Always and forever I’ll be your Mumma XoX

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 circles are the cancer cells, the rest are goodies.

I can’t express enough how important telling Noah the truth has been. Yes, he is scared, yes he is thinking about it and knows there may be an unthinkable outcome. But he is thinking about it and processing it openly with us. Instead of knowing something bad is happening but doesn’t know what and keeping it inside. I have disappeared to hospitals and doctors appointments non-stop for the last few months but he knows I am safe and being looked after, so he doesn’t worry. His protective care for his sister has multiplied and it’s beautiful to watch.

He has always been an emotional, loving, expressive little guy and right now he is shining so bright. I encourage you all to talk to your kids, don’t hide things that affect them. Answer their questions. Sickness and death are imminent for all of us, and sometimes it doesn’t go in the order of oldest to youngest with regards to who’s going to die when (which is how Noah had it all worked out).

And the other reason is that now Noah and I talk about it, and it makes me feel so good to have his support. Sometimes you need a five-year-old best friend. And I scored with the best of the best. Love you so much it hurts Nono. Always and forever I’ll be your Mumma XoX

Family cuddle

Help

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 behind us has carried us this far. And I hope the tone that’s been set for our support carries over to any family in the community that needs help in the coming years.

But today I want to talk about my family. And I want to ask for your help. Help with a fundraiser to generate the funds required to afford the treatments I need. And for my family to live comfortably with me, where ever in the world we land for treatment.

For us now the stakes couldn’t be any higher. I have aggressive metastatic Cancer moving through my body. My doctors define it as Stage four and terminal. Soon it could impair my liver function.

Terminal is just not something we will lay down and accept, however, the treatment options are limited and overseas treatment will likely hold the key. We have sought out the best international doctors and clinics who specialise in my type of cancer. We await a few more test results before we can make a call on which way we go. But the paths are very much the same. And they all come with a very high price for life.

We need to stop this cancer from spreading any further and we need to move fast. One liver lesion alone doubled in size in just 6 weeks and new lesions were detected. Terrifying.

I could live well with the current cancer in my body for many years as long as there is no growth or new lesions. However, to date we have not had that result from any of the five treatments we’ve tried.. and are now onto the sixth. We need a multi-disciplined approach to hit this abominable disease from all sides.

We are creating a huge fundraiser event with both a live and silent auction on Dec 6th @ 6pm at The Greenwood North Sydney. The auction items are flowing in and are blowing me away. We hope the night to be a big celebration of our village, a boost to our morale, and a night to remember.

So why do we need your help?

Having cancer as a mum hits you in a place so deep, so raw and so terrifying that it’s impossible to describe. What i want most is to see my babies grow up and to know they are not suffering the loss of their mum. Evie is 4, and Noah’s nearly 6. The thought of not being there for them growing up is a place i try not to imagine. I want to see what beautiful people they become.  I worry they won’t remember me. They have been through so much in the last year but still they are are so brave, always smiling, always loving, always silly. They haven’t lost their innocence to cancer yet and i hope they never have to.

My disease is currently incurable but treatable and the reality is until they find a cure, we will be forever focused on treatment and survival. They predict a cure will be found within about five years, so we’re going to fight like hell, one day at a time, for 1825 days (five years)and keep me alive.

Money is always a massive worry. Money is a big worry for most families without throwing the cost of cancer into the thought blender. Dom and i built a great business that had several years of doubling annual growth. We never missed mortgage payments, we travelled the world. However, my cancer off the back of Dom’s bike accident has completely crippled us. We’ve been in this fight for 17 months now and the truth is, if it wasn’t for family support we’d be beggars on the street. For that, we are extremely fortunate and downright lucky, however, it is not sustainable.

It’s a strange feeling of living in a beautiful suburb, in a beautiful house, with a nice car and all the trimmings that make our life easy and enjoyable. And then one day you find yourself struggling to pay bills for gas, electricity, phones, internet, childcare, clothing, petrol, tax, school and daycare. Sometimes food. It’s such an enormous fall from what we have come to be used to. And yet on the outside, we look to most like life hasn’t changed. But it has. We count our dollars and we value what we have so much more.

And what we know is that stress has a major impact on cancer growth and spread. We need to peel back all the layers of stress. By helping us financially you remove a major stressor for us.

Treatment facilities and hospitals overseas are hundreds of thousands of dollars and that is without medical issue or travel and relocation costs. The best diagnostic gene profiling and chemosensitivity tests run from $5,500 – $10,000…per test! We’ve spent $40,000+ in just the 4 mths since the metastatic diagnosis in July.

How can you help?
Buy a ticket to our Fundraiser Night Dec 6. 6pm. Greenwood. Nth Sydney
Donate an Auction prize for the fundraiser donations@louisedecelis.me
Donate directly to our family

I do want to make it really clear here that we are asking for financial assistance for our family. It is not a registered charity and the money would be gifted to us for medical treatment and support for the family.

