FUNERAL DETAILS: Date: Friday the 25th Of January Time: 10:30 am Location: St Mary’s, 264 Miller Street, North Sydney CELEBRATION OF LOU: Following the service, The Greenwood Hotel, North Sydney Dress as you please to the funeral. Don’t feel you have to wear traditional black. Lou always looked stylish, she was always in colour. Feel free to…
Noah wants to go on another date with his mumma and watch the sunset and drink lemonade.
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.
Today our hearts break, some into shattered irreparable pieces. We’ll live another day but forever with a void gauged from our hearts. You’re at peace now Beautiful Warrior. Watch over Noah and Evie wherever you rest. I will ensure they continue to grow into special people, just like their “mumma”. I said on the day we…
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…
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…
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
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…
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…
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…
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 her feel one bit healthier.…
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) Lou’s sister Elysia has been…
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…
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…
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…
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…
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…
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 longest castle in the world.…
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. 💗
🙏🙌🏽😗💗👊🏾🤗🙏🙌🏽😗💗👊🏾🙏
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 night. Then on Saturday, we…
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. Overall it’s now stabilising more…
We’re closing in on a month in Germany, I’m honestly not sure if the time has gone fast or slow. Being in a foreign country, a place I’ve never previously visited, a place with much to do and see but it’s somewhat of a blur. On occasions, you get a minute to appreciate some architecture, heritage, the…
If YOU donated $1 or $1000, if YOU purchased a book for $50 or successfully bid $10, 000 on the Yacht, the gratitude from Lou and her family is as immense. As mentioned in the auction booklet, EVERYONE’S contribution is a true testament that the whole is greater than the sum of its parts. Believing As…
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. Hopefully, this means she can…
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 (Understatement) She fits that textbook…
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 feels very German. It’s beautiful.…
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 rounded 1.5-litre, collected through thoracentesis.…
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 the volume and listen to…
It’s only 8pm in Frankfurt but the kids and Lou have been out for an hour. It’s blissfully quiet. Just that very faint hotel murmur, humming somewhere unidentifiable in the background. I’d be lying if I said I didn’t want to be waking in my own home right now, getting Noah dressed in his budgies so he…
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. Introduction of a 5F lock.…
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 are doing the right things…
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 struggle street. She’s fatigued and…
It was a very long journey door-to-door. Lou got here as good as we’d hoped and the kids were absolute champions. I couldn’t have asked for more. We’ve been here for three days. She’s had one targeted treatment session on the liver with another scheduled for Thursday. She starts some full body treatment today as…
I’m attempting to talk about RCT, I think you’ll find it hard to comprehend while Evie is busy “on the phone.” 😂 I do pretty well at staying on track. (you’ll see her walking around in the background “talking to her cousin Billy” – classic) Hey Evie, the phone is upside down! I think this…
🙏🙏🙏👊🏾👊🏾👊🏾🤗🤗🤗👨⚕️👨⚕️👨⚕️🤞🤞🤞 💓💓💓 Thank You!!
It’s the first week of November, this is the week that we were meant to be reviewing the success of the Immunotherapy (IO) trial. The original plan was to schedule the scans and decide if we were to continue with the trial or not. Well as you know the cancer snuck up behind Lou and…
I just spent two hours at the track and I’ve reset my brain. I know some people, actually a lot of people, probably wonder why I participate in action sports that come with a high risk of injury. Especially now that I’m far from the reckless age of a teenager, and double especially that my…
Remember those wild Thursday nights in the late 90’s, early 00’s at the Greenwood Hotel? I sure do. We’re having another one, all for Lou. Put the date in your diary now. Let’s make it a sellout. While all the details are to follow, if you or anyone you know can source an auction item please…
Lou is officially off the trial as her primary liver tumour has doubled in size and she has more lesions. Her three Aussie Onco’s advise we start chemo on Monday (gemcitabine and carboplatin). The positive’s are: We don’t have a better option right now It is a combination that has worked for TNBC patients before…
The path we were on has lead to nowhere. We are in no better position than the original diagnoses in June 2017 or learning of the disease spreading in August. In fact, our situation is much more inauspicious. A little draconian I know, but that’s how it is. Due to an ongoing adverse reaction to treatment, plagued…
I was just looking at my calendar and thinking, we’ve had a bad run. Yep, Fuck You Cancer, you’re making us work for it. Lou’s only had a few good days since 10 September. It’s mainly the Paarp pills that are causing severe fatigue, nausea, anxiety and pain. It’s a real kick in the face when…
11/October/2018 In two weeks, if Lou is in satisfactory health with her current treatment plan, I’m going on a journey. My dad, brother and I are going to be rafting, trekking and bike riding The Borneo jungle, Coast to Coast. When cancer becomes your life, it helps to relate other peoples struggles to your own. There…
So this is me on Sunday morning (no makeup), it’s early, the sun hasn’t even graced us with its presence. I’m 41 and still get excited about the day ahead when I know it’s going to be fun. Evie and Noah are asleep, I do want them to wake but I remain very still as…
So you want to be cancer free, what are you doing about it? Minute by minute, play by play? You need to imagine your success, visualize what you want, feel it. You must be focused and know exactly what you need to get from here to there. You need to make your goals attainable, broken…
Lou’s just shy of seven weeks since going from a stage one cancer patient to a stage four, In a single day. We’ve talked to dozens of subject matter experts during this time and we’ve learnt a stack of information while being simultaneously guided with treatment. Lou had a face to face with Manuela Boyle on…
Your brain covers a lot of distance in many different directions when mortality is on your doorstep. I truly believe Lou will be around much longer than the ominous sentence most pundits prescribe. But when time is an unknown, it keeps your brain humming. If you knew you had months, years or decades, you would…
My brother Happy and I had the best few days on the snow, in the sun, with Faith and Noah. What an escape. Alpine air in the lungs, fast turns and family time. #Winning
