Is Mummy a Robot?

We’re having some interesting family conversations about where mummy is.

For a six-year-old, Noah asks some very mature and considered questions. His mind explores the various elements of; cancer, dying, death and the afterlife.

One question Noah asked me last week was; “Daddy, do you think mummy knew she was going to die?”

It’s funny you know, Elysia asked me this same question a day or two earlier and I honestly don’t know the answer. As time passes, the more I think about it, she may have known she was dying. I hope that she didn’t.

He also asked, “when was the last time I saw mummy alive?” He has such a sharp memory so I’m not sure if he legitimately couldn’t remember or he wanted to talk about it. I’m guessing the latter.

I’m so glad the kids visited Lou 48 hours before she departed. To answer the question about their last time together,  we were all able to look through the photos on my phone while Noah and Evie simultaneously peppered me with their nightly bedtime questions about their mum. Side by side in bed, huddled around the phone like it was giving us warmth, the kids could see themselves cuddling and kissing their mum one last time. They remember giving her flowers and heart-shaped stones. Very special.

Noah wants to go back to the clinic because he liked the fruit juice that they had there.

I think about Lou all day every day, while it’s often painful, I’m glad Noah does too.  He is so stoic that I’d be worried if he was attempting to block memories or if he wasn’t processing his thoughts. But with his machine gun fire of questions, I think he is continuing to unpackage the trauma.

“Dad, what do bad cancer cells look like?”

“Daddy, what do good cancer cells look like?”

“Dadda, what does a tumor look like?”

“What did mummies tumor look like?”

By now it’s well over an hour past his sleep time, but we find ourselves browsing the web looking at some interesting but also confronting material. I like that he has taken an interest in the disease itself.

Year 1 Gold (Noah’s class) do meditation most days at school, it’s a bit of a post-lunch strategy to calm the little rabbits down.  Noah’s teacher informed me on Wednesday that Noah asked her; “Mrs. Peterson, can I please think of my mum in meditation time?”

My eyes water every time I think about how brave he is. I’m waiting in the slips every day, crouched on my haunches,  elbows in, hands extended with palms open wide, ready to catch him when he starts to crumble, but he simply marches on. He’s my little hero, all 20kg’s of him.

Evie keeps me on my toes. She has been really unsettled, I’m sure its because she is confused. I always thought Noah would be unpredictable, emotional and difficult and Evie would be blasé. Noah gets emotional but mainly when he is tired. Evie is the one that’s disrupted.

Evie: “Daddy, is mummy hiding in the house? Do you think she is in Noah’s bed? Shall we have a look for her?”

Poor little poppa. She cried herself to sleep last night. The cry contained a bit more of a painful tone than her normal consistent whinge. She’s such a pretty little princess, as a male I worry that there are going to be voids that I just can’t plug.

Noah and I probably shouldn’t have laughed when Evie asked us; “Is mummy a robot?” She wasn’t offended so I guess it was ok we thought it to be funny, she was proud she had us both laughing together. As a four-year-old, she takes things so matter of fact, in such a literal manner that I feel I haven’t done the best job of explaining where their mum is.

I detail that mummy is in the stars, she’s in our hearts, she is everywhere, she’s an Angel in heaven. All too much to digest for a four-year-old, which is excusable. I’m her age to the power of ten and my head is spinning on my neck looking for answers or ideas on Lou’s whereabouts and how the fuck she got there.

Evie: “Is mummy in that big plane up there?”
Me: “I don’t think so, why do you think she’s on a plane?”
Evie: “Because planes are up in the stars where mummy is”
Me: “Well, if she’s on that plane puffin, she’s right up the front in the nose of it, going somewhere very special.”

Evie: “Is mummy in our stomachs?”
Me: “What? what do you mean?”
Evie: If mummy is in our hearts then why isn’t she in our stomachs?”
Me: “Hmmmm” (daddy thinks for a minute before trying to explain this one)

Evie: “Someone can’t be everywhere if they’re dead daddy”
Me: (Digs himself another hole trying to answer this question with meaning)

Evie: “Is mummy sleeping?
Me: “I don’t think so, she could be.”
Evie: Very assertive and quick to respond…………”If she’s sleeping she’s not dead.”

I hope they continue to ask questions, even if they are tricky and catch me off guard.

It’s Noah’s birthday on Thursday, one of the first big milestones as a family of three. Once again, the kids will no doubt surprise me with their mental toughness and ability to get through the day. A special day that would have traditionally been planned managed and made perfect by their mum.

The Five Stages Of Grief, It’s All New To Me…….

Do I know how to handle the death of a loved one? Nup. I have no idea.

I’ve found myself googling “grief’ and related keywords a few times in the past week. I’m not sure if I’m looking to get a heads up on what type of feelings are around the corner or I’m attempting to source a playbook on how to navigate the coming months.

There is a bunch of information online for the five stages of grief model; with the stages being denial, anger, bargaining, depression and acceptance.

I observed Louise going through these stages several times during different periods of her cancer journey. Every time she was delivered bad news she went through a grieving process for both her own life and her children’s welfare.

It’s good to know there is a plethora of information indicating that the experience of grief is highly individualised and not well captured by their fixed or linear suggested sequence. “Some of the five stages may be absent, their order may be jumbled, certain experiences may rise to prominence more than once and the progression of stages may stall. ”

I’m not even a month into my grieving journey, so it’s hard to even understand how I am feeling sometimes.

While I still shake my head multiple times a day, somewhat in disbelief, I don’t think I’m in DENIAL. I was by Lou’s side as she slowly regressed in health for twenty months and while her final week caught us off guard, I was aware of the consequences of her killer disease. I guess for me its more of a meaningless feeling that overwhelms you with the realisation she’s not coming back, ever.

I would probably say I’m still in some form of shock. I think everyone is. The result of this is not being able to think straight. I seem to be dragging my feet for common daily tasks normally done with enthusiasm. While I understand it, I guess I still don’t fully accept it which is obviously needed for the healing process. For me, the fighting adrenalin has stopped, the dust has settled and everything is an effort.

ANGER isn’t something I have felt. Not yet anyway. Noah gets angry so I think he is more associated with this stage at the current time. I don’t feel deserted or abandoned in any way whatsoever. I don’t think I suppress my anger either. I’ll be interested to observe my own behaviour and see if this is a stage I encounter. It’s not in my nature unless I’ve had a thousand rum and cokes so maybe this is a phase I steer around with no ill effect?

I feel I did my BARGAINING while Lou was alive. I am not religious so  I didn’t bargain with a god in any way i.e  “Please God, I will always promise to do X if you let my wife live”  or “God if you do this for me I will make sure I do this.” I think I once prayed like this at school……….

The fact that we tirelessly worked to find solutions for Lou will help my grieving process. It feels like I did my bargaining with the medical professionals, process and medical technology while she was still here. Sure in hindsight I would have made some different choices but I don’t have too many “if only” moments. I don’t have any guilt. I don’t feel that I am remaining in the past in any way although I would prefer to be there.

DEPRESSION. Hmmm. I am very sad, that’s both expected and understandable. I’m not depressed. Although this is a stage I’m most concerned about, depression can come thick and fast. If the black dog starts nipping at your heals it’s a rut hard to get out of.

I’ve been depressed before but not for well over a decade or more. I guess I have to be prepared for depression and do what I can to avoid it without packaging feelings up to fester.

It’s important for me to remember that depression is not a sign of mental illness. It can sometimes simply be an appropriate response to a great loss.

I still don’t think that Lou’s departure is yet to fully settle in my soul. The realization that Louise didn’t get better and is not coming back is understandably depressing. So while I don’t want to get depressed I need to understand that if grief is a process of healing, then depression may well be one of the many necessary steps along the way. I think I can avoid it with a strategy I’m yet to formulate.

ACCEPTANCE is an interesting one for me. I will never feel ok about the loss of Lou. At the moment I have an open wound in my heart, soul and mind. Open wounds become scars and scars are visible, sensitve and permanent.

This stage is more about accepting the reality that the woman I was meant to get old and wrinkly with is physically gone, this is the permanent reality. I will never like this reality, none of us will, but I guess we will eventually accept it. And then we will eventually learn to live with it.

Right now I want to maintain life as it was a month ago, even if it meant fighting the losing war we became privy too. This may be a little selfish as Lou had fought enough. Fighting had become our life and I wish we were still fighting.  In saying that, I do feel some pressure has been released now that Louise is at peace. All part of the Juxtaposition of thoughts I guess……….

The world is different now.

I can’t maintain the past.

I have to readjust.

I am still very much in the infancy of accepting new feelings, trying to understand Noah, Evie and my needs and how to move forward so we are as healthy in the mind as can be.

It’s not fun being sad. I don’t want to drag my feet around for too long as I want to continue to succeed in both family, work and social life. I want to live again, but I am aware I have to give grief its time.

I know I am a closed book emotionally but I am a single parent now, a mum and a dad. It’s important to understand my emotions, take care of me and accept support from others.

Every person goes through these phases I touched on in their own way. I am pretty sure we may go back and forth between them, or skip one or more stages altogether. I guess we have to expect the unexpected, strap ourselves in for the ride and understand that as time passes the pain will dampen.


