Husband to Louise, father to Noah and Evie, master of Bulldog-Benson. I’ve lived an exciting life, I’m still living it, addicted to getting my buzz-on, I’m always chasing steep and deep descents on skis or my next dirt bike session at the track. At forty, I encourage Noah to the skate park for my own selfish reasons. Professionally, I’m a full stack digital marketing expert with my own business, Digitoro. My life goals, needs and wants have dramatically shifted in the past year. I’m now dedicated to keeping the mother of my adorable little tin-lids alive and happy.
Dressed head to toe in pink with heavy black plastic boots anchoring her to the snow-covered ground.
Evie’s dark brown hair is failing to find a place to rest as it blows across her sun-kissed cheeks, streaming to either side of her oversized pink helmet as she travels at seven kilometres an hour down a 15-degree gradient.
She’s putting all her might into staying upright while wrangling her tiny little skis towards the bottom of the hill.
Like music to my ears, she screeches a gallon of ‘high pitch crisp mountain air’ from her lungs; “I LOVE SKIIIING…!!”
My little spirited chocolate -eyed four-year-old, bouncing those magic words off The Kosciusko Mountain Range. Such bliss. This was an insignificant moment to everyone else on the hill, and around the world for that matter, but an epic milestone for her proud dad.
10 weeks ago I couldn’t convince her to put her ski boots on. Ski boots are not something you can simply slip on when your child isn’t looking either. Plus if you know Evie, shes doesn’t comply with anything her mind isn’t lined up to do. Getting Evie-Pops to conform to something she isn’t interested in, is like trying to roll up a garden hose the opposite way to its been resting. Improbable.
When Evie bellows; “I LOVE SKIIIING…!!” I respond without any pause. “I wish your mummy could see you now Puffin.”
Lou would have loved skiing with Evie on her first successful run down the slushy spring snow. In my own biased opinion, there is nothing better than a family ski holiday. Nothing even comes close.
Lou and I were both grateful and content with two beautiful children. I always backed-up this fulfilled sentiment with the analogy that chairlifts are made for four and we would soon populate a chairlift just perfect.
We never got to ride a chairlift together. There is an empty seat as we lap the mountain, there always will be. It’s such a blended cup of emotion to try and digest. To be doing the activity you love most, with the two little people you love most, but to be doing it one quarter short of a whole. It’s utterly painful elation. Go figure.
Today Noah said; “I’d probably be better than mummy now dad.” I’ll leave that for your mum to judge champ.
So looking forward to more amazing summery days like today ✨✨
Everything feels lighter in summer, doesn’t it?!?
This morning a question popped into my thoughts “I wonder how many more summers I will see?” to which my mind immediately responded “8, 18, 48???” And the answer is I really don’t know.
The truth is none of us do. I’ve just been forced to contemplate it. Even 48 does not seem long enough.
What I do know is I’m not going to live every day like it’s my last. That just feels sad and exhausting.
I’m going to live in every moment like it will never end. Savouring the every day, because that’s where the magic lies ✨✨ being strong & healthy in my body, happy & peaceful in my mind, alongside the people I love.
How would you spend your summer if you only had 8 or 18 left? 🌈✨💖
XoX #makethemostofeverymoment #ivegotthis
I love Lou’s optimism and hope that is in this post. Lou talks about eight years of summers. She didn’t get through one. She didn’t see five more months from this day. She saw her hospital room ceiling and deep into many a toilet bowl. She saw several more months of intense physical pain and suffering. Emotional turmoil and despair. Worry and fear. Clinging on to the occasional sunset to inspire some hope and keep up the fight.
Validate how I’ve been managing Noah and Evie’s grief; and
Decide if Noah or Evie needed any professional guidance living with their grief
After all, the kids did lose the most central person in their life, their anchorage for a sense of self and personal security. For the most part, I am blown away at how well they are coping but let’s face it, Noah and Evie will grieve forever. They will live happily and fulfilled lives but they will be reminded of their cruel loss until their own death.
The most rewarding part that I got from yesterday’s session is that I feel we’ve done close to everything right in how we have managed Noah and Evie. From the day Lou was diagnosed with cancer in June 2017, until the day she died on January 12th, and up until this very day.
A motto that my counsellor mentioned that NCCG base themselves on is; “Truth and Inclusion.” This really resonated with me as it’s been my own practical mantra throughout Lou’s sickness and death. I feel that on occasions I have swum against the tide here to ensure that the children were part of Lou’s sickness, death, funeral and the ongoing grieving process.
The NCCG say that children “need to be loved, understood and included in all aspects of family grief. They need to be able to trust parents and other important caregivers to tell them the truth, in simple, direct language, appropriate for their age. Don’t use euphemisms in an attempt to soften facts.”
Noah did show some regressive behaviour after bringing Lou’s ashes home and both my little monkeys have oozed a little more anger than one might expect. These small changes were the catalyst for following through with the recommendation to engage with professional support.
I got a good feeling for the centre and its staff. I’ll take Noah and Evie in to see if its something they engage with and are open to continuing in the capacity recommended by NCCG. It defiantly can’t do any harm.
So Elysia, Louise’s sister (and very best friend) wanted to take photos of our six kids to record memories and times together as a blended family.
I say “our six kids” and “blended family” because that is essentially what we have become. Elysia and Jon have taken over many of the motherly responsibilities once manged by Lou, to ensure that my two children grow up loved and nurtured like any other.
