Metastatic Triple Negative Breast Cancer Blog I Louise DeCelis

Lou’s Blog

In Spite Of Ourselves

How awesome was our wedding? It was a three-day event. The bridal team did a flash mob dance to LMFAO “Party Rock” and Michael Jacksons’s “Thriller.” So much fun. I think the highlife was Jon and Elysia singing this song by John Prine: They nailed it! Xx

#NowIveGotThis

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………  Xxxxx
Evie's Banger Song

Evie’s Non Stop About Her Mum

Evie asked me yesterday morning; “when is mummy not going to be died anymore?.” She is still grappling with her understanding around the sense of time which is simply an age thing. She cuddles and smells Lou’s things very passionately, as though she is cuddling mummy herself.  She puts on
The After Life with Tony played by Ricky Gervais

The After Life

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
letter from evies teacher, Emily

Love My Little Poppa

I thought I would share a letter I received last Wednesday from Evie’s primary daycare teacher, Emily. Evie has a virus at the moment. She is holding up pretty well. Poor little Evie Pops. She really misses her mum.

How Hard Do You Think It Would Be To Write A Song?

I really like the lyrics to this song: 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

50 Days Since Lou Departed, 111 Days Between Bike Rides And Jumping Up To The Stars With Evie Pops

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
Noah's first day at school, 2018

Dear Noah, Happy Birthday!!

Dear Noah, Happy Birthday. Six years old today, wow. 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
Is mummy a robot?

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

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
I still can't believe she's gone

I still can’t believe it.
Louise DeCelis and Evie at home

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

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.
Louise DeCelis loved yellow....

A Well Deserved Send-Off For Lou Lou

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
Louise sailing off into the sunset.

A Slideshow Of Our Princess Gladiator

I’ve got time, I’ve got love, Got confidence you’ll rise above, Give me a minute to hold my girl, Give me a minute to hold my girl………………………………………………………
Louise and I's favourite little town.

“Our Favourite Little Town” – Telluride Colorado

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
Louise and her family

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

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

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
Thank You Noah And Evie Byrne

Dear Noah And Evie, Thank You!!

Noah wants to go on another date with his mumma and watch the sunset and drink lemonade.
My best friend louise decelis

Hold My Girl…

Noah and Evie love singing this song and swapping out “my girl” for “mumma…” I can’t wait to hold you again Lou Lou when my job is done here.
Beautiful Louise

Today Our Hearts Break

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
Louise DeCelis and Elysia McConkey at balmoral beach

Sisters United

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
Some flowers evie picked for her "mumma"

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

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
louise-decelis-with-deer horns-usa-holiday

When it all comes clear, when the wind is settled I’ll be here, you know…..

Just some pics of Lou. Not for any particular reason. Lot’s of memories.  Always happy. Always full of life. I’m on bedside care duties tonight. Hopefully, her mum and dad get some rest. xx    
Louise and Dom on Evie's fourth birthday party

I Cried Today

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

Hospital Care Update I Special Hospital Dr. Herzog / Bad Salzhausen

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

I’m Keen For The Results Of Lou’s Liver Function Test Today

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

Struggle Street

Lou had a good few days to finish off 2018, which we’re very grateful for. She’s struggling right now though. She has no energy, she’s extremely weak and has non-stop nausea. Mentally she’s in the basement. She’s very emotional. It’s difficult to watch when there isn’t anything you can do make

Personalised Cancer Treatment Options For Louise

We’ve commissioned a number of blood and tumour molecular screening/profiling tests over the last six months, with the aim to source potential treatment options for Louise. Tests include: RGCC mOST Foundation One; and OncoDEEP (summaries for the above reports in red + access to the full reports in Lou’s treatment history)

A Decision Point For The Next Liver Treatment

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

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

How Is Lou Doing And How Is Her Liver?

