So Anyways, Childhood Cancer


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.

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Why I Don’t Believe in #MandelaDay


Right! So now that this controversial headline has got your attention… please read on as to why….

Today the World is celebrating the Madiba Centenary – the theme of this year’s Mandela Day Celebrations is meant to reflect on the legacy of Madiba by cementing a culture of volunteerism. The hashtag for this year is #actionagainstpoverty.

There are so many initiatives again this year, such as the “Initiative to feed millions for Mandela Day” being run by Pick ‘n Pay and FoodForward South Africa, the aim of which would be to collect 250 tonnes of food over three days to provide over a million meals…

This is all good and well, and well done to them, BUT…

I liked and respected Nelson Mandela, but I do not believe in “Mandela Day” or “16 Days of Activism to oppose Violence Against Women” or any of those “annual commemorative movements” or whatever one wishes to call them and this is why….

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How can I Help My Grieving Friend/Family Member?


lost love is still love

One of the things that we try to do during Bereaved Parents Awareness Month is to help the grieving parents make some sense of how they are feeling, to encourage them to give themselves permission to grieve according to their own schedule irrespective of what other may feel or think.

Another is to try to help friends and family understand what it is like to lose a child; what the grieving parents are going through and how best to act around them and help them through this tragedy that has overtaken their lives, which is what today’s post will cover.

When a child dies, the parents will be in shock, even if it is a death after a long-fought battle against an illness like cancer. The bottom of their world has just dropped out from under them, and they will be going through a range of emotions such as disbelief, denial, confusion, anger, hysteria, resentment, anxiety, panic, depression, and a lot more besides.

There is generally no shortage of help when a death first occurs, but unfortunately that soon seems to dry up, as though once the funeral has happened it is all over and done with and everything should just go back to normal, and this is just not so – especially with the death of a child! Read the rest of this entry

The Mourner’s Bill of Rights


Losing a child is the most painful experience that any parent can be asked to go through, especially when it is a young child that they have had to watch go through the devastating, frightening, physically and emotionally crippling battle against cancer.

Losing a child is like losing one’s heart and then being expected to carry on with life as though everything is still the same – and it isn’t.

People expect you to act and behave in a specific manner, and they have no right; they mumble inane well-meaning but awkward, insensitive phrases like “He’s in a better place,” “Everything happens for a reason,” or “You’re lucky to have other children,” and “Time will heal all,” or “You must get on with your life now.”

In our second article in this Bereaved Parents Awareness Month we would like to once again extend our heartfelt sympathies to all parents who have lost a child/children and remind you that NOBODY has the right to tell you how to grieve, how long to grieve, or anything else about YOUR grief!

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Losing a Child is Painful


crying is a releaseThe loss of a child is probably the most painful experience any parent can endure.

July is International Bereaved Parents Awareness Month and during this time the Little Fighters Cancer Trust would like to remember and reach out to all those parents who have lost their children to Cancer.

The loss of a child is the most inconsolable of losses; It violates the natural order of things. Here at LFCT we unfortunately see too many parents face this devastating loss, and it breaks our hearts every time we do, but even we cannot really say that we know what they are feeling.

International Bereaved Parents Awareness Month is a time to reach out to bereaved parents and their families by giving them someone who will listen to them without trying to give them advice as to how to feel or act; someone to just “be there” for them, to give them a shoulder to cry on or a hug if they need it, or to just let them talk…

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Cancer Survivor Guilt is a Real Thing


Why me?

Cancer survivors have an interesting relationship with these two words. As bookends to the cancer experience, their implications and impact are crucial to understanding the psychology of a life-threatening illness.

Even the most stoic among us must have at some point allowed the question “Why me?” to cross his or her lips or mind. Not only is it normal to question the arrival of such a traumatic event, it is the reflexive response of a mind honed for survival.

No matter what kind of cancer you’re diagnosed with, coping with its emotional toll can continue long after active treatments are over. The aftermath can lead to a tangle of complex feelings. For those who enter the world of cancer survivorship, guilt is often one of those emotions.

