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Terminal Synovial Sarcoma Teenager Marries Childhood Sweetheart


What a tale of an all-encompassing love that is somewhat Romeo & Juliet-esque in that it will also be so short-lived – a tale of True Love shared with you on this Valentine’s Day.

For the past year and a half, 19-year-old Dustin Snyder has been battling a rare form of cancer called synovial sarcoma — undergoing treatments to remove the tumors, only to watch them return and ravage his body.

One day before Dustin’s 18th birthday, he was diagnosed with a rare form of cancer. Doctors discovered the cancer in his left lung, which is rare.

Synovial sarcoma is a slow-growing cancer that typically attacks the soft tissues near large joints and, in some cases, is initially misdiagnosed as arthritis or bursitis, according to the Mayo Clinic. Sometimes, however, it can develop in the kidneys and lungs.

The goal is to remove the cancer and a margin of healthy tissue around it,” according to the clinic. “This can sometimes mean the removal of an entire muscle or muscle group, or even amputation.”

Snyder’s mother said he underwent chemotherapy and radiation “hoping to save the lung.” But several months later, doctors had to remove it.

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More Hope for Children with Leukaemia


The average survival rate for Acute Lymphoblastic Leukaemia (ALL), the most common type of children’s cancer, has gone from under 20% to 85%  – unfortunately this is not the case in South Africa though 😥

Cutting-edge treatments are constantly being developed for even the toughest cases, but once again, these treatments are not available in South Africa!

Children’s cancers are unique, but the lessons learned from the extraordinary success of consecutive clinical trials have paved the way for advances in cancer treatment in general. New scientific breakthroughs are happening extremely quickly in medicine these days, far quicker in actual fact than the ability to develop and fund new treatments. Unfortunately this also means wrestling with uncomfortable questions of fairness in deciding priorities — who will be treated first?

One of the most important developments in Childhood Cancer is the ability to tailor treatment — to figure out who needs powerful doses of chemotherapy and who could do with less. Lighter treatment causes less long-term damage to the rest of the developing body — very important for children who have their whole lives in front of them. In some subgroups of patients with ALL, we’re getting better-than-90% survival rates using minimal therapy. This will allow children to recover more fully, without long-term side-effects and with a normal life expectancy.

Right now, there are two groups of kids with ALL at high risk of dying: those with treatment-resistant disease, and those whose cancer recurs either more than once or after receiving a stem-cell transplant.

 

 

Even for these toughest cases though, there is now a promising new treatment: a type of immunotherapy calledCAR-T that harnesses the body’s own immune system to destroy cancer cells. Doctors remove immune cells, called T cells, from the child’s blood and reprogram them to find and destroy the leukaemia cells by changing the DNA that controls the immune response. Those cells are put back into the child’s bloodstream, where they multiply then track down and kill the cancer cells. (The first Child with Cancer to receive this experimental treatment, a girl who had been destined to die, is alive and well 12 years later.)

As doctors and scientists home in on the toughest cases, treatments will become more “customised” and more expensive. It currently costs in excess of $2 million to save the life of a child sent to the U.S. for the new CAR-T therapy. If this treatment was available in other countries, it would cost far less, and would be far less disruptive to both the Child with Cancer as well as the rest of the family who generally have to move to the US for at least the duration of the treatment.

It is hoped that the role of CAR-T treatment can be expanded to other types of cancer next — for example, brain tumours, which are the second-most-common group of childhood cancers.

The problem is that many medical aids will not cover such exorbitant costs. Also, there’s never going to be enough money to fully fund every emerging treatment and to try “everything” in every case, so pursuing one type of costly treatment means less money for another.

Many medical ethicists, governments, health-care professionals and ultimately everyone in society is grappling with the question of “If it costs $2 million for that treatment for one child but there are far fewer children with leukaemia than there are adults with breast and prostate cancer, and that amount would treat far more adults, What is a fair expense?