Lou had an extremely close bond with Elysia and Jon’s four little angels, I also did from day one and it is my intention that I always will.
All six children are as close to each other as any siblings and behave as if they are the same blood.
I personally wouldn’t survive in my present life if Jon, Elyisa, Josh, Sadie, Billie and Georgie were not in it.
Elysia’s intention was to manage the photos privately and to record memories for the kids but Jon and I were keen to continue with the transparency that started with Louise and her killer disease.
So I have added an Instagram social page to this blog https://louisedecelis.me/social/ that includes a feed of Elysia’s beautiful photos of our beautiful children. Giving some insight into six loved hearts guided by three loving parents.
Your socks are rolled up in a ball, stuffed in the top of one of your tiny pink running shoes, ready for a gym session.
Your book; “Book Of Joy” by The Dalai Lama is neatly placed at your side of the bed, bookmarked on page 123 with 228 pages to be read.
Your toothbrush is still in its holder above the sink.
But. You’re not here. You never will be. Ever.
Evie asked me yesterday; “Will I see Mummy for Christmas?” I’m not sure if she still doesn’t get it, if she doesn’t accept it or if she just dreams that one day I will say; “sure Puffin, you will see mummy for Christmas, she can’t wait to see you.” I get choked up when she asks about your whereabouts and when you’re coming home. The lump in my throat will never go away in that conversation. It’s in my throat now just thinking about it, like a small dry ball of bread lodged in the oesophagus.
Evie talks about you the most of anyone. She talks about you every single day.
I dropped her off at school this morning as little red riding hood for book week. She definitely inherited all your beauty and flare.
I told her she is encouraged by her teacher Emily to take a book to school, so no prizes guessing what book she packed in her Hello Kitty backpack along with three additional outfits for the day. Yep; “My Mumma.”
Noah came up to me while I was hanging clothes on the line last week and grabbed me around the leg like an orphaned koala, wanting to be picked up and rescued. He just started balling with big wet tears squirting from his eyes, “I want my mummy daddy.” He cried, we cried, cuddling for 40 minutes on the sofa, wishing you were here. It was good for us because we haven’t done that in a while. I’m not sure what set him off but it was much-needed therapy for the both of us.
July was a tough month for me. None are easy but for some reason, it just ticked over with a little more discomfort. The last couple of weeks have been much better. Hopefully August is an easier month in handling your absence.
You were very missed last week at my dad’s 70th birthday weekend in the mountains. Well, you are very missed at every event. You’re missed every week, every day, every minute.
Anyways, I just wanted to say hi and that I miss you. We all do.
Not an hour goes by that I don’t think of you. I was telling Noah and Evie on Wednesday night that I miss you yelling at me. They thought that was pretty funny.
Evie still asks most weeks; “When is mummy not going to be died anymore?” She enjoys wearing your clothes and makeup. She talks about you with enthusiasm pouring from her larynx.
When Noah cuddles me in the morning he sometimes mumbles “mummaa!!,” as he is giving me a big squeeze. He is cuddling you through me.
As I mentioned in my last post, Noah has had a tough time in the last few weeks digesting that you are back in your bedroom, as six kilograms of dust. It’s mind-boggling for me so I can’t imagine the thought process for a six-year-old boy. A beautiful little boy that was infatuated with you, his mum, his security, his life.
You would be so proud of the kids. As each month sneaks by, I increasingly want you to see how the kids have grown. I would love you to hear the conversations I have with them.
Remember when we would all lie in bed, cracking up laughing at Noah’s stories before he drifted off to sleep? I looked forward to this time in the preceding hours. I still do, it’s probably my favourite time of the day.
We miss you so much.
I’ve been really busy with work and am having some great wins. You would be very proud.
As a family of three, we are doing really well considering. Everyone is supporting the kids and me to a level I could never forecast. We’re off on another road trip tomorrow. The front passenger seat empty but our hearts and minds full of the reason the three of us are together as a tight little team, the reason being YOU!
I wrote this post with tears on my traditionally arid cheeks 😢, struggling to see the words i was typing on the screen. Time has moved so quickly this year but it feels like an eternity. Six months is so fast in the scheme of things but so slow when an endless pit of anguish fails to repair. Such a juxtaposition of time.
I carry some respite knowing how much you loved me. The kids do too. Yesterday in bed, Evie said; “mummy tried so hard didn’t she?” I love that your spirit is embedded in her little firey soul.
Hi Kids. Now, I know you know that I am no longer physically with you anymore but your dad knew me so well that if I could send a letter, he knows exactly what I would say. He’s pretty smart your dad….😉
Dear beautiful babies, I know you miss me like crazy but I am so happy that you smile every day. Your laughs echo into the heavens and all the angels and fairies, like me, flutter their wings with joy.
Mothers day just doesn’t sound right when you don’t have a mum. But you are so lucky. You have a dad that loves you all the snowflakes in the world. You have Aunty Liesy and Jon-boy that look after you every day and love you as equally as they do; Josh, Sadie, Bill-Bill and The G. You have Grandma, Grandpa, Nanny and Poppie that think you are two of the most beautiful people in this whole wide world. You are the most beautiful people in this whole wide world.