I feel extremely lucky that we can ask for help without pride or ego getting in the way. After all, this could happen to any of us, it’s a conversation that many of us will need to have, and I hope that it makes it just that little easier now we have paved the way.

With much love and gratitude

Lou

Noah and Evie Byrne's Christening

My Week In Numbers

Louise DeCelis Back in Hospital For Chemo Side Effects

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 unharmed.

And so you suffer greatly and you sob to your husband that you don’t want to do it anymore. And you don’t. NO MORE!!!! You find yourself disoriented in the hospital not knowing what day it is.

Then your bloods start coming back to acceptable levels and your mind feels peaceful. You finally turn the corner. You wake up fully and you can move your body, walking, stretching. Literally coming back to life. That’s my week. I’ve climbed out of the hole and I’m feeling alive again. Crawling til I’m walking, walking til I’m dancing.

My week in numbers…

Days since the last Chemo: 8
Days it took for the demon to get hold of me: 4
Days spent sleeping 20 hrs: 2
Hospital days done: 4
Hospital days to go: At least 3
Net round of chemo due: Yesterday. Will have it as soon as blood levels are back up. Ouch!
Side effects of chemo: 7 (at least) unbearable, unspeakable side effects that hit you all at one time
Medicines taken: Too many to count 🙁
Hair falling out: ZERO!!!! Yessssss
Hours slept: Over 110
Hours spent crying: More than usual
Needles: Only 1 straight into my new port. Woooo hoooo!! Saving me 20 needles this visit alone.
Nurses looking after me: Mix of 10 beautiful people. I heart nurses
Litres of IV saline: 4
Platelet count: 34 (Normal 150-450. Below 20 platelet transfer)
Other blood counts: All in the danger zones but improving each day
Visits from my kids: Zero. Hard for me but easier for them. Dom brings them in when they ask to come
Laps of ward: 7 and rising
Messages of support: Over 100. THANK YOU SO SO MUCH!!!!!!
Bravery: Utterly diminished the day I was admitted but its come back in force
Strength Body: Wasting dammit. Back to baby steps and my home yoga gym space. Cannot wait!
Strength Mind: Rock solid! I’m back in the ring. I’ve got this!!!

And that’s what a week in my world looks like! Let me know what you have all been up to XoX

Evie and Noah Byrne with their mumma - Louise DeCelis.

Fundraiser For Lou!

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 pride and asking for help.

There is no cure for Lou’s cancer. Our cancer-fighting focus is attempting to find treatments (domestically or abroad) that will prolong her life. Some of these options are upwards of €100 000, less travel and relocation costs.

A heartbreaking scenario for Lou is that Evie might not remember her mum if we don’t get a lucky break. Balancing treatment and spending time together is our priority right now.

You can help by:

    • Sourcing/Donating an item for auction

Please contact: donations@louisedecelis.me  or Ginny Timmins on +61 404 033 237

    • Attending Lou’s party: (we’re in the process of firming up the finer details of the party but your ticket will cover food, a DJ or band and a quantity of drinks TBA. Get in early and buy a ticket today.

Buy tickets for LouiseDeCelis.Me 

  • Donating money

Donate Now

Thanks for your help.

Love Lou, Dom, Noah and Evie. xx

Give Blood, Make The Effort And Save Lives

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 when they need it.

Blood transfusions come from real human blood. It can’t be manufactured and donations get scarcer all the time. 33% of Australians will need blood in their lifetime. But only 3% give blood each year!!!!

Today I’m back in hospital having a series of blood transfusions. So please, please consider creating a habit of donating blood. If you already do you’re an absolute legend 🙌🏼 and I hope that i got your blood today❣️

And if that didn’t tip you over the edge consider this – Australia needs more than 25,000 donations every.single.week. So get donating people ❣️

R U OK?

Three days ago I had a full blown panic attack in the middle of a crowded flight. Louise DeCelis. MTNBC. Are You Ok Day

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 kicked off, sweating, panic, heart pounding and endless thoughts about how of course I was dying given my health and all the meds I am on. In that moment the panic is so real and you can’t escape it. And when you’re on a plane you can’t escape your situation so it’s multiplied. I’ve had two major ones before, one ending in an ambulance with my beautiful friend Ali looking after me. The other time Dom who always works me through it. Friday was my wonderful brother in law. All three of those people knew how to handle it because they knew my mental state. They knew I was in times of struggle and they made me feel like it was normal. It was OK. And as such my openness became my safety net.