Ultimately, every advance we make in treating any type of cancer could help us to develop treatments for others, and hopefully we will see survival rates continue to rise, allowing the bedside role more and more to encompass hope as well as compassion.

 

 

Donate New Footwear & Winter Clothing for Kids with Cancer


We need YOUR help!!

This year the Little Fighters Cancer Trust is combining our Barefoot for a Day and Snug as a Bug Projects into one big project and we need YOU to donate NEW winter footwear (shoes, takkies, boots, slippers etc) and NEW winter clothing for our Little Fighters.

Your donations will be sorted and packed at our HQ and sent out to our Representatives in the various provinces, who then distribute the shoes and clothing to Children with Cancer in the Pediatric Oncology Hospital Wards and Oncology Clinics around the country.

Our Little Fighters have greatly impaired immune systems due to the cancer as well as the ravages of the Chemotherapy and Radiation Treatments, so we can only accept NEW shoes and NEW clothing for these projects. (We do, however, accept donations of second-hand clothing and other goodies throughout the year for sale in our Pre-Loved Goods Charity Shoppe.)

All donations need to be in Paarl by the first week in March to ensure that they can be sorted and packed and sent to the various regions for delivery mid- to -end March.

If necessary we can organise for our wonderful transport company, Kargo, to collect sizable donations – with no charge to you at all.

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Barefoot & Snug Challenge to ALL South African Schools


The Little Fighters Cancer Trust is combining our Barefoot for a Day and Snug as a Bug Projects into one big project this year, and we put out the call for donations last week. (Read further down about the response we got and the reason for this Challenge!)

In both of the projects we ask for donations from the public, which are sorted and packed at our HQ and sent out to our Representative in the various provinces, who then distribute the shoes and clothing to Children with Cancer in the Pediatric Oncology Hospital Wards and Oncology Clinics around the country.

Our Little Fighters have greatly impaired immune systems due to the cancer as well as the ravages of the Chemotherapy and Radiation Treatments, so we can only accept NEW shoes and NEW clothing for these projects. (We do, however, accept donations of second-hand clothing and other goodies throughout the year for sale in our Pre-Loved Goods Charity Shoppe.)

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Call To Promote Global Childhood Cancer Awareness


Sheikha Jawaher Bint Mohammed Al Qasimi, Founder and Royal Patron of the Friends of Cancer Patients, FoCP, and wife of His Highness the Ruler of Sharjah, has called for combined global efforts to promote worldwide awareness of paediatric cancer and provide access to treatment for children suffering from cancer, particularly in low and middle-income countries.

The call was made on the sidelines of the launch of the Access to Essential Medicines for Children with Cancer, Sharjah PORTAGE, Forum, held earlier this month, under the theme ‘Challenges and Pursuit of Innovative Solutions’, with the participation of 60 senior officials of international health organisations, medical and health experts, and heads of private and public sector entities from around the world.

By playing host to the childhood cancer forum in line with the vision and directives of H.H. Dr. Sheikh Sultan bin Mohammed Al Qasimi, Supreme Council Member and Ruler of Sharjah, the emirate is taking a new step in its commitment to combat cancer. Sharjah is pushing even further joint initiatives and collaboration with various international agencies as part of a worldwide campaign to promote awareness about the importance of early detection of cancer and combining efforts to save the lives of thousands of children with cancer around in the world, many of whom have died due to lack of resources,” said Sheikha Jawaher, who is also the International Ambassador for the World Cancer Declaration of the Union for International Cancer Control, UICC.

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Don’t Cry at my Grave – Prevent My Landing up There!!


I have just finished reading a few articles on a young cancer patient who got his angel wings on New Year’s Day, and I am ANGRY!!!

I am ANGRY that young Junaid Arendse from Mitchells Plain, who was diagnosed with Stage 4 Neuroblastoma in 2014 passed away at the tender young age of 8, even though he outlived his doctor’s predictions – in  June 2015 the doctors gave him 3 months to live.

I am ANGRY that one of our Little Fighters passed away on 12 January before we even had time to register him and offer any help.

