Category Archives: Childhood Cancer

Make Every Bite Count

By Lita Lopez

Nutrition plays a vital role as your child goes through the process of cancer therapy. A well nourished child undergoing cancer treatment tolerates treatment better, tends to have less severe side effects of therapy, has fewer treatment delays and dose reductions of chemotherapy, heals more quickly and tends to feel better and stay more physically active.

It is best to maintain a nourished state or correct underweight or excess weight early in the cancer therapy so as to avoid a problem requiring specialized nutrition therapy. The emphasis is on providing good nutrition at home in between treatments. As one mother of a child undergoing treatment advised, “Stuff him to the gills” at home when your child is feeling well and where familiar and favorite foods are easily available.

The type of cancer and stage of treatment determine the risk for developing feeding problems and malnutrition. Cancers associated with high nutritional risk include advanced or metastatic neuroblastoma and Wilm’s tumor, acute myeloid leukemia, abdominal or nasopharyngeal sarcomas, and some types of brain tumors. Infants who are diagnosed with any type of cancer are also at high risk.

Malnutrition can develop as a result of radiation to the abdomen, poor appetite, nausea, vomiting, diarrhea, mucositis (mouth sores) and taste changes, intense frequent courses of chemotherapy (less than every 3 weeks), major abdominal surgery, advanced disease and lack of family or health care
support system.

To address a child’s decreased appetite and weight loss, suggestions include:

• Plan for 2-3 snacks in addition to 3 meals daily; avoid letting your child drink and eat all day. However, there may be exceptional days when your child feels good and you want to give any food your child requests at whatever time of the day or night. The child who eats only a few select food items may need supplements to meet her caloric and protein needs.

• Practice the “division of responsibility” as defined by Ellyn Satter: you, as a caregiver, are responsible for offering nutritious meals and snacks at designated times and your child is responsible for how much and whether he will eat.

• Make every bite and every sip count. Serve foods that are rich in calories and protein. limit “empty” calorie foods and drinks that can cause the child to feel full quickly such as soda, juice and candy. If your child is overweight, serve low calorie foods with plenty of vitamins and minerals such as fresh fruits and veggies.

• Encourage regular mouth rinsing and brushing to keep the mouth clean.

• Make mealtime an enjoyable experience. Avoid arguing, punishing or bribing a child who cannot or will not eat. It is better to preserve your relationship than waste your time and energy with food struggles.

• Many children don’t eat as well when they are in the hospital. Do not offer favorite foods while your child is getting chemo. If she gets sick eating that  food, she will most likely refuse to eat it thereafter.

• Sometimes an oral nutritional supplement such as Pediasure, Kid Essentials, Carnation Instant Breakfast or Resource Breeze may be necessary
to help with poor intake.

Another form of nutritional risk is excess weight. Children with leukemia who receive corticosteroids as part of their treatment are at high risk for excess weight gain because of increased appetite and decreased physical activity. Steroids may also cause high blood sugars, high blood pressure and weak
bones. So what can you do?

• Limit salty foods to prevent fluid retention.

• Offer low-fat milk and water only. Limit sugarcontaining drinks including fruit juice, sweet tea, soda, Kool-Aid, lemonade, etc.

• Have plenty of fresh fruits and vegetables to offer for snacking.

• Use lower fat products such as skim or low fat milk. Avoid fried foods and junk foods.

• Keep your child active.

• Limit watching TV or video games to less than 2 hours per day.

• Be careful about food choices when eating out or buying prepared meals.

• Offer foods rich in calcium and in some cases, a calcium supplement may be necessary.

Types of Nutrition Support

1. Oral feeding is indicated in children with low nutritional risk, less advanced disease or if the disease is in remission on maintenance chemotherapy. However specialized nutrition support may be necessary if the child is malnourished or if the child has severe weight loss and not expected to eat sufficient amounts of food.

2. Tube feeding is indicated where it becomes too difficult for the child to eat and drink enough to maintain or gain weight or if calorie and nutrient needs have greatly increased. Most children feel better and start having more energy once they are getting enough formula.

3. Parenteral Nutrition provides calories and nutrients intravenously using the central line or the port. It is generally used after surgery of the gastrointestinal tract, complete blockage of the intestine, severe mucositis, severe nausea, vomiting or diarrhea despite medicines. PN should be started only if tube feeding is not a possibility because it poses higher risk for infections, can make the kidneys and liver work harder and does not maintain a healthy intestinal tract.

While your child is being fed through a feeding tube or intravenously to supplement his poor intake, it is important to see if your child will eat. Even if he eats a small amount, it is best to continue to offer food to prevent future feeding problems when the tube feeding or intravenous nutrition is discontinued.

Be sure to talk to your child’s doctor, nutritionist or any member of the oncology team for any specific questions and concerns you have regarding your child’s nutrition.

