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

image

“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

image

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.

image

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.

The other ‘C’ word

image

The other ‘C’ Word !
It’s been almost 16 weeks since Dylan had his brain surgery and it still feels like I’m in an alternate reality.
On one hand it feels like it was just yesterday that I sat in the doctors waiting room having been told to come in immediately to get the MRI results, you just know it’s not good when that happens, I can still feel exactly what I felt like getting that call, sitting there lump in throat fighting the tears in a crowded waiting room feeling the reception staffs emotions, I didn’t sleep that week and haven’t really slept properly since, that was Monday, 6 June .
On the other hand I can’t remember what life was like before this crazy sh*t happened, it feels like forever.
There’s no denying the massive impact this kind of thing has on your life, relationships change, there’s the disappointment and guilt for feeling disappointed, understanding but still feeling confused, so much frustration, you’re thrown into an unfamiliar world filled with a new language and different rules and you don’t get time to stop and think, it’s just go and do it! I’ve learnt things I never had an interest in learning, met so many different people with professions I never even knew existed, my heart gets broken repeatedly but just as quickly overflows with love. We’ve been touched with compassion and kindness from so many. It’s one hell of a ride I tell ye! And we are now ready for the next stage….
The other C word – Chemotherapy, it begins on Monday.
The basic plan is go for blood tests and see the oncologist on Monday, then we can come home (or hang around the hospital, will depend on how ‘on time’ the appointments are) and then go back in the evening (6 or 7pm) where Dylan will be admitted (would be great if we didn’t need to have the wait time In between because that adds to the anxiety) and then start his treatment (Monday night). If all goes well and to plan he should be finished on Friday afternoon and come home for the weekend (I will be by his side the whole time, and Marco and Josh will be there for a lot of the time). Back to the oncologist on the Monday and then another treatment on either the Tuesday or Wednesday (just for the day). Then during the next few weeks he will have a variety of tests including hearing (one of the side effect of the chemo he is on is hearing loss), lung function, kidney function, liver, heart, spinal tap and I think that’s about it. If his blood count drops he will get transfusions (thank you to all you amazing people who donate blood) which depending on what he needs will take anywhere between 1 to 4 hours. If he gets a temperature he will need antibiotics and stuff so gets admitted to hospital. Then if all goes to plan he begins the next cycle, 4 cycles of 28 days (should finish sometime in January 2017).
In this time there will be lots of watching the Walking Dead and Goggle box and whatever entertains at the time, playing Minecraft, blockheads, G mod etc (learning more about how to crochet for me), reading together, deep meaningful talks, hugs and foot massages (Dylan gets free ones I’ll have to pay), meeting new people, learning new medical stuff, catching up with friends, celebrating birthdays (Josh will be getting spoilt), Halloween (I had a great plan for Halloween but…. Dylan won’t let me do it because I recon he is scared that the nurse will stab me in the head with a syringe, so no middle of the night zombie costume for me, will have to go with psycho mother), Christmas, new year (perhaps fireworks from the hospital – no alcohol allowed) , so many opportunities for champaign and cake !

We love and appreciate all of you xxx