Children with Cancer | BraveheartsForKids

So Anyways, Childhood Cancer

by charmnicole | Aug 11, 2018 | Uncategorized

Just exactly how do we get the average person like you and the politicians and the corporations and the pharmaceutical companies who control the research funding to take creative ownership of the childhood cancer epidemic in this country? Because make no mistake about it… it is an epidemic!

Tom Mitchell is the founder and director of Stillbrave Childhood Cancer Foundation. Affectionately known as “Tattoo Tom” by the children and families whom he serves. He is also a nationally recognized activist and advocate for children with cancer and their families.

Following the death of his daughter Shayla in 2009 from Hodgkin’s Lymphoma Tom dedicated his entire life to providing non-medical support to children with cancer and their families. He’s also committed to raising awareness of the need for more research funding and safer, less toxic treatments for children with cancer.

Dubbing himself and those who work for Stillbrave as “Renegades” Tattoo Tom is always anxious to share what he’s learned, grown to understand, but refused to accept. He is very outspoken. His obvious passion, continued activism, and his innate need to be a voice for those who do not have one has led him to being at the forefront of a grassroots movement.

In September of 2015 Tom competed in and finished the Tahoe 200 mile ultramarathon. He is an extreme runner and has been featured in an award-winning documentary and news stories of his exploits have won several Emmy awards. To date he has raised over $350,000 for Stillbrave just through his ultrarunning endeavors

On any given day you are likely to find Tom on a personal visit either at the chemotherapy clinic or bedside within the confines of a hospital room where his ability to console the inconsolable is an invaluable asset. Humor, compassion and first-hand knowledge of this kind are almost impossible to quantify and cannot be delivered in a gift card, or a care package.

The following day you may find Tattoo Tom at the White House, speaking at a rally or on the streets of Washington D.C. carrying a picket sign, loudly and unapologetically vocal about what matters most, the eradication of childhood cancer.

Source: So Anyways, Childhood Cancer

What does The RACE for Children Act Mean?

by charmnicole | Dec 12, 2017 | Honoring Brave Children, Latest Pediatric Cancer News, Tips to Help, Uncategorized

Most paediatric cancer patients are subjected to treatments that are not designed for a child’s developing body.

This is because there has been too little research into Childhood Cancer and too few new medications to treat childhood cancer.

According to the Coalition against Childhood Cancer, a mere 4 % of America’s National Cancer Institute’s budget is dedicated to paediatric cancer research – it is even less in some other countries.

Parents and advocates say that is not enough when you consider how much life these children stand to lose.

Treatment options for Children with Cancer have been stagnant for decades, with only 3 new drugs developed specifically to treat childhood cancers since 1980, compared to the 190 new treatments that have been approved for adults in the last 20 years alone.

The Research to Accelerate Cures and Equity for Children Act that was signed into U.S. law during August this year aims to change that.

The RACE for Children Act means that new cancer drugs will be developed not only for adults – but for children too.

With the RACE for Children Act as law:

Children with cancer will have many more novel drugs and clinical trials open to them.
Paediatric oncologists will have new information about which cancer drugs might help their paediatric oncology patients, what the dosage of the drugs should be, and whether the drugs are safe.
Companies developing cancer drugs will, as standard practice, plan to develop their drugs for children with cancer.

There are around 900 drugs in the pipeline for adult cancers, but few are ever studied for children.

Taylor Hurst was diagnosed at 5 years old with T-cell leukaemia (T-cell acute lymphoblastic leukaemia (T-ALL) is a specific type of leukaemia. It is a variant of Acute Lymphoblastic Leukaemia (ALL), with features similar to some types of lymphoma) – on January 16, 2016, Taylor became one of the nearly 15,000 people under the age of 20 who contract cancer every year in the United States, according to the Centers for Disease Control.

For Michelle Hurst, Taylor’s mother, there’s no question that the lack of paediatric cancer treatments was a calculated decision by pharmaceutical companies, which she thinks stand to lose money by creating more effective oncology treatments for kids.

