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.
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.
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 went to emergency because she couldn’t manage her pain. Then after five days of continuous comatose-sleep, not eating and most alarmingly, the delirious state of confusion, slurred speech and incoherent conversation, it was time to get her into 24-hour care. In hindsight, she should have been in professional care since the procedure.
Lou didn’t want to go to mainstream emergency hospital care and I didn’t want to take her to any clinic, so we had a quick family discussion and I bundled her in the car with her pillow and dooner and drove to Burghausen, close to the Austrian border. The only positive of her being so whacked is that I could make use of the autobahn without her breaking my balls.
Six hours in the car and we were at the Medias Klinikum and in a consult with prof. Dr. med. Karl R. Aigner (who I had connected with in October). Then we had Lou on some fluids and overnight monitored care. It was five days overdue but I’m happy to shoulder the poor judgment and responsibility. She’s here now and that’s the main thing.
This morning, they x-rayed her chest to assess her pleural effusion and also took blood samples to pathology with the results due back today.
Do you know I spent a couple of weeks in a hospital far from here, the university hospital in Innsbruck? It was about a month after I met Lou. Yeah, a “skiing accident.” She was still courting me 😉, so I remember talking to Lou on the hospital pay phone. They didn’t have any English stations on the TV and I was in traction for a few days, it sucked. At least we have two rubbish English stations here now. I also remember sneaking out of the Innsbruck hospital and walking a few kilometres along the river to get a McDonald’s soft serve. I was struggling with the hospital food and my jaw was freshly wired. It’s an interesting and funny story, remind me to divulge one day…….. Sorry, sidetracked, back to Lou.
In all honesty, I don’t mind caring for Lou 24×7 but the only medical experience I have is the dozens of time I have been an inpatient. So a few times lately, when she hasn’t budged for hours and I find myself checking to see if she is breathing and warm, I say to myself, “what the fuck is going on? How are we in this position right now and why am I researching on the internet at 1 am to see why her brain isn’t working and if it’s going to recover. It’s a crazy world sometimes and we’re defiantly in the depths of its ugliness.
So the short-term objective is to get Lou well enough to have a family Christmas back in Frankfurt. Lou’s mum Lynda is shouldering the kids care right now in our Bad Humberg Airbnb and Lou and I want to get back for Christmas Eve. Most importantly to make sure Santa comes by that night. Noah can write now so his wish lists on route to the north pole are pages long out of control. We better be there to answer him if a select few of his requests are not delivered on the 25th.
So I sign this post off from a hospital bed, lined up next to Lou’s, while she receives a big bag of liquid food through her chest port. She seems at ease in the comfort of care here. She’s eaten a little today, she’s still talking nonsense but the colour has returned to her face and I believe she’s on a north-east pointing recovery-trajectory.
We’re closing in on a month in Germany, I’m honestly not sure if the time has gone fast or slow. Being in a foreign country, a place I’ve never previously visited, a place with much to do and see but it’s somewhat of a blur.
On occasions, you get a minute to appreciate some architecture, heritage, the landscape or some history but mostly you live in a distracted space consumed by the reason you’re here.
The Good: Lou’s health is the best it’s been since arrival. She’s been out of the apartment for small adventures every day since Wednesday. She’s been eating too which is essential. Her brain function and memory have improved out of sight from a week ago.
The Bad: The fluid is building in the chest again. She’s scheduled to have it removed on Wednesday afternoon. Until we get on top of the liver tumours, it’s an issue that will continue to haunt.
The Ugly: The pain. Lou’s got pain in her liver and back. Pain is a constant reminder of the nightmare you are trying to get a reprieve from.
Despite the good, bad and ugly, we’re always determined to make sure the kids are comfortable. Lynda, Les, Lou and myself all work hard to ensure they’re happy and they are. Noah and Evie are far from their own home, cousins and friends but they are being champions. I’m very proud.
Today we decorated our Christmas tree, it’s an absolute monster of a tree and perfect in stature.
Lou has a big week this week with the other half of the liver scheduled for local chemo/TASE on Friday. Progress scans will also detail where we’re at.
If YOU donated $1 or $1000, if YOU purchased a book for $50 or successfully bid $10, 000 on the Yacht, the gratitude from Lou and her family is as immense.