A nice acoustic version of Forever Young for your troubles…….

Evie Talks About You A Lot, She doesn’t Fully Understand The “forever” Element

Louise DeCelis and Evie at home

Three weeks. That’s how long you’ve been gone. A drop in the ocean of time. Why does it feel like so much longer?

Yesterday was a little tough for me. I got a little emotional when I dropped Noah off at school. My sadness was triggered simply because he’s so brave. He gives me a hug, says “I love you dadda” and marches off confidently, with his enormous backpack on his tiny little adorable body.  Turning only once to wave, barely making eye contact. I watch him walk until he’s disappeared over the top of the ten stairs he has to climb, a small mountain for his skinny little legs. I simply watch in adoration as he shows me how it’s done.

Noah is simply getting on with it as his mum taught him.

I did dress him in his school uniform when he was meant to be in sports. He was quick to tell me when I collected him that “mummy would have remembered.” The truth is, you were worse at remembering those little things than me. I didn’t tell him this, it’s best he remembers you perfect in every way.

I was just a bit uneasy for the rest of the day. I get this sick feeling that comes and goes, it doesn’t last long but it’s unsettling. It’s like you’ve patted your back pocket with your hand and realised you’ve left your phone and wallet on the bus, causing the pit of your stomach to fall through your pelvis.

I’ve been in the office this week. Down on motivation but chipping through it.

Evie talks about you a lot. She doesn’t fully understand the “forever” element of your absence. I miss telling you the funny things she says each day. She still puts all her words in the blender before she speaks. So funny.

Something I don’t understand is that you would think getting your shoes on the wrong feet would be a 50/50 mistake. Little Poppa must be close to a 100% strike rate of putting her shoes on the opposite feet.

She wants to know if you “are going to be dead next week too?” Noah and Evie have traded contentious words about when you’re coming back. With Evie not accepting or simply understanding the truth. I still can’t get my head around it so it makes sense Evie is baffled.

The last selfie on your phone with Evie, before we left for Germany……

I was talking about marriage and about going to America to take some of your ashes to where “I asked mummy to marry me” and  Evie was telling me that she wants to marry you.  It was her way of saying that she wants to be with you forever. I was explaining that you are in her heart now but she said that wasn’t possible because you “are in a box.” It’s all very amusing and melancholy at the same time.

If it wasn’t for Noah and Evie I think I’d be struggling. They ensure I put one foot in front of other, they’re just so resilient those little rabbits. They preoccupy my mind and keep me motivated. Most importantly they make me smile and laugh.

I struggled to sleep last night which is an issue I’m normally on top of. I’m not bounding out of bed in the morning when it’s still dark like I’m accustomed to either. It’ll sort itself out in time when I can get the work, rest, exercise and play to harmonise a little more efficiently.

Anyway, just thought I’d say hi.

I heard this song on Spotify this morning, a great cover of “Stay With Me” by Angus and Julia Stone.  They have some nice song versions. I am listening to them now.

Who are you bossing around up there?

XXOO

Louise and Evie in Germany apartment on the lounge
The last selfie with Evie, in Germany. You smiled for the kids but you were in pain and very unhappy – I think Evie took this pic…..she misses you.

A Well Deserved Send-Off For Lou Lou

Louise DeCelis loved yellow....

Lou’s Funeral, the celebration of her life,  was a great day. It feels strange to write those words but ‘it is what it is.’ Sending her off into the sunset with family and friends, side-by-side in puddles of tears, to bid her farewell is a mandatory part of the process, and we did it well.

The day was somewhat of a blur but I could feel the emotion and love defuse through all that attended. I had an emotional outpour just before the service started, which made me feel at ease and relaxed for the remainder of the day. I only learned to cry a few weeks back and I am a big advocate. Crying gets the thumbs up from me!

I’m not exactly sure what made Lou upset during the service causing her to blow up the AV and disrupt the PA system as it was my turn to speak.  I can only assume I had a few unapproved photos in the slideshow ready to roll. She can be quite loud and hostile right? I miss being yelled out.

I don’t really know where to go from here. It doesn’t feel right that this should be the end of Lou’s blog now that she is gone. Posting about a personal journey is something I would have never done if she wasn’t the catalyst to motivate me to write.

I think I’ll attempt to publish the occasional post about being a single parent, about memories of Lou and how my little rug-rats are fairing as they embark on life without their mum. I’ve found sharing our story therapeutic so there is no reason to stop.

 

 

 

 

“Our Favourite Little Town” – Telluride Colorado

Louise and I's favourite little town.

So I mentioned in Lou’s eulogy on the exact day of her funeral – eight years ago, almost to the hour, I asked her to marry me. An amazing coincidence.

I only discovered this fact when I thought it would be fitting to spread some of Lou’s ashes in the location I proposed. I decided to check the date with the aim of taking the kids to this special spot on the proposal anniversary,  and conduct some kind of “I love you mummy” ceremony.

It’s actually quite amusing that I now have to start checking and taking note of dates surrounding Lou. You might find it strange but Louise I and never celebrated a relationship anniversary. Not a relationship inception date (that was a little blurred so it can be forgiven), not an engagement or even a wedding anniversary date. Not once. It wasn’t a one-sided thing either. It was simply something that suited us.

Anyway, for those that don’t know, I asked Louise to marry me through an article/poem published in the local Telluride paper.

telluride-daily-planet-january-26-2011
Telluride Daily Planet Publication; January 26 2011 (Mountain Standard Time; UTC-7)

I re-scheduled this post so it went out at both the proposal time and her funeral date/time, simultaneously. Here is the article/poem:


For the inexperienced, it’s like a vague slice of untouchable dreamy mystery, hard to believe places like this still exist, frozen in time, but embedded with so much history.

From the *Utes who were abruptly told of their fate, when gold was discovered in these grounds, back in 1858. A place where Butch Cassidy for his head placed a bounty, into the hills making chase, the sheriff of San Miguel County.

Silver prices crashed, mining issues and war, brought this little town to its knees a place it had never been before. It wasn’t an option that this iconic community lay dead, the best yet to come in its years still ahead, a tenacious township that never-say-never, revival was to come in the shape of the weather.

The mineral from the heavens was always here, the white fluffy gold was trying to tell us something, perpetually coming back, year after year. This above ground commodity was the inception of revival, inhabitants would utilize this invaluable resource for the town’s new survival.

So the hippies hit the slopes, the resort was open in 1972, although way before our time, it was the catalyst that brought us here, both me and you. This poem also, will become antiquity, buried amongst this infectious, rich, fascinating history.

Now the 21st century, things have changed but still feel the same, peering back through the years loving every bit of what this town has become. Our favourite place, Colorado South West, aspen trees, exposed redrock, wildlife aplenty, it’s simply the best!

While on one knee I do get down, stay tuned to this rhetoric, because first, more about our favourite little town. A family environment, rugged-up children outside find it safe to play, on the streets pedestrians, have the courteous right away. Such an active contagious culture, where people are fit’n-healthy, a preponderance of positive energy, locals nothing but friendly.

It’s on these dramatic snow-covered hills, the place we get our adrenaline thrills, simply no better state of ultimate being, mind free of anything but, for the moment and addiction, this thing we call skiing.

An annual 300 inches of powder-fun, 300 bluebird days the sky filled with the sun, where under lift nine, it’s always game on, every day you will hear, “woo hoo, oh yeaaah *John!”

Every glimpse a postcard picture, in this sleepy little town, no other place could ever look prettier, the frozen ice crystals, they come pouring down, blanketing this sacred hallowed ground.

To this location we are so much attached, everything about it evokes a feeling that is simply unmatched, where kindness and courtesy transcends, it is in this place that we have established lifelong friends.

The Chop House, The Buck, other favourites like Merle’s Brown Bag, all the little things, that to our friends at home we like to brag. It is always hard to leave the Rockies of Colorado, only able to take home memories, to reminisce and speak of our favourite little town, with so much bravado.

Don’t get me wrong, this quaint destination is not always petite and pretty, this town loves to party as much as any big city. We have had some cracker times full of intoxicating inebriation, for we come through our favourite town its one huge celebration.

We are in many ways different, certain things evoke a disparate connect, for instance, you prefer a cruisy carve, further to the west, your favourite run, ‘Prospect’. Where I’m in my element, on the Gold Hill chutes, the mountains ever so steep; but it’s in these words of suggestion that I take a bigger leap.

It’s the dissimilar pieces in our exclusive lives that join us together, so time to commit, and pledge to take care of you forever. I love you all the flakes that cover the Western San Juan, although I never doubted it, you are officially now the one.

There will always be challenges that try to divide, but I have no uncertainty we will conquer, by walking together, step by step, side by side.

So it’s in this setting that I think it’s fitting, do you need to reposition? Perhaps you should be sitting; all I need is both ears a brief moment to listen, for it’s today, right here, right now I have an exciting proposition. If you treasure something, then it should be kept, I am expecting a yes here, so you better accept.

Without hesitation, I propose this question, in this magic place, our favourite destination, I shout out loud, will you be my companion? It is echoed throughout this surrounding box canyon.