I miss you like crazy too. I want to reach down and touch you, cuddle you and make you feel warm and safe. I want to kiss you one more time, I want to tell you that I love you. Well, I do love you, so so much. I tried so hard to stay with you in this world. I wanted to be your mother until I was old and wrinkly like nan-nan. I wanted to hold your babies in my arms. I fought with everything that I could, I never gave up. Your dad will tell you how brave I was.
Thanks for remembering me so well. Thanks for talking about me every day. Thanks for my birthday cards and thank you for my mothers day cards. Keep placing them under the tree, I will keep looking at them there.
I remember the last time you came to see me and bring me flowers and heart-shaped rocks. You cuddled and kissed me and told me that you loved me. Even though I was sleeping, you made me feel so happy. I was able to keep sleeping with your endless love in my heart.
You are both getting big now. I can’t believe how much you have grown. You are very special and are doing so well without me. Some days will be harder than others but if you miss me, tell your dad, he will be able to make you feel better. When you’re cuddling daddy, you are cuddling me too.
Tell your dad that I miss him too. Tell him to slow down, I know he was speeding on your Easter holiday road trip. I still have one eye on the speedo you know.
Evie Pops, you are so beautiful, you always look so pretty in all those colourful dresses. I’m being a bit modest here but I used to light up every room I graced. You are that light switch now. So Pretty with a confident and spirited soul.
Noah, you are so empathetic, generous and strong. You are a beautiful looking boy. The emotional connection you and I had is what brightens up the nighttime sky. 💫⭐️🌟✨
NoNo’s, Evie, I love you. I miss you as much as you miss me. Keep having fun, you are so good at it. Keep smiling, keep laughing and keep your dad on his toes like I always did. I am so proud of you.
About a month ago, on the first weekend of April, I organised a weekend away with a few other dads that lost their wives to cancer.
Unfortunately one of the dads had to pull out at the last minute because his daughter was very ill during the week. He’ll be on the next widowers weekend away for sure.
Out of the three dads that joined me, we had nine kids between us. Thomo; three, Craig, Josh and I each have two little munchies. A nice little posse of motherless families that were dealt a rough hand.
My original goal was purely for the children to understand that they are not alone and that there are many other kids in the world that don’t have mums. The weekend was a real winner, not just for the kids but for the dads too.
Tennis, swimming, dolls, motorbikes, horses, dress ups, tip and bullrush on the lawn, a dinner out at at the Sir George Hotel in Jugiong, a cracking BBQ on the farm, beers (for the dads) and some good chat for all.
The best win for me is that the kids loved it and they all got along like a house on fire.
Although I didn’t originally plan it like this, having this weekend leading into a big month that contained school holidays, Lou’s birthday and mothers day was good timing. I think it settled the kids a little. The county air and being off the grid can do this on its own, add a few solid families in the same unfortunate circumstance and the lasting result was invaluable.
I am looking forward to doing this again when Rory and his little tin lids can join us. But thats it, this is a group that DOES NOT need any more members…….
I hope all is well and you enjoyed your Easter break to the Gold Coast. Evie has been telling us all about Movie World and the water park you went to. I just wanted to discuss the topic of Mother’s Day with you. I know this is a sensitive topic this year and we have definitely been thinking about you and your family with this day coming up soon. We would love for Evie to honour Lou and today we began making our Mother’s Day gifts, which are decorated coffee mugs. I asked Evie “Is there someone special you would like to make the coffee mug for.” She said, “I want to make it for mummy and then daddy can drink his coffee and coke in it.” So today, Evie decorated her mug and drew some lovely pictures. She drew a star, a skipping rope, yourself and Louise, and a fish. We are also doing a questionnaire with the Banksia’s, which will contain lots of questions about their mother’s. Evie is eager and excited to do this this afternoon. I also wanted to ask you if there is a way you would like us to go about the ‘Mother’s Day’ topic with Evie and if there is anything you would like us to do with Evie to celebrate Lou as the wonderful mother she was. We do have a Mother’s Day afternoon tea coming up next Friday the 10th at 3:00pm. You are more than welcome to attend with Noah and Evie also mentioned that she wants her Aunty to attend too.
Kind regards, Emily Pride Only About Children
Dear Dominic and Elysia,
I just wanted to let you know that Noah decided to make a card for his mum for Mother’s Day and has been freely talking about Mum and happily working on his writing.
We did initially talk about whether he would like to make a card for someone else too, but he said he would prefer to make one card for his mum. I asked him to let me know if he needed some time out or a break but he hasn’t taken up that option to date.
We finished the writing today and will complete an artwork early next week, so the focus will start to change soon.
The Mother’s Day breakfast will be at school next Friday. You are more than welcome to attend. The morning consists of an open classroom until from 8:10am where children can show their work and what they do in class.
There is also food and coffee available in the playground I believe. This will be followed by a Mass that is due to finish around 10:30am.
Noah is an amazingly resilient and diligent student. You must be very proud of him.
Please let me know if I can be of further assistance over the coming week. Kind regards, Martina
When Lou turned 40 this time last year, it was during a very short period that we thought she was cancer free. Our original plan was to throw a big combined 40th birthday party when she was feeling 100% and we were confident the nightmare was behind us.
At the last minute, Lou decided to organise a party at short notice with close family and friends. She loved a party and she loved being the centre of attention, I’m really glad she organised this get together and seized the opportunity. Unfortunately, even though you hear the optimism in the words of the poem, this birthday would be her last. 😔
I have such positive memories of you and the way you appear in my thoughts. My momentarily or flash style thoughts of you typify who you were; happy, excitable, motivated, high energy, contagious with affection………
I’ve been a little quiet on the blog posts lately. I’ve commenced a few but have lacked spark and creativity to continue. If the motivation has been missing I haven’t bothered pushing it. I’m attempting to roll with the punches as best I can and not put myself under too much pressure in any way.