As mentioned in the auction booklet, EVERYONE’S contribution is a true testament that the whole is greater than the sum of its parts. Believing As One. Stronger As One. Succeeding As One.
There was one single detail that would have improved the night and that would have been the presence of Lou. None the less, the pressure cooker of love was felt across the oceans and into Europe, buoying Lou when she’s needed it most.
Louise and I both received numerous messages mentioning the energy that was present in the Greenwood on Thursday night. The glimpses we saw of the crowd streamed through Jon’s phone was astounding. Simply amazing.
Thank YOU so much for attending the party. For knowing that Lou wasn’t going to attend but still being there with bells on. YOUR friendship, the respect YOU have for her determined battle, YOUR unwavering support will continue to be the nucleus that moves her toward the possibility of remission. Thank YOU.
YOU have afforded Lou to be in Germany, with her family, to receive treatment options not available at home. YOU are giving her the best chance of winning and helping her achieve her biggest goal, to be a mum.
THANK YOU, THANK YOU, THANK YOU!
A special thanks for contributing to the event’s production:
Elysia McConkey: Coordination and ongoing involvement
Ginny + JulesTimmins: Managing the very successful auction and its 300 items
Brigitta De Laet: organising auction items
Judy Smart: Helping acquire multiple items
Michaela Francis: Finance
Nikki Hodgman: Managing the physical event
Nicole Watts: Event collateral design
Jon McConkey: Being a great MC
Rob Ward: Auctioneer
Adam Khamis: Videos production
Damien G from Hire Intelligence: 50% of screens and equipment
Anthony Reed: FOC Install and pack down of all screens and AV
Lincoln Baker and Alex Taylor: For spinning decks and making tunes
Wilso: The Greenwood
I’ve taken the liberty of one final reciprocal thank you, passed on from YOU to Lou; thank you for keeping up the fight. Thank you for maintaining the rage, for amazing your village with your strength, courage, tenacity, grit and determination to keep punching while taking heavy blows. For putting one foot in front of the other when all the forces are trying to drag you down.
Thank you for being something that Noah and Evie, your village and the world will forever be proud of. Everyone knows that you are really struggling right now but keep that spirit burning, draw upon the village’s energy to do so.
The village loves you and the world needs you for many days more.
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
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 description to a tee.
We received a big blow today with one of Lou’s treating doctors delivering his candid opinion on Lou’s situation. Dr Arhnold said that Lou’s liver is not healthy enough for his treatments. He said that she should be in palliative care. Ouch.
He said the large liver tumour and tumour cells are next to the right lung, this would be causing the fluid issues. His radiologist took me through the MRI’s and said that 80% of Lou’s right liver lobe is covered in metastasis.
He said that her brain function and memory issues are a result of the compromised liver and also the chemotherapy. The tumours, low bloods, poor oxygen levels, fluid in the chest and the chemo drugs is the reason she is so unwell. That all makes sense but it’s a real blow to have a Doctor express that his treatments won’t help her.
Dr Vogl still wants to help. Vogl will remove the fluid at 1pm tomorrow. It’s a painful procedure so Lou’s not exactly excited about it. He plans to do the other half of the liver (Transarterial chemoembolization – TACE) on the 14th.
Nothing much positive to add today. It is what it is.
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.
Lou is really struggling. The fatigue is next level. She’s been like a hibernating bear since the 18th of October. Non-stop sleep and every movement a struggle. Endless nausea for months now.
She’s in the depths of her biggest emotional battles. 😞
We’re only doing a fraction of the treatments we’d hope to be doing here in Germany. Some of the infusions I was very interested in that include ingredients like curcumin, resveratrol and 6-Shogaol, she hasn’t had since the 20th of November. She hasn’t had regional hyperthermia since the 22nd. For the last seven days, Lou has only been able to have a cut-down treatment regime of substances to aid her recovery.
Even though the TACE (regional chemo) is liver-specific, her body seems to be struggling with it.
With her liver compromised along with “chemo brain,” her mind and thought function is the worst it’s been. It’s like she has dementia.
I’m worried that the fluid is building in her thorax again, I’d be surprised if it’s not. She seems to be displaying the same symptoms.