In our favourite little town, Louise Maree DeCelis, I do confide, I am asking you to be my bride, right here, right now, in Telluride!

Telluride proposal poem, Dominic Byrne to Louise DeCelis
The proposal poem in the Telluride Daily Planet

*The “Utes” are the oldest residents of Colorado, inhabiting the mountains and vast areas of Colorado, Utah, Wyoming, Eastern Nevada, Northern New Mexico and Arizona.

**”Oh yeah John” is a guy named John Roth. He moved to Telluride in 1972, the first year the Telluride Ski Resort’s lifts ran, and has skied 125 days per season ever since. He always ski’s under chair nine so it’s not uncommon to hear “oh yeah john” all day every day in the winter……. He’s a good guy too.

Louise DeCelis on the day we got engaged.
A few minutes after I asked Louise to marry me. The proposal location was at the junction of two runs; ‘See Forever” and ‘Plunge.” Fitting don’t you think?

Hi Lou, You’ve Been Gone A Week Already……

Louise and her family

Dear Lou,

It’s been a week since you escaped from your pain and suffering.

I’ve attempted to write a post in the last few days but haven’t had the energy. It might easier if I write a short letter,  just to let you know that we miss you.

I took a photo of Noah at the bike track yesterday while he was supervising a mate changed his flat tyre. I stupidly went to send you the photo 🤦🏽‍♂️😞. I sent it to Elysia instead as she has enthusiastically taken the reins of being Noah and Evie’s mum.

appin-mx-bike-tyre-change
“Good job Reg, do you need a drink or something?” NB

Evie has an ear infection, poor little Poppa. She’s been crying for you 😢. She can’t swim for over a week, that will be tough since she thinks she is a little mermaid. 🧜‍♀️

We’ve been home for five days already. We got out of Germany ASAP. I know you were keen for the kids to get home and be kids.

I’ve had to do some strange things in the last few days. I wrote your obituary on Friday for Saturday’s SMH, I made sure it stood out amongst the others. J-Boy and I selected a coffin and cremation location the day before that. All of these surreal experiences definitely bring home the reality. Your funeral is on Friday. Not sure what you want to wear, I’ll get your mum to help me select something. 👗

Noah asked if he can have your phone, credit card and any money in your wallet. 😂😂😂

We miss you lots and lots. I find this whole situation dreamlike most days. 🤯

I’m jammed in between the kids right now, we’re all in bed on our devices 😬. It’s 8:15 am, Noah is about to get picked up for a basketball camp so I better get him dressed. I thought the kids might fight for your side of the bed each night but they have been amazing for me. 🤗

We miss you, we love you. 💗

xx

The way Noah looked at his mum
Look at the love that poured out of Noah when he looked at his mummy….

The Celebration Of Lou’s Life Will Be On Friday The 25th

FUNERAL DETAILS:

Date: Friday the 25th Of January

Time: 10:30 am

Location: St Mary’s, 264 Miller Street, North Sydney

CELEBRATION OF LOU:

Following the service, The Greenwood Hotel, North Sydney


Dress as you please to the funeral. Don’t feel you have to wear traditional black. Lou always looked stylish, she was always in colour.  Feel free to be stylish and in colour…..

Today Our Hearts Break

Beautiful Louise

Today our hearts break, some into shattered irreparable pieces.

We’ll live another day but forever with a void gauged from our hearts.

You’re at peace now Beautiful Warrior.

Watch over Noah and Evie wherever you rest. I will ensure they continue to grow into special people, just like their “mumma”.

I said on the day we got engaged and on our wedding day; “I love you all the snowflakes in the western San Juan.” Just so you know, it was a metaphor for the world.

I love you all the snowflakes in the world.

Rest now Little Lou Lou.

Sisters United

Louise DeCelis and Elysia McConkey at balmoral beach

It was great to see Elysia arrive safely this morning. I stayed in bed with Lou until Elysia’s taxi dropped her off at the clinic. It would have been a beautiful commute with fresh snow in the villages and farmland between Frankfurt airport and Bad Salzhausen.

I hold Lou’s and all night. (she would not let me do that if she was well, she likes her sleep-space waaay too much. She actually builds a barrier with pillows between her, myself and the kids……LOL)

Lou was restless from about 2:45 am until about 4 am. As she can’t communicate I’m not sure why she was uneasy. It just feels like ‘fight’ to me.  The Princess Warrior – Mrs Perpetual Motion, punching-on until the bell.

While Louise was agitated, attempting to open her eyes and speak, I told her maybe 10 times; “Your sister Elysia will be here in a few hours, she loves you, I love you, Noah and Evie love you, your mum and dad love you, your friends and village love you.”

Elysia is holding her hand now. They can spend some quality time together today. Her parents are there too, like every other day. Together as a family, like the previous 40 years.

I’m now spending time with the kids.

 

Noah And Evie Came In Today To Tell Their “Mumma” They Love Her

Some flowers evie picked for her "mumma"

I brought Noah and Evie in to cuddle and kiss their mum today. I’d like to say it wasn’t a facilitated goodbye but while we hope for a miracle, I have to prepare for the worst. I was undecided on whether they should see her.

Lou fell into a deep sleep at 1:30 am this morning and has remained in dreamland for 15 hours. She slept through her bed-bath, sheet change and catheter insertion. She’s unresponsive to any conversation but seems to have occasional awareness of peoples presence. Her breathing has slowed and she pauses for long periods before the next inhale. She looks peaceful right now. Observing her this minute, as the room gets dark by the sun going down, my thoughts are distracted, I want her to sit up and say, “what’s up Byrne? what should we do now? Grab the kids, let’s go…..”

Lou had some fleeting moments of consciousness when her babies were here. Unfortunately, she didn’t acknowledge Noah or Evie though. Their presence did stimulate some movement, she momentarily opened her eyes but seemed to look through the children. I don’t know what was going through the kid’s heads at this time. Evie wanted to cuddle me and Noah seemed distracted by my sister’s emotional state. Their minds were busy with thought, which I hope wasn’t stress.

Words can’t describe how much Noah loves his mum

Those two little monkeys are so special.

Evie picked two red flowers before we left the apartment, one for her and one for Noah to give their mum. They are in a glass beside her bed now, next to some polished stone love hearts the kids purchased for Lou from a vending machine at the Frankfurt pool a few weeks back.

I’m glad I brought the kids to the clinic. They both kissed “Mumma” and told her that they loved her, many times each. They don’t know she’s is on the precipice of life. Actually, Noah may be aware now that I think about it, not much gets past that kid.

Evie with a red rose in her hand for mummy

Noah and Evie’s life is potentially made more difficult from this point forward. I know I have the ability to shape them into the best they can be but their lives will be very different if we don’t get a miracle.

I’m playing Lou some music right now. I’m taking one for the team by not blasting my hip hop 😉,  I’m playing her some of her favourite tunes, which I like anyway. I’ve always liked her music. It’s amazing how powerful lyrics are when you are in a high emotional state. We’re listening to Vance Joy, all his words are smacking me in the face as I attempt to type this post…….the two songs that have played since I started typing………

‘Fire and the flood’ lyrics…..

Since we met I feel a lightness in my step
You’re miles away but I still feel you
Anywhere I go there you are
Anywhere I go there you are
Late at night when you can’t fall asleep
I’ll be lying right beside you counting sheep
Anywhere I go there you are…….

‘Riptide’ Lyrics….

I just wanna, I just wanna know
If you’re gonna, if you’re gonna stay
I just gotta, I just gotta know
I can’t have it, I can’t have it any other way……

Noah and his mum, such a bond.

We were meant to see Vance in Brisbane with Jon and Elysia a few months back but Lou spent the afternoon in the hospital. Lou purchased Elysia and John tickets in appreciation for all their help and support they have given us. It was a pre-booked ‘beating cancer’ weekend away.

Lou loves music, live music particularly.

The kids would be back in the apartment with my mum and sister now, they all went back on the train from the clinic. I’m lucky mum and Leish are here to help. I didn’t know how much we would rely on them before they arrived last week. It allows Les and Lynda to be present with Lou as much as possible.

Evie and my hand holding mums

I hope my lil munchkins heads are clear tonight and they sleep fun adolescent dreams. It’s important that I can let them know at any proceeding moment in time that they told their mum  they loved her and said goodbye.

Louise’s bloods have improved today, her vitals are strong but her liver enzymes are increasing. She is essentially in a liver coma or hepatic encephalopathy. This comes with a decline in brain function because the liver can’t adequately remove toxins from the blood.

The world can be really cruel. The end, whether we can extend it or not, is really horrible.

I just love the way Noah says “mumma” – with an extended aaa at the end….

Her best friend (and sister) will arrive on Friday morning. If Lou does leave us soon, I hope she clings-on to be present with Elysia. They have a sister bond like no other.

I do wish that Louise was at home right now but I have no regrets being here in Germany, we knew the risks involved. The tide turned so fast though. On Thursday we were preparing for the kids to go back early for school, thinking we could follow a few weeks later. Crazy.

I’m going to slide in behind Lou now and give her a cuddle and tell her that I and her village love her very much.