“With the advancements in technology these days, there is so much that can be done, but everything is just money,” Hurst said. “The pharmaceutical companies think that children are not profitable. Kids would get significantly lower dosage amounts than adults.”

As it stands now, Taylor has been on the same treatment regimen that her grandfather was when he was diagnosed with cancer in his 50s. And Taylor’s case is not the exception—many paediatric cancer patients are subjected to treatments that are not designed for a child’s developing body.

According to Dr. Jolly, these harsh treatments leave paediatric cancer survivors with a number of lasting side effects, “such as decreased fertility, a weakened heart, increased risk of obesity and more frequent secondary cancers.”

This was the case with Taylor Steele, 17, who died in 2011, two days before she would have started her senior year as student body president at Liberty Ranch High School in Galt. Diagnosed at 3 years old with nephroblastoma, a type of kidney cancer known as Wilms Tumour, she survived treatment, only to be diagnosed with ovarian cancer at the age of 12.

The RACE for Children Act is an update to the 2003 Paediatric Research Equality Act, or PREA, a federal measure that required pharmaceutical companies to ensure that medications designed for adults are safe and effective in treating children. Because children are often afflicted by different types of cancers than adults, PREA did not cover many treatments, putting that R&D burden on non-profit organisations.

Recent research however, suggests that paediatric cancers show some of the same molecular targets as adult cancers. Therefore, it’s likely that the pharmaceuticals being researched for adults will be able to target paediatric cancers after more focused research, according to the office of Sen. Michael Bennet, who sponsored the new law.

The RACE law intends to close the loophole in research regulations and ensure that these new findings are being put to use.

“Childhood cancer patients face some unique challenges in addition to those that adult cancer patients have,” said Dr. Kent Jolly, a paediatric haematologist-oncologist at the Kaiser Permanente Roseville Medical Center.

Scott Lenfestey, aka Honored Kid Scott, was diagnosed with Acute Lymphoblastic Leukaemia in November 2011 at age 3, and underwent 3 ½ years of Chemotherapy Treatment during which he took more than 1,500 pills. His father, a doctor who knows that the hardest thing to do is to walk into a room and say there is nothing more we can do for your child, saw drastic and terrifying changes in his son’s body such as hairloss and mouth ulcers, weight loss and more.

Fortunately Scott had one of the more curable types of cancer; he survived the treatment, has been busy rebuilding his strength post-treatment, and recently completed two kids’ triathlons! Scott is about to start 3^rd grade and has also become an active childhood cancer advocate, speaking at various events on behalf of kids with cancer.

“Some specific cancers occur exclusively in children, so only specific paediatric research will improve the treatment of those diseases. … Many new drugs also lack the data on effectiveness, safety and proper dosage for use in children, because the paediatric testing process simply hasn’t been done.”

The hope that the RACE Act provides to so many childhood cancer families is priceless. This legislation will open the door for cutting-edge treatments and precision medicines that could make all the difference for children battling this devastating disease.

Source: What does The RACE for Children Act Mean?

U.S. Senate Passes Bill to Improve Cancer Drugs for Children

by charmnicole | Aug 30, 2017 | Latest Pediatric Cancer News, Uncategorized

Up until now, drug companies have been free to decide whether to pursue treatments for paediatric cancers as part of their work on adult cancers or not, and this has led to a minimal amount of new drugs specifically for paediatric cancers being developed.

An estimated 2,000 children die of cancer annually, and the overall incidence of childhood cancer has been slowly increasing since 1975 – there has been a 13% rise in Childhood Cancer in the past 20 years alone.

Despite significant advances against certain pediatric cancers, including Acute Lymphoblastic Leukemia, there are still some types of cancer for which there are few or no effective treatments.

The truth is that new drug development in pediatric cancer is extremely slow, often lagging way behind adult treatments, and few compounds are designed specifically for children.

The sad truth is that Childhood cancers make up less than 1% of all cancers diagnosed each year, and that is is not much of a market for drug makers, who rack up an estimated $1.4 billion in out-of-pocket costs while bringing a novel drug to market.

They won’t have much choice going forward!!