Hopefully, she’s well enough to get the other half of her liver treated with Professor Vogl this week. It’s a real double-edged sword because we want to mitigate the liver tumours to give us time to focus on the body but it’s more than likely she will remain extremely unwell.
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. A procedure in which a needle is inserted into the pleural space between the lungs and the chest wall to remove excess fluid from the area.
It’s only 8pm in Frankfurt but the kids and Lou have been out for an hour. It’s blissfully quiet. Just that very faint hotel murmur, humming somewhere unidentifiable in the background.
I’d be lying if I said I didn’t want to be waking in my own home right now, getting Noah dressed in his budgies so he can dominate the flags at nippers. Then rushing home to sneak off to the MX track to spin a few laps. Returning for one of McConkey’s prawn paster Sunday specials.
I’m happy here though. The kids have settled in and have been sleeping to the central European standard clocks and not their own messed up time that was causing me some torture.
We’ve sold 397 tickets to Lou’s event, amazing really. Do you think we can get to 500 in ten days time? If you haven’t purchased a ticket and live near Sydney, pull the trigger. “Chk Chk Boom” – Clare Werbeloff May 2009
Lou and I are obviously not going to make her very own party. There are some positives in this. If Lou was home, she’d be under self-imposed pressure to attend. If the party was on any of the last four or five Thursday’s. I dare say she wouldn’t have made it. Being a few kilometres from the Greenwood, in bed, would have upset her.
Lou would have wanted to speak to the audience also. This would have been an unneeded burden. Her anxiety from certain medications along with the constant fear that comes with an “incurable disease” may have been too much. Being in Germany has removed her from any planning and event pressure. She will be sad she’s not there. My dream is to have a remission party that she can dance at, in full health.
We know you will party and party hard on her behalf. As I have mentioned, YOU, are the reason we are here in Deutschland.
I managed a quick trip to the zoo with the kids on Thursday, It was fun but nothing on Taronga. Noah and I hit the ice together this morning (wow, that doesn’t sound right), I’d prefer to be putting in some turns on some skis but a skate is pretty fun.
It’s amazing how much you can love your own children. A limitless level of some sort. xx
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. Careful positioning of a pigtail catheter. Incorporation of a cobra catheter. 9.88mg mitomycin, 101, 18 mg irinotecan, 50, 2mg cisplatin, 5 ml Lipiodol occlusion, 180 mg EmboCept. Other: 3mg Granisetron, 20mg Dexacortin, 100mg Pethidine
Dr. med. Jürgen Arnhold
Curcumin: Is a substance found in the spice turmeric and has long been used in Asian medicine to treat a variety of maladies. It has antioxidant properties, to decrease swelling and inflammation. Inflammation appears to play a role in cancer.
Shogal; Is a biochemical produced during drying and cooking of ginger roots. It is active against tumour stem cells in concentrations which are harmless for healthy cells. The raw ginger extract can inhibit the proliferation of cancer cells
Resveratrol; A dietary polyphenol derived from grapes, berries, peanuts, and other plant sources. Resveratrol affects all three discrete stages of carcinogenesis (initiation, promotion, and progression) by modulating signal transduction pathways that control cell division and growth, apoptosis, inflammation, angiogenesis, and metastasis.
Photodynamic Therapy: A photosensitizing agent is injected into the bloodstream. The agent is absorbed by cells all over the body but stays in cancer cells longer than it does in normal cells. Approximately 24 to 72 hours after injection. When most of the agent has left normal cells but remains in cancer cells, the tumour is exposed to light. The photosensitizer in the tumour absorbs the light and produces an active form of oxygen that destroys nearby cancer cells.
In addition to directly killing cancer cells, PDT appears to shrink or destroy tumours in two other ways. The photosensitizer can damage blood vessels in the tumour, thereby preventing the cancer from receiving necessary nutrients. PDT also may activate the immune system to attack the tumour cells.
Dr Gerhard Siebenhüner
IPT (Insulin Potentiation Therapy); Normally this therapy is done with a low dose of chemotherapy. However, because Lou still has chemo in her liver from the TACE, this process helps the chemo in her body do its thang.