Dixie Chicks now playing…….”wide open spaces”……she loves this song.

Evie needing a cuddle from dad as she’s a little confused

I Cried Today

Louise and Dom on Evie's fourth birthday party

Someone asked me a few months ago, “when was the last time you cried?” I couldn’t recall. I’ve thought about it a lot and why it’s been so long. Not days, not months, perhaps decades. I’m not proud of it, I think it’s a little strange.

The last time I recall tears on my face were moments of victory, not sorrow.  Winning an under 21 world cup in South Africa, a world Australian sevens championship in Paris, even a schoolboy rugby premiership in my final year of school. All that effort, the months and months of perseverance, pain and grit, paying off in ultimate reward.  The top step on the podium.  These vivid memories of emotion for me are in the 1990s.  A long time ago. The only visible emotion I recall since then is the birth of my precious babies.

Noah, Louise, Evie and dom in Evies fourth birthday party

I haven’t cried throughout Lou’s cancer-rollercoaster, a cruel roller coaster where the tracks only descend into further depths of anguish. Louise has received perpetual bad news, week after week, and I haven’t felt the need to shed a tear.

In the last few months, I’ve envisaged tears, but in the event of a doctor informing us of a victory. This conversation seems to move further from our reach. I’ve always been so optimistic about Lou’s battle, she’s a warrior and warriors fight to the end and I’ve always anticipated the end is Lou on top of her podium. Even if it took years which I accepted as the reality.

I had no team success in club rugby. In fact, nine years of first grade and I never played in a grand final, semi-final or playoff game. I always thought my team could win any game on any given day though, always. Is this unrealistic optimism? Maybe. I don’t think so.

It was this ambitious thinking that would win us unlikely games, even against the best of the competition. At those moments in a game, well into the second half, down by 20 points, some of our own supporters already departed. The fight drained from teammates faces, you could see the loss-acceptance in their eyes. I still thought we could win.

The Byrne family on Evies fourth birthday

I would do anything to be the catalyst for turning the tide.  An intercept, line break, a damaging tackle, a try against all odds to close the deficit and push the optimism back into my player’s faces. I remember trying so hard. For every minute of every game.

I cried today.

A combination of seeing Lou so broken and hearing her doctor say that her situation has become extremely serious, deflated my confidence or even idealism of how this war was going to play out.   There is nothing I can do to shift the outcome of this game. With Lou in a delirious state, she hasn’t got the current mental or physical capacity to fight right now.

I’ve always thought Louise could win.

Lou has tried so hard. For the 600 odd days, she’s been aware of cancer in her body, she has given it her all. A disease doing everything in its power to take her from this world, she’s done everything asked of her, and more. Lou has tried to turn the tied and we’ve attempted everything in our control to help her.

les, noah, louise, lynda , dominic and evie, on evies fourth birthday party

Louise’s platelets keep dropping, even after blood transfusions. Physically her body isn’t working for her. She can’t walk alone. Her doctor said she has hypercalcemia. He referenced an “exploding tumour” due to her LDH levels dropping (which I think means the tumour growth and potency is rising uncontrollably).  Her haemoglobin is falling so oxygen isn’t moving around the body the way she needs it. Her body is failing to make the bone marrow needed to recover for any form or treatment. All of these issues are improbable to recoup from.

“It would take a miracle to turn things around.”

I feel so helpless. I want to turn the tide of this game. I want to cry in victory. I don’t want to tell Noah and Evie their mum didn’t win. I don’t want tears today.

Louise DeCelis and all the young ones at the table on Evies fourth birthday

Happy New Year To Lou’s Precious Village

Happy New Year to Lou’s essential supporters. 2018 was a challenge for us. 2019 will not be any easier, we know that.  We’re a long way from the summit, the air is thin and our packs are heavy. We’ll keep trudging with our eye on the summit and your support in our hearts.

We hope your hard work materialises your own dreams, this year and the next.

Much Love,

The De-Byrnes

Some fireworks from Noah for your trouble……

26 Days In Germany

Louise getting a blood transfusion in the Frankfurt University Hospital

We’re closing in on a month in Germany, I’m honestly not sure if the time has gone fast or slow. Being in a foreign country, a place I’ve never previously visited, a place with much to do and see but it’s somewhat of a blur.

On occasions, you get a minute to appreciate some architecture, heritage, the landscape or some history but mostly you live in a distracted space consumed by the reason you’re here.

The Good: Lou’s health is the best it’s been since arrival. She’s been out of the apartment for small adventures every day since Wednesday. She’s been eating too which is essential. Her brain function and memory have improved out of sight from a week ago.

The Bad: The fluid is building in the chest again. She’s scheduled to have it removed on Wednesday afternoon. Until we get on top of the liver tumours, it’s an issue that will continue to haunt.

The Ugly: The pain. Lou’s got pain in her liver and back. Pain is a constant reminder of the nightmare you are trying to get a reprieve from.

Despite the good, bad and ugly, we’re always determined to make sure the kids are comfortable.  Lynda, Les, Lou and myself all work hard to ensure they’re happy and they are. Noah and Evie are far from their own home, cousins and friends but they are being champions. I’m very proud.

Today we decorated our Christmas tree, it’s an absolute monster of a tree and perfect in stature.

Lou has a big week this week with the other half of the liver scheduled for local chemo/TASE on Friday. Progress scans will also detail where we’re at.

Thank You Thank You Thank You

If YOU donated $1 or $1000, if YOU purchased a book for $50 or successfully bid $10, 000 on the Yacht, the gratitude from Lou and her family is as immense.

As mentioned in the auction booklet, EVERYONE’S contribution is a true testament that the whole is greater than the sum of its parts. Believing As One. Stronger As One. Succeeding As One.

There was one single detail that would have improved the night and that would have been the presence of Lou. None the less, the pressure cooker of love was felt across the oceans and into Europe, buoying Lou when she’s needed it most.

Louise and I both received numerous messages mentioning the energy that was present in the Greenwood on Thursday night. The glimpses we saw of the crowd streamed through Jon’s phone was astounding. Simply amazing.

Thank YOU so much for attending the party. For knowing that Lou wasn’t going to attend but still being there with bells on. YOUR friendship, the respect YOU have for her determined battle, YOUR unwavering support will continue to be the nucleus that moves her toward the possibility of remission. Thank YOU.

YOU have afforded Lou to be in Germany, with her family, to receive treatment options not available at home. YOU are giving her the best chance of winning and helping her achieve her biggest goal, to be a mum.

THANK YOU, THANK YOU, THANK YOU!

A special thanks for contributing to the event’s production:

  • Elysia McConkey: Coordination and ongoing involvement
  • Ginny + JulesTimmins: Managing the very successful auction and its 300 items
  • Brigitta De Laet: organising auction items
  • Judy Smart: Helping acquire multiple items
  • Michaela Francis: Finance
  • Nikki Hodgman: Managing the physical event
  • Nicole Watts: Event collateral design
  • Jon McConkey: Being a great MC
  • Rob Ward: Auctioneer
  • Adam Khamis: Videos production
  • Damien G from Hire Intelligence: 50% of screens and equipment
  • Anthony Reed:  FOC Install and pack down of all screens and AV
  • Lincoln Baker and Alex Taylor: For spinning decks and making tunes
  • Wilso: The Greenwood

I’ve taken the liberty of one final reciprocal thank you, passed on from YOU to Lou; thank you for keeping up the fight. Thank you for maintaining the rage, for amazing your village with your strength, courage, tenacity, grit and determination to keep punching while taking heavy blows. For putting one foot in front of the other when all the forces are trying to drag you down.

Thank you for being something that Noah and Evie,  your village and the world will forever be proud of. Everyone knows that you are really struggling right now but keep that spirit burning, draw upon the village’s energy to do so.

The village loves you and the world needs you for many days more.

Danke Schoen

Guten Morgan

It’s only 8pm in Frankfurt but the kids and Lou have been out for an hour. It’s blissfully quiet. Just that very faint hotel murmur, humming somewhere unidentifiable in the background.

I’d be lying if I said I didn’t want to be waking in my own home right now, getting Noah dressed in his budgies so he can dominate the flags at nippers. Then rushing home to sneak off to the MX track to spin a few laps. Returning for one of McConkey’s prawn paster Sunday specials.

I’m happy here though. The kids have settled in and have been sleeping to the central European standard clocks and not their own messed up time that was causing me some torture.

We’ve sold 397 tickets to Lou’s event, amazing really. Do you think we can get to 500 in ten days time? If you haven’t purchased a ticket and live near Sydney, pull the trigger. “Chk Chk Boom” – Clare Werbeloff May 2009

Lou and I are obviously not going to make her very own party. There are some positives in this.  If Lou was home, she’d be under self-imposed pressure to attend. If the party was on any of the last four or five Thursday’s. I dare say she wouldn’t have made it. Being a few kilometres from the Greenwood, in bed, would have upset her.

Lou would have wanted to speak to the audience also. This would have been an unneeded burden. Her anxiety from certain medications along with the constant fear that comes with an “incurable disease” may have been too much. Being in Germany has removed her from any planning and event pressure. She will be sad she’s not there. My dream is to have a remission party that she can dance at, in full health.