The Senate on has just overwhelmingly passed legislation requiring the pharmaceutical industry to expend more resources on treatment for childhood cancers. The bill, part of a larger measure reauthorising user fees imposed by the Food and Drug Administration, heads to President Trump for his expected signature.

Existing law directs companies to study the safety and efficacy of adult drugs on children unless the FDA gives them a waiver. Medicine developed to treat heart disease or diabetes for adults, for example, must also be tested for its use on children.

But when it comes to cancer, advocates say the FDA has too much latitude to exempt the industry from studying and developing help for kids. Federal regulators often have not required companies that invest heavily in the four major cancers — breast, prostate, lung and colon — to research how the treatments they develop for those adult-oriented diseases might assist in addressing childhood cancers.

Over the past 20 years, the FDA has approved about 190 new cancer treatments for adults but only three for children, said Sen. Michael Bennet, a Colorado Democrat who co-sponsored the provision with Florida Republican Sen. Marco Rubio.

“That meant our kids continue to receive older treatment, some from the 1960s that often had harmful side effects and consequences that can last a lifetime,” Bennet said on the Senate floor.

“At the same time, breakthrough treatments have become available for adults with better results and few harmful effects. While these treatments have great promise for kids, we’re not doing enough to explore that potential.”

Advocates cheered the bill’s passage.

“Today’s Senate vote is a giant leap forward in the fight against childhood cancer,” said Jorge Luis Lopez, a Miami attorney who sits on the board of the American Cancer Society. “We urge Donald Trump to sign this legislation into law and unleash American innovation and creativity for the health and well-being of all our children.”

On Wednesday, Rubio was on the Senate floor sharing a story about Bella Rodriguez-Torres, the 10-year-old girl from Miami whose 2013 death helped get him involved.

“She was a classmate of my nephew in grade school,” Rubio said. “And she lost her battle with cancer. Her father has been a tireless advocate on this cause. He moved heaven and earth to try to reach a point where they could find a cure for her. That did not come in time and he’s now made it the mission of his life to honor her life by continuing this work. So we’ve all been impacted in some way.”

Source: U.S. Senate Passes Bill to Improve Cancer Drugs for Children

Why is Childhood Cancer not a Priority in South Africa?

by charmnicole | Aug 30, 2017 | Blog

While Childhood Cancer is “relatively rare” with an incident rate of around 1 in 600, or 150 patients per million in South Africa, too many children with Cancer are dying needlessly because cancer, including Childhood Cancer, is not a priority in South Africa.

The cure rate for Childhood Cancer in high income countries is around 80% but childhood cancer survival rates in low-income countries may be as low as 10%.

This is extremely disturbing when one factors in that out of the 250 000 children diagnosed worldwide with cancer every year, 80% live in low and middle-income countries and 90% of childhood cancer deaths occur in low and middle-income countries.

This is partially due to a lack of awareness of Childhood Cancer which leads to late diagnosis, and partially due to many Childhood Cancer patients falling through the cracks when it comes to support services, which are sorely lacking from government.

Huge Inequality to Surviving Childhood Cancer in SA

According to Professor Janet Poole, who heads the Paediatric Oncology Unit at Charlotte Maxeke Johannesburg Hospital, apart from all the advances in supportive care, diagnostic tests and surgery, the best treatment for a child with cancer is to be looked after at a dedicated Paediatric Oncology Unit manned by a team of people

“I believe that every child should be afforded the best treatment, no matter who they are or where they come from,” she said.

Poole added that working at a state hospital came with challenges:

“Because of the burden of infectious diseases and the HIV epidemic, there is not really a priority for non-communicable diseases such as childhood cancer. There is therefore a huge inequality when it comes to surviving childhood cancer.”

Importance of the Right Support System

A good support network is as important for survival as the treatment itself. While emotional support is key, it is also crucial for parents of young cancer survivors to encourage a healthy and active lifestyle as soon as treatment is over and the child is starting to recover.

Surviving cancer is a great thing, but it’s only half the battle – the battle is never over for many young cancer survivors who often continue to face many challenges after the completion of treatment.

