Fantastic Mr Fynn

The following story is not my own, it is however a story that I feel strongly compelled to share.  And the reasons are many: to raise awareness of Childhood cancers and in this specific case Childhood brain cancer – because I know this is really important to the person who wrote the story.  It is about courage and strength – real courage and strength – the kind parents of children with cancer need on a daily basis, the kind that most of us will never even comprehend.  It’s about pain and horror and impossible choices; and it’s about a little boy.  A little boy who continues to amaze me with his phenominal spirit and determination.  The photos are shocking, but they speak volumes about what this little boy has had to endure and overcome in one short year.  It’s also about hope and perspective and keeping this incredible family in our thoughts and prayers, because their journey is not yet over.

“A year ago today our lives changed irrevocably.

We knew something was up with Fynn, and we received the actual diagnosis rather “matter of factly”. It saddens me that the medical fraternity took so long to agree with us. I know things now I wish I did not. One thing I do know all too well now, is that awareness of childhood cancer is seriously lacking, and yet it is the biggest killer of children in Australia, and brain cancer is responsible for a huge portion of these deaths. Maybe if there was better information sharing, children like our Fynn would have had a quicker diagnosis, less damage from tumour growth and the life-preserving operations to remove them, and a bigger chance at survival without the damage that is caused by the treatments. (Please note I used the word preserving and not saving, as the term survival is relative. A preserved peach is quite different to a fresh one.) In some cases these cures actually kill.

The past 2 weeks Fynn has had an infection which could have killed him, he was critically ill. He got the infection from a bacteria that is present in all of our mouths and is normally helpful to healthy people. To immune suppressed individuals it can kill. Why is Fynn immune suppressed? Well the chemotherapy drugs do that. The hope is that these drugs will kill the cancer in his brain. The truth of that is that the doctors do not even know if they actually work, as they don’t actually know if these drugs cross the blood-brain barrier. (You can google that one!) They are just giving Fynn these particular drugs as this is what has always been done and sometimes it works. More funding is required to do more research so that childhood cancer survival stories can be as common as the breast or prostate cancer ones. Fynn, and other childhood cancer victims deserve to live a life that is not dogged with “late effects”, the hangover from chemotherapy. These include hearing damage and the threat of secondary cancers, but there are many more the list is long and depressing.

So, I hear you asking, why did we agree to let Fynn have this treatment? Why not change our diet, our lifestyle, or seek alternative therapies? We know more about all of the alternatives than you will know. We also know more about the mainstream treatment than we should. We did not blindly accept the sugar coated advice of the doctors. Brad trawled medical research publications. We were armed. We met with these doctors, more than once and we argued for Fynn’s life. I think they were impressed with the level of knowledge we had acquired, and they engaged with us on a very honest and respectful level. At the end of the day we were not forced to have Fynn endure this maintenance chemo, the surgery and radiation were not negotiable, but this maintenance chemo was, we found out. So why did we do it?

Well most of the alternatives are not legally available to us, and some of them are downright kooky. And, at the end of all the debate, Fynn has the right to life and we have the responsibility allow him to fight. The decision had to be one we, Brad and I, could live with should Fynn die. So we agreed to go along with it in good faith. With the hope that it will pay off and that Fynn can have a relatively normal life. Not the life we had planned for him, but life none the less. And should he survive, our hope for him is that he can claw back some of his childhood, some of the innocence and find a normal place in this crazy world.

I so wish I could rewind and hear the scooters clattering, the ring of the bicycle bell, I wish I was grumping at Fynn because he has banged his skateboard up against the bedroom wall repeatedly and damaged the paint. I wish Fynn could run at his Faction Carnival next week. I wish.

In the past 365 days Fynn has endured so much and we have had to watch him suffer and pretend we are happy about it.
Numerous CT scans.
Numerous MRI scans.
6 surgeries. X2 to insert and replace a drain to release the pressure on his brain. Tumour removal – this lasted 8 and a half hours, the longest day of our lives. A permanent shunt insertion. Lumbar Punctures. Insertion of an infusoport for chemotherapy.
A subdural haematoma, which is a bleed on his brain, which he got when the clamp that secured his head during surgery failed and slammed against his skull.
He has acquired a brain injury called Cerebellar Mutism. This left him unable to even blink or swallow at first. (A baby is born with a swallow reflex). He has had to relearn how to do EVERYTHING. He may never be able to walk/run normally again. He may never be able to speak normally again.
Radiation to his brain. 6 weeks of daily radiation to his brain. Some of which was done under daily general anaesthetic.
All up he has had 29 general anaesthetics – 29!

Countless drugs, antibiotics, antifungals, pain killers, serious ones, poisonous chemotherapy. FYI the one chemo Fynn gets, to date he has had 22 doses of this beaut called Vincristine, actually has this wording on the bag. “This drug is for IV administration only. Any other method is fatal.” I shudder every single time I see that.

He has had reactions to some of these drugs.
3 blood transfusions and 3 platelet transfusions.
Countless finger pricks and needles. He has a huge needle phobia now.
Countless hours of physio therapy, speech therapy and occupational therapy.
Endless hours trawling hospital corridors.

