Aware


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”

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Radiation Therapy

“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”

Shoot the Messenger

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”

Childhood Cancer – Many Faces

What wrong with this …. The stereotypes

Picture a sweetly smiling child, with a little twinkle in her eye, some colour on her cheeks and a beautifully shaped bald head. That’s the image of a child who has had treatment for cancer, and it doesn’t look bad, but it is what it is … An image, just a snapshot, possibly edited for visual effects.  Continue reading “Childhood Cancer – Many Faces”

That Day a year ago

Brain Surgery

This day a year ago when Dylan had surgery Life was transformed into something more.

We were remarkably calm considering the situation. Due to the fact that it was a long weekend everything seemed quite calm and quiet in the hospital, the Saturday we went into emergence flowed smoothly, we were seen promptly by a lovely doctor who was originally from Cape Town, questions followed, a cannula was inserted, blood was taken, and then the resident surgeon who was called in, an amazing Syrian doctor who throughout Dylan’s hospital stay visited him daily, got things moving smoothly and efficiently, after an examination, questions and a look at the first MRI we were taken to get another MRI, there was no one else in the medical imaging department, so the process to have the hour long MRI was quick, a few spots on Dylan’s head were shaved and little markers were placed on his head, he had the MRI and things from that point went quickly and are blurry. Essentially taking him in to emergency that day was the best thing we did. Continue reading “That Day a year ago”

Reaching out

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”

When worlds crumble

That Monday, a year ago, while I sat patiently waiting for Dylan to finish having the MRI cancer was the furthest thing from my mind. It wasn’t long that our entire world was left in uncertainty and disarray. An hour or so to be precise.  Continue reading “When worlds crumble”

Journal entry – Between the space

11 May 2017

Today I am grateful for those who have witnessed my truth, encouraged my authenticity and supported my vulnerability. Those who acknowledge others journeys no matter how rough and tumbled it may be are what I am grateful for. And I am grateful for the experiences which have allowed for my unraveling to open to more love and more empathy.  Continue reading “Journal entry – Between the space”

Journal Entry – Struggle

9 May 2017

My heart is pounding, I feel flustered, I’m swallowed by anxiety and drowning in desperation, my breathing is rapid, I’m struggling to open my eyes. Surrounded in stillness I gaze into the darkness, my eyes now open pooling with tears, my breath calms as I become fully awake, I realize it was just a nightmare as my mind flips through the scenes, I feel it on a whole other level, this time more real, as my heart begins to ache.

Continue reading “Journal Entry – Struggle”