On top of it, this time it was total strangers that also helped me, the hosties. (before Jon could even get to me) they reached out and asked me if I was ok. I explained that I needed help. They got me on oxygen, a seat with some space, a cup of ice and they were just so kind. Not judging me. Just genuinely concerned.

Friday also happened to be R U OK? day. A day of checking in on our loved ones, colleagues… or even strangers. And I wanted to say That One; it is perfectly ok to not be ok. People all around you are not ok. Two; it’s ok to be feeling great one day and not the next. I’m the perfect example. I go from 150% to 0 in a day and sometimes it takes a while to break through. And that’s ok. And Three; you don’t need to wait to be asked if you’re ok, it is perfectly ok to ask someone for help, or an ear, or some physical comfort. A hug. A hand held. My brother in law held my hand on that plane and it literally saved me. It comforted me without words and I knew I didn’t need to feel embarrassed or concerned about what other people thought. He was with me and he had my back.

R U OK? Louise DeCelis, MTNBC blog.

But I am good today, please don’t worry about me, this post is not for support. My openness has me covered with endless support. But do check in on your loved ones. And if you need help, even in the middle of a crowded aeroplane, reach out and ask someone. People want to help.

I hope you’re all ok this Sunday!! Big hugs 💖 #ivegotthis

Jon -McConkey And Louise DeCelis on The Gold Coast Queensland 2018. MTNBC Blog
J-Boy and Lou Lou on the GC

Yesterday Was A Bad Day On The Rollercoaster

Elysia DeCelis, her four children and Noah and Evie Byrne

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 supported we feel. We’ve had so many messages and comments with new info and we’ll follow up every single one. The power of social media for good is real!!

I’m finding it hard to keep up with messaging everyone back but please don’t stop! Know if I don’t reply I do read them all and i genuinely appreciate everyone reaching out. I’m also a little overwhelmed with the emotion of what’s happening so I’m shutting down & going off the grid for a few days for a weekend away with my little family (which was planned months ago as an end of cancer treat).

So, yesterday…. Monday they took 3 biopsies from my rib bone lesion, then Tuesday started high dose radiation for 5 days. When they told me I’d be in more pain and it would get much worse before it gets better I had no idea. I also didn’t expect the first radiation treatment to completely wipe me out with utter exhaustion.

For the last year, I have fought every minute of every day for my health, I have worked so bloody hard. I did everything they asked me to do and some. Walking when I was floored, tough weight sessions at the gym twice a week at least, during treatment and after, and the most positive mindset anyone could imagine. And it took all I have to push through. I did it for my kids so they could have a mum that could play with them and look after them without help, and I did it for myself to get my life back. I did it for Dom and all the people I love so they would know what they meant to me and how hard i’d fight to stay with them. And in just one day I felt stripped of all of it. I’ve said I am ready to fight and to suffer again, but I didn’t expect the pain, utter exhaustion and paralysing fear to hit so soon. Too soon! Bone cancer hurts… it really f’ing hurts. Yesterday I remembered what I felt at my lowest points in the last year, and there’s a reason your body forgets pain. So you can get up and go on! And it’s not until you are back there on the floor, exhausted & hurting that you remember how hard the fight really is.

Besides the physical suffering the day started incredibly badly. Dom was out of the house before we all woke and Noah woke up before me. He tried to wake me. No luck. He ate an Apple watched tv and tried to wake me. No luck. So he got my phone and started calling people until he got my sister (who lives over the road), and asked her to come and make him breakfast. Uuuughhhh… My heart breaks into a million pieces. I don’t even remember my poor boy trying to wake me. Evie and I were sound asleep while my brave and beautiful boy fought back the fear that his mum wouldn’t wake up, all in the same week as being told his mum was so sick that there’s a chance that ‘the bad cells could win’. My heart breaks into a million more pieces.

I spent the rest of the day in pain, and devastation and on a radiation table amongst other things, crying tears that I couldn’t wipe away as you lie so still, arms above your head, unable to move to wipe the tears that you feel pouring down the sides of your face. Last time I lasted 6 weeks of radiation without a single tear on that table. But the stakes were different, we were always going to win, and now we have to accept the uncertainty that will surely linger for the rest of my life.

Today I’m out of the foetal position. Buoyed by a total stranger calling me to offer advice and well wishes, a mum who has her own breast cancer journey. By one of my closest friends taking me to treatment and cooking me a keto lunch. By another getting me out of bed yesterday, me and Evie fed and ready for the day. By the 502 people who have shared our post for help. By my beautiful, capable sister who never ceases to amaze me. And by my two divine babies who i’m off to beach with to dig our feet in the sand, have an ice cream and take a big calm breath and enjoy the moment.

XoX Lou

If you want to hear how Dom explained my new diagnosis to Noah, grab some tissues and read here

Elysia, her three girls and Evie Byrne eating ice creams at Balmoral beach