June 2016 we served our 100th family. Since then we’ve passed milestones of service such as 1000 families served and 100 families served in a month.
Currently, we provide services for ten families on an average day. About 300 families per month.
We anticipate with the launch of our Free Spotlight Hope APP that we will soon be able to reach and serve nearly all of the families impacted by Pediatric Cancer.
That’s about 17,000 families per year, just for the new cases.
To grow to this level of service we need your help.
We are all volunteer, and 100% of contributions go toward our Program Services. We currently serve the families we work with at the tremendously efficient rate of just $20 per family.
If you think it’s worth supporting a family who can benefit from our programs, please become a BraveHeart today, and sponsor at the level that is right for you.
Whether it is adult cancer or Childhood Cancer, no matter how much it feels as if we are going through it alone, nothing could be further from the truth!
When an individual is diagnosed with cancer, it doesn’t only affect that specific individual, it affects many, and this is never truer than when it is a child that has been diagnosed with cancer.
The child is not the only one going through everything that this horrible disease causes – the parents, siblings, other family members and friends of the child and parents also experience it.
NOBODY escapes the scourge of cancer once it hits a family – nobody escapes unscathed!
Cancer is not a singular experience, it’s plural. I know this to be true because as a Survivor myself, I’ve seen it and I’ve experienced it first-hand. Even when someone is diagnosed and going through treatment all by themselves, they’re not really alone. There are others involved. The doctors, nurses and medical staff are there to offer not only medical help, but also support, advice, and more…
While I was single and mostly going through this ordeal by myself though (much of it because I am the type of person who needs to deal with challenges on my own and in my own way), the amount of support that I received from friends, locally and internationally, and friends of friends who I did not even know, was Phenomenal!! It also made me realise that even though it was MY fight, there were times when I gratefully accepted help because I was too weak to do otherwise, and there were times when I had to swallow my pride and ask for help!
Whether you know it or not, there are others who may or may not have the same type of cancer as you/your child – They are pulling for you. When it comes to Childhood Cancer, there is even more support from total strangers – other “Onco Parents” who have been or are going through the same experience, and anyone who knows them…
Cancer has a way of binding people together and causing them to feel empathy toward one another. We are a rare breed, those who’ve gone before you – we understand the difficulties you will face; we know there will be days when you’ll feel like giving up, but you won’t because somewhere inside, there’s a natural instinct to survive.
You may not see any evidence of the fact that you’re surrounded by others, but know that it is so! Each person touched by cancer cares – we know that cancer quickly teaches on that it has the power to discourage, demean and destroy a life – it wants you to think you’re the only one, that you’re alone and that no one cares, but we do! We all do! And some of us care more than others.
The next time you are feeling isolated or alone in your battle, remember that you are not alone – we are here – all you have to do is reach out!
Cancer is a demon; Childhood Cancer even more so, as it attacks innocents who have not even had a chance to enjoy life – and one that you should not take on alone – use every resource available to you to get you and your child through the nightmare!
As a parent of a Child with Cancer you need to ensure that you are strong and healthy enough to endure the long haul, and for that you need help!
Find someone to talk to – you will be surprised at how much just talking about what you are going through helps – and if you speak to an “Onco Parent” who has gone through the same fight as you, they will know exactly what to say to help.
In Africa we have a saying, “It takes a village to raise a child”
In a South African context this proverb is extricably linked to the value or principle of “Ubuntu”. People have different interpretations of this value but the key message to take from this value is that no one is an island and we should care for the welfare of others like we do for ourselves.
“Ubuntu is a philosophy that considers the success of the group above that of the individual.” Stephen Lundin- Ubuntu!
The word ‘Ubuntu‘ originates from one of the Bantu dialects of Africa, and is pronounced as uu-Boon-too. It is a traditional African philosophy that offers us an understanding of ourselves in relation with the world.
According to Ubuntu, there exists a common bond between us all and it is through this bond, through our interaction with our fellow human beings, that we discover our own human qualities.
Or as the Zulus would say, “Umuntu Ngumuntu Ngabantu”, which means that a person is a person through other persons. We affirm our humanity when we acknowledge that of others.
The South African Nobel Laureate Archbishop Desmond Tutu describes Ubuntu as:
“It is the essence of being human. It speaks of the fact that my humanity is caught up and is inextricably bound up in yours. I am human because I belong.
It speaks about wholeness, it speaks about compassion.
A person with Ubuntu is welcoming, hospitable, warm and generous, willing to share.