The emotional or psychological toll this has taken on Fynn is unfathomable. We have the responsibility to give him coping tools to sustain a positive outlook on life. We are paying for private counselling for him to give the assistance we are unable to.
I am certain there is a lot I am forgetting or have just blanked out too.

Here are some random thoughts…
1. Childhood cancer is not glamorous, not that I ever thought it was, it is hideous.
2. We are stronger than we believe, because we do not have a choice.
3. We did not do anything to make this happen, we just won the crappest lottery on the planet. I did not feed my children exclusively on sugar and GM modified foods, and I personally don’t believe God chose us for this journey because we are strong.
4. I have a massive and dark sense of humour. I think it has helped me survive, but some things are just not funny. My bullshit tolerance is about 0%, give or take!
5. If you feel the need to help me out just do something. Please don’t ask me what you can do. Unless you have that magic wand to change all of this, I don’t know what you can do. You can spread the word and raise awareness about childhood cancer.
6. Even though it seems like I share a lot, there is a lot I don’t share. It is too hard to make people who are not part of this particularly horrid club understand, and often I just don’t want to talk about it.

If you are still reading – well done you for keeping at it! Thanks for supporting our family over this last year xx”

Fynn1Fynn2Fynn3Fynn4Fynn11Fynn5Fynn6Fynn7Fynn8Fynn9Fynn10

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Psyche

My very first thought as I opened my eyes this morning was that today was my scheduled 3 monthly check up at the Cancer Centre. My second thought this morning was that today was my scheduled 3 monthly check up at the Cancer Centre! And somewhere in between those two thoughts and the ensuing panic was the complete disbelief that it had been 90 days since my last visit.

I had bloods taken yesterday and am very pleased to announce that this was done without any incidents, not even a murmur of needing to use a foot! I am even more pleased to admit that the usual feeling of dread was also absent as I opened those doors – I had absolute faith that my veins would not let me down! A reminder that time does heal, even those experiences burned deep into our psyche.

Pete met me at the Cancer Centre and despite the fact that we were trying VERY hard to treat this as a totally normal, unscary visit – just walking into the building was a reminder that those psyche wounds were really only rather thinly covered by some very real and barely healed scars.

The waiting room was (sadly) full when I arrived so I found a quiet spot in the corridor and debated whether I should have that familiar comforting cup of hot chocolate as I waited to be called. Pete arrived a short time later, and despite me reassuring him that very morning that I would be TOTALLY fine to go on my own, I was very happy to see him! I had almost forgotten how scary it was to sit there on my own.

I did however lose the battle of wills against the hot chocolate, but in my defence it was a cold, well a cooler, day and I think we both needed the comfort and the sugar!

It seemed rather appropriate to our mood, sitting in the corridor, rather like naughty school children awaiting the wrath of the Principal. (Not that I know what that feels like!). And although we smiled, greeted and chatted to the staff walking past, we both finally agreed in whispers, that we REALLY didn’t like being there.

So the Dent Doctor didn’t think the sharp pains I had been experiencing in my head for the last two weeks were an indication of a brain tumour nor was the swollen “gland” in my right armpit an indication of lymphatic cancer. To his credit, he didn’t laugh, not even once.

Even after I apologised for being a tad paranoid, he smiled and reassured me by saying that at least I know my body well. Perhaps a little too well was my thought as I wiped my brow!

I had this very discussion with another survivor this week – would any pain or discomfort ever just be solved with a pill and forgotten, or would we always be held hostage by aches and pains and only ever convinced by a scan and a visit to the Oncologist that the cancer had not come back?

He declared that the spasm in my neck was probably the real cause of my brain tumour symptoms and that the swollen gland was in fact a band of tight muscle – things that could be probably be fixed with another massage (did I mention just how much I like this man!) and that I was fit and well!

We made an appointment to see him in another 90 days, and just like that, while driving out the grounds my head pains disappeared!

psyche

“My friend…care for your psyche…know thyself, for once we know ourselves, we may learn how to care for ourselves” -Socrates”
― Socrates

“Words! What power they hold. Once they have rooted in your psyche, it is difficult to escape them. Words can shape the future of a child and destroy the existence of an adult.
Words are powerful. Be careful how you use them because once you have pronounced them, you cannot remove the scar they leave behind.”
― Vashti Quiroz-Vega

“Stories are psycho-diagnostic ― they diagnose the condition of our psyches. When we watch, read or hear a story, whatever detail jumps out reflects an issue in our psyche that requires our attention.”
― Thea Euryphaessa

Ooops-a-Daisy

So yesterday saw the start of a rather unexpected dream….

But to fully explain what I actually mean, I need to take you back 18 months.

BC, I had a very different life.

I had been working from home as a Massage Therapist, an actual dream I had for over 2 decades! I used to tell my clients when they asked how I had gone from working in the recruitment industry to rubbing their feet, that I had a bit of a mid-life crisis and considering I could not afford to buy a sports car and had absolutely no inclination to having an affair – a change of career was the only real option for me!

Stepping willingly away from receiving a regular monthly pay cheque was huge for both of us, but with Pete’s unwavering belief in me and his complete support, I took the uncharacteristic leap of faith mid-way through 2012.