It is often difficult for children and teenagers to resume a normal life in areas like school, work and relationships after cancer treatment.

Researchers studied 215 cancer survivors between 14 and 39 years of age who completed questionnaires about their social functioning at 4, 12 and 24 months after cancer diagnosis. Around 33% reported low social functioning throughout the study period.

According to the researchers, the difficulties could stem from the transition from treatment to “off-treatment survivorship – a time fraught with challenges“. Survivors with low scores on social functioning also had high levels of distress.

It is important that Childhood Cancer survivors have a continued source of support outside of their family – a support programme or support group is very helpful but should include similar-age survivors, as youngsters do not find “being in a support group with ‘people my grandma’s age’“to be all that helpful.

NPOs Picking up the Slack

In South Africa especially, it is left up to Non-Profit Organisations such as the Little Fighters Cancer Trust to pick up the slack and help those who fall through the cracks – generally middle to low-income families, to cope with the emotional, financial, and other stressors while their child is fighting this dread-disease.

It is also these organisations that are creating Childhood Cancer Awareness, not the government!

What is absolutely SHOCKING is the fact that many of these organisations who are doing such great work receive NO GOVERNMENT FUNDING, basically due to politics!

The Little Fighters Cancer Trust is one of those organisations that does not receive any government funding yet helps in excess of 2000 families across the nation every year. The reason for that is purely political… and possibly also due to the high amount of corruption within government circles.

It is for this reason that NPOs such as the Little Fighters Cancer Trust need private and corporate funding in order to continue the good work that they do – Helping Children with Cancer & their Families cope!!

The Little Fighters Cancer Trust is a registered NPO with PBO status. This affords private and corporate donors the taxation benefits as set out in Section 18A.

Source: Why is Childhood Cancer not a Priority in South Africa?

The Importance of Nutrition for Children with Cancer

by admin | Nov 29, 2016 | Blog, Latest Pediatric Cancer News

Nutrition is an important part of the health of all children, but it is especially important for Children with Cancer. It is therefore of vital importance that you learn about your child’s nutritional needs and how cancer and its treatment may affect them.

Eating the right kinds of foods before, during, and after treatment can help a child feel better and stay stronger. It is also important so that the Child with Cancer can cope with treatment side effects that might affect how well they can eat.

Children with Cancer need protein, carbohydrates, fat, water, vitamins, and minerals. A dietitian can help you understand your child’s specific needs and develop an eating plan.

Proteins

The human body uses protein to grow; repair tissues; and to maintain the skin, blood cells, immune system, and the lining of the digestive tract.

Children with Cancer who do not get sufficient protein might break down their muscle for the fuel their bodies need, which will result in them taking longer to recover from any illness; this can also lower their resistance to infection. After a child has surgery, chemotherapy, or radiation therapy treatments,he or she may require additional protein to heal tissues and help prevent infection.

Protein is also key to a child’s growth and development. During illness, a child’s need for protein goes up.

Good sources of protein include poultry, fish, eggs, lean red meat, dairy products, nuts and nut butters, dried beans, peas and lentils, and soya.

Carbohydrates

Carbohydrates are the body’s major source of energy – they give the body the fuel (calories) it needs for physical activity and proper organ function.

The amount of calories a child needs depends on their age, size, and level of physical activity. Healthy infants, children, and adolescents need more calories per kilogram than adults to support growth and development.

Children with Cancer may require even more calories for tissue healing and energy. A Child with Cancer may need anywhere from 20% to 90% more calories than a healthy child.

The best sources of carbohydrates are fruits, vegetables, and whole grains, and they provide the body’s cells with the fibre, vitamins and minerals, and phytonutrients required.

Whole grains or foods made from whole grains contain all the essential components and naturally occurring nutrients of the entire grain seed.

Whole grains are found in cereals, breads, flours, and crackers. Some whole grains can be used as side dishes or part of an entreé. When choosing a whole-grain product, look for the words “whole grain,” “stone ground,” “whole ground,” “whole-wheat flour,” “whole-oat flour,” or “whole-rye flour.”

