Our First Unplanned Trip To A German Hospital
Nov28
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!
Nov27
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
Nov24
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
Nov23
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 Win Is A Win, Even If It’s Small
Nov23
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
Fick Krebs!
Nov22
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
Deutschland Update
Nov19
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
RCT (Regional Chemotherapy), The Objective Is To Buy More Time
Nov11
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
When We Beat This Horrendous Disease You Would Have All Contributed
Nov10
🙏🙏🙏👊🏾👊🏾👊🏾🤗🤗🤗👨⚕️👨⚕️👨⚕️🤞🤞🤞 💓💓💓 Thank You!!
Always and forever I’ll be your Mumma XoX
Nov08
Heart melting over this drawing Noah gave me today. It’s mummy’s cancer battle. Noah tells me the good cells outnumber the bad cells 10 to one and they win!!! He took me through this very detailed battle plan and it sounds like a winner to me!! The three large colored
Help
Nov03
Dear family and friends, the time has come for us to ask for your help. The community that you have created around us is phenomenal. It’s nurturing, energising, committed, sympathetic, and full of an immeasurable amount of love. It’s more than we could have ever hoped for. Having this village
Our Options In Australia Are Running Pretty Thin
Nov02
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
Two Hours On My Shrink
Oct31
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,
My Week In Numbers
Oct29
All the preparation in the world cannot beat the demon that is chemo. It might start ok, and you think “hey maybe this time I’m going to get through this relatively unharmed” and then SMACK, SMACK and once you are down SMAAAAACK!!!!! There is no such thing as chemo and
Fundraiser For Lou!
Oct23
When we started this blog on the 11th August we never expected we’d be posting about raising funds for Lou. We also never expected that chemotherapy, surgery, radiation, more chemo, more radiation and immunotherapy wouldn’t work either. With the ongoing expense of fighting cancer now outweighing our diminishing income. We’re overcoming
SAVE THIS DATE: 6 DECEMBER 2018 I 6PM I GREENWOOD HOTEL
Oct23
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
Treatment Position
Oct18
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
The Immunotherapy Trial Didn’t Work
Oct17
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
Give Blood, Make The Effort And Save Lives
Oct15
Have you ever needed a blood transfusion? Do you donate blood regularly? 💉 🌡 If you’re answer to question 2 is no, and you have no medical reason, then just consider for a moment that there was no blood to give me today. Or no blood for your loved ones
To Be Honest, It’s Been a Shit Month
Oct14
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
Sandakan Death March
Oct12
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
The Little Ratbags are Happy, I’m Happy
Sep29
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
How To Beat Metastatic Triple Negative Breast Cancer
Sep24
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
Treatment Update September 2018
Sep19
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
My Tidal Thoughts
Sep17
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,
A Few Days On The Snow – Just What The Doctor Ordered
Sep17
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
R U OK?
Sep16
Three days ago I had a full blown panic attack in the middle of a crowded flight, that had only just taken off, trolleys blocking both my ways out. I knew it was coming. It started with shortness of breath, a warm feeling crawling up all my limbs, nausea, shoes
Evie Harper Byrne, So Much Character And A lot of Clanger
Aug31
A little bit of humour leading into the weekend. Lou had a week to herself in Cleanland (Queensland), relaxing and preparing for the next phase of treatment. She’s feeling tip-top so, why not a little laugh. Evie Pops loves a mashup. She has an amazing, un-deliberate ability to mash together not
Today Australia Has A New PM, Who Gives a $*#! When Noah is Kicking Arse
Aug24
I didn’t know it was possible to be so proud of a five-year-olds achievement. Today Noah was presented, in front of his whole school, the Kindergarten Blue Award. Days like this make you feel like a million dollars. Noah, I honestly don’t care what profession you choose, what sport you play, what
A Little Bit About The MoST Trial
Aug23
So Louise is enroled in the Immunotherapy Trial, which she starts on September 5. This is an attempt to assist her immune system to find and destroy cancer cells. She is also simultaneously participating in the MoST trial, which is quite different and essentially starts out as a research study. MoST
A Compliment For Louise
Aug22
So yesterday at our Immunotherapy kick-off meeting, Professor Kefford gave Lou a quality compliment. Not bad coming from someone who has been working with cancer and treating cancer patients with chemotherapy, radiation and Immunotherapy, from before Lou was born. “I’ve been doing this job for forty years and haven’t seen anyone that looks as
I don’t know why this is?
