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Will Trump Sign the Childhood Cancer STAR ACT?

staract1-300x122In an effort to help thousands of children who undergo cancer treatment each year, U.S. Senators Jack Reed (D-RI) and Shelley Moore Capito (R-WV) introduced the Childhood Cancer STAR (Survivorship, Treatment, Access and Research) Act.  This bipartisan legislation will advance paediatric cancer research and child-focused cancer treatments, while also improving childhood cancer surveillance, and providing resources for survivors and those impacted by childhood cancer.

Too many young people’s lives have been cut short by cancer.  These kids and their families who’ve battled this disease inspire us to take action.  The Childhood Cancer STAR Act will help young cancer patients and their families get access to potentially life-saving treatments, support survivors, and move us another step closer toward our goal of ending pediatric cancer,” said Senator Reed.

This bipartisan legislation will continue the advances in research, prevention and care for our loved ones and families impacted by childhood cancer,” said Senator Capito. “The Childhood Cancer STAR Act gives parents and patients access to the information they need to make vital decisions about treatment and care post-treatment. This legislation will also give those who understand the unique needs of childhood cancer patients a seat at the table when decisions about cancer care are taking place.”

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Dangers of Obesity in Childhood Cancer Survivors

obese-childrenUnfortunately, for Survivors of Childhood Cancer, the risks to their health are not over by any means…

Various studies have shown that Childhood Cancer Survivors may be at increased risk of being obese due to the therapies they underwent to fight the cancer.

Among the strongest predictor of obesity in survivors was childhood obesity, which is also a strong predictor of adult obesity in the general public. Other obesity risk factors were age and childhood cancer treatment.

Obesity rates are especially elevated in Childhood Cancer Survivors who were exposed to cranial radiation, which is used to prevent or delay the spread of cancer to the brain.

In a study published online in CANCER, a peer-reviewed journal of the American Cancer Society, a team led by Carmen Wilson, PhD and Kirsten Ness, PhD, of St. Jude Children’s Research Hospital in Memphis, designed a study to estimate the prevalence of obesity among childhood cancer survivors and to identify the clinical and treatment-related risks for obesity in these individuals. The study also looked for potential genetic factors that might play a role.

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Former Child Cancer Patient now Nurse in Same Hospital she was Treated

jessica-lewisA young nurse is giving hope to child cancer patients in the very place that saved her life. 22-year-old Jessica Lewis beat cancer three times as a child, each time at Wolfson Children’s Hospital in Jacksonville, Florida.

Lewis says her personal experience and her fight against childhood cancer inspired her to become a nurse and return to the place where it all began.

Jessica was diagnosed with Wilms Tumour, a form of kidney cancer, at the young age of 6, and was treated at Wolfson Children’s Hospital – she did not just beat the cancer once, but three times!

Recognised year after year as one of America’s Best Children’s Hospitals by U.S. News & World Report, the 216-bed Wolfson Children’s Hospital is a non-profit organisation. The Hospital relies on charitable donations to provide world-class care for all children in the region.

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Advice from a Teenage Cancer Survivor

carly-freelsCarly Freels was a typical high school junior—she was a friend to many, she was an accomplished athlete, and she was looking forward to her senior year.

All this came to an abrupt stop when she was diagnosed with cancer. Her world changed overnight, but her faith never wavered.

In this short article, Carly shares some advice about coping with cancer and dealing with a friend or family that has been diagnosed with cancer, from personal experience.

Nearly 16,000 U.S. children and adolescents under the age of 20 are diagnosed with cancer each year. I am one of them. I was diagnosed with Hodgkin Lymphoma when I was 17 years old.

While nothing can fully prepare a person for cancer to enter their life, I want to share a few things that helped my family and me cope with my diagnosis.

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Never Give Up On Your Dreams

gabi-shull-2Gabi Shull was a very active little girl; her favourite hobbies included dancing, reading, and hanging out with friends and her 3 sisters.

In early January 2011, 9-year-old Gabi went ice skating with friends. She fell and landed rather badly on her right knee.

After a series of x-rays, in a lot of pain and with no improvement, she was put on crutches and scheduled for an MRI.

Gabi’s MRI results showed what looked to be osteosarcoma, and this diagnosis was confirmed after a surgical biopsy.

The doctor said that Gaby’s skating accident was actually a blessing in disguise that may have saved her life because, were it not for the fall, they may not have known that there was anything wrong with her knee until it was too late

Gaby then underwent 12 weeks of aggressive chemotherapy treatments to shrink the tumour to an operable size; each treatment required a 4-5 day hospital stay along with several hospital admissions for fever and/or neutropenia.

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Childhood Cancer Survivors with Poor Diet at Risk of Chronic Illness

plate-of-foodA new study suggests that survivors of childhood cancer tend to have a poor diet in their adult life; a diet lacking essential nutrients might increase the risk of chronic disease for survivors of childhood cancer, as they are already more prone to developing serious illnesses.

The study was carried out by researchers from the Friedman School of Nutrition Science and Policy at Tufts University in Massachusetts, in collaboration with St. Jude Children’s Research Hospital in Tennessee.

The team examined whether there was a connection between childhood cancer treatment and the survivors’ nutritional intake.

Using a self-administered Block Food Frequency questionnaire, the study looked at the diets of 2,570 adult survivors of childhood cancer to see if they met the requirements of the 2010 Dietary Guidelines for Americans. The results were recently published in The Journal of Nutrition.