Fibre is the part of plant foods that, most of the time, the body cannot digest. There are 2 types of fibre:

Insoluble fibre takes up space in the intestine, and speeds up the passage of food waste out of the body.

Soluble fibre binds with water in the stool to help keep the stool soft while it slows down digestion.

Other sources of carbohydrates include bread, potatoes, rice, spaghetti, pasta, cereals, dried beans, corn, peas, and beans. These carbohydrate foods also contain B vitamins and fibre. Sweets (desserts, sweets and fizzy drinks) give your child carbohydrates, but very few other nutrients.

Fats

Fats play an important role in nutrition. Fats and oils consist of fatty acids and serve as a rich source of energy (calories) for the body, which breaks down fats and uses them to store energy, insulate body tissues, and transport certain vitamins through the blood.

Unsaturated fats (monounsaturated and polyunsaturated) should be chosen more often than saturated fats or trans fats:

Monounsaturated fats are found mainly in vegetable oils such as olive, canola, and peanut oils. They are liquid at room temperature.

Polyunsaturated fats are found mainly in vegetable oils such as safflower, sunflower, corn, and flaxseed oils. They are also the main fats found in seafood. They are liquid or soft at room temperature.

Saturated fats (or saturated fatty acids) are mainly found in animal sources, such as meat and poultry, whole or reduced-fat milk, cheese, and butter. Some vegetable oils like coconut oil, palm kernel oil, and palm oil are saturated. Saturated fats are usually solid at room temperature.

Trans-fatty acids are formed when vegetable oils are processed into margarine or shortening. Sources of trans fats include snack foods and baked goods made with partially hydrogenated vegetable oil or vegetable shortening. Trans fats also are found naturally in some animal products, such as dairy products.

Certain fatty acids, such as linoleic acid and alpha-linolenic acid, are called essential fatty acids. They are needed to build cells and make hormones, but because the body cannot make them, we must get them from foods. Soybean, canola, and walnut oils are good sources of essential fatty acids.

Water

The human body is made up of between 70% – 85% water (the percentage gets less as one gets older), and there is water in every single cell in the human body.

If your child does not take in enough fluids or loses fluids from vomiting or diarrhoea without replacing them, he or she may become dehydrated. If this happens, the fluids and minerals that help keep the body working can become dangerously out of balance.

Children can get some of the required water from foods, especially fruits and vegetables, but they need liquids to be sure that all the body cells get the fluid they need. The amount of fluid a child needs depends on his or her size and how much liquid he/she is losing. If he or she is vomiting or has diarrhoea, they need to drink more fluids, especially water. All liquids (soups, milk, even ice cream and gelatine) do count toward your child’s fluid goals, but the majority should be made up of water.

Indications of dehydration include a dry mouth, headaches, fatigue, dark coloured urine, listlessness, and dizziness. An easy way to check if your child is dehydrated is to lightly pinch up the skin over the breast bone; if the skin does not return to normal and stays raised, your child may be dehydrated.

Vitamins & Minerals

The body needs small amounts of vitamins and minerals for normal growth and development, and to help it function properly. Vitamins and minerals also help the body use the energy (calories) it gets from food.

Children who eat a balanced diet usually get plenty of vitamins and minerals. Studies have shown, however, that even healthy children often do not get sufficient calcium and vitamin D, which are vital for bone growth. Some of the drugs used to treat cancer can lower calcium and vitamin D levels, so your child may need to take additional amounts.

It may be difficult for a Child getting Cancer Treatment to eat a balanced diet. Common treatment side effects, like nausea, vomiting, and mouth sores (mucositis) can make it hard to eat.

The doctor may recommend a daily multivitamin while your child is being treated, but multivitamins do not replace eating enough calories and protein. Never give your child any form of multivitamin, minerals, or supplement without speaking to their doctor first, as some of them might interfere with their cancer treatment.

We will be continuing to post more about Nutrition in Childhood Cancer as well as some great recipes to help ensure that your child gets the nutrition they require as we go, some come back regularly to view the most updated information.

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