There is no consistency in how I am feeling. My emotions, motivation and daily mental health are very unpredictable. If I have several really good days, especially on the weekend, then I tend to crash in the proceeding days. It takes me a while to get back on an even keel again.
I think I’m doing as best as I can given the unfortunate circumstances. The whole situation of losing your closest companion is one major adjustment process.
There has been a lot of tedious administration tasks to sort through. We bucked the trend compared to most household financial management roles. Lou was good at managing money and all the tasks that surrounded both our domestic and work-related accounting matters. Even when I sold my investment property that I had for ten years, I had her manage both the process and the funds, all transferred and managed in her name. She was good at it. For a technically progressive guy, I didn’t even have online banking activated. When I needed money I just asked for it, a bit like a 1950’s housewife but not oppressed, a convenient situation by choice…..
I liked it that way. I will have no problem managing the money from this point forward but I preferred the previous arrangement better. In many ways, Lou “wore the pants” in our marriage and I loved it like that. Until Lou died, I had never even logged into my own work accounting system. Lou and I didn’t have a will either, so all of our accounts, except one, are currently frozen. I’ve had to source birth and marriage certificates, many re-applied for, as I don’t know where Lou stored such paperwork. I was required to have all the family papers officially translated to German so that I can get a formal death certificate and I am now in the process of getting the death certificate translated to English for legal purposes back here at home.
It’s a real grind doing all of this painful, monotonous administrative stuff. Mainly because I keep shaking my head and wonder why the fuck am I doing this shit in the first place?
Sorry. I’m not complaining. I just miss the old system where I worried about very little because I had someone in my home conveniently managing it all for me. I am currently getting some great help by several people to sort it all out and handle it moving forward.
So who’s seen the Netflix series; The After Life?
You might ask why would I watch a series about a guy (Tony, played by Ricky Gervais) who had the perfect life – until his wife Lisa died of breast cancer.
I watch very few series, I watch zero television and only occasionally watch the odd movie. I guess I was rolling the dice deciding to watch The After Life. The main drawcard was Ricky Gervais. I’ve always been a massive fan of his productions and I was curious how he would put together such a narrative.
In the already successful series, which is made up of six easy 30 min shows, Tony, formerly a nice guy, changes dramatically after the tragic event of his wife’s death. In several episodes, Tony both talks about and contemplates taking his own life. He carries on in a depressive state saying and doing whatever the hell he likes. He doesn’t give a shit about himself or anybody else. I won’t give too much more away than that, in case you decide to watch it.
The series made me feel better about myself because Tony is pretty messed up. If it wasn’t for my kids I am sure I’d be much more like Tony.
Has anyone else seen it? I’ll give you the reasons why I liked the show once it has aired for a while as I would need to talk about the last couple of episodes. Ricky is one funny dude. He wrote, directed and starred in this Netflix series himself.
No, I didn’t learn German in my three-month stay, Google helped me out with the translation on this one….
Here is the translation:
I can’t see anymore, I put no trust in my eyes anymore, can hardly believe anymore – feelings have turned around. I’m much too lazy to give up. Would be too early anyway, because something always works out.
We were conspired, would have died for each other, bowed the rain, lent each other trust. We tried to reverse, full speed downhill. Nothing was too late, but a lot too early.
We pushed each other through all the tides, we frittered, loved each other desperately. We lied about the truth as good as possible. It was a piece of heaven that you were there.
CHORUS You flooded every room with sunshine, converted every displeasure into its opposite. Nordic noble – your gentle kindness, your irrepressible proudness… Life is not fair.
Danced the movie in a silver room, admired infinity from the golden balcony. Hopelessly sunk, drunk and everything was permitted. Together in time lapse. Midsummernight’s dream.
CHORUS You flooded every room with sunshine, converted every displeasure into its opposite. Nordic noble – your gentle kindness, your irrepressible proudness… Life is not fair.
Your confident pace, your true poems, your bright dignity, your unshakeable aptitude. You made head against destiny. Never revealed your idea of happiness, your idea of happiness.
I don’t go away, I extended my term. New time travel, open world. I have you safely in my soul. I’ll carry you with me until the curtain falls. I’ll carry you with me until the curtain falls.
The artist is Herbert Grönemeyer. A new friend in Germany offering us support while we were there sent it to me. I think Herbert is a pretty big deal up there in Deutschland.
Good song huh?
“You flooded every room with sunshine…”
Herbert ‘s brother Wilhelm and his wife Anna died of cancer (within four days of each other). Poor bastard.
The song style reminds me of this banger which I love.
Anyway, how hard would it be to write a song? I wouldn’t pain anyone’s ears singing it as I don’t have the vocal cords to punch out a single note. But it would be a nice tribute just to create the lyrics.
It’s the first day of autumn today, it’s not really of any significance, to me it just means that the year is getting on in a hurry. Well, it also means we are one season away from getting a few turns in atop of the Aussie Alps. Noah keeps asking me “when are we going to Thredbo?”, so bring on winter.
Before we know it, it will be the end of March and a quarter of the way through the year. It feels like time is moving a little slower but the months are going fast. Go figure.
