Son

Outstanding contribution awards …

No sports achievements or academic ones either, no public recognition or want for any pat on the back, he doesn’t care much for what others may think of him …. he is just being a remarkable human just being himself.

Continue reading “Son”

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Reflection


30 sessions of radiation, 5 days a week for 6 weeks, it was grueling.

“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”

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”

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”

11 March 2017 – a moment of pondering

Last night as I held the vomit bag in front of Dylan’s mouth, tissues in my other hand, simultaneously cradling his head on my belly, for the second time that day, I thought about the vast contrasts in this journey. He is better yet still sick. In fact he is in worse shape than he was a year ago, and if truth be told a year ago if left untreated he would of most likely been dead today, if not dead most definitely been in a much worse reality.

My heart aches with the paradox of this journey. Continue reading “11 March 2017 – a moment of pondering”

A life to remember – Dad

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“It’s been an honor Dad.
Today we are Celebrating a life well lived
He was loud
Strong willed
Hard working
Funny and friendly
He was so loved
And he will be very fondly remembered.
Generous, a joker and so helpful, he accepted you as is ……”

Continue reading “A life to remember – Dad”

Awake and Aware

 

imageAwake and Aware
“we all get rocks along the journey, they’re all gems in their own right”

Dylan, my 13 year old son and I started an Instagram page a month or so ago, sharing his ‘treatment’ journey, to help create awareness of childhood cancer. This journey is pretty hectic and I have found that sharing short and fast is easier rather than a longer piece written on a blog, so haven’t written much here. But Instagram is our shared page for sharing and my blog is my space for sharing. I still honor and respect that this is Dylan’s journey and so I get his ‘approval’ before I share anything publicly, but I suppose I can share differently in my blog.
It’s been 6 months that we’ve been on this crazy ride and I recently shared a collection of ‘the face of childhood cancer’ of Dylan, and realized that we are still not really sharing all of it, I’m not sure the whole picture can ever be shared, but in our quest to raise awareness I write this short blog and share it with you all.

 

I can’t share photos of Dylan in pain, crying, frustrated, sick, confused and afraid because at those moments I was holding him, comforting him, drying his tears, wiping his head, holding the vomit bag, having him squeeze my hand … There are accidental shots, very far and few between that capture the rest of the reality behind the smile. Maybe this is why we have half a picture of what childhood cancer really is.
Childhood cancer doesn’t end after the last radiation or the final chemo drug is injected. Children’s bodies and minds are not fully grown, so the treatments they receive have very far reaching consequences on their lives, forever. When Dylan has his final dose of chemo, his journey changes,


it doesn’t end. I share this not for pity or sympathy, but for awareness, I share this for the others who will encounter this path in life, for the ones who won’t, because I never knew this world existed until now, perhaps sharing this will bring that one day closer, the day where treatments are only helpful and not harmful.

 

Our only intention is to create awareness. Help us make a difference to the future of Children who will travel this path, share the awareness, be the change.

 

image‘This kid is definitely walking this path in presence and peace with courage and acceptance.’

In a moment

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It’s hard to believe that four months ago we were sitting anxiously beside Dylan in the airily peaceful recovery room waiting for him to wake up. He had just had a life saving 8 hour brain surgery to remove a 4.5cm brain tumor.

Prior to that we had never been to Royal Children’s Hospital, we had driven past countless times and wondered what it was like inside, now it’s all too familiar. In the months since he has had countless tests, appointments, procedures and as you know currently undergoing chemotherapy.

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He has now completed the first week of chemo.
Chemo treatment is pretty serious business, there’s a whole lot of preparation before it is administered, while its administered a very close watch is kept on Dylan (because it is poison) and then there is a whole lot of monitoring and testing. Originally it was a Monday to Friday hospital stay but, as I have now experienced these things are very flexible, we ending up staying an extra night.
Dylan made the decision to stay the extra night in hospital on Friday due to the ‘side effects’ of the treatment, even though he really wanted to come home he agreed with the professional opinion of another day of care Although the treatment took a significant toll on him he was pleasantly surprised….. He thought it would be worse. Perhaps the endless supply of anti nausea drugs did the trick or perhaps it was having me at arms reach for the majority of the time, never the less he was relieved.

So after a rough week we got home on Saturday afternoon, tired but so happy to be home. Then Monday, another treatment but just at day oncology.
The surprise from the nurse coordinator and oncologist was clearly visible, Dylan has coped remarkably well with such a toxic cocktail. We are not sugar coating this at all, it’s tough, and we know it will get tougher…. But we are focusing on the successes, the feel good moments, the no vomiting days (few and far between), the little bites of food, the contact with friends, the closeness and growth that comes from journeys like this, it is remarkable, something money can’t buy and books can’t teach.
This past week we met some of the most courageous and remarkable humans, we were touched by the generosity of charitable organizations and warmed by the care of professionals. These are some of the treasures though the sleepless nights and painful days…..

In just a moment our world changed.