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Beating Acute Lymphoblastic Leukaemia

Acute Lymphoblastic Leukaemia Awareness RibbonAlthough Acute Lymphoblastic Leukaemia is a devastating diagnosis to any child, when it is diagnosed early enough, there is hope, as can be seen by the following case.

In the spring of 2009, Grant’s parents noticed that he had a very bloated and hard stomach, but thought the conditions would simply go away naturally. His distended stomach remained for days and was accompanied by a low grade fever so Mom and Dad immediately took him to the emergency room.

Following extensive tests and scans, physicians discovered anaemia, an alarmingly low platelet count and an inflamed spleen. Grant’s father, a pathologist, examined the cells and immediately knew the grim diagnosis of leukaemia for his grandson.

On May 24, 2009, after additional tests, transfusions and a bone marrow biopsy, 2-year-old Grant began his fight against Philadelphia Chromosome Positive Acute Lymphoblastic Leukaemia (ALL), a condition in which less than 50% of those inflicted survive.

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Raising Awareness Around Second Opinions

awareness_childhood_cancer_boxing_penguinSeptember is International Childhood Cancer Awareness Month therefore we at the  Little Fighters Cancer Trust have been and still are doing triple time to spread as much information as we can about Childhood Cancer Awareness and the  Early Warning Signs of Childhood Cancer.

Too many children in developing countries, including South Africa, are still dying from Childhood Cancer – most of them due to the fact that knowledge about Childhood Cancer is scarce therefore many children are either not correctly diagnosed or are diagnosed too late for effective treatment.

The more aware people are of Childhood Cancer and its Early Warning Signs, the more early diagnoses there will be, ergo the higher South Africa’s Childhood Cancer survival rates will be.

Today we are also raising awareness of another kind as regards Childhood Cancer, though, via a guest-post, and that is awareness around the importance of getting a second opinion.

We have edited this guest-post slightly in order for it to be more relevant to South African/African individuals….

The Best Defence against Childhood Cancer is Awareness and Early Diagnosis

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More and More Children are Surviving Cancer

cancer survivor wingsIn South Africa, there are 1 500 new cases of Childhood Cancer diagnosed every year. Owing to earlier methods of detection, improved medication and more effective treatment methods, many more children’s lives are saved than was the case even 30 years ago.

In 1969 NO children with leukemia survived.

55% of the Little Fighters treated at Tygerberg Hospital’s Paediatric Oncology Unit since 1983 were still alive in 1998, according to Professor Peter Hesseling, Head of the department Paediatrics and Child Health of the faculty of Health at the University of Stellenbosch.

One out of every 75 000 children develop cancer every year. In South Africa, 15 000 new cases of children with cancer are diagnosed every year.

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Early Trial Finds Ingenious Brain Tumour Therapy Safe and Effective

Brain Anatomy of the Child: Lateral ViewA new gene therapy treatment for high-grade gliomas — the most aggressive brain tumours — has been found to be safe and to improve patient survival.

The Phase I dose-escalation trial was conducted at Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine and multiple other sites and published in the journal, Science Translational Medicine.

Overall, 29% of our patients were still alive after two years,” said Noriyuki Kasahara, M.D., Ph.D., a gene therapy expert at Sylvester and professor of cell biology and pathology at the Miller School of Medicine, who originated the therapy in his lab. “If you take the higher dose cohorts, the number rises to 40%. Almost half of our patients are living more than two years with a disease that normally causes people to die after around seven months.

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Breakthrough in Cancer Cell Screening Advances Personalised Treatment of Childhood Leukaemia

Acute Lymphoblastic Leukaemia Awareness RibbonAcute Lymphoblastic Leukaemia is the most common form of childhood cancer, but thanks to research, up to nine in 10 children diagnosed with ALL will now achieve a long-term cure. Unfortunately, in those whose disease relapses, the prognosis is not that good and fewer than 6 in 10 children survive longer than 5 years.

Researchers at Newcastle University have recently completed the largest study of its kind, and thanks to their findings, doctors will now be able to analyse the genetic profile of cancer cells to personalise treatment and improve survival rates.

The Newcastle study, Integration of genetic and clinical risk factors improves prognostication in relapsed childhood B-cell precursor acute lymphoblastic leukaemia, published in the prestigious journal Blood, analysed leukaemia cells from 427 children treated for relapsed Acute Lymphoblastic Leukaemia between 2003 and 2013, using a variety of genetic tests including fluorescence in situ hybridisation (FISH), where glowing tags are bound to sequences of DNA within the cancer cells, allowing scientists to view specific genetic changes under a microscope.

Genetic faults within developing white blood cells kick-start and drive leukaemia growth. The types and combinations of genetic errors are known to influence whether a child is likely to respond well to initial treatment, which in turn affects whether they have a good or poor chance of survival.

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Socioeconomic Factors Influence Survival of Younger Patients With Multiple Myeloma

myeloma-SchemeWhile there have been many advances in the treatment of Multiple Myeloma (a cancer that forms in a type of white blood cell called a plasma cell. Plasma cells help you fight infections by making antibodies that recognise and attack germs. Multiple Myeloma causes cancer cells to accumulate in the bone marrow, where they crowd out healthy blood cells) that have led to improved survival, it seemed that this was only relevant to young white patients; patients of other ethnicities saw less of an increase in survival rates.

A new study, Impact of Marital Status, Insurance Status, Income, and Race/Ethnicity on the Survival of Younger Patients Diagnosed with Multiple Myeloma in the United States,  published early online in CANCER, a peer-reviewed journal of the American Cancer Society, has found that this has more to do with socioeconomic differences between whites and ethnic minorities, not race itself.

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