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Improving the Odds by Understanding the Mechanism of Chemotherapy Resistance

By Clint Williams

What is true in gangster movies is true with cancer tumors. The bad guys have bodyguards, but instead of threatening death, they try to prevent it!

Research by Dr. Kelly Goldsmith, a pediatric cancer specialist at the Aflac Cancer Center and Blood Disorders Service of Children’s Healthcare of Atlanta, is targeting the molecular bodyguards protecting particularly nasty cancer cells. CURE Childhood Cancer is proudly funding Dr. Goldsmith’s research.

Neuroblastoma is a cancer that develops in the nerve tissues of the adrenal gland, abdomen, chest and neck. Apart from brain tumors, it is the most common solid tumor among children and about half of neuroblastoma cases are found in children younger than two years old.

The gravity of a diagnosis of neuroblastoma varies according to the tumor’s classification among three risk categories: low, intermediate, and high. A low-risk tumor is highly curable, but high-risk neuroblastoma kills more than half of the children with the disease.

“The majority of those children die from recurrent disease because the cancer becomes resistant to chemotherapy,” says Goldsmith, also an Assistant Professor of Pediatrics at Emory University School of Medicine. “For this tumor, we’ve got to figure out a better way to make the children chemotherapy sensitive again or to therapeutically target the tumor without harming normal tissues.”

Apoptosis, or programmed cell death, is a method by which cells are eliminated from the body without releasing harmful substances to surrounding normal tissues. Apoptosis plays a crucial role in developing and maintaining health by eliminating old cells, unnecessary cells, and unhealthy cells, like pre-cancerous ones.

Chemotherapy and radiation kill tumor cells by triggering apoptosis. Therefore, many aggressive tumors, including neuroblastoma, have found ways to survive chemotherapy by altering their apoptosis genes.

Neuroblastoma cells depend on certain members of the Bcl-2 family of proteins to protect them from apoptosis. Other members of the Bcl-2 family, called BH3-only proteins, can trigger apoptosis.  Research by Goldsmith using small chains of amino acids mimicking BH3 proteins (BH3 peptides) has potently killed neuroblastoma cells in test tubes and neuroblastoma tumors in mice.

She has also determined what Bcl-2 proteins a tumor depends on for survival by testing small tumor organelles such as mitochondria with the same BH3 peptides.

The goal is to develop profiles of tumor cells, breaking them down to the bare essentials, to best determine what drugs to use in treatment.

But establishing the effectiveness against cancer cells in test tubes and test sujects is just one step along the way to treating children. The next phase of research, Goldsmith says, requires fresh neuroblastoma tumor tissue.

But there are many competing demands for the limited supply of tumor tissue and Goldsmith will be learning and developing techniques to make the best use of the samples.

Goldsmith is building on research she did at Children’s Hospital of Philadelphia where she was recruited from in the fall of 2009.  Goldsmith is now in Atlanta to be closer to family – and – because this is where she can best help sick children by turning research results into practical treatment.

“One thing I really like about being here is the drive to translate from bench to bedside,” Goldsmith says. “I think that is such a huge focus and here they are really trying to make it a reality.”

“CURE is proud to be supporting Dr. Goldsmith’s promising research,” remarks Executive Director Kristin Connor.  “We are very concerned with making new treatments available to children as quickly as possible. We are so pleased that Dr. Goldsmith shares these urgent concerns as she works to find cures for a very devastating form of pediatric cancer.”

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Teens and Cancer

Being a teenager is hard enough, but add a diagnosis of cancer to the mix, and the challenges can be daunting. For teens, the psychological effects of a diagnosis can differ widely from the effects on young children, and teens need different forms of support. Anna, an 18 year old brain tumor survivor, explains, “There is so much pressure [in the teenage years] to conform and fit in, and for some of us cancer makes that almost impossible. We have such different experiences and have gone through things other teens can’t even imagine. Many times they become uncomfortable around us, not understanding our differences.” On top of that, Anna relates, “Uncertainty about the future is also an issue that all teenagers have to deal with. For cancer patients, it can be much more stressful to think about higher education or jobs, and how our experiences with cancer have altered our opportunities.”

Most teenagers desire independence and freedoms, yet a cancer diagnosis necessarily causes increased reliance on parents again. As teenagers want a voice in what happens with their care, conflicts may arise between teens and their parents. Effective treatment plans encourage straightforward communication and incorporate other means to help teens maintain a sense of control over their lives.

We asked teenage patients and survivors how friends, parents, siblings, teachers and others can help teens get through their treatment. “Knowing other teens that are going through similar trials helps a lot,” says Anna. “Through friendships such as those made at Camp Sunshine, we feel less isolated from the world and more like we are ‘normal.’”