We know you will party and party hard on her behalf. As I have mentioned, YOU, are the reason we are here in Deutschland.

Lou is really struggling right now, physically and mentally. She’s in a rut proving difficult to get out of. I documented a brief post with some detail here.

I managed a quick trip to the zoo with the kids on Thursday, It was fun but nothing on Taronga. Noah and I hit the ice together this morning (wow, that doesn’t sound right), I’d prefer to be putting in some turns on some skis but a skate is pretty fun.

Evie Byrne at the Frankfurt Zoo, easting an ice block when it's about 3 degrees.
Evie eating an ice block, not my choice of snack at 4 degrees…..
Noah Byrne at the zoo in Frankfurt Germany
Noah and one of his new buddies.
Noah Byrne and the Frankfurt Ice Skating Park
Noah’s little penguin helping with some stability on the ice
Evie and Noah Byrne on the way to the indoor pool
Just so you know, I don’t dress Evie like this when its 6pm and zero degrees. It’s just how she rolls.

It’s amazing how much you can love your own children. A limitless level of some sort. xx

 

Deutschland Update

It was a very long journey door-to-door. Lou got here as good as we’d hoped and the kids were absolute champions. I couldn’t have asked for more.

We’ve been here for three days. She’s had one targeted treatment session on the liver with another scheduled for Thursday.

She starts some full body treatment today as well.

Lou isn’t feeling that well but she’s here, the family is here and we are doing all we can to get back some control.

Fick Krebs!

Always and forever I’ll be your Mumma XoX

Heart melting over this drawing Noah gave me today. It’s mummy’s cancer battle. Noah tells me the good cells outnumber the bad cells 10 to one and they win!!! He took me through this very detailed battle plan and it sounds like a winner to me!! The three large colored circles are the cancer cells, the rest are goodies.

I can’t express enough how important telling Noah the truth has been. Yes, he is scared, yes he is thinking about it and knows there may be an unthinkable outcome. But he is thinking about it and processing it openly with us. Instead of knowing something bad is happening but doesn’t know what and keeping it inside. I have disappeared to hospitals and doctors appointments non-stop for the last few months but he knows I am safe and being looked after, so he doesn’t worry. His protective care for his sister has multiplied and it’s beautiful to watch.

He has always been an emotional, loving, expressive little guy and right now he is shining so bright. I encourage you all to talk to your kids, don’t hide things that affect them. Answer their questions. Sickness and death are imminent for all of us, and sometimes it doesn’t go in the order of oldest to youngest with regards to who’s going to die when (which is how Noah had it all worked out).

And the other reason is that now Noah and I talk about it, and it makes me feel so good to have his support. Sometimes you need a five-year-old best friend. And I scored with the best of the best. Love you so much it hurts Nono. Always and forever I’ll be your Mumma XoX

Family cuddle

Help

Dear family and friends, the time has come for us to ask for your help.

The community that you have created around us is phenomenal. It’s nurturing, energising, committed, sympathetic, and full of an immeasurable amount of love. It’s more than we could have ever hoped for. Having this village behind us has carried us this far. And I hope the tone that’s been set for our support carries over to any family in the community that needs help in the coming years.

But today I want to talk about my family. And I want to ask for your help. Help with a fundraiser to generate the funds required to afford the treatments I need. And for my family to live comfortably with me, where ever in the world we land for treatment.

For us now the stakes couldn’t be any higher. I have aggressive metastatic Cancer moving through my body. My doctors define it as Stage four and terminal. Soon it could impair my liver function.

Terminal is just not something we will lay down and accept, however, the treatment options are limited and overseas treatment will likely hold the key. We have sought out the best international doctors and clinics who specialise in my type of cancer. We await a few more test results before we can make a call on which way we go. But the paths are very much the same. And they all come with a very high price for life.

We need to stop this cancer from spreading any further and we need to move fast. One liver lesion alone doubled in size in just 6 weeks and new lesions were detected. Terrifying.

I could live well with the current cancer in my body for many years as long as there is no growth or new lesions. However, to date we have not had that result from any of the five treatments we’ve tried.. and are now onto the sixth. We need a multi-disciplined approach to hit this abominable disease from all sides.

We are creating a huge fundraiser event with both a live and silent auction on Dec 6th @ 6pm at The Greenwood North Sydney. The auction items are flowing in and are blowing me away. We hope the night to be a big celebration of our village, a boost to our morale, and a night to remember.

So why do we need your help?

Having cancer as a mum hits you in a place so deep, so raw and so terrifying that it’s impossible to describe. What i want most is to see my babies grow up and to know they are not suffering the loss of their mum. Evie is 4, and Noah’s nearly 6. The thought of not being there for them growing up is a place i try not to imagine. I want to see what beautiful people they become.  I worry they won’t remember me. They have been through so much in the last year but still they are are so brave, always smiling, always loving, always silly. They haven’t lost their innocence to cancer yet and i hope they never have to.

My disease is currently incurable but treatable and the reality is until they find a cure, we will be forever focused on treatment and survival. They predict a cure will be found within about five years, so we’re going to fight like hell, one day at a time, for 1825 days (five years)and keep me alive.

Money is always a massive worry. Money is a big worry for most families without throwing the cost of cancer into the thought blender. Dom and i built a great business that had several years of doubling annual growth. We never missed mortgage payments, we travelled the world. However, my cancer off the back of Dom’s bike accident has completely crippled us. We’ve been in this fight for 17 months now and the truth is, if it wasn’t for family support we’d be beggars on the street. For that, we are extremely fortunate and downright lucky, however, it is not sustainable.

It’s a strange feeling of living in a beautiful suburb, in a beautiful house, with a nice car and all the trimmings that make our life easy and enjoyable. And then one day you find yourself struggling to pay bills for gas, electricity, phones, internet, childcare, clothing, petrol, tax, school and daycare. Sometimes food. It’s such an enormous fall from what we have come to be used to. And yet on the outside, we look to most like life hasn’t changed. But it has. We count our dollars and we value what we have so much more.

And what we know is that stress has a major impact on cancer growth and spread. We need to peel back all the layers of stress. By helping us financially you remove a major stressor for us.

Treatment facilities and hospitals overseas are hundreds of thousands of dollars and that is without medical issue or travel and relocation costs. The best diagnostic gene profiling and chemosensitivity tests run from $5,500 – $10,000…per test! We’ve spent $40,000+ in just the 4 mths since the metastatic diagnosis in July.

How can you help?
Buy a ticket to our Fundraiser Night Dec 6. 6pm. Greenwood. Nth Sydney
Donate an Auction prize for the fundraiser donations@louisedecelis.me
Donate directly to our family

I do want to make it really clear here that we are asking for financial assistance for our family. It is not a registered charity and the money would be gifted to us for medical treatment and support for the family.

I feel extremely lucky that we can ask for help without pride or ego getting in the way. After all, this could happen to any of us, it’s a conversation that many of us will need to have, and I hope that it makes it just that little easier now we have paved the way.

With much love and gratitude

Lou

Noah and Evie Byrne's Christening

Fundraiser For Lou!

When we started this blog on the 11th August we never expected we’d be posting about raising funds for Lou. We also never expected that chemotherapy, surgery, radiation, more chemo, more radiation and immunotherapy wouldn’t work either.

With the ongoing expense of fighting cancer now outweighing our diminishing income. We’re overcoming pride and asking for help.

There is no cure for Lou’s cancer. Our cancer-fighting focus is attempting to find treatments (domestically or abroad) that will prolong her life. Some of these options are upwards of €100 000, less travel and relocation costs.

A heartbreaking scenario for Lou is that Evie might not remember her mum if we don’t get a lucky break. Balancing treatment and spending time together is our priority right now.

You can help by:

    • Sourcing/Donating an item for auction

Please contact: donations@louisedecelis.me  or Ginny Timmins on +61 404 033 237

    • Attending Lou’s party: (we’re in the process of firming up the finer details of the party but your ticket will cover food, a DJ or band and a quantity of drinks TBA. Get in early and buy a ticket today.

Buy tickets for LouiseDeCelis.Me 

  • Donating money

Donate Now

Thanks for your help.

Love Lou, Dom, Noah and Evie. xx

SAVE THIS DATE: 6 DECEMBER 2018 I 6PM I GREENWOOD HOTEL

Remember those wild Thursday nights in the late 90’s, early 00’s at the Greenwood Hotel? I sure do. We’re having another one, all for Lou.

Put the date in your diary now. Let’s make it a sellout.

While all the details are to follow, if you or anyone you know can source an auction item please contact: Ginny Timmins: donations@louisedecelis.me or +61 404 033 237

We’re in the process of firming up the finer details of the party but your ticket will cover food, a DJ or band and a quantity of drinks TBA. Get in early and buy a ticket today.

Buy tickets for LouiseDeCelis.Me

To Be Honest, It’s Been a Shit Month

I was just looking at my calendar and thinking, we’ve had a bad run. Yep, Fuck You Cancer, you’re making us work for it. Lou’s only had a few good days since 10 September.

