Sometimes the fast hard approach for my son, Toon, was disastrous. The most important thing then was that the nurse allowed him to have a little bit of control.
We should be careful of each other. We should be kind while there is still time.
Let your self be seen ('self-disclosure', mask off), creativity in finding solutions and alternatives, courage... And aftercare is not finished until the child is 'better'.
What do we need from practitioners, in addition to expertise?Curiosity, authenticity, genuinely to listen, to delve into who we are. Mildness, patience, attention, time. Predictability, preparation, playfulness.
Although it often feels like it, as a parent you are not just powerless and surrendered. You always have some influence on some thing. Learn when you can do something, from moment one. It will greatly strengthen your child and yourself.
"One size fits all" does not work. Everything must be tailored to this one child, his needs, pace and experience. Knowing what does work requires attention, patience and continuity
We are scared, worried and heartbroken. Sometimes even desperate. It is particularly in this vulnerability that we find our strength, and the strength of our child.
You can only really reassure your child when you yourself are reassured. If you are not convinced that you can do it, your child won't believe it either. You can do this! We can do this!
Hope! Sometimes against all odds. Hope!
First of all it's all about survival but then you realise it's all about living
We should all be allies. Child, parents and medical staff fair best when there is equality in our approach to treatment.
This process could have turned out to be the source of trauma. Instead it has proven to be the centre of her strength.
Away with professional distance towards our children! We want professional closeness.
Courage is not about not knowing pain. Courage is allowing yourself to be scared. It is our responsibility to let our children feel as safe as possible so they can face their fears of safety.
The cancer is bad enough as it is. We are going to do everything in our power to make sure it doesn't get any worse than that.
‘Charlie Braveheart’ Foundation aims to make the unbearable more bearable. Hospital treatments for children ranging from First Aid Posts to Orthopaedics, Burns Units, Rheumatology, ENT and Oncology can be a traumatic experience.
Our mission is to train medical and nursing professionals to help alleviate childrens’ suffering by being able to apply the following Tools from the Tool Kit:
A training app is thus being developed with clearly detailed explanations and instruction videos that are suitable for different levels of expertise.
A pilot of this programme will shortly be launched at the Princess Maxima Centre and its 15 shared care hospitals, preceding large-scale distribution to the other hospitals.
The scope ranges from First Aid Posts to Orthopaedics, Burns Units, Rheumatology, ENT specialists and Oncology.
5-year old Charlie’s life, and the lives of all of her family, suffered a horrendous and devastating change on May 10th 2017.
She was diagnosed, that day, with Childhood Acute Lymphoblastic Leukemia (ALL).
Intensive chemotherapy began immediately at the Emma Children’s Hospital at the AMC (Amsterdam) under the inspired guidance of paediatric oncologist Dr. Marianne van der Wetering and her team.
Three weeks later a further setback occurred when Charlie was confronted with her first set of complications. The cocktail of medications to suppress side effects and symptoms would often made her feel worse than the leukemia itself.
The resilience that a young child shows in such extreme circumstances is extraordinary and almost beyond belief. The family and medical specialists do their utmost to minimise trauma, as far as possible, throughout.
The acute shortage of adequate remedies treating pain and stress prevention soon however became painfully apparent.
The taking of blood samples, introducing an intravenous drip needle, placing a Peripherally Inserted Central Catheter (PICC), inserting a tube, or fixing a port-a-cath suddenly become a terrifying and excrutiating part of daily reality.
These painful but moreover frightening experiences can scar a child’s spirit forever.
Charlie’s situation, sadly, is not unique. Far too many children are having to cope today with similarly grim tortures.
Charlie’s parents and grandparents felt compelled to set up the ‘Charlie Braveheart’ Foundation in order to “make the unbearable somewhat more bearable” for all of these children.
You can support this initiative by becoming a donor for 5 years.
The foundation has been granted the ANBI status, which means it is qualified as a Public Benefit Organisation and your donation will be tax-deductible when paying income tax in The Netherlands.
The fundraising will be done through Ambassadors, who will organise an event where both a professional and a ‘hands on’ expert will speak on the subject of “What you must know if your child or grandchild is suddenly faced with a lengthy stay in hospital”.