Jenn, 16, found it difficult to catch up with her school work. She advises teens struggling with school to communicate with their teachers and “remember most teachers want to help.” Jenn reflects, “My teachers were very understanding and willing to work with me. Don’t be too proud to ask for help when you need it.”

Madison, 17, has additional advice. For teens battling cancer she says, “Do things you enjoy. For example, hospital arts and crafts might seem juvenile but things like that are great for giving your mind a break.” Friends should make special efforts, too, she says. “Treat us normal. Even if we’re too sick to go somewhere, just having an invitation makes us feel like we’re still part of the group.” Madison also says that texting and emails are great ways to stay connected with friends when going through treatment. She advises friends to visit often, whether at home or in the hospital and says, “You don’t have to come armed with gifts – a visit is enough.”

 

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The Monster Of A Disease That Children Face

Untitled1Cancer is the number one disease killer of children in the U.S. It’s the second overall killer behind accidents. Approximately 12,700 new cases of pediatric cancer were diagnosed in children 0-20 years of age in 2008. The peak of childhood cancer incidence ravages infants to 5-year-olds, barely starting their lives. Unfortunately, cancer among children is not one disease type. there are 25 different types to research and treat. Each type has its own set of challenges.

The constant obstacles to improving survival rates are time and money. For children with cancer, time is never on their side. Money for research is as precious as blood. Less than 2% of federal funding for cancer research is directed toward solving cancers that afflict children. This inequitable situation challenges not only the affected children and their families, but the humanity in all of us. A monster is one thing. An unfair fight is another.

For more information on how you can support CURE, visit us at www.curechildhoodcancer.org

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True Friends: An Essay by Marc Nolan

Unknown-2Marc Nolan and Sean Michael Dever have been friends since they were toddlers. The boys are now 13 and their friendship remains stronger than ever. When Marc received a school assignment to write an oratorical about “A Person Who Has Touched Many Lives,” the choice was obvious. He wrote about his friend, Sean:

When you ask people to name someone who has touched many lives, their first responses would usually be of religious figures, athletes, entertainers and so on. The person whom I believe has touched many lives is a friend. He is 13 years old like me and I’ve known him since before kindergarten. He used to attend St. Joseph School and was on my soccer team that our dads coached. His name is Sean Dever. Almost two years ago, he was diagnosed with cancer on his left knee. I for one spazzed out. Wouldn’t you be spazzing out if you found out one of your best friends had cancer?

But it wasn’t only me. Everyone was upset. Everyone was sad. Everyone was afraid. It was a shock to many of us how this could happen not only to someone we cared about, but to someone who is so young like we are. This is because so many people cared for Sean and his family. We couldn’t imagine what he and his family were going through. This news triggered an outpouring of support and prayers for Sean’s healing. I’ve always know Sean to be a tough person. Through his illness and pain, Sean remained strong, brave and most of all, faithful.

Through word of mouth, emails and a Caring Bridge website, more and more people learned about Sean, and they were touched with how he was coping with his day-to-day battle with cancer. People from all over the world were leaving Sean messages of support. It was amazing!

Those people who have been touched by Sean say that they appreciate life more and don’t let the small things bother them. Many people became aware of childhood cancer and are volunteering their time or donating money to help find a cure. We have had rallies and races to raise money and awareness because of what Sean has experienced and how it has affected his life and his future. A lot of us have stronger faith in God because through Sean, we were reminded of God’s love.

Eventually, Sean had to go through chemotherapy and had to have his left leg amputated. So many thoughts and prayers came pouring in and the miracle today is that Sean can walk and play sports with a prosthesis and is cancer free. I’ve played basketball against Sean recently and it is awesome how he doesn’t let anything stop him. He now also plays lacrosse and gets better everyday with his prosthesis.

Many people become famous and touch people’s lives once they are grown ups. To me, it is a bigger achievement to be able to touch people’s lives while you are young. I am glad Sean is my friend and has touched so many lives – especially mine.

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For more information on CURE, visit us at www.curechildhoodcancer.org

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CURE Named Fund: Hayley Hunter

State Tourney 003Hayley Hunter is the 9 year old daughter of Eddie and Tammy Hunter of Ball Ground, Georgia. In April 2008, she was diagnosed with stage IV neuroblastoma, a rare and aggressive childhood cancer. It has taken surgery, six cycles of toxic chemotherapy, twelve rounds of radiation and an autologous stem cell transplant to rid Hayley of this disease. 

The current treatments available for neuroblastoma do not guarantee that Hayley is cured. Hayley is still at risk for relapse and is at risk for secondary cancers like leukemia and thyroid cancer, as well as infertility, scoliosis and other significant side effects.

