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”
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”
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”
Our lift patiently waited for us while Dylan finished vomiting this morning. He was that determined to go to RELAY FOR LIFE. It was a very last minute decision, yesterday a friend called me and told me all about it, I mentioned it to Dylan and he was keen, pending how he felt that morning. So with no real plans and not much knowledge of what we were really getting ourselves into we jumped in, and I’m so glad we did.
We did end up staying a little longer than planned, originally it was only for the first lap, but we met some great people, and were enjoying the fresh air and the awesome atmosphere that comes with being surrounded by groups with the same mission, and Dylan even got to enjoy a couple of laps in a wheelchair with Lara.
Continue reading “I couldn’t be prouder”
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”