DCA Infusion: The aim of this drug is to kill off cancer cells, while not harming healthy cells. DCA turns on natural apoptosis (cell death) in the cancerous cells. It also blocks the process by which glucose is used by cancer cells, thus removing their energy source and starving them. Without blocking the glucose of healthy cells.
High Dose C: Vitamin C breaks down to generate hydrogen peroxide, which can damage tissue and DNA. The new study shows that tumor cells with low levels of catalase enzyme activity are much less capable of removing hydrogen peroxide than normal cells, and are more susceptible to damage and death when they are exposed to high doses of vitamin C.
Artesunat Infusion: A substance from the annual mugwort, has a destructive effect on rapidly growing cancer cells. Tumour cells have much higher iron concentrations than healthy cells due to their extremely accelerated rate of cell division. Artesunate gets into the heavily iron-loaded cancer cells, spontaneously large amounts of so-called free radicals are released, which damage the cancer cells and finally destroy. Recent studies show that Artesunate interferes with the neovascularization of the tumour. In this way, the tumour cells can be cut off from the blood supply and starved, this reduces the possibility of metastasis formation.
Extracorporeal Regional Hyperthermia EHY-RG: This involves artificial heating of the affected areas of the body to temperatures above 40.1 degrees Celsius. This is done by irradiation of electromagnetic waves. The body surface is protected by water cooling of the overlying irridation head. Heat can harm or kill cancer cells by damaging proteins and structures within the cells. Heat also damages blood vessels inside of tumours and causes less blood flow to the tumour, which can help slow its growth.
The above list of infusions and hyperthermia is alternatively managed by Arnhold and Siebenhüner and worked around Vogl’s TACE
Note added in December: We were not able to continue with all of the above-intended treatments. Lou’s liver is not healthy enough. We have only been doing a reduced amount of infusions to aid recovery.
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 and moving in the right direction. We haven’t had any good news since a slight decrease in the tumour in September last year, fifteen months ago. So we need to take the win and use it as motivation and reward.
It’s such early days, there can be fluctuations and I have a small worry that the cancer takes a hit and builds resistance. It’s hard not to have some negative thoughts after such a shit journey.
But today it’s a win. And we’ll work hard for another consecutive win. We’re due for a little success.
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 unhappy. Yep, Fick Krebs.
We’ve been dealing with three doctors and they’re all very candid when they say things like, “it’s serious” or “Louise’s situation is very critical.” The size of the tumours, the number of lesions and the swelling of the liver is very concerning.
While we missed today’s primary treatment, we have been doing complimentary therapies every day this week and we will continue to do them, indefinitely.
We will be in Germany for a minimum of eight weeks. We’ve found a place in a nice town called königstein, it’s the town that Lou will continue to get the majority of her daily treatment. We will inspect the little Deutsche dwelling on Saturday and if the patient gives it the thumbs up, we’ll be in on Sunday.
It’s been one of Lou’s toughest weeks. The positive is that today has been her best day in seven days. I truly believe we are in the best location to turn things around. We’re working on making tomorrow a better day again. Peace.
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 next video is a great visual of how RCT works, along with some of its applications.
Stories like Nada’s also give you the confidence and motivation to aid a decision. We know that Lou may not respond in any way as Nada did, but we will know if she responds and how, this very month.. ………Gotta be in it to win it…..
The two videos were created by Brian Hunt, Nada’s husband. I’ve been in contact with Brian for some time, to share our stories. Nada was treated at a Clinic in Burghausen Germany, called Medias. I had some direct contact with Prof. Dr. med. Karl R. Aigner who is a pioneer in the field of regional chemotherapy and heads up the clinic. We really liked him. We ended up prioritising Profesor Vogl but Aigner is definitely a sound option.
Elysia and I have been talking to patients and doctors all over the world since August this year, a bit like obsessed crazy people. While we’ve been perpetually prioritising; the time, the situation and conversations naturally massage your list of options into order. When it feels right to move, you move.
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 bit her on the arse, catching us by surprise. Cancer does what it wants with concern for absolute nought. We always new IO was a long shot, a 20% chance of success to be exact. However, we got complacent and assumed that the cancer may regress slightly, slow, or if it did grow, it would be just enough to force a consideration on an alternative treatment.