It’s mainly the Paarp pills that are causing severe fatigue, nausea, anxiety and pain. It’s a real kick in the face when you’re trying so hard.

I jotted down the words that best describe cancer and put them in a word cloud, unfortunately, Lou’s last five weeks can be summed up here 👇:

what are the feelings you get with cancer?

We’ve got many conversations in play with some of the best practitioners all around the world. We have some molecular screening results due back next week. And we are not taking a step backwards in the fight.  So we’re due for some wins to fall our way, and they will.

The best positive is Lou had a few consecutive days in good form for our week in Byron with the DeCelis clan and catching up with some of my family. So Cheers to that.

Sandakan Death March

Dominic, Geoffrey and Tristan Byrne, Borneo Coast to Coast. Sandakan Death March.

11/October/2018

In two weeks, if Lou is in satisfactory health with her current treatment plan, I’m going on a journey. My dad, brother and I are going to be rafting, trekking and bike riding The Borneo jungle, Coast to Coast.

When cancer becomes your life, it helps to relate other peoples struggles to your own. There is nothing like peoples experience of war to remind us of how fortunate we really are.

The Sandakan “death march” remains the greatest single atrocity committed against Australians in war. I’m still struggling to get my head around it.

Geoff and Tristan Byrne, walking, Training for the Sandakan Death March Walk.
Dad and Happy in training on the Newcastle coastline. Good to go!!

I will add more content to this page to in the coming weeks. That’s the plan anyway……

22 October 2018

Unfortunately, I won’t be going to Borneo this week. While Lou is still insisting I go, others have made the decision for me. Maybe another time.

 

The Little Ratbags are Happy, I’m Happy

So this is me on Sunday morning (no makeup), it’s early, the sun hasn’t even graced us with its presence. I’m 41 and still get excited about the day ahead when I know it’s going to be fun. Evie and Noah are asleep, I do want them to wake but I remain very still as I flogged them the previous day with non-stop action. Noah has been sleeping with a smile on his face. I’m tangled up in arms and legs, which I love, a nightmare for some but a happy place for me.

A primary goal of mine with Louise’s cancer has been to minimise disruption for the kids. It’s come at a financial cost but to see them happy is extremely fulfilling. I am proud of this. It’s important to feel like you are achieving in some areas at a time filled with consecutive bad news. Lou and I, with the help of family and friends, have nailed the management of our precious little munchkins.

Evie is still oblivious to the current state of affairs, she’s too young and naive. Noah is very well aware of what is going on. He does at times get emotional and momentarily angry at his “mumma” about the situation, which is his way of expressing his frustration. He’s genuinely concerned that she’s not always present and healthy and that their future together isn’t guaranteed. Lou hastily turns his upset feelings around by pouring some love into him.

Lou’s had a horrible three weeks, one bad day after the next. You have to sore to the sky and look down with perspective though. Lying here with the little ratbags, disappointed their mum isn’t here with us right now (although the bed is too small where would she sleep?) but still appreciative of my fortunate life that has been and that still is.

I’m on a best mates farm when he isn’t even in the state. Noah’s hanging with one of his besties and I his parents. I’ve borrowed motorbikes for the kids from another mate. Today we’ll be hosted at a good friends house, so the kids can ride horses, eat ice creams, breath the county air and simply have fun.  The kids are nothing but smiles, all weekend.

Sure I still think about the reality and the enormity of the current shit-show we are in but when the kids are smiling, we’re smiling.

When Noah wakes the first thing he says is; “I had the best dream Dadda,” and proceeds to tell me about all of these tunnels and slides that went down, around and underneath the house. It actually sounds pretty fun, I’m a little jealous. Evie is hungry.

We’re up and at’m.

My Tidal Thoughts

Your brain covers a lot of distance in many different directions when mortality is on your doorstep. I truly believe Lou will be around much longer than the ominous sentence most pundits prescribe. But when time is an unknown, it keeps your brain humming.

If you knew you had months, years or decades, you would do things so differently for each and every time variable. If Louise doesn’t respond to any treatment, the best and worst case scenarios differ by such a significant margin. If she does respond; then to what treatment, for how long and how well will she respond? What state will her body and mind be in throughout the battle? It’s impossible to strategise, it has to be day-by-day with an optimistic outlook.

So what is my washing machine brain doing as my neurons fire off wildly thoughts?

The kids obviously dominate my thinking. How can we manage the ongoing cancer rollercoaster without disrupting their innocent day-to-day lives? I’m always wondering how they will respond to different scenarios. It’s challenging to control your thoughts, so you often think about their precious little faces in the worst case scenarios. It’s just how it is.

Louise DeCelis Cancer Blog and What I think about

One thing I encourage my brain to address is that this is my life now. Lou’s disease is currently incurable but treatable. That sounds like a conflict of words but the reality is until they find a cure, we will be forever focused on treatment and survival. The geniuses will find a cure for MTNBC in about five years. So it’s five years we will fight like Spartacus and rest easy when we are free. I’m ok with this.

Because advanced cancer is our life now, for the immediate future its hour-by-hour, day-by-day. Many of the materialistic objectives are replaced by health and spiritual values. Sure we still want to take the kids on epic holidays and do fun things as often as we can, but many of the business, financial, aspirational and material goals have to be parked.

Money is always a massive worry. Money is a big worry for most families without throwing the cost of cancer into the thought blender. Lou and I built a great business that had several years of doubling annual growth. We never missed mortgage payments, we travelled the world and the wants we possessed continued to outgrow our needs. My motorbike accident followed by 15 months of cancer has crippled our trajectory. The truth is, if it wasn’t for family support we’d be beggars on the street. For that, we are extremely fortunate, downright lucky.

I think about life after death. I like to think there is something there.

I’m always thinking of the less fortunate. The people that die unexpectedly, shit out of luck children that get taken by an illness, individuals that have no financial or social means to survive their unfortunate situation. Often random things like citizens in North Korea or innocent children in war-torn countries. I guess that these thoughts are constant due to a combination of never-ending unpleasant media and my brain searching for markers to make me feel more fortunate about my own situation. It gives you perspective. The fact that life can be brutally cruel to some makes me feel like I’m a lucky one, regardless of Lou’s struggle.

My brain often worries that I’m not doing enough about our personal war on cancer. Who should I be talking to? What other options are out there? What should I be learning? It’s a very tough line to walk managing family, business and battling the Big C. I think about creating more options and prioritising those options so we’re always on the front foot. Australia is behind the eightball with cancer treatment, so where should we be? Are we doing the right thing? Where is another stone to turn over?

I appreciate special moments more than I did a year ago. Time with the kids, happy thoughts, the life that I have lived, days on this earth. Their good thoughts to stream.

I think about my own health, physically, emotionally and mentally. I have my own interests and techniques to reset my brain and keep my mind strong and motivated. Some activities like spinning laps on my motorbike carry their own risks, so I think a lot about this too.

When your children are sick or unhappy, you wish you could own that pain. Trade out. I wish I could do that for Lou. I can handle pain, physically and emotionally, better than anyone I know. I wish it was on me.

I think a lot about how loved we are. This keeps Lou going like fuel to an engine. The tsunami of support is immense, it flows in each time Louise needs a hit of love. I’m perpetually surprised when she gets smacked to the canvas how many people are there to pick her up again. This monopolises the thoughts I prefer not to entertain.

I think about winning. There is nothing like the satisfaction of winning when you have left absolutely everything on the pitch. Not another breath, another stride, another single effort. I think about the fulfilment of winning the toughest of battles, I think about our battle, the battle we are in, the battle for life.

I think we will win.

R U OK?

Three days ago I had a full blown panic attack in the middle of a crowded flight. Louise DeCelis. MTNBC. Are You Ok Day

Three days ago I had a full blown panic attack in the middle of a crowded flight, that had only just taken off, trolleys blocking both my ways out. I knew it was coming. It started with shortness of breath, a warm feeling crawling up all my limbs, nausea, shoes kicked off, sweating, panic, heart pounding and endless thoughts about how of course I was dying given my health and all the meds I am on. In that moment the panic is so real and you can’t escape it. And when you’re on a plane you can’t escape your situation so it’s multiplied. I’ve had two major ones before, one ending in an ambulance with my beautiful friend Ali looking after me. The other time Dom who always works me through it. Friday was my wonderful brother in law. All three of those people knew how to handle it because they knew my mental state. They knew I was in times of struggle and they made me feel like it was normal. It was OK. And as such my openness became my safety net.

On top of it, this time it was total strangers that also helped me, the hosties. (before Jon could even get to me) they reached out and asked me if I was ok. I explained that I needed help. They got me on oxygen, a seat with some space, a cup of ice and they were just so kind. Not judging me. Just genuinely concerned.

Friday also happened to be R U OK? day. A day of checking in on our loved ones, colleagues… or even strangers. And I wanted to say That One; it is perfectly ok to not be ok. People all around you are not ok. Two; it’s ok to be feeling great one day and not the next. I’m the perfect example. I go from 150% to 0 in a day and sometimes it takes a while to break through. And that’s ok. And Three; you don’t need to wait to be asked if you’re ok, it is perfectly ok to ask someone for help, or an ear, or some physical comfort. A hug. A hand held. My brother in law held my hand on that plane and it literally saved me. It comforted me without words and I knew I didn’t need to feel embarrassed or concerned about what other people thought. He was with me and he had my back.