Such people are open and available to others, willing to be vulnerable, affirming of others, do not feel threatened that others are able and good, for they have a proper self-assurance that comes from knowing that they belong in a greater whole.”
So, the moral of the story – make use of the philosophy of Ubuntu – allow others to help you in your battle against the beast Cancer – you are not alone!
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.
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.
Shock
Childhood cancer will always come out of nowhere and families are in utter shock when it happens. The connection between your healthy happy child could never be linked to a malignant tumor.
Many parents report feelings of numbness as they are unable to think clearly and struggle to remember things the doctor has said. The shock will only subside over time but, there are things you can do to better alleviate it.
Contact family or friends and reach out for their support, by discussing the situation. This helps sort through the myriad of questions and thoughts going on in your mind.
Ask a close friend to take notes when meeting with doctors, so if you do ever go through a blank moment, there is someone there, writing down important points the doctor or surgeon will mention.
Disbelief & Denial
Along with shock, denial and disbelief occur. Often parents think some crazy mistake has been made and the results couldn’t possibly be from their child.
The time-frame of this stage should be as short as possible as treatment should not be delayed due to denial of the situation.
However, second opinions are recommended and will help to reassure you with the doubts you may have.
Research from credible resources will open up your mind to the different types of cancer and the commonality between them and your child’s diagnosis.
Fear & Anxiety
Parents will fear the process ahead as it is diving into the unknown. Even if you have had some experience with cancer you will still be unsure, as every process and diagnosis is different.
Although it feels like the world has stopped, unfortunately, it hasn’t, so you going to feel pressure in your job, caring for your other children as well as the financial strain due to the high costs of the medical treatments.
To reduce anxiety beware of your thoughts and negative self-talk, stay away from the hospital vending machines as soda, possessed foods and caffeine can add to levels of anxiety.
Also, try to do light exercise daily and proper sleep are also very powerful tools in managing stress.
Guilt
Parents will often question where they went wrong, or question whether or not they were paying enough attention to the early symptoms.
Mothers may question if they were responsible in their diet and lifestyle during their pregnancy.
It is important to understand that guilt links to finding reasoning.
To make more sense of the situation you will turn to yourself, and others in finding blame and reason for the situation.
This can then result in internal family conflict. It is important for parents to overcome this feeling of guilt as it may detract attention from the important tasks and decisions they need to make.
Depression
Your child is a direct extension of you.
The hopes and dreams you had for your future will echo in the hope and dreams you have for your child’s future.
These dreams will now all be in question of ever being achieved, which can add to your feelings of depression, which can be a very strong emotion.
In order to cope with depression, one must find ways to express emotions whether it’s in therapy, writing or speaking to friends.
Anger & Frustration
“Why me? Why my child?” Understand that you will not be able to ever answer these questions.
Other frustrations can come from a complex health system or a family member who does not seem to offer enough support when needed.
Being able to find a method to release this anger is very important in the coping process, exercise or meditation can allow for a positive release of emotion.
From person to person the timing and duration of the stages will never be the same but, by understanding that you are not alone in your emotions you will be more equipped to manage this time as best as possible and ultimately be more present.
Practicing self-love through caring about your personal health will help you be more present for your child and family.
15 years ago, I heard the words that every parent fears – “Your son has bone cancer.” I was numb, I was shocked and couldn’t believe that my 12-year-old son, Ryan was ill.
That was the beginning of a 6-year roller coaster ride for Ryan. We experienced it all – the months and months of chemotherapy, 15 surgeries, and the never-ending anxiety over upcoming CT scans.
As a mom, I felt so helpless when Ryan was first diagnosed. How could this happen to my son? Why couldn’t I protect him from all of this? There was little I could do to make him better. All I could do was love him.
My Journey
After the immediate shock of Ryan’s diagnosis, I did what moms do everywhere – I pulled myself together and took care of my family. Sure, the anxiety, fear, and terror were there, but I pushed it down and built a new normal for my family and myself.
There were lots of scary moments – the surgeries, the CT scans, the recurrences and many tough decisions – but through it all, I kept going, and so did my kids and husband.
We thought we were doing well. We felt other families needed the limited support resources more than ours. We were wrong.
Every day of our journey was a challenge. Caring for Ryan, trying to make sure my teenage daughters were ok, worrying about my husband and, on occasion, myself. Everything in our lives was turned upside down yet we still were functioning.
If only Ryan could survive, we would be ok, I thought. What I did not understand was the cumulative toll of the stress that was building each day. I learned that a child’s illness could leave lasting scars.