Tomorrow will be 50 days gone for Lou. *sigh.
I’ve had one of my better weeks. I went for a motorbike ride on Tuesday, it had been 111 days since my last ride. I was a bit rusty on the bike and my lap times were about 20 seconds down from my previous session at the track. Lou would be very pleased I was being cautious while finding my feet.
I just love how it cleanses my mind. I’ve mentioned in a previous post about riding my bike being more of a need than a want. I wish gardening et al pushed the same buttons but the velocity just isn’t there in such activities. Unfortunately.
When I was in Germany and thinking about my bike, I would often wonder if my bike was thinking about me too. LOL.
Noah’s birthday was a real success last week. He was spoilt rotten by everyone, he had a cracker of a day. I acquired an Olympic size trampoline (very second hand but he’s none the wiser…..) and painfully set it up with the help of my sister for his early and excitable wakeup.
I love how Evie gets me to hold her like a monkey and jump really hi saying “jump up to mummy” and we bounce really high on the “brand new trampoline” and try and touch the sky.
She’s decided mum is a fairy which is super cute. I’m amazed how much Evie misses Louise. Because little poppa’s has always been a daddy’s girl and I’ve always been her emotional support, I naively thought she would carry on with life pondering less about her mum.
She talks about “Mumma” all day every day which is great. I think it’s awesome that Lou is top of Evie’s mind. I know Louise used to get upset when Evie would do something like stub her toe or cry at something trivial (which she’s famous for) and she’d run past Lou, to me, for comfort.
“Lou – If you could see Evie pine for you now, you’re definitely her number one…..”
Lou had a big fear that Evie wouldn’t remember her. Fingers crossed, Evie’s memory combined with photos and stories will cement Lou in her young innocent brain.
Unfortunately, I know four dad’s, the same age as me, that have lost their wives in the last 13 months. Brian, a fellow college and university colleague. Roary, a friend from my secondary school’s arch-rival college. Craig, a work colleague from a decade ago. And Josh, a guy that I played rugby with and against. Josh and I did two big tours together to South Africa and South Amecia in the late 90’s. Proudly representing our country.
Each on of us poor MOFO’s has individually got two or more kids ranging from one to 10. All of our wives died of cancer. We’re all single dads.
Anyway, a good mate of mine and his wife have donated their lovely farm for the weekend so us five widowers can spend a weekend together. I think it will be great for the kids and who knows? probably some benefit for the single fathers too. The weekend in then bush is planned for early April.
I thought I’d mention this so that I can attempt to gain insight and document anything learned that could help me or others in the days ahead.
Have a fun weekend!
PS: I’ve got a good story to divulge about Noah and Evie’s talking teddy bear’s (with Lou’s voice). I’ll try and make some time tell the story next week.
Before you drifted off to sleep last night you said you wanted to “give Mumma a cuddle.” Evie then repeated the exact same words you said. Sure she wants to cuddle and kiss mummy as much as you do, but the reason she is your little mimicking parrot is that she emulates you. She thinks you’re the best.
It’s not just Evie that looks up to you, I do too, I think you’re amazing and if I was a six-year-old kid again, I’d want to be just like you. You have astonished me over the last six months. I am so proud to be your Dad.
You are so brave. In Germany, without a fuss, you allowed me to care for your mum all day every day while you hung out with Evie and Grandma. At night when you and Evie were desperate for me to stay, you knew Evie would be extremely upset if I left the apartment. The fact that you would say; “Daddy, when Evie is asleep, you can sneak out and go and look after mummy” still impresses me. It always will.
I broke a lot of promises to you in Germany while trying to keep mummy alive. You never got to go skiing and we never took a fast train to another city. We weren’t even meant to be in Germany, we were meant to be in Canada on a family holiday. For you, most days were Groundhog Day in a regional cold German suburb. You never complained.
Everyone loves you. You are kind, generous, emotional, thoughtful, funny and loving. You are endlessly praised by all.
Your Kindy teacher said last year; “You are wonderful. Thank you for adding positivity, happiness, and joy to KB. 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. Your bright smile lights up our classroom every day and we are so lucky to have you in KB.”
Yesterday your new 1G teacher said, “I love having Noah in my class.”
You’re a very special boy. The biggest founding reason you are so exceptional is because of your mum. Always remember she is the one that guided you to become who you are and why. If you ever feel a little off-track simply ask yourself, “how would mummy like me to be right now?”
Noah, this is your first birthday without your mum. I know you always hear me talk about how hard she tried to stay here on this earth and look after you. She wanted to care for you until you had kids of your own. In the coming years, I will detail how hard she also tried to bring you into this world. Years of failed attempts and doctors support so that she could grow you in her tummy. She always said to me she’s so glad it took that long and that we had perpetual unsuccessful bids because if we hadn’t of, we wouldn’t have ended up with you.
There aren’t enough words to describe how much your mum loved you. You loved her the same.
I know you will be a little trooper today and march off to school with a smile on your face, leaving people proud in your wake. Your grandpa has said since you could walk and talk; “that kid is going to be something special, ” and I know he means an overachiever in a field yet determined. Regardless of what you do in life, you are already something special.
I love you. I love you as much as your mummy did and you know that’s a lot.
Happy Birthday, Beautiful.
(I know there are some words in this letter that are not on your site word list but I’ll explain them so it all makes sense)
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.
