Two years ago today, was the first of many MRIs that Dylan has had. Although the results were not at all expected and completely shocking I am grateful every day that he had that first mri, the one that eventually led us here, past surgeries, radiation, chemotherapy, a multitude of test, procedures and medications to NED (no evidence of disease). Continue reading “Reflection ~ 2 years”
This memory came up on my Facebook feed, it reminded me of why I write so much ‘random stuff’ down. This, writing the wanderings of my mind, unedited, helps me navigate through all sorts of situations life shares with me. I am so grateful I started doing this 4 years ago, it’s made the more challenging experiences a little less heavy to carry.
Continue reading “Talking about Cancer – The Voice in my Head”
A day like any other…. Well a day better than this time last year and worse than this time two years ago, but another day, pretty much the same as the day before.
This time last year Dylan was in hospital having blood transfusions, IV antibiotics, a wide range of medications, he was a little lighter weighing in at 40kgs, and vomiting two to three times a day. He was half way through his chemo, and looking forward to finishing treatment and Continue reading “Another Day”
Dylan, now 14 years old, was diagnosed last year in June with Medulloblastoma, an aggressive malignant brain tumour. After undergoing high risk brain surgery, 6 weeks of daily radiation, 4 months of intensive chemotherapy and countless other tests, procedures and medications he is now 9 months post treatment with clear scans. Still suffering side effects from treatment, he took up the challenge to raise some much needed funds for childhood cancer research. (Better treatments are desperately needed). Continue reading “Be The Change – Hit the Sweet Spot”
The face behind the smile.We often hear comments about smiles, these smiles remind us that these are children first and foremost, they are children who want to enjoy their childhood with all the innocence and laughter childhood brings. Sadly in the world of childhood cancer much of that innocence is replaced by the harsh reality of life with all its ups and downs, successes and losses. Those moments are rarely seen in a photo or on a video.
That smile has nothing to do with cancer, it’s only there because this is a child, who no matter what traumatic experiences they have endured and will continue to endure will still smile, because in amongst the pain and suffering there is joy and love, there is childhood. Continue reading “The Face Behind The Smile”
The final 21 faces of courage have been shared.
And just like that, it’s done, end of treatment or there’s nothing more that can be done. “Come back in three months time for blood tests, scans and an oncology appointment.”
Continue reading “Faces of Courage – Childhood Cancer Awareness 🎗 3 – EXIT”
Another 21 children’s stories have been shared, just the barebones of their experiences, a snippet of their journey, barely scratching the surface of what childhood cancer is.
It’s truly been a soul searching experience for me personally, I’ve cried almost daily, questioned myself and my intentions, felt angered and frustrated, as well as honored and humbled. I questioned my beliefs and wondered about hope. I experienced disappointment, I’ve felt like it was a battle that could never be won. I have learnt to persevere, beyond myself for something that is more about others and less about me.
Continue reading “Faces of Courage – Childhood Cancer Awareness – 2”
26 down 42 to go Faces of Courage
Every day for the past 10 days I write and share these stories of children, some who are still enduring treatments, some who have come through the other side and some who have passed away. It’s been exhausting, it’s relentless, it’s heartbreaking, it’s what I remember my hours felt like when Dylan was going through treatment , and this is part of what these parents, the ones before and the ones still to come experience when they have a child with cancer. Continue reading “Faces of Courage – Childhood Cancer Awareness”
This September I will be sharing over 50 individual children’s experiences with childhood cancer, it’s been an extremely humbling experience putting this together.
In the spirit of love these parents have entrusted me to share snippets of their child’s cancer experience in the hope that more awareness will be created around this devastating disease that is largely underfunded and under researched.
“It’s never about sympathy but more about understanding and acknowledgment.”
Continue reading “It’s not all black and white but rather a discovery of brilliant new colours.”
“THE MASK… we had radiation planning today (28/6/2016), Dylan has a custom made ‘bed’ and a super freaky mask that will help hold him in position during his radiation treatments. Seriously I am honored to be traveling this life with this kid, not a single complaint or moan, he’s just doing what needs to be done to get well, the kids got tenacity and totally rocking this journey!!! ”
Radiation – I’ve been skirting around this topic for a couple of weeks now. I wasn’t quite sure how to put the experience into words. It was worse than we imagined. It made the diagnoses real. The long term side effects are frightening….. Maybe these are the reason I found it difficult to write about it.
Continue reading “Radiation Therapy”