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

That’s A Hat-rick, Three Good Days Of Improved General Health

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

A Good Day 😊

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

I Just Thought I’d Post This Amazing Image Of The Burghausen Castle

The Burghausen Castle is about a kilometre down the river from Lou’s clinic. Here a couple more: (click to enlarge) Yeah, so Australia didn’t even have a building on it’s land until about 800 years after this castle was founded, in 1025…… And the locals will tell you its the

BELIEF Combined With PERSPECTIVE Is The Ingredients Needed I Merry Christmas

Merry Christmas everyone, from the De-Byrne’s, for this Christmas and the next. We love You! 👨‍👩‍👧‍👦 🤗 Cherish your family today and every day. Be aware of and appreciate the great things you have. 💗

The Generosity Follows Us Around The Globe

🙏🙌🏽😗💗👊🏾🤗🙏🙌🏽😗💗👊🏾🙏  Noah And Evie making Christmas cookies with Kirsten and her kids. Yum Yum!

Louise Got Very Sick Very Quickly After The Last TACE

Well, that didn’t go well. Louise went downhill faster and harder than me on my motorcycle. On Friday after her chemotherapy liver treatment, I made a prediction she would start spiralling on Monday, with the hope it wasn’t too severe this time. Well, nausea and vomiting started prematurely on Friday

Where Are We At Right Now? Hmm..

Dominic Byrne   
1 Comment
Dec 14
Some quotes from Professor T Vogl I jotted down Verbatim: “the amount of tumour tissue in the pleura is better, the reduction of fluid is also becoming now less.” “With the liver, we always have a problem, we treat one area and of course, we cannot treat the whole liver,  other areas are still in activity. 

Liver Treatment And progress Scans Today

Dominic Byrne   
1 Comment
Dec 14
 Greyhound Starting Gates We’re in dogbox number nine Scan day today! Breathing through the pain…
Louise getting a blood transfusion in the Frankfurt University Hospital

26 Days In Germany

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

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

TODAY IS THE DAY – PARTY FOR LOU!

Good morning Australia 🇦🇺. Lou had another 1.5 litres of fluid removed from her right lung yesterday. That’s twice in seven days. 😩 The good news is that she had her best day today since we have been in Germany, and we’ve been here for three weeks already……..I know right.

A Kick In The Face When You’re Down

So Lou’s right lung is full of fluid again. If you look up side effects for “pleural effusion” you will get: Shortness of breath A dry cough Pain A feeling of chest heaviness or tightness Inability to lie flat Inability to exercise (or move in our instance) Generally feeling unwell

Lou Is Really Struggling

So we’ve finally moved into an apartment, we’re in a beautiful town called, Bad Homburg. It’s a close distance to the two clinics we visit daily. The kids now have play space with neighbouring parks. Hopefully, we get a little time to explore and familiarise ourselves with the area. It

Our First Unplanned Trip To A German Hospital

That’s not a bag of urine, beer or ice tea. It’s a litre of fluid drained from Lou’s right lung. The reason she hasn’t been eating and has had 24/7 nausea. The tube was still attached in the pic, and the bag drained another .5 of a litre making it a

The Online Auction Is a Go!

9 more sleeps until Lou’s party. We’ve sold 410 tickets to the event, there are 139 auction items online with many more to be added. Products are open for instant buy and bidding. (yep, click on the hammer) Lou’s village has spoken. No wonder this is Noah’s favourite song: Crank up

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

Current Treatment Regime – Frankfurt

The objective is to achieve four individual regional chemo liver sessions (half the liver per session) with Professor Vogle between November and January.  In between these sessions, receive as much complementary therapy as possible. Univ. Prof. Dr. med. Thomas J. Vogl Transarterial chemoembolization/chemoperfusion; Abdomen Rotation Vom. Puncture of the femoral.
A small win with a ling way to go.

A Win Is A Win, Even If It’s Small

Lou is still very unwell but we had our first small win yesterday. Her big tumour on her liver that has been growing uncontrollably has shrunk by 5% in surface area and 7% in volume. This occurred over a seven day period. It is a small win and hopefully validation we
We're nit having much success but we are still shooting

Fick Krebs!

Dominic Byrne   
1 Comment
Nov 22
Lou’s second round of liver treatment scheduled for today was postponed until the first week of December. She’s been extremely unwell since we arrived, with little to zero energy. Her white and red blood cell numbers are down, they’re a tad high for transfusions but low enough to keep her on