Neuroblastoma is a childhood cancer that affects around 100 children the UK annually.
Neuroblastoma is also one of the most common childhood cancers in South Africa, and it can be very aggressive and hard to treat.
In early 2017, Luke Bell from Darlington began falling asleep in his school lessons, prompting his worried parents to rush him to the doctor.
Mark and Becky Bell thought their son may have had anaemia but it never crossed their minds that he would be diagnosed with high risk neuroblastoma – a rare form of cancer – just days later.
The shock diagnosis which left the family devastated marked the beginning of a year of extended hospital stays and gruelling treatment, including chemotherapy, radiotherapy and immunotherapy.
At the end of April, Luke was in the final stages of treatment and enduring what was believed to be his last round of immunotherapy when the Bells were given the devastating news that their little boy had relapsed, with scans showing a progression of his illness.
Hi Folks – our Little Fighter Kenzo and his family really need your help!
As those of you who follow our Facebook Page know, Kenzo has been in and out of hospital again over the past few months due to a relapse, and he was recently rushed back to hospital after a particularly bad reaction to the chemotherapy he was receiving.
Due to his allergic reaction to the chemo he was receiving, an alternate chemo needed to be sourced, and yesterday his mother contacted me in tears – the replacement chemo is going to cost R61 605-50 for FIVE vials, of which Discovery Health will only pay 50%!!
PLEASE do whatever you can to help his parents defray these costs (see link further down), which are only a portion of what Kenzo’s treatment is costing them – NO ONCO PARENT should go through this over and above dealing with their child being deathly ill with the bastard cancer!!
Gracie Rae Philbin is a name that is well-known not only to those of us at the Little Fighters Cancer Trust, to Paedspal, to her family, to her fellow schoolmates – it is a name that is known across the Globe, and it is a name that will always inspire those of us who knew or just knew of the wonderful young lady to whom that name belonged…
Gracie was a beautiful young girl of around three-and-a-half years of age with the most piercing blue eyes, long blonde hair and mischievous smile when she suddenly became ill and after two fruitless visits the family doctor, was diagnosed with Stage 4 Neuroblastoma, which is a type of cancer that forms in certain types of nerve tissue, at the Red Cross Children’s Hospital.
Unbeknownst to this family, this diagnosis was about to change all of their lives drastically…
What do you do when you receive the shocking and unwelcome news that your child has cancer? What do you need? How do you handle it?
What do you do or say when the child of a friend has been diagnosed with cancer? How do you support them best?
What do you say and what should you never, never, EVER say to the parent of a child with cancer?
It is difficult to know what to say even to an adult who has been diagnosed with cancer, let alone to a child or the parent of a child with cancer…
The following was written by the mother of a child with cancer to let everyone know how she felt and what is cool and what is not cool to say to someone whose child has cancer… we hope that it will be of some help to those who have just heard that a friend or family member’s child has just been diagnosed with cancer and the family is about to face the battle of their lives….
Some children who have been born without a limb or who have had a limb amputated feel pain in the non-existent body part. This is often called phantom pain. This pain is caused by damaged nerves from the amputated limb that continue to send signals to the brain. These signals are interpreted as pain.
While the pain the child experiences is not caused by an actual injury, the sensations are very real and can include burning or shooting pain, achiness or cramping, or pins-and-needles feelings.
The sensations of phantom pain are very real. Following an amputation, there are still nerves present in the remaining portion of the limb and these nerves send pain signals to the brain and tell the brain that the limb is still present.
Phantom limb pain is a well-recognised pain syndrome which can resolve on its own with time, but because pain can interfere with your child’s quality of life and decrease physical function, there are various treatments available.
We are desperate for NEW winter footwear and clothing for our Little Fighters and unfortunately the response has been absolutely minimal so far.
We have close to 15 000 followers and a reach of over 50 000 people weekly!! If just 10% would purchase JUST ONE item each we would more than make our target 😥
Every year the Little Fighters Cancer Trust aims to provide around 2 000 Children with Cancer with warm clothing, scarves,gloves, mittens, socks and shoes before the winter cold sets in, and this is for a VERY good reason.
Most of our Childhood Cancer Families cannot afford to purchase new clothing and due to weight loss or gain as a result of the treatment it is often necessary. It is absolutely vital that a Child with cancer keep warm at all times because the cancer treatments such as chemotherapy and radiation therapy lower white blood cell count.
White blood cells are the body’s weapons against infection; having a low white blood cell count weakens the cancer patient’s immune system. If treatment has lowered your child’s white blood cell count, that may explain why they feel cold. Platelets are one of the three kinds of blood cells that circulate oxygen throughout the body. If one does not have enough of them, one’s body cannot get enough oxygen, which means one can develop anemia-which causes one to feel cold, among other things.
Hearing the doctor say the words “your child has cancer” will never be easy to hear.
Parents go through several stages throughout this process much like the five stages of grief; denial, anger, bargaining, depression and acceptance.
However, unlike losing a loved one suddenly, cancer can go on for several years with many highs and lows.
This results in stages varying in timing, duration, and cycles.
By acknowledging and understanding the possible stages you can better progress through the phases parents’ may go through.
Most days I love what I do with the Little Fighters Cancer Trust because although it is tough to deal with Children with Cancer and their Families every day because we see firsthand what they go through, knowing that we are helping take the strain off them even just a little bit is a good feeling.
TODAY I HATE MY JOB!!!!
Today is the kind of day that I hate my job – the kind of day when things are trundling along and one is doing what one does to help our beneficiaries but somewhere deep down there is a feeling that there is a monster lurking in the dark which is going to pounce any minute… and then it does!!!
Around 30 minutes ago I received a WhatsApp message that made my heart drop, my stomach curdle and my eyes tear up…
The results of a new study suggest that being labelled “a child survivor” leads to problems in adulthood
While many Children with Cancer now survive, new research has shown that they are at greater risk of poor mental health outcomes, such as anxiety and substance abuse, according to a Canadian oncologist who was surprised at the extent of severe issues.
About 80% of children with cancer will achieve a long-term cure. Yet childhood cancer survivors may be vulnerable to long-term physical effects that can be severe. Less is known about impacts on mental health.
In a recent issue of the journal Cancer, researchers analysed data from about 4,000 childhood cancer survivors in Ontario as well as 20,000 others in the general population to compare health care use. The findings have implications for mental health supports and parenting those who have survived cancer.
Before we go any further though, please join the Little Fighters Cancer Trust in supporting Shanaya and her Family by downloading the pic on the left and using it as your Profile pic for today and the next few days to show them how much support there is for our little Butterfly Princess.
For those who may not have been following Shanaya’s journey with cancer, histology results on 13th September, 2017 confirmed that she had Stage 4 Ewing Sarcoma, a rare bone cancer. The bottom half of her left humerus had been eaten away; the top part of the left humerus was fractured and there were metastasis in both her lungs.
Shanaya has since undergone intense chemotherapy treatment cycles over the past 6 months, but unfortunately her arm was too damaged and could not be saved and the decision to amputate at the shoulder was made.