Throughout treatment Hayley showed a lot of spunk. She never wanted to just sit at home and feel badly. Immediately after chemotherapy, she would insist on leaving the hospital and going to the movies with her brother, Ewing, or going to the basketball gym to watch her sister, Hannah, play basketball. It is our hope that we take Hayley’s same spunk to this fight against cancer as we strive to raise awareness of pediatric cancers and to raise money for the development of new and better treatments that lead to a cure.

UT and Bball 277The purpose of the Hayley Hunter Research Fund is to provide funding for basic and clinical research relating to neuroblastoma, a pediatric cancer of the central nervous system. Mainly affecting children, neuroblastoma is a cancer of the sympathetic nervous system, a nerve network that carries messages from the brain throughout the body. 

Researchers believe that neuroblastomas form when normal neuroblasts, the immature cells of the sympathetic nervous system, fail to mature into nerve cells and begin growing and dividing uncontrollably, leading to the growth of cancerous cells. Approximately six hundred children a year are diagnosed with neuroblastoma in the United States, the majority of which are under the age of five years. Neuroblastoma is the most common extracranial solid tumor found in children and accounts for half of all malignant cancers found in infants. Neuroblastoma most commonly starts as a solid mass in one of the adrenal glands, which are located above the kidney, or in the nerve tissues in the neck, chest, abdomen, or pelvis. The cause of neuroblastoma is unknown.

For information on how you can donate to the Hayley Hunter Research Fund visit us at www.curechildhoodcancer.org

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Spotlight: Eli Polk

Unknown-3He is a Fireman, a Soldier, a Pilot, a Dinosaur, a Knight, a Pirate, a Big Game Hunter and would only answer to “Oinky” for quite some time. He is a 3 1⁄2 foot, forty pound five year old perpetual motion machine. He is without a doubt the toughest person I know, and he’s our son Eli. He has Acute Lymphocytic Leukemia, but it certainly does not have him.

On January 9, 2007 Eli woke with small petechiae on his face, and a few hours later we were sitting in the Emergency Room at Scottish Rite. There we met Dr. Lew and Dr. Watt; further testing was ordered, and soon Dr. Watt was explaining our son had leukemia. A little while later, Dr. Lew explained where we were and what would need to happen over the next few days. Over the next several days, time simultaneously stood still and moved at the speed of light. Peggy and Eli settled into a room at the Aflac Cancer Center and his long journey began. We tried our best to explain the unexplainable to our daughters, Emily and Hailey. Meanwhile, Eli underwent more testing, exams and evaluations in the first three days than most of us will experience in a lifetime. Peggy never left his side; she has been his Mom, Nurse and Bodyguard. Almost overnight she became an expert on the medications, treatments and protocols our son would face.

During his month long stay on the Aflac Cancer Center ward we met many families. Some were like us, new to the community and still trying to figure out how to get through the day. Others were the veterans who appeared to have a firm grip on the situation. Volunteers from CURE Childhood Cancer were some of the first “non- medical” people to meet with us. I came in one day and there was a big blue sack, a white Teddy Bear, a sweat shirt and a small library of reading material. CURE volunteers had spent time with Peggy explaining the different programs and support CURE could provide. They answered our questions, but the greatest thing was, at a time when it seemed everyone had something to say, they simply listened. They brought food for the staff and families and let us know we were not alone and that there was a light at the end of the tunnel.

Throughout all of this, our daughters, Emily and Hailey, have been remarkable. Peggy and I have tried to ensure they lead a normal life and not become “the other kids.” There have been times when their plans were changed or canceled in order to meet the needs of their brother. They have been there at every turn in the road, rarely complained and have shown a level of maturity far beyond their years. It’s my hope that one day they will understand the positive impact they have had on Eli. There is no way I can express in words how proud I am of them. They have been the quiet heroes of our family. From his initial hospital stay through our now monthly clinic visits, I’ve watched in amazement as the physicians, nurses and staff work tirelessly to care for Eli and the other children entrusted to their care. Eli’s leukemia is now in remission, and he is well into the maintenance phase of his treatment.

Since leaving the hospital in January 2007, he has only spent one other night in the hospital. Most days a stranger would have no idea he has leukemia. Almost anywhere you look in and around the Aflac Cancer Center, you will see CURE at work. It can be seen in the form of the training our physicians and nurses receive, in support of various support programs, or sometimes, best of all, you see their sticker on the snacks in the infusion room. Faith, family, friends, events and occurrences all have and will continue to “shape” Eli’s character throughout life. At five years of age, he is already very strong in his sense of faith and family.

As of this writing we are 802 days into Eli’s journey and have about 365 days until the first steps of his journey are over. In the beginning, I would not have even considered looking so far into the future. However, now it is a foreseeable reality, there is LIGHT and LIFE at the end of the tunnel. I look forward to seeing the man our son will become.

Thanks,

The proud father of Emily, Hailey and Eli

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