It was scary, it was unpredictable…. did I mention it was REALLY very scary ……..and despite all of that scariness and uncertainty, I LOVED every minute of it!

It took time to build up a client base and to do that I had to take a giant leap out of my comfort zone. I have never been able to “market” myself particularly well – and somehow I found myself talking to rooms full of strangers about the benefits of pregnancy massage!

By the time September 2013 rolled around I had built my little business into quite a little home-grown empire …OK, well maybe not by Bill Gates standards or anyone else’s for that matter, but for me this was HUGE and I felt like I was on my way to bigger and better things. And in what turned out to be true of one of life’s little ironies, I had never felt better!

So while sitting in my Doctor’s rooms listening to her tell me that the result of the biopsy was not so good, my life as I had known it, came crashing down around me. And in that particular moment I hadn’t even begun to understand all the things I would have to give up.

I sent an email to my mail list of clients just before surgery to tell them that I would be unavailable for a couple of months due to some health issues….. yip, I clearly had NO Clue!

So after surgery when I couldn’t pull up my own pants and needed physio on a weekly basis, the fear started creeping in – what if I could only get back to my massage business….horror of horrors in the New Year!?

That last bit of delusional hope was dashed a month later when we sat in the Dent Doctors office and heard that the surgery was only the beginning ….six months of chemo ….. and weeks of radiation were still ahead.

Obviously devastated, for many reasons, but the one that kept popping up in my head was who on earth would want to be massaged by a balding, nauseas, possibly radioactive, boob-less woman who could barely lift her arms? Clearly I would need to review the plans for my future- when I actually could dare to think about it…

Sanity came from an unexpected source: I had taught myself to make ribbon roses from a tutorial on YouTube earlier that year, primarily as a project to beautify a pair of plain white voile curtains I was planning to use in my new outdoor massage area.

So as I sat on my lazy boy chair (a welcome home from hospital gift from Pete) sore, sad and pretty fed up with my life, trying not to think too carefully about the months ahead…

I picked up some left over satin ribbon and automatically started folding it trying to remember all the steps in making a rose. It turned out to be good therapy: I was keeping my arms active and my brain focused on something other than my circumstances.

I had no clue at the time that the skill I learnt as a bi-product of one dream would become the focus of an entirely new one…..

So I sat, day after day turning lengths of ribbon into roses – all colours, shapes and all sizes.

And one day the inevitable question was asked, just what the HECK was I going to do with all these roses cluttering our dining room table???

Soon they became brooches securing the scarves that concealing my flat chest in the days before reconstruction. They were attached to hairbands as I cut my hair in preparation for chemo and then attached to head scarves when my hair started falling out. I was slightly obsessed about hair…..and so began the rose Alice bands! When I was able to drive, I would go out and search for anything I could accessorise with a rose!

Throughout recovery days of chemo and radiation the ideas flowed and the roses kept on coming.

Each rose I made was never quite perfect and would never look the same no matter how hard I tried to get them to match. But I also found that I could never throw out the ones that “flopped” no matter how imperfect they were; I would just need to find another way of using them.

I kinda felt sorry for the little guys, and identified a little too closely with their sad imperfections.
Surely they could be turned into something beautiful… they just needed me to think of a new way to show off their usefulness and uniqueness! And so began the experiments with cake covers and cheese grater earring holders!

The imperfect roses became the symbol of my external and internal struggles, I suppose. Creating something beautiful from a distinctly un-beautiful situation.

I started giving out my pink rose brooches to the people who helped me along my journey. The nurses at the Cancer centre, the ladies at the Radiation Bunker, my physio, my plastic surgeon and the ladies in the office who always greeted me with smiles and encouragement especially on the days when I couldn’t find things to smile about. They certainly had no idea of the real significance behind the roses, and that was ok….it was kinda hard to explain…

Life was not perfect. The goodies I made were certainly not perfect, but they were made with great love, and soon the idea of a new business began to form.

And “Ooops-a-Daisy” was born.
Décor and accessories: Uniquely imperfect and handmade with love

Pete and I went to set up my things at a local indoor market yesterday…. another HUGE step and hopefully the beginning of a new, if somewhat unexpected dream!

Ooopsadaisy
“I saw you before. All your flaws, your imperfections. Your body’s going to a lot of trouble to hide something, something inside of you. It must be very precious.”
― Shaun Hick

“There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection. To me, that is the true essence of beauty.”
― Steve Maraboli

“We are all wonderful, beautiful wrecks. That’s what connects us–that we’re all broken, all beautifully imperfect.”
― Emilio Estevez

“But life isn’t something that should be edited. Life shouldn’t be cut. The only way you’ll ever discover what it truly means to be alive and human is by sharing the full experience of what it means to be human and each blemish and freckle that comes with it.”
― Iain Thomas

“You are imperfect, permanently and inevitably flawed. And you are beautiful.”
― Amy Bloom

“Our imperfections make us unique as surely as our strengths.”
― Toni Sorenson

“There’s no need to be perfect to inspire others. Let people get inspired by how you deal with your imperfections.”
― Ziad K. Abdelnour