Aug21
Even though my medical experience is shallow, from my observation, there is a massive divide between non-traditional and traditional medicine. Surely there could be major benefits, for patients, if there were collaboration and co-creation of treatments. I don’t know why this is? Other countries seem to be so much more
Never Ever Give Up, Never
Aug21
I thought I’d share a personal email I sent Lou at the beginning of this cancer journey. Umm yep, I send my wife emails that are non-work/admin related. Somehow my keyboard knows what to say when my mouth doesn’t. If it wasn’t for modern comm’s technology (SMS, email, social etc)
Immunotherapy Explained, As Best I Can Anways
Aug21
Immunotherapy helps your immune system find and destroy cancer cells. I’ve read in detail and it gets pretty technical, my head was spinning. The best summary is that cancer cells have molecules on their surface that can be detected by the immune system (tumour antigens). The immunotherapy directs the immune
Woo Hoo, We Got Into An Immunotherapy Trial
Aug20
Yay, Lou was accepted into an Immunotherapy trial today. A tiny win in our cancer war. The Good The study might work. Fingers and toes crossed. Pray to your gods. If the study doesn’t work for us, the knowledge will help people with advanced cancer in the future. That’s a
Week Two: Appointments And Firming Up Plan Of Attack
Aug19
We kicked off with a biopsy on Monday morning (13 August). Three samples were taken from Lou’s ninth rib. One was a standard sample, one for the Immunotherapy Trial and one for the MoST trial. On Tuesday Lou started Radiotherapy. This localised radiation was continued on Tuesday, Wednesday, Thursday and
Yesterday Was A Bad Day On The Rollercoaster
Aug16
Yesterday was a bad day on the rollercoaster. Tough, overwhelming, painful and exhausting. I want to tell you all about it but before I do I want to thank every single one of the 502+ people who have shared our post looking for other women like me. It’s unbelievable how
How to tell a five year old his mum has cancer, and it’s serious
Aug15
Without anyone telling Noah that mummy was in a precarious situation, he knew something was up. Five-year-olds are way more clever than often credited. They might be doing simple sight-words and basic maths, but they know a hell of a lot. In a meditation class at school last Tuesday, Noah
Recommended Diet
Aug13
Lou’s Naturapath has recommended she go on the Keto Diet + Red Meat. See attachments: Louise’s Diet – Ketogenic Diet Nutritional Advice Oligo Scan We are also expecting an RGCC test to be conducted this week which will produce an individual profile of both chemotherapeutic drugs and natural substances (including diet) that
I Want to Speak With ‘Triple Negative Metastatic Breast Cancer Patients’ That Have Responded To Treatment!
Aug13
I am on a mission to find anyone that: Has been diagnosed with triple negative breast cancer They were treated with chemotherapy The chemotherapy didn’t work (cancer turned up somewhere else i.e metastatic) They are now responding positively to another/different treatment option (Traditional and/or Non-Traditional medicine) I’m super keen to talk
Week One: Appointments For Plan Of Attack
Aug12
Professor John Boyages I 7 August Based on Louise’s treatment summary you approved, there wasn’t any variation to your recommendation of treatment The only thing John was keen to do was a PET scan The PET scan didn’t seem to be a priority for Dr Morgia, Dr Forster or Dr
The Immunotherapy Trial That Louise Is Likely To Start is The JAVELIN Medley
Aug11
JAVELIN Medley: ANZCTR Website & Australian Cancer Trials Website Louise’s likely schedule after her five rounds of radiotherapy is Immunotherapy with a Parp Inhibitor: Immunotherapy – Immunotherapy is a type of cancer treatment which assists the body’s immune system to fight cancer. Immunotherapy can boost the immune system to work better against cancer or
So What Does The Last Seven Days Look Like?
Aug11
It’s been seven days since Lou’s oncologist dropped the mother of all bombs on our lives. Yeah, we’d been living with cancer for over a year. Yeah, Lou had been brutalised with 14 months of barbaric treatment. Yeah, it disrupted our lives as we ran the cancer gauntlet while trying
Louise DeCelis’s History of Diagnosis And Treatments For Triple Negative Breast Cancer
Aug06
Diagnosis date: June 2017 – Stage IIA (cT2N0) triple negative invasive ductal carcinoma of the left breast. 22mm. Ki67 60% Chemo: Started 12 July 2017 – Neo-adjuvant chemotherapy Three rounds of FEC and three rounds of D (12Jul17 – 24Oct17) From my memory, the tumour shrunk slightly in the first
Oncologist Recommendation For Immediate Treatment
Aug03
Biopsy To confirm receptor status and provide tissue for further testing re clinical trial eligibility Consider radiotherapy to rib lesion for pain relief (best to do early rather than need to interrupt systemic treatment) Dr Marita Morgia’s team to arrange appointment Clinical trial JAVELIN PARP Medley trial (avelumab plus talazoparib)–
Why TNBC Is Such A Biatch!
Jul22
When you first find out that you have breast cancer, your doctor searches for the presence or absence of three receptors, proteins that live inside or on the surface of a cell and bind to something in the body to cause the cell to react. You may have heard of
What Is Cancer? Do You Actually Know The Answer?
Jul21
If you or someone close to you has been diagnosed with cancer, you know how overwhelming it can feel. Maybe you’re also getting a lot of confusing information and advice. The more you know, the more confident you’ll feel making decisions. That’s the way I see it. If you asked
Visitors Book
Jul19
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