R U OK? Louise DeCelis, MTNBC blog.

But I am good today, please don’t worry about me, this post is not for support. My openness has me covered with endless support. But do check in on your loved ones. And if you need help, even in the middle of a crowded aeroplane, reach out and ask someone. People want to help.

I hope you’re all ok this Sunday!! Big hugs 💖 #ivegotthis

Jon -McConkey And Louise DeCelis on The Gold Coast Queensland 2018. MTNBC Blog
J-Boy and Lou Lou on the GC

Evie Harper Byrne, So Much Character And A lot of Clanger

Evie Byrne has some clangers - Louise DeCelis Cancer Blog

A little bit of humour leading into the weekend.

Lou had a week to herself in Cleanland (Queensland), relaxing and preparing for the next phase of treatment. She’s feeling tip-top so, why not a little laugh.

Evie Pops loves a mashup. She has an amazing, un-deliberate ability to mash together not only words but multiple songs or nursery rhymes. If it was intentional, she’d be a hip-hop artist, at three.

It’s an ongoing source of micro entertainment, something to increase your daily smile numbers, which is always a good thing.

Evie’s own language starts with mispronounced single words, and she has some clangers. Here are some examples that are currently part of her daily rhetoric. Enjoy:

Bedtime daddy, time to put my tappie on.
*Nappie

(Evie jumps in the spa, holds eyes) Ouch, my eyes are stinking.
*Stinging

(Opens fridge) I want bizzy water.
*Fizzy

Not just a little bit, I want auvalit.
*All of it

Bibix for breakfast mummy
*Weetbix

Can we go to Aunty Eggs house so I can see Leck Leck
*Aunty Meg
*Lecksie

Dad, put Peanut Rabbit on Neckclicks
*Peter Rabbit
*Netflix

Mumma, did you get me a cresent when you were in Cleans Land?
*Present
*Queensland

Look, be careful, a spiderwent!
*Spiderweb

When I finish dinner can we have serdert?
*Desert

Well lactually!
*Actually

Don’t forget my pacpac
*backpack

Putt my dolly in the cram and let’s go the claygrown for Henry’s birsday
*Pram
*PlayGround
*Birsday

I might wear my pretty pink gress and put my lacelett on.
*Dress
*Bracelet

We love our little princess poppa. How could you not? Anyway, I’m off to watch Sleeping Mooty (*Beauty) with this funny little munchkin.

Dom

Evie in a swimming pool at Byron Bay, Elements

Today Australia Has A New PM, Who Gives a $*#! When Noah is Kicking Arse

Louise DeCelis and Noah Byrne, Noah receiving the kindergarten blue award.

I didn’t know it was possible to be so proud of a five-year-olds achievement.

Today Noah was presented, in front of his whole school, the Kindergarten Blue Award.

Days like this make you feel like a million dollars. Noah, I honestly don’t care what profession you choose, what sport you play, what social or sexual preferences you decide. As long as you care about others and try your absolute best, you will always be a winner.

Noah Byrne getting the Kindergarten Blue award

His teacher said it best: “Noah, you are wonderful. Thank you for adding positivity, happiness and joy to KB. You consistently follow the school rules and display great manners every day. Your kind caring nature makes you a fantastic team player and a beautiful friend. You make sure everyone is included and always help out if a friend is in need. KB love to hear about your amazing adventures on the weekend, whether it be whale watching or making bonfires. Your bright smile lights up our classroom every day and we are so lucky to have you in KB. Thank you for being you, Noah Byrne. ”

Dom
PS: I would prefer you ski over snowboard but I will learn to board if that’s your choice – ha…..

Dominic Byrne with Noah Byrne at Sacret heart getting the kindergarten blue award

 

A Compliment For Louise

So yesterday at our Immunotherapy kick-off meeting,  Professor Kefford gave Lou a quality compliment. Not bad coming from someone who has been working with cancer and treating cancer patients with chemotherapy, radiation and Immunotherapy, from before Lou was born.

“I’ve been doing this job for forty years and haven’t seen anyone that looks as good as you do for what you’ve had.”

Never Ever Give Up, Never

Immunotherapy cancer fight for TNBC Louise DeCelis

I thought I’d share a personal email I sent Lou at the beginning of this cancer journey. Umm yep, I send my wife emails that are non-work/admin related. Somehow my keyboard knows what to say when my mouth doesn’t.  If it wasn’t for modern comm’s technology (SMS, email, social etc) I may well be classified as a mute by now.

Anyways, we’re staring down the barrel of another battle in the war, the enemy has more artillery and we are on the backfoot but the fight needs to be unwavering.


EMAIL

12th of July 2017

Lou,

At school, we wrote letters to each other before big games, races or events, we wrote letters to each other even when we lived in the same room. It was all about preparation, support, confidence and motivation. We did it at the start of the season, before big games and grand finals and when things weren’t going to plan, the reason we did this is is because success begins in the mind. If you believe that you can do something, you can do it. You must believe in it one hundred per cent. What you believe yourself to be, you are. Your self-image prescribes the limits for the accomplishment of your goals. It prescribes the “area of the possible” for you.

If you envisage successful milestones along the journey, the goals become easier to obtain, in saying that it’s never easy. Successful milestones come with a ridiculous amount of pain, hardship and suffering. Winners fight harder than the opposition, dig deeper, accept more pain and even smile in the face of such a challenge or adversity.

You’ve handled the first ten days like a champion, the mental preparation has been on-song, but the game starts today. There are six games (treatments) and the first game always sets the foundation for the next. Each game determines what changes need to be made, how prepared you really are and how tough the opposition is going to be, along with what strategy is needed for the next. In this instance, the competition doesn’t get any tougher, because the competition is a disease in your own body, and to win, you have to fight.

This is a fight. When a fighter gets boxed into the corner and is on the ropes, the only way out is to come out of the corner swinging. Over the course of a boxing match you may find yourself on the canvas, out of breath and utterly fatigued but if you keep getting to your feet and you keep punching, you will be standing when the last round dings, and if you punched harder than the competition and dodged the onslaught as best as possible, and you never gave up, then you win.

It’s one game at a time. Compartmentalise the small things (unpackage them and deal with them later) and play what is right in front of you, play the milestone staring you in the face. Losing your hair, feeling weak, getting a puffy face and looking like shit, it’s all temporary and insignificant. Losing a titty is also insignificant in the scheme of things too, who cares, no one. Deal with all those setbacks when its time, deal with them one by one as the hurdles appear in your stride.

The Tour de France is multiple stages, climbing Everest is four camps and many ups and downs, a fight is multiple rounds, a competition is many games, a marathon is many steps, a gold medal is many races and your treatment is currently six sessions. You only have to win today’s game, recover from it and prepare for the next.

Good luck. Stay positive. I am proud of you. You’re a great role model, not just for Noah and Evie but anyone that is dealt an unwanted and unwarranted set of cards.

Punch on.

xxx


Nothing changes. The ref has rung the bell, it’s simply another fight. Bring on Immunotherapy, do your best to win, never give up, it’s not even an option. If we go down, we fight again.

Yesterday Was A Bad Day On The Rollercoaster

Elysia DeCelis, her four children and Noah and Evie Byrne

Yesterday was a bad day on the rollercoaster. Tough, overwhelming, painful and exhausting. I want to tell you all about it but before I do I want to thank every single one of the 502+ people who have shared our post looking for other women like me. It’s unbelievable how supported we feel. We’ve had so many messages and comments with new info and we’ll follow up every single one. The power of social media for good is real!!

I’m finding it hard to keep up with messaging everyone back but please don’t stop! Know if I don’t reply I do read them all and i genuinely appreciate everyone reaching out. I’m also a little overwhelmed with the emotion of what’s happening so I’m shutting down & going off the grid for a few days for a weekend away with my little family (which was planned months ago as an end of cancer treat).

So, yesterday…. Monday they took 3 biopsies from my rib bone lesion, then Tuesday started high dose radiation for 5 days. When they told me I’d be in more pain and it would get much worse before it gets better I had no idea. I also didn’t expect the first radiation treatment to completely wipe me out with utter exhaustion.

For the last year, I have fought every minute of every day for my health, I have worked so bloody hard. I did everything they asked me to do and some. Walking when I was floored, tough weight sessions at the gym twice a week at least, during treatment and after, and the most positive mindset anyone could imagine. And it took all I have to push through. I did it for my kids so they could have a mum that could play with them and look after them without help, and I did it for myself to get my life back. I did it for Dom and all the people I love so they would know what they meant to me and how hard i’d fight to stay with them. And in just one day I felt stripped of all of it. I’ve said I am ready to fight and to suffer again, but I didn’t expect the pain, utter exhaustion and paralysing fear to hit so soon. Too soon! Bone cancer hurts… it really f’ing hurts. Yesterday I remembered what I felt at my lowest points in the last year, and there’s a reason your body forgets pain. So you can get up and go on! And it’s not until you are back there on the floor, exhausted & hurting that you remember how hard the fight really is.

