asking literally any question. At the end of the session, attendees were asked to deposit the crayons in boxes marked with CURE’s logo. For each crayon deposited, Virtustream made a monetary donation to CURE.

At the end of the show, the donation totaled $5000.

It is exciting to see one of our corporate partners use creativity and ingenuity to share our efforts with a whole new audience. Many thanks to Jennifer Russo for spearheading this idea and for the entire team at Virtustream for coloring CURE all over the show.

“That one word, six letters, two syllables,” recalls Adrienne Young. “That word, cancer – it changed my life forever.”

Until the day she heard that word, Adrienne lived a happy, yet hectic life. In the mornings, she got her daughter ready for school and took her son to stay with family while she worked. She enjoyed playing with her kids in the evenings and then got up to do it all over again the next day – until the day came that two-year-old Amari stopped eating.

“At the time, I thought my daughter was bringing home germs from school because Amari had just been to the pediatrician in September, and the doctor said it was just an upper respiratory infection.”

But when Adrienne picked Amari up on November 26, 2014 and listened to her family describe how he had been acting that day, she immediately called the pediatrician’s office. Because it was the day before Thanksgiving, the doctor’s office had closed early so she decided to take him to the emergency room. A preliminary X-ray indicated pneumonia, and the doctor decided to transfer Amari to another hospital better suited to care for him.

The next day Adrienne heard that word – cancer.

Amari was diagnosed with Pleuropulmonary Blastoma or PPB. PPB is a rare type of childhood cancer which begins in the chest, usually in the lung tissue. Because its symptoms are so similar to pneumonia, PPB often goes undiagnosed until it progresses, as it had in Amari. X-rays showed that the tumor inside his little body was approximately the size of a football.

“I’ve read about cancer and have had family members fight it,” Adrienne said. “But I never thought I would go through it with my own child. Before he was born I prayed to God he would be a cute, healthy baby with a lot of hair. How did we go from being told pneumonia to cancer?”

The next two things the doctor told her scared Adrienne even more. He said that although he had treated many children with cancer, he had never seen this particular type. Further, the type of cancer which had invaded Amari’s chest was so rare that he could not find any statistics on survival rates.

Instead of going to Chuck E Cheese for his third birthday party as planned, Amari spent the day in the hospital while the doctors decided on a treatment plan. One night, Amari’s breathing became increasingly labored because of the growing tumor inside him. Finally, Amari was rushed into surgery, where the surgeon was able to remove the entire tumor. Once he recovered from surgery, Amari began the first of twelve rounds of chemotherapy.

In the following months, Amari missed family gatherings and holidays, and he was forced to spend long periods of time away from his sister during hospital stays. Because she wouldn’t leave his side, Adrienne had to quit her job.

“Watching his hair fall out, not being able to go in the operating room with him, and seeing so many chemo drugs going into his body was never easy,” remembers Adrienne. “But the greatest day finally came on July 29, 2015. It was his last chemo day!”

Amari weathered the storm and is doing great now. He currently attends Pre-K and is what his mother likes to call “a true boy” – energetic and always ready with a smile. He still must get periodic scans, but, thus far, he has shown no evidence of side effects from the treatment. In fact, he has grown to be proud of the scars which mark that period of his life, especially the one that runs down the middle of his chest from the surgery to remove the tumor. He calls that his beauty mark.

CURE has been with Amari and his family since the beginning, and we are thrilled to watch him become “a true boy.” We continue to work for the day when all children put cancer behind them and have the chance to reach their full potential.

Never before and never again will there be anyone quite like Jack Kennedy.

He was larger than life! Charismatic with a sense of humor that will remain unmatched, he was a long-time, extremely generous supporter of CURE and the children we serve.

Jack’s history is a fascinating one. He met and married his wife, Donna, while he was a national sales manager for a gift wholesaler. But over the years he also worked as a bartender, cabdriver, caddy, and a sports talk radio host – during which time he met a young pitcher named for the Atlanta Braves named Tom Glavine.

It was Glavine who would introduce Jack to the world of childhood cancer and the mission of CURE – a mission about which he became incredibly passionate.