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…….
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.
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.
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.
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.
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!
*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.
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.
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. 🤗
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 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.
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.
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………
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…….
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……
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.
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.
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.
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.
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.
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.
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.
Lou has been in 24-hour medical care with Professor Herzog since the 26th of December. We needed somewhere between treatments that can give Lou the medical support we can’t.
The private clinic is in Bad Salzhausen, 55km’s from where our apartment is in Bad Homburg.
Lou is in a double room so Lynda, Les or I stay take it in turns of keeping her company day and night. It hurts that she can’t be with the kids but it’s one of those hits you just have to wear on the chin.
Unfortunately, we can’t plan a day let alone a week right now, it’s practically hour by hour for decision making.
We’re happy with the clinic, the staff and their services. We just need to get her healthy so we can treat the liver.
Lou’s brain has been scrambled since Friday. This has only previously happened when her liver has been overloaded processing the chemotherapy with TACE. It’s been a little over three weeks since her last liver treatment so there wouldn’t be any chemo in her liver now.
A simple blood test measures how well the liver is performing its normal functions of producing protein and clearing bilirubin, a blood waste product. Hopefully her blood test today will show her liver is still in good working order.
I’m hoping her horrible symptoms are because she’s eaten very little in the last five days. Her digestive regularity is completely out the window too, so it could be a combination of these two. I actually don’t know.
She started on IV food last night. I really hope this helps.
It’s horrible when her brain is scrambled because she can’t communicate, she’s confused, delirious and scared. Physically Lou is the weakest she’s been.
Lou’s sister Elysia has been the driving force behind the acquisition of knowledge regarding personalised cancer treatment.
Once Lou’s bloods are elevated enough to continue treatment then the two primary drugs Elysia and I are keen to test are:
Epirubicin Hydrochloride and Everolimus.
Epirubicin is an anthracycline drug used for chemotherapy that has shown up in several tests that Lou’s tumours may have a sensitivity to. In combination with this, FEC is the only chemo Lou had a positive response with (August 2017). Out of the three agents in the FEC cocktail; 5FU and Cyclophosphamide don’t come up with high sensitivity but Epirubicin does. So Epirubicin should be part of the plan?!?!?
Everolimus (Afinitor) is an antineoplastic chemotherapy drug. This medication is classified as an “mTOR kinase inhibitor.” All of Lou’s tests highlighted the PI3K/AKT/mTOR as something to focus on. We are keen to test this ASAP as well ?!?!?!
The above two drugs are an initial focus point for Elysia and I to massage into the coming month’s treatment plan. I know that Epirubicin can be more toxic on the liver but if Lou could handle the drug then Epirubicin in TACE or RCT along with an oral Everolimus programme is a stone we would like to turn over.
The below are recent notes, from Elysia, to continue to understand, collaborate and discuss with the doctors. Easier said than done.
*Unfortunately we’re still a few years away until someone’s cancer journey is personalised from inception. It’s difficult to get options like the above into any form of action. Which I do understand the reasoning for.
Summary or Elysia’s notes:
“Dr Lim once said it is very hard to find who is the bus driver and who is the passenger… I have gone through all of Louise’s test results and come down to the conclusion that the ‘bus driver’ of her cancer is
EGFR (this is overexpressed in RGCC results 45%)
Pi3K > AKT > mTOR (this pathway is active in 40% of TNBC patients and was in all her test results)
maybe RAS (RGCC 40%) as well
AKT2 / mTOR
MOST trial – noted it was amplified – they suggested PI3/mTOR inhibitors
RGCC – 45% mTOR
FBXW7 – identified in FoundationOne
OncoDNA – mTOR treatment associated with clinical benefit
These are all connected along with FBXW7 (a tumour suppressor gene) which is not listed in the diagram.
Everolimus is massive for me, I have been harping on about it for a while (there is also an alternative being Temsirolimus) – both are Akt/mTOR + FBXW7 pathway inhibitors. I have in my notes that they are very strong drugs however all test results point to them. Dr Lim said we should seriously consider trying it.
Epirubicin and Doxorubicin (these were tested on the TOP2A gene alteration which is common in BC)
– both came up in RGCC and OncoDeep as a potential clinical benefit. They are Anthracycline chemos (Epirubicin is the E in FEC which is the only time Louise’s tumour shrunk). Both can have a negative effect on the heart so we would need an ECG before starting.
Others which have always been of interest are…
Pimozide – an antipsychotic drug suggested by Dr Kopic. This also inhibits the mTOR/Akt pathway – 50mg at night – this drug is not available in Australia for cancer use but can be purchased.
Erlotinib (not tested yet) – RAS and EGFR pathway inhibitors (EGFR 45% in RGCC)
Afatinib (15% in RGCC) – EGFR pathway inhibitors (EGFR 45% in RGCC) – Afatinib is used to treat EGFR/Her2 positive TNBC
A few questions I would be keen to hear the answers to…
Do they have any ideas to overcome the following? I have been reading up on it and there has been some significant movement in the past month…
MDR (multidrug resistance) – 55% RGCC
MDR1 – 45% RGCC
Is there the option to biopsy the liver if Vogel is in there to see if the makeup of the cancer has changed or if they could do their own testing to see if we have become Her2 or Her1 positive? (RGCC said Her1 55% positive)
Does Herzog do the laser treatment? I am certain he was using it for what has historically been a drug-resistant cancer
TP53 – is there any evolution in treatment options for this? It has to do with genetic instability which drives increased evolution of the cancer in response to treatment – or activate expression of downstream genes that inhibit growth and/or invasion, and thus function as a tumour suppressor. Some research has been released in the last month on ‘tumour protein p53’ but I am not scientific enough to be able to understand it.