I personally also battle with Survivor’s Guilt, as I have recently passed the 21 years in remission mark, and even though I live with the after/late effects every day (which only those closest to me know about), I still count myself very lucky because I Survived, and when one of our Little Fighters is suffering or gets their angel wings it hits me extra-hard…

The only way that I can “justify” my survival or make myself feel a bit better is by telling myself that THIS is why I survived Stage IV Urethral Carcinoma – to serve our Little Fighters and their Families…

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NHI Bill Will NOT Fix SA Health Dept Problems!!


It seems that the underlying assumption of the National Health Insurance (NHI) Bill, which seeks to force the public and private health systems into a hasty marriage, is that throwing money at the current Health Department Crisis will resolve all problems.

In actual fact, nothing could be further from the truth, and in retrospect, the NHI could cause even MORE problems as Key Medical Personnel such as doctors, anaesthesiologists, etc. are vulnerable to leave South Africa should the Bill be passed.

One problem is that the NHI Bill centralises too much power in the hands of the health minister and does not clarify how the scheme will be governed. The current problems that the Health Sector is facing is due to a lack of governance which has led to poor management of every aspect of public health – finances, human resources, procurement and maintenance – this one of the biggest weaknesses of the sector.

More money in the system will not remedy this. It will simply provide incompetent and corrupt managers with bigger budgets to burn.

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New Hope for Fatal Childhood Brain Cancer (DIPG)?


Brain tumours are hard to treat. But even this is a harrowing understatement for some forms of the disease.

Diffuse intrinsic pontine glioma (DIPG) is one such example. These rare brain tumours almost exclusively affect children, and they’re invariably fatal.

Almost all children with DIPG sadly die within a couple of years of diagnosis,” says Professor Chris Jones from the Institute of Cancer Research, London, a Cancer Research UK-funded expert on the disease.

There aren’t any effective treatments.”

One of the main reasons that the outlook for DIPG is so poor is down to where it grows in the brain. These tumours start in the brainstem, which lies at the base of the brain and hooks up the spinal cord with deeper brain regions. This crucial piece of machinery controls many of the body’s vital processes, such as breathing and our heart beat.

That means surgery – a cornerstone treatment for many cancers – is out of the question. Drugs are also notoriously ineffective for brain tumours, because most are shut out by the protective blood brain barrier.

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Lola Muñoz, the Girl Who Gave Her Final Days to Science


Diffuse intrinsic pontine gliomas (DIPG) are highly aggressive and difficult to treat brain tumors found at the base of the brain. They are glial tumors, meaning they arise from the brain’s glial tissue—tissue made up of cells that help support and protect the brain’s neurons.

These tumors are found in an area of the brainstem (the lowest, stem-like part of the brain) called the pons, which controls many of the body’s most vital functions such as breathing, blood pressure, and heart rate. Diffuse intrinsic pontine gliomas account for 10% of all childhood central nervous system tumors.

While DIPGs are usually diagnosed when children are between the ages of 5 and 9, they can occur at any age in childhood. These tumors occur in boys and girls equally and do not generally appear in adults.

Medical advances in the past 40 years have greatly improved the survival rates for children diagnosed with most types of cancer, but these medical advances have done nothing for children with DIPG.

Brain tumors remain the most common cause of cancer-related death in children, and DIPG is the leading cause of death from paediatric brain tumours. A child diagnosed with DIPG today faces the same prognosis as a child diagnosed 40 years ago.

There is still no effective treatment and no chance of survival. Only 10% of children with DIPG survive for 2 years following their diagnosis, and less than 1% survive for 5 years. The median survival time is 9 months from diagnosis.

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July is International Sarcoma Awareness Month!


The month of July is designated International Sarcoma Awareness Month.

Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues.

They can affect almost any part of the body, on the inside or the outside.

There are three main types of sarcoma: soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST). There are around 100 different sub-types of sarcoma

Sarcomas make up 15% of all childhood cancers (0-14 years) and 11% of all cancer diagnoses in teenagers and young people (15-24 years).

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