Besides the physical suffering the day started incredibly badly. Dom was out of the house before we all woke and Noah woke up before me. He tried to wake me. No luck. He ate an Apple watched tv and tried to wake me. No luck. So he got my phone and started calling people until he got my sister (who lives over the road), and asked her to come and make him breakfast. Uuuughhhh… My heart breaks into a million pieces. I don’t even remember my poor boy trying to wake me. Evie and I were sound asleep while my brave and beautiful boy fought back the fear that his mum wouldn’t wake up, all in the same week as being told his mum was so sick that there’s a chance that ‘the bad cells could win’. My heart breaks into a million more pieces.

I spent the rest of the day in pain, and devastation and on a radiation table amongst other things, crying tears that I couldn’t wipe away as you lie so still, arms above your head, unable to move to wipe the tears that you feel pouring down the sides of your face. Last time I lasted 6 weeks of radiation without a single tear on that table. But the stakes were different, we were always going to win, and now we have to accept the uncertainty that will surely linger for the rest of my life.

Today I’m out of the foetal position. Buoyed by a total stranger calling me to offer advice and well wishes, a mum who has her own breast cancer journey. By one of my closest friends taking me to treatment and cooking me a keto lunch. By another getting me out of bed yesterday, me and Evie fed and ready for the day. By the 502 people who have shared our post for help. By my beautiful, capable sister who never ceases to amaze me. And by my two divine babies who i’m off to beach with to dig our feet in the sand, have an ice cream and take a big calm breath and enjoy the moment.

XoX Lou

If you want to hear how Dom explained my new diagnosis to Noah, grab some tissues and read here

Elysia, her three girls and Evie Byrne eating ice creams at Balmoral beach

 

How to tell a five year old his mum has cancer, and it’s serious

Noah Byrne Having a Lemonade in Bali. Louise DeCelis Breast cancer Blog

Without anyone telling Noah that mummy was in a precarious situation, he knew something was up. Five-year-olds are way more clever than often credited. They might be doing simple sight-words and basic maths, but they know a hell of a lot.

In a meditation class at school last Tuesday, Noah (a good Catholic boy like his dad) put his tiny little hand in the air and asked; “can we pray for my mum because she’s still a little bit sick.” Just four days into Lou’s metastatic diagnosis, he was all over it, without receiving a single personal memo across his desk.

Noah Byrne Skiing in Thredbo

All the literature I perused had some common themes I found valuable:

  • Start with questions to see what they already know
  • Don’t overload the detail
  • Make sure they understand it’s nobody’s fault
  • Assure them they will be looked after no matter what
  • If they feel like you’re hiding something from them, it might bite you back
  • Talk to them at their comprehension/age level but don’t sugarcoat it
  • Love the hell out of your little stinky monkeys

I’d prepped all week, going through presentation deliveries and scenarios in my head, it felt like I was gearing up for corporate prezo to a full auditorium, not an adorable little five-year-old.

Daddy: “Noah, I heard that you prayed for mummy at school, what did you say?”
NoNo’s: “Just that my mummy was a little bit sick”
Daddy: “Do you know what’s wrong with mummy?”
NoNo’s: “Ummm, ask the Doctors, they will know”
Daddy: “Do you know what cancer is?”
Noah: “Cancer, how do you spell it dadda?”
Daddy: “You tell me how you spell it buddy”
NoNo’s: “is it with a K or a C”
Daddy: “C”
NoNo’s: “C.A.N.C.A
Daddy: “close, well done, C.A.N.C.E.R.”

Noah-Byrne-Pre-school-OAC-2017-Louise-Decelis-blog

Being the wannabe scientist that he is, he steered the conversation deep into the biology.

With his enthusiastic animated face, eyes and motoring mouth wide open,  he’s onto something that the scientists aren’t. “Dadda, why don’t the good cells have fire, swords and laser beams to beat the bad cells! You know if Mumma learns karate then the good cells inside will learn to fight and kill the bad cells right?”

The conversation played out really well, I was very proud of his maturity, knowledge and interest. He did ask some questions that reluctantly had to be answered and while I prepared for them, I had to digest the cricket ball in my throat to respond as best I could.

NoNo’s: “What if the bad cells win Dadda?”
Dadda: “Well, your mummy, the doctors and I are doing everything we can so that the good cells win and I think we’ll win buddy. If the bad cells do win, well, then mummy could get very very sick.”
NoNo’s: “Could mummy die?”
Dadda: “That is a possibility beautiful (he’s not going to want me to call him beautiful in a few years time, I’m pretty sure of that). Noah, you know how you’ve ranked everyone in the family on who is going to die first? You know how you’re always telling me that NanNan is going to die first because she is nearly a hundred, and then Poppie will be next because he is like 70 and then grandpa and grandma………….all the way down to Georgie because she is a just a baby.” It doesn’t always happen that way, sometimes accidents happen, people get sick, even babies might die before NanNan.”

Dominic Byrne and Noah Playing With Paint

He was so brave. The conversation progressed. After some silence, the tears welled in his innocent ocean coloured eyes and he said:

“Dadda, I don’t want Mumma to die, how will I come home and tell her that I scored a goal in soccer today.” He had a little cry. I kept reassuring him that no matter what, he would always be loved and looked after, by mummy or daddy, nanna, poppie, grandma, grandpa, aunty-Leisy, uncle Jon, aunty Emma…….(I was rattling off all of his aunties and uncles when he was quick to interrupt)

“And my cousins and friends Dadda, they will look after me too!!.”

Noah had a dinner date with his Mumma that night at his favourite restaurant – Italian Pizza Kitchen. He raised the conversation with her on his own. “What’s your sickness called again, oh yeah, cancer, that’s it. Sometimes if the bad cells win mummy, you can die. If you die, who will be my mummy? How will you be my mum forever if you die? Your only 40, your not old enough to die.”

Lou answered all his questions like a trooper while forcibly pushing down her strict keto meal conversing intently while simultaneously dreaming of pizza and tiramisu. While her perfect creation sitting across the table, propped up like an adult, washed down his burger and fries with a lemonade, confidently telling her what’s what.

Noah slept in my spot that night, I surrendered upstairs so he could cuddle and protect his most favourite person in the whole wide world.

We love you Noah, more than your imaginative brain can comprehend.

Dominic Byrne with Noah when he was a fresh baby

So What Does The Last Seven Days Look Like?

Louise Decelis and Noah Byrne smiling for a selfie

It’s been seven days since Lou’s oncologist dropped the mother of all bombs on our lives. Yeah, we’d been living with cancer for over a year. Yeah, Lou had been brutalised with 14 months of barbaric treatment. Yeah, it disrupted our lives as we ran the cancer gauntlet while trying to keep some family structure. But yeah, “we’d be right mate.” We were always going to come out the other end, bruised but better for it, challenged but successful, flogged but winners. Not this time. By any means, don’t count us out, another game starts and we’re preparing for all-out war. But we lost the opening battles and the odds are tipped against us.

So what does the last seven days look like? Well, I hired a lifeguard for the home as I was worried the tears were going to push the water level above the kids wading height. Family, friends, big grown men, rugby players that were on-field enforces, country boys with calloused hands and stoic hearts, all reduced to tears. After three days of essentially mourning, we sprang back into action. Since Tuesday we’ve met with two cancer professors, three oncologists, a naturopath and several doctors. Our calendar is just as populated this coming week.

A massive thank you to those that made calls and opened doors. Peoples prompt response to just make shit happen has been remarkable. Thank you for the love and thank you for the tears, all shed for Lou. Tears of empathy, tears of sorrow, tears of anger, tears of gut-wrenching pain. Thank you for your unwavering support. I echo Lou’s last social post that the love expressed, both physical and virtual, has supported her limp and exhausted body. It’s propping her up so she can stand on her own two feet again.

I’m a fairly private person. My social media posts are nothing but an embellished snapshot of the good times. Motorbikes, skiing, holidays and a plethora of proud parent snaps of the two best kids on earth. The best kids in my biased eyes anyway. Lou has let it all hang out over the past year, it’s motivated me to keep the transparency moving and contribute, especially when she can’t. So I’ve started this blog, I have no idea where it will end up. Perhaps a detailed narrative of the next twelve months, maybe some preserved words for Noah and Evie or some motivation for the next cancer number thrown to the wolves. Maybe just a post or two that becomes nothing but forgotten pages buried deep in Google’s servers.

Apart from my two previous updates about Lou, you won’t find any emotional words from me online. I’ve never displayed affection publicly, it’s been my preference to do this in the comfort of my own home, and perhaps more through actions than words. For those close to me you are well aware I am a man of minimal verbal dialogue. Often zero words in a social arrangement (I don’t apologise). So this public journey will be interesting, therapeutic – hopefully, and maybe even uncomfortable for someone aloof like myself. However, I’ll dabble in taking you for a ride on the cancer rollercoaster. Hopefully, Lou will do most of the posting.

I’ve got a big day today. I’m going to tell my beautiful boy, the most sensitive, emotionally connected five-year-old on the planet, about the current situation that is. I think I might do it at the BMX track.

Dom