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”

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”

Time


That day on the 3rd of May.

What are the odds.

It’s hard to believe we have Dylan’s three month check up coming up, exactly a year after his first visit to the doctor, with symptoms of headaches and vomiting, really thinking nothing serious was wrong. The first thing the doctor had said when seeing Dylan was “maybe his fringe is too long” , you know maybe his hair was in his face making him get headaches….. Boy was that far from the reality.

Continue reading “Time”

Another Layer


 

Six months ago, brain surgery had been done and dusted, 30 sessions of radiation had been completed and this was the time to recover and to prep for chemotherapy. They tell you that it’s a few weeks break in between treatment. However it’s not really a break. During this time Dylan required a number of test and procedures, including two separate surgeries, one being insertion of a double port and the other being the insertion of a PEG (Percutaneous Endoscopic Gastrostomy) – an abdominal feeding tube. Continue reading “Another Layer”

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”

Today

image
Infinite possibilities are created in chaos

We huddle tightly below deck, while the ferocity of the storm rips relentlessly at our vessel. Battered continuously, whipped around like a rag doll there’s little we can do. Our control swept right from under us we are left clinging on to one another. Then, just as suddenly as this all began, there’s a break in the clouds, there’s an uneasy calm, an almost sickening stillness. We are left bobbing in a very vast ocean, quite unsure of any direction.
The few things that keep us afloat during the brutality of this …. Limitless courage, unconditional acceptance, surrendered trust, total presence, and of course love. These things remain with us. Continue reading “Today”

Not yet written

Brain Surgery June 2016

Tonight I sit here swallowed in silence but surrounded by music …. Bells dinging, pumps humming, alarms ringing, babies crying, chatter at different tones and pitches. I sit here in the isolated songs filled with such diverse emotions.  Continue reading “Not yet written”

Hate … 


Hate is such a strong word … One I don’t like to use … But seriously … I absolutely hate that my normal is supporting my son while he vomits, I hate that he is so critically thin, that the treatments I sign him up for damage parts of his delicate body, I hate that I am so helpless and I hate that I am angry.
I am so exhausted.
I hate feeling this aching in my chest.
Fuck cancer !
I love being honest.

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.’