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.
And so Shanaya’s Journey with Ewing Sarcoma entered a new phase in 2018.
This would include 2 more intensive cycles of chemo with all the bells and whistles that go with it, major surgery or surgeries, and the possibility of maintenance chemotherapy – but at least the end is in sight…
Mommy and Daddy decided that because our Supergirl Shanaya the First had already slayed the first 4 intensive cycles of chemo and all its side effects like a true warrior princess, she could draw up a “Dream List” of things that she would really like to do, and they would try their best to make them come true.
January started off early with hospital admission number 10 since Shanaya first fell ill in April 2017 – in that short period of ten months, this poor little princess had undergone:
- 10 hospital admissions;
- 8 times in theater;
- Far too many scans, blood tests and doctors appointments;
- 5 months of misdiagnosis and ;
- 5 months of Chemotherapy
And so today we continue with more of Shanaya’s Fight against Ewing Sarcoma…
Ewing sarcoma is the second most common bone cancer in children. It occurs most frequently in the long bones of the legs or arms, the pelvis, chest wall, spine and the skull, but can also begin in the soft tissues and not involve bone.
This disease most often occurs in adolescents, with nearly half of cases arising between the ages of 10 and 20. Ewing sarcoma is somewhat more common in males than in females.
During December 2017, Shanaya’s blood counts took a nosedive, and with a blood platelet count of a mere 18, she was admitted for her first blood transfusion.
Fortunately she was able to go home the next day, so was ecstatic as she hates to be away from her brother Unma with whom she is really close and who she misses terribly when she is in hospital.
Young Shanaya took to her battle with cancer as she does everything else – with a determined smile, even when she was really not feeling well.
Mommy was there with her in the hospital every step of the way, and because Shanaya is Daddy’s Girl, so was her daddy Shane whenever he could be.
Unfortunately, due to the chemotherapy treatments, Shanaya lost her beautiful long hair, but she was not fazed….
“No hair not going to stop me from being the diva princess I am. I am the one ‘n only Shanaya the First!”