During Ryan’s illness, and since his death, every member of our family has felt the impact of pediatric medical traumatic stress (PMTS). Our oldest daughter lives in fear of every ache and pain, our younger daughter struggles with anxiety and my husband relives the most stressful experiences over and over. And me? I am always waiting for the next shoe to drop.
We learned we are not alone. Serious childhood illnesses and injuries can be terrifying experiences for children and their families- 20% of young children, 49% of adolescents, and over 30% of mother’s experience moderate to severe symptoms of post-traumatic stress disorder (PTSD).
Learning to Cope
My healing process has been lengthy and ongoing. I won’t lie to you and tell you there is some cure – one that will take away all the pain and stress. But what I learned through the years is that there are ways to minimize the impact of a child’s illness on you and your family.
That’s why I founded Case for Smiles and created Coping Space: an online resource and support site offering coping strategies and tips related to a child’s life-changing illness. It is designed to help you and your family cope, build resilience and restore balance.
Here are a few simple things I learned about coping and creating healing space for myself and my family.
#1 Set Up a Routine to Simplify Life
Keep the same morning routine and breakfast time, whenever possible – this makes starting the day more comfortable. Setting up a family check-in routine – this can happen in the morning to help plan the day, or at any time that works for your family, is also helpful.
When setting up routines, don’t forget about playtime! Setting aside a set time for your child and family to have fun is critical. Playing your favorite games, reading, drawing, or watching movies are all great ways to have fun!
Just like the morning routine, keep to the same night routine – Have a dinner and bedtime routine to help everyone relax at the end of the day. Dinnertime can be an excellent way to talk about what happened during the day.
Don’t forget to schedule time for yourself! Set time to check in with yourself each day. Take time to breathe, relax, and think about what is going well in your life at the moment.
#2 Become Mindful of Your Fears and Stress Triggers
Throughout my day, there are times when I experience anxiety due to the traumatic events from Ryan’s illness many years ago. I worry about my two daughters when I don’t hear from them regularly. If my husband is late getting in, sometimes I panic. Remember, everyone reacts differently, so you may or may not experience all the signs or symptoms of posttraumatic stress. Or you may or may not experience all at the same time. Being aware can help you take care of yourself and seek professional help if needed.
Symptoms of posttraumatic stress include:
Reliving events connected to the diagnosis (also called re-experiencing). Example: “To this day, I can’t stand the antiseptic smell of hospitals.”
Staying away from reminders of the illness (also called avoidance). Example: “I block it out and try not to think about when I was in the hospital.”
Feeling anxious, jumpy, or being “on-guard,” also called hyper-arousal. Example: “I know that doctors say we’re in the clear, but I take my daughter’s temperature every day. I am always afraid something bad will happen.”
Having strong negative thoughts and emotions (fear, guilt, blame, anger, sadness, confusion) or have trouble feeling positive emotions. Example: “If only I hadn’t done X or Y, I wouldn’t have gotten sick.”
Experiencing other symptoms, such as developing new fears, feeling “spacey”, empty or numb. Example: “Ever since my son was in the hospital, he is terrified to be left alone- he never used to be like that.”
I have found that if I can identify situations that I know will be stressful to me ahead of time, I can cope better.
#3 Don’t be afraid to ask for help
Let’s face it: no one can do it all or do it alone. Family and friends want to help and there is no shame in reaching out. For many, there is a stigma about seeking out professional help.
Take advantage of the many people who can help you and your family. Reach out to a Social Worker, Pastor, Counselor, Psychologist or Psychiatrist. There is nothing wrong with getting help including appropriate medication prescribed by your doctor. The only shame is allowing yourself to suffer when there are people ready and able to help.
There is no time limit to the trauma that comes from dealing with a child’s illness. If you are suffering, I know your journey is incredibly hard. Developing coping skills won’t necessarily make the road ahead any easier but doing so can help you manage the stress.
I am living proof that you can survive this, perhaps a bit sadder but also wiser, stronger and more resilient. I hope you will visit our new Coping Space website designed to make the journey better for you and your family.
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 3rd 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.
Please Share to Help Raise Childhood Cancer Awareness
“It is the essence of being human. It speaks of the fact that my humanity is caught up and is inextricably bound up in yours. I am human because I belong.
happens. The connection between your healthy happy child could never be linked to a malignant tumor.
been made and the results couldn’t possibly be from their child.
some experience with cancer you will still be unsure, as every process and diagnosis is different.
paying enough attention to the early symptoms.
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