The two worked together on many events for CURE, and after Glavine received the phone call from the Hall of Fame that he would be a first-ballot inductee, Jack decided to mark the occasion with some good-natured ribbing. He had six dozen customized golf balls inscribed with, “Tom Glavine 203 losses”.

“I knew him before he was good,” said Kennedy. “With all this talk about Tom having 305 wins and Greg Maddux having 355, nobody ever mentions that they also had 430 losses between them. So, I figured I’d have these made for Tom through a golf professional friend in Chicago. Nobody laughed harder about it than Tom Glavine.”

By this time, Jack had become a successful figure in the furniture industry. He proudly represented upholstered furniture lines to Havertys, and over two decades developed a strong business for them and adopted all of their employees as his second family. His compassion and passion ran deep in every facet of his life.

Jack was determined to end the suffering of children fighting cancer. He was truly committed to CURE Childhood Cancer, acting as Presenting Sponsor for many events, and as an ambassador for the cause wherever he went. As he fought his own battle with cancer, he said he could not bear the thought of children having to suffer from this horrific disease, and he fought up until his own death to improve theirs.

Jack passed away on January 3, 2017.  To all of us and most others, his death was sudden and unexpected. Jack had been fighting cancer – bravely and silently. He didn’t want to be the focus of attention, so he kept his fight a secret. Through Jack’s Fund, we will honor the man we adored and continue his legacy of loving children with cancer by working to find cures. All funds raised will be directed toward life-saving pediatric cancer research reviewed by CURE’s Scientific Advisory Council and deemed to be likely to have clinical or therapeutic application within 5 years. We feel certain that Jack would want funds raised in his memory to advance research that will help children today. We proudly and humbly further Jack’s wishes through this fund named for him.

Jack’s Fund

Jack Kennedy

February 7, 1951 – January 3, 2017

Among the pediatric cancer research projects that CURE funded in 2011 was a clinical trial for leukemia at the Aflac Cancer Center at Children’s Hospital of Atlanta. The doctor’s progress report at that time read as follows:

“Dr. KY Chiang at Aflac is now in year three of his clinical trial using AMD3100 as a chemosensitizing agent in blood and marrow transplants in chemotherapy-resistant acute leukemia patients. The one patient enrolled in the study (which hoped to enroll more, but no other patients met the criteria) received the treatment and is now more than 600 days post treatment, with no signs of leukemia or GvHD.”

Note that only one patient met the criteria to be enrolled in the study. That fact disappointed the doctor as he had hoped to gather more data from a larger pool of patients. But it did not disappoint that patient or her family. We know that because we asked her mom.

In August of 2011, Elena completed her treatment for ALL. Unfortunately, her first battle was not a complete victory. Elena relapsed in February of 2012. Instead of enjoying the carefree days of summer, Elena underwent nine intense days of chemo and radiation to prepare her body for a life-saving bone marrow transplant.

“Elena’s body didn’t respond to the chemo,” said her mother, Christy. “We were scared and frustrated and running out of options when we learned that Elena met the criteria to be part of a clinical trial at CHOA Egleston. The experimental treatment was very hard on her and she was in the hospital for several months, but the treatment cured Elena.”

She had her bone marrow transplant on July 25, 2012, nearly five years ago. And on May 25, 2017, she walked across the stage as a high school graduate!

“These years have been challenging in so many ways – spending over two months in the hospital, three weeks in the Ronald McDonald House, and living in isolation until May of the following year!” she said. “But Elena just turned eighteen. She graduated with honors and a 3.93 GPA. She has had perfect attendance her senior year and logged over 100 community service hours – all while struggling with late term effects of treatment. We are so very proud of her and all she has accomplished! And these added years of Elena’s life are because of CURE’s funding of the trial Elena was on!”

CURE directs $3.2 million or more annually to targeted research which is likely to have a positive impact on children within five years. Due to privacy restrictions, we don’t often get to see the fruits of those investments. But today, pictures of a girl with beautiful red hair and stunning smile reaching out to grasp her diploma show us the reward of our work… and your work as you partner with us to find a cure.