I still have to research these further but they are all in my notes as potential options…
siRNA to target EGFR and RNA
Dendritic cell vaccination
Methylation of FBXW7 – is associated with a longer overall survival period in lymph node-positive breast cancer patients, although it is also associated with high-grade tumours (DNA methylation is a process by which methyl groups are added to the DNA molecule. Methylation can change the activity of a DNA segment without changing the sequence. When located in a gene promoter, DNA methylation typically acts to repress gene transcription.)
PTEN(15% on RGCC) acts as a tumour suppressor gene. Foundation One says PTEN is not present to antagonise PIk3 pathway and to fulfil its function as a tumour suppressor – is there a connection between this and mTOR?”
Louise was scheduled for her third round of TACE today but her bloods have continued to drop. Her platelets are 10 000 as we speak. A normal platelet count ranges from 150,000 to 450,000 (platelets per microliter of blood). So her platelets are 140 000 short of where we would like them to be……..
TACE or RCT?
Lou has had two rounds of TACE (Trans-Arterial percutaneous Chemo-Embolisation). She’s scheduled for four.
I believe the TACE we have done so far has been of benefit. After two rounds (half the liver each round) Lou has had some positive response. Her Pleural Effusion (water in the lungs ) has slowed. Her tumour cell activity has also decreased, which means some aggression has been removed from the liver tumour metastasis. As you know, the metastasis in young triple negative breast cancer patients is angry as all hell.
The decision junction we’re at now is TACE or RCT? While there are several different forms of RCT, the one proposed for Louise is; Isolated Perfusion with chemofiltration.
The big question is; which option/facility/doctor provides Lou with a better chance of taking down the tumours? Unfortunately, not ever being able to know the answer to this question makes for a tough decision.
I’m very mindful of changing treatments halfway through, so I want to leave both doors open until a progress scan provides more data on our current position. We will acquire a liver MRI when her platelets are on their way back up (>100 000), hopefully within a week.
1.) Professor Vogl and Trans-Arterial Chemo-Embolisation(TACE) Of The Liver
Up to 75% of the normal liver tissue is perfused by the portal venous system and only 25% is supplied by arteries. On the contrary, liver tumors are supplied up to 95% by arteries. Hence chemoembolisation of liver arteries lead to development of ischemic necrosis in the tumor region while the remaining normal liver tissue is spared by sufficient perfusion through the portal venous system.
The half-life of a chemotherapeutic agent is increased by hours to weeks through the stoppage of blood supply.
The procedure as I know it: After local anaesthesia, a puncture is made into the femoral artery in the inguinal region. Doing this, a small femoral sheath is usually placed in the artery through which different catheters or guide-wires can be inserted. The abdominal aorta with its various branches is visualised. Then a very small catheter (micro catheter) is passed through the liver artery into the artery supplying the tumour and the chemoembolisation is performed. You’re given pain meds through infusion during the procedure.
The cocktail is usually strong chemo agents. For Louise, for both her rounds, she had 9.88mg of Mitomycin C, 101,96mg Irinotecan, 50,12mg Cisplatin. This is combined with Lipiodol and Spherex, these two ingredients block the blood vessels.
At the end of TACE Louise was placed in observation for about three hours during which possible complications can be diagnosed and treated (which she’s never needed). She also had an MRI before the procedure and a CT after to evaluate the success of the treatment and to rule out a complication.
This technique allows the toxicity to be >80 times a systemic dose.
Most sources I’ve read say TACE has minimal adverse effects with very little stress for the patient. This, unfortunately, hasn’t been the case with Louise. The side effects for Louise have been severe. They include:
Inability to move/comatose sleep, for well over a week
Doesn’t eat and barely drinks = dehydration
Weight loss – up to 5kg’s
Scrambled brain like she’s extremely drunk, these side effects last for two weeks
Key Blood results decrease significantly, apart from the usual side effects and danger this has, it also delays the next treatment significantly
Massive mental hit
The brain issues are likely to get worse with each treatment, based on treatment one and two. Having her mind scrambled for weeks will have a big effect on her motivation and ability to fight.
2.) Professor Aigner and Regional Chemotherapy (RCT) – Isolated Perfusion of The Liver
In the method suggested for Louise, an arterial port catheter is implanted directly into the tumour-supplying vessel during surgery. This enables the tumour to be treated with the chemo agent over three to four days. This is combined with isolated perfusion where the liver is isolated with a catheter system, so the high cytostatic concentration flows through the liver by means of an external pump.
At the same time heat is supplied to the tumour (hyperthermia) and the oxygen content of the blood supplied to the tumour is reduced.
This method is combined with chemofiltration (extracorporeal detoxification which is like dialysis) to remove excessive amounts of chemotherapeutic agents in the systemic circulation. This is done at the completion of the isolated perfusion phase.
This technique also allows the toxicity to be >80 times higher than a systemic dose.
None of Aigner’s patients experiences the brain issues Lou experienced with TACE and his patients have a much less severe reaction. “95% have few side effects.”
We’re not guaranteed that Lou will have minimal side effects (as his treating team predicts) but I envisage they will be considerably less.
