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.
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.”
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.
This week as we attended to Dylan’s post treatment scans and tests we were reminded of the tragic reality of this horrific disease. Two mothers held their little heroic boys in their arms as they said their last goodbyes, allowing the whisper of their last breath to be released in the comfort of their mothers loving arms. Both boys courageously endured very harsh medical treatments, while still living fully sharing their energy and joy to all those around them. Their lives weaved with challenges that many others never experience, their impact on the world around them significant and permanent. Continue reading “Aware”
“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.
“19 July 2016
What can I say, it’s been tough.
Today as our eyes ‘leaked’ Dylan and I discussed how weird we felt. Continue reading “Reflection”
Sometimes it’s not the message but the way it is delivered that is painful.
So as you may know not all tumors are malignant (cancer), so when you have a tumor removed it is tested to see whether or not it is malignant. Obviously the results dictate much of how your forward journey into treatment will unfold. In my view, the way this news, your results are delivered to you is pretty important. Continue reading “Shoot the Messenger”
I so often read those ‘copy me and share’ Facebook posts about being available to help, about reaching out for help. I wonder how much weight is in that, I wonder how many people reach out when they need to. I know I struggled to ask for help, and so often I go to an auto response of ‘great thanks, how are you’. I rarely do that now days. I’m much more raw, naked and open … It’s not hard to know how I am feeling if you ask. It was Dylan’s challenging health journey that tipped me over the edge. Continue reading “Reaching out”