Didn’t we get caught napping? The cancer grew a fucking garden in her liver in a measly six weeks. It’s like you’re running for the corner post because a gap has opened up in the defence and a big burly prop is tying his shoelace in the shadows, he’s just out of your peripheral. Smack! Lights out, you’re on a stretcher.
We’re out of options in Australia. Elysia and I have been trying to get into see Steve Rosenberg with no success. He’s considered to be the godfather of cancer treatment. Out of all the treatment options, adoptive cell transfer therapy (ACT), is at the top of my list. This is a treatment whereby they find the soldiers (Tumor-Infiltrating Lymphocytes or TIL’s) in your body that are having a crack and build an army out of them. The process uses the TILs that specifically target tumour cell mutations to see if they can shrink tumours. The selected TILs are grown into large numbers in the laboratory (millions) and are then infused back into the patient to create a stronger immune response against the tumour.
I know the ACT process takes three to four months and Lou would have to be fit to travel. She would also have to be off all therapies for 30 days prior to resecting a lesion to get the TIL’s out. Anyway, Rosenberg isn’t taking any international patients. I’ll keep trying though. Hey, Steve, are you there?
I think our next best option as it stands is Germany. They seem to lead the charge with personalised treatment therapies. It’s funny, I’ve given a lot of presentations in the digital and online sector about personalizing individual brand experiences and how this can be done online through the use of data. Well, it’s very similar in the medical world and probably just around the mainstream corner with cancer.
Personalised cancer treatment is a move away from a ‘one size fits all’ approach to the treatment and care of patients, using genomic and molecular screening to utilise target therapies to achieve the best outcomes and better manage patients’ health. We are all very unique so it makes a lot of sense.
Many people say that Australia is as good as any county when it comes to cancer treatment and the quality and experience of our doctors. I was always unsure about this as I continued to read and educate myself on treatments and options. I have only recently come to the conclusion that we are as advanced but it’s in a very narrow, ‘racing blinkers on’ kind of way. When it comes to traditional medicine i.e. chemotherapies, radiology, surgery and perhaps access to new IO trials etc, we’re up the front of the innovators and early adopters pack. But the ignorance and institutionalised approach is simply our medical practitioners operating within their guidelines.
I guess it’s like skiing in Europe, you can ski wherever the hell you want, there are no warning signs, no barrier ropes and no backcountry patrol. In America and Australia, there are ropes, signs-on-signs and rules governed by more rules. And I do get it, if you push the envelope in the European backcountry, in new terrain, then the risks are high. But the exploration and progression are much more advanced too, there is more opportunity, more powder stashes, more cliffs to huck. Their medical field seems to be similar, they’re pushing the boundaries with more haste than we are.
Elysia and I have been researching and talking to a plethora of practitioners in many countries since the fifth of August. We’ve had to dial up the prioritisation in the last two weeks as Lou’s cancer has reared its ugly head. I just want to bite that fucking head off. Anyway, it’s looking like it could be “guten morgen” central Europe, “hier kommen wir.”
I also like that Germany is a stand out with the use of holistic integrative treatments. Something Australia sucks at, our medical system doesn’t even try. As I have mentioned before, there is a massive divide between non-traditional and traditional medicine. Get your act together Australia, you will save more loved ones. Please note: The oncology, the doctors, the hospitals and support staff we’ve had has been tip top, every time. Absolutely stellar.
The reason why Lou needs advanced personalised treatment is that the ‘one size fits all’ cancer treatment train Lou hopped on has not worked at all. Nine out of ten people that get on the breast cancer treatment train have success. Options are limited for the <10% that learn the hard way of being refractory to traditional treatment. You’ve just been tortured with your mortality on the line regardless. Sucks to be you alright.
I always said that if we had a preferred option that would extend Lou’s life, even a life extension for a short period of time, then geography or money should not act as friction towards the decision. I stand by this. Go hard, strive to win and pick up the pieces later.
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 wife’s outcome with stage four cancer comes with uncertainty. Just so you are aware, I do wonder about my risky interests more than you.
I have always been addicted to the substance released into the body through excitement. Adrenaline. Some may think it’s audacious behaviour, perhaps negligent or downright stupid. Of course, you’re welcome to your opinion.