I am ANGRY that two more families have to deal with the loss of a young child to a disease that is devastating in so many ways.

I am ANGRY that in other countries the childhood cancer survival rate is between 65% and 98% yet in South Africa the overall survival was calculated to be a mere 52.1%.

I am ANGRY that here at the Little Fighters Cancer Trust, we are not strangers to death from Childhood Cancer… we see it too often every year!

“Child loss is not an event;
It is an indescribable journey of survival”
~ Author Unknown ~

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Snug as a Bug & Barefoot for a Day Winter Clothing & Shoe Drive


This year the Little Fighters Cancer Trust is doing things a bit differently when it comes to our regular projects, and the first of these changes is that we will be combining our Barefoot for a Day and Snug as a Bug Projects into one big project.

In both of the projects we ask for donations from the public, which are sorted and packed at our HQ and sent out to our Representative in the various provinces, who then distribute the shoes and clothing to Children with Cancer in the Pediatric Oncology Hospital Wards and Oncology Clinics around the country.

Our Little Fighters have greatly impaired immune systems due to the cancer as well as the ravages of the Chemotherapy and Radiation Treatments, so we can only accept NEW shoes and NEW clothing for these projects. (We do, however, accept donations of second-hand clothing and other goodies throughout the year for sale in our Pre-Loved Goods Charity Shoppe.)

We are starting the Drive early this year to ensure that we have enough time to collect sufficient shoes and warm winter clothing for all our Children with Cancer.

All donations need to be in Paarl by the first week in March to ensure that they can be sorted and packed and sent to the various regions for delivery mid- to -end March.

If necessary we can organise for our wonderful transport company, Kargo, to collect from you – with no charge to you at all.

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Pet Dogs May Speed Human Brain Cancer Trials


Dogs and humans share a particularly deadly form of brain cancer: glioblastoma, the most common – and a very aggressive – type of malignant brain tumour among adults.

A new five-year canine cancer research project, awarded to the University of Minnesota, may improve survival rates in dogs and give researchers more insight into glioblastoma to apply to human trials.

The $2.7 million grant funded as part of the 21st Century Cures Act by the National Cancer Institute, part of the National Institutes of Health, is led by Dr. Liz Pluhar, professor of veterinary surgery at the University of Minnesota College of Veterinary Medicine.

Glioblastomas are a highly invasive tumour that carries a grim prognosis in humans, with a median survival of 14 months despite surgery, radiation, and chemotherapy. Pet dogs diagnosed with these tumours have few treatment options and are often euthanised shortly after diagnosis. Pluhar’s project hopes to improve those outcomes by combining complementary therapies.

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✨Thankful Thursday✨


The Little Fighters Cancer Trust functions with a tiny full-time team of 4 and works Nationally with the help of various Volunteers, Ambassadors, Representatives, and some wonderful Corporates too, without whom we could literally not function and do everything that we do.

These are the people who work in the background and about whom most of you do not know, or if you do even know that they exist, have absolutely no idea of exactly how integral they are to the continued existence and functioning of LFCT ~ These are the individuals that are the backbone of an organisation like ours…

We think that it is time that we change this fact, so we will be running a series of articles over the next little while that highlights these integral members of Team LFCT.

“A kind gesture can reach a wound
That only compassion can heal.
~ Steve Maraboli ~

 
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✨Foodie Friday✨ Nutritious Recipes & Snacks


Ensuring that your Child with Cancer gets sufficient nutrition, which is necessary to improve their immune system so that they can fight the cancer, is not always easy, especially when you are a single parent, are dealing with the side-effects of chemotherapy or radiation treatment, or have other children to look after as well.

The following quick meal and snack suggestions can really be of big help if your Child with Cancer is missing meals while having treatment or waiting for appointments.

Some of these meals/snacks may not seem like the most healthy of choices, but if your Child with Cancer has a poor appetite, it is important to focus on high-protein and high-energy foods and fluids.

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