What’s holding us back from making a decision?
We don’t yet know how effective the two TACE sessions have been
An MRI will assist with this
If Lou has had a reduction in tumour size then we should consider continuing the next two rounds with Vogl
The door with Vogl could close if we go with Aigner
I will ask Vogl if this is the case
We would be changing strategies without completing the current prescribed regime
We don’t know if Aigner’s treatments are as effective as Vogl (It’s something we will never know)
I think that they are as effective but maybe I just want to believe this so its apples for apples on the positive treatment output….
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.
How is Lou Doing? It’s a question I get asked many times a day. Unfortunately for months now I haven’t been able to give a positive response. In most instances I find myself adding to the answer; “she is doing well considering…”
While her physical condition obviously isn’t good, I feel it’s a little more constant than the mental. The mental is burdened with so many factors that make it hard for her to have psychological control.
Even though breast cancer is one of the most common carcinomas and one of the main causes of cancer-related death worldwide. The vast majority (like 85%) of breast cancer patients, will live for more than ten years. And this number seems to be constantly improving, especially for breast cancer patients with a hormone or ‘human epidermal growth factor’ receptor.
The type of breast cancer bringing the median statistics down is triple-negative. Triple-negative (TNBC) accounts for approximately 15% of breast cancer cases. The absence of estrogen, progesterone and human epidermal receptor 2 (HER2) in malignant cells reduces treatment options and increases the risk of recurrence and death, especially in the first 3–5 years.
TNBC is super crazy aggressive, especially in young patients like Louise. For many TNBC patients, chemotherapy will treat the disease, which is great because chemo is the “only possible treatment option.”
If your TNBC turns up somewhere else in the body, i.e. it becomes metastatic (MTNBC), Google online sources will tell you that you have a year or less left on this earth i.e you’re fucked. And if you’re classified as chemorefractory, i.e your cancer doesn’t respond to chemotherapy, well then guess what? your double fucked.
Louise is young, she’s MTNBC and she’s chemorefractory. If you think about this alone, you might be able to grasp the enormity of Lou’s mental strain. You combine this with the punishment I detailed in her fundraiser video and you are living in a nightmare, a nightmare with no dawn to wake you from the terror.
Louise’s cancer is so aggressive that her tumours have had their biggest growth during treatment, especially treatment that affects her holistic health. Louise’s primary liver tumour doubled in size during her IO trial and then grew another 18% under a very toxic systemic chemotherapy session, that was intended to stop its growth. I truly believe it wasn’t the treatment but the debilitating effects of the treatment and the inability to exercise during these periods that saw such devastating regression. There are publications that back this theory up.
So where are we at right now with the liver? You can’t live a day without a liver so this is obviously our biggest concern.
The good news is that her liver is still functioning well. The bad news is that her left lobe has many metastatic lesions on it, rendering about 30% of it affected by cancer. The bad-bad news is that her right lobe is 80% covered in tumours. One of those tumours alone is 14.5 cm’s long. The mass of these tumours combined with inflammation has almost doubled the size of her liver. This is the source of much physical pain.
These tumours pilfer blood supply and nutrients too.
How does this current condition and its subsequent side effects play out? To be frank, Lou hasn’t been happy for several months. The kids are the only remedy that put the occasional smile on her face. She’s physically and mentally exhausted and she’s incredibly scared. She is still fighting though.
The last two rounds of TACE have been incredibly taxing on her body and mind. It’s painful and heartwrenching to watch. She’s still being extremely brave.
We do need to keep treating the liver however we can’t schedule any more treatments until her platelets increase. Once the platelets rise we will do another MRI which will help determine our next move. Our next move currently consists of two primary options. A big decision weighing on her mind as I type this post.
In regards to liver cancer improvements. Louise had a 7% reduction in tumour volume after the first TACE. The two consecutive TACE sessions have also reduced chest fluid activity along with her tumour tissue “stabilising” and tumour cell “activity becoming less.” It’s a positive that the tumour hasn’t grown in Germany, especially after non-stop growth since early September. It’s still not enough, way too much pain for little gain.
We do have some bigger gains around the corner, I can feel it.
If we talk about the liver exclusively, let alone all the other issues and ailments, how is Lou doing? Well, she’s doing bloody well considering.
Louise has had the best three days in a long long time.
She’s battling some lymphedema today which tarnished a reasonably clear side effect run. And towards the end of the day, her mind was carrying the weight of our next treatment move but she looked tip-top and has made some great physical gains since Wednesday.
I’d love to see the positive momentum build before the next liver session. Whatever that may be…….
Louise had a really good day today. 🤗 It’s the best day I can recall since the 11th of October. Let me just ask Google how many days that is…………………………………. 77. Boy. That’s waaaaaaaaay too long, 77 days is a very long time to feel like rubbish.
Lou had 1.2 litres drained from her right lung yesterday which was a big help in her feeling well.
We’ve just had 24 hours without an ailment bringing us down. I really hope we can make it 48. 🙏
I’ll post a detailed update on her health over the weekend. Her bloods are still down and we know we have a garden of cancer/tumours on the liver which we’re battling, but I just thought I would let everyone know that today was a good day. 👊🏾👊🏾👊🏾
I am a massive believer that the mind is the majority contributor to the success of any kind. If you’re not feeling well, confident, healthy and happy, the journey is made that much harder.