I do think there is a blurred line between the pursuit of seeking intense experiences without regard for physical risk, verse activity that has a high level of danger even though you do all within your power to keep your limbs intact.
So, my ride today: Motocross would be arguably one of the most physically demanding sports on the planet. In my current state of fitness, riding at the threshold of my ability, I have about thirty minutes before muscles start to pack it in and I need a recovery period between sessions. For that thirty minutes, I am in a mentally clear state and while my heart rate might be through the roof and lactic acid is ballooning all limbs, I am emotionally neutral. Isn’t that what people aim to achieve through meditation?
Why do people meditate? To reduce stress, anxiety, depression and pain. They do it for well-being, psychological, neurological and cardiovascular benefit. Extreme athletes professional or recreational go hard for the same reason, even if they are consciously unaware and self-medicating ignorantly.
For me, it’s a combination of getting your buzz-on and concentrating so hard your mind has to be 100% clear, bar the exact moment. If you don’t get that front wheel in the deep rut entering the turn and your balance not weighted correctly, you will fall off. You’re thinking of nothing besides entering and exiting that corner. Because if you fall off you’ll hurt something.
On approach to a jump, if your brain hasn’t matched the distance you need to be in the air to the speed of your bike and you end up short or long, you’re a very good chance of eating dirt. Throw thirty other riders on the track, perpetually varying conditions and the power of hundreds of horses under your ballbag and the intensity is intoxicating. All of those horses at your disposal at the flick of the wrist, you have no choice but to “meditate.” Mediate or get a lift from the track in an HCF funded white van with flashing lights.
I’ve had to retire from one-off thrill seeking events that are a probable bad ending. The physical disregard I mentioned earlier. I’ve done this reluctantly, but your age and precious offspring become a priority. However the ongoing desire to progress at a sport, MX, skiing, skateboarding or whatever your poison, the combination of skill, concentration and risk will never leave you. Participating in these sports is a basic need, not a compulsive behaviour, I don’t doubt this one bit. It’s meditation, medication and an expensive session on the couch, all rolled into one therapy that works better than any other treatment.
Think about how powerful those endorphins and adrenaline are and why they’re so addictive. You can get hurt playing footy, even break something and not even realise until the 80-minute whistle sounds. That internal drug is stronger than morphine less expensive and good for your health, fact. For the extreme sports ‘junkies” and contact sports participants, science would prove our brains flood more dopamine during activity than the safe and conservative. That feeling of pleasure will always have you going back for more.
The overcoming of nervousness and fear is like an emotional reward, it leads to feelings of well-being and positive psychological outcomes, a constant sense of achievement. I honestly don’t know if I am addicted to the biochemical reaction within the brain that leads to that epic state of joy, or the activity itself.
I won’t grow out of it, it’s in my DNA. It’s a matter of minimising serious risk but having enough fun to clear my thoughts, reset my brain, look forward to the next session and enjoy living. Unfortunately, I will break another bone or two in the years ahead of me, I don’t want to but it’s inevitable. I hope to all the gods it’s never serious.
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 and its a class of drug Lou has not previously tested *except a single round of carbo in Sept last year
Gemcitabine (one of three chemos) came up in the RGCC test as a drug that Lou may be sensitive to
We can change tact and come back to this if we prefer another option in the coming days
We should be doing something over nothing
We are off the trial so we can do all of Lou’s complementary treatments (get her back on the disciplined health wagon)
The Negative’s for me are:
Lou may not handle carboplatin (*hospitalised once before)
Lou is so far chemorefractory and chemo is simply horrible
I don’t like the fact we are meant to stay on this cocktail for three months before assessment
We’re still waiting for Foundation One and Onco Deep results to potentially give us direction. We’ve got a heads up that the Foundation One may not offer anything fruitful so we’re hoping the Onco Deep may.
We have four other practitioners we’re in conversation with, some of these leading to potential options that we will continue to pursue.
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 by pain and suffering, we were forced to have scans earlier than scheduled. Scans always lead to more scans and scan results for us are a punch in the nose. A punch that makes your eyes water, your vision blur and head pound.
Lou has more tumours on her liver. The tumours that were already there are much larger. The primary tumour has doubled in eight weeks.
We’re off the trial because it’s not working.
We’re looking for the next best potential solution and may start something as early as Monday.
We anticipated a couple more weeks before we got to this dead end. It does give us more time to activate the next phase which is a win. Whatever that phase is.
There isn’t anything positive to say today. I’m unapologetic because it’s ok to be on your back. As long as you get back up. We had short odds of the trial being a success and we were mentally prepared for it. We weren’t however prepared for the relentless, unforgiving assault we’re under by Lou’s mutating cells.
We need to lick our wounds and regroup, find a new train line and stoke the engine. Lou’s going through the process of accepting the current situation, a situation harder to digest than a bucket of sand. We all know she will bounce, she always does.
I was just looking at my calendar and thinking, we’ve had a bad run. Yep, Fuck You Cancer, you’re making us work for it. Lou’s only had a few good days since 10 September.
It’s mainly the Paarp pills that are causing severe fatigue, nausea, anxiety and pain. It’s a real kick in the face when you’re trying so hard.
I jotted down the words that best describe cancer and put them in a word cloud, unfortunately, Lou’s last five weeks can be summed up here 👇:
We’ve got many conversations in play with some of the best practitioners all around the world. We have some molecular screening results due back next week. And we are not taking a step backwards in the fight. So we’re due for some wins to fall our way, and they will.
The best positive is Lou had a few consecutive days in good form for our week in Byron with the DeCelis clan and catching up with some of my family. So Cheers to that.
In two weeks, if Lou is in satisfactory health with her current treatment plan, I’m going on a journey. My dad, brother and I are going to be rafting, trekking and bike riding The Borneo jungle, Coast to Coast.
When cancer becomes your life, it helps to relate other peoples struggles to your own. There is nothing like peoples experience of war to remind us of how fortunate we really are.
The Sandakan “death march” remains the greatest single atrocity committed against Australians in war. I’m still struggling to get my head around it.
I will add more content to this page to in the coming weeks. That’s the plan anyway……
22 October 2018
Unfortunately, I won’t be going to Borneo this week. While Lou is still insisting I go, others have made the decision for me. Maybe another time.
So this is me on Sunday morning (no makeup), it’s early, the sun hasn’t even graced us with its presence. I’m 41 and still get excited about the day ahead when I know it’s going to be fun. Evie and Noah are asleep, I do want them to wake but I remain very still as I flogged them the previous day with non-stop action. Noah has been sleeping with a smile on his face. I’m tangled up in arms and legs, which I love, a nightmare for some but a happy place for me.
A primary goal of mine with Louise’s cancer has been to minimise disruption for the kids. It’s come at a financial cost but to see them happy is extremely fulfilling. I am proud of this. It’s important to feel like you are achieving in some areas at a time filled with consecutive bad news. Lou and I, with the help of family and friends, have nailed the management of our precious little munchkins.
Evie is still oblivious to the current state of affairs, she’s too young and naive. Noah is very well aware of what is going on. He does at times get emotional and momentarily angry at his “mumma” about the situation, which is his way of expressing his frustration. He’s genuinely concerned that she’s not always present and healthy and that their future together isn’t guaranteed. Lou hastily turns his upset feelings around by pouring some love into him.
Lou’s had a horrible three weeks, one bad day after the next. You have to sore to the sky and look down with perspective though. Lying here with the little ratbags, disappointed their mum isn’t here with us right now (although the bed is too small where would she sleep?) but still appreciative of my fortunate life that has been and that still is.
I’m on a best mates farm when he isn’t even in the state. Noah’s hanging with one of his besties and I his parents. I’ve borrowed motorbikes for the kids from another mate. Today we’ll be hosted at a good friends house, so the kids can ride horses, eat ice creams, breath the county air and simply have fun. The kids are nothing but smiles, all weekend.
Sure I still think about the reality and the enormity of the current shit-show we are in but when the kids are smiling, we’re smiling.
When Noah wakes the first thing he says is; “I had the best dream Dadda,” and proceeds to tell me about all of these tunnels and slides that went down, around and underneath the house. It actually sounds pretty fun, I’m a little jealous. Evie is hungry.