Hold this space

We have so much to share with you all. As soon as we have had enough time to sit with all the different pieces news and process them ourselves, as a family, I promise you we will.
As soon as I feel like I can adequately convey the light and shade of it all I will.

In the meantime I wouldn’t get too invested in any of the third hand whisperings that are doing the rounds and I can’t  let them rush us.

We have some more big positive posts coming up and we can’t wait to share them with you.

For now here is Bede.

imageHis agitation has passed. He can’t tolerate any feed at the moment and has been losing weight. He ended up needing a general anaesthetic just to get a drip in so we could hydrate him and yet he does not falter.

Bede is irrepressible, unstoppable.
He is nearly crawling and always laughing.

He is growing and developing.

He is hope.
He is light.
He is shining.
Busy embracing life and rolling around after his brother or the dog. He is enjoying himself.
I can’t help but smile as I type this just thinking of him at the moment is such a delight. He is so happy and cheeky and fun.

image image image image image
Thank you for your patience, for standing with us. Thank you for your love.

We are both so grateful

I promise the updates will come soon.


Issy and Roy

Whatever is best for Bede

imageWe’re home!

Our trip gave us hope and despair, peace and then lost peace and solace.

We will update on the trip when we have had a little more time to process and the official written opinions arrive. Unfortunately Bede was very unwell for the majority of the trip but was visibly relieved to be home with familiar voices and all his creature comforts.


It was very important to Gus that this photo of Bede laughing was included in this post.

For now his little soul is fighting his intruding agitation. His light rises up, unrelenting and unwilling to be quashed. He struggles to find his place of comfort but then he does and he laughs as deeply as he is whole. His sense of humour is intact, his cheekiness unscathed.

This morning as I type this his light is sparkling… all out shining and he is laughing

Today is MRI day and with both hope and fear in the air I thought I’d ask all of you, Team Bede,  to join us in hoping or praying that whatever is best for Bede is what will eventuate. Unselfishly, unreservedly, without any request more specific than that. Just whatever is best for Bede.

Have you got a little love to spare today? Let’s wrap him up in it.

Thank you all so much.

Bede’s tumour is growing.

As I write this it’s late. Roy’s been doing the heavy lifting with nights lately but tonight I am alone. Waiting to give the midnight meds and hoping he drifts off soon.
We have been buying time. Buying time to process our reality, buying time to let Gus sort out everything he has going on at school, buying time while we figure out what we want to do.

But there is no time to be bought and I am sick and tired of half sentences, half answers. Not lying but not disclosing. Holding our secret close when we all know a problem shared is a problem lightened.

Three weeks ago we posted about Bede’s MRI and received the results pretty quickly. Since then we have wrapped ourselves up in the love and comfort of our closest friends and family.
We have had twice weekly meetings with Bede’s primary doctor.

We have tried to keep on swimming while the difficult wave filled nights have threatened to drown us in exhaustion and in our own thoughts.

Bede’s tumour is growing.
The cancer is overcoming the chemotherapy and the tumour is breathing new life, focused on robbing Bede of his. For now, both astoundingly and predictably, it fails.

Bede is here living and laughing, lighting and loving and it looks a little something like this…



He lights the way and I am so happy to just bathe in that shine and follow his lead. His inner joy, his uncompromising happiness and resilient love glisten through the troubles like jewels.


We also have two trips to Sydney coming up to see different doctors. We have people in the US and the UK looking at Bede’s scans. Surgeons, oncologists, radiation oncologists. We are having renewed discussions with our team of doctors in Perth.

We hope to go forward with balanced judgment with an aim to prolong sweet life for Bede but never at his own expense. As our little miracle man keeps on keeping on.

Your prayers, your hope, your love are always humbly received.
I know I have said it before but the miracle Bede has had and continues to need is all of you. We hope you will continue to buoy him with your good will.
If love, hope, prayers, faith, positivity and joy don’t shrink this tumour it won’t be for lack of trying. Please continue to get behind Bede.

The tumour is growing.
Bede is small, Bede is mighty and we are so very thankful.

Brain Cancer

This blog post was written in April of this year at a time when our family was under a lot of external pressures and Bede was not in as good a place as he is now. He was incredibly ill. A couple of people repeatedly expressed to my husband that all cancer is the same and that night I wrote this blog. When I chose not to post it I almost stopped blogging. I’m posting this now in hope of undoing my writer’s block so I can start to communicate the joy of Bede again. This blog has always sought to be honest, our positivity and our happiness is honest. A number of people involved with brain cancer, including other brain cancer mothers,  have asked me to post the blog as they feel it is an honest representation. So here goes….



Let me tell you something, it is not a gentle drifting.
It is not a slow but gentle decline. It is not an all encompassing nausea.
It is an all out assault. It is brutality in its purest form. It is invasive.

It takes your inner core and torments it.
Hours of distress and constant uncontrollable movement.
Vomiting even when the tube surpasses his stomach so there are no contents just painfully retching up pure bile for hours at a time.

Repeated spells of lifelessness.
Brain irritiation that just results in constant screaming.
Losses of oxygen.
For some loss of sight, loss of hearing, loss of ability to control your own bowel or empty your bladder or walk or swallow or talk and Im not just talking end stage here. I am talking this is life. This is where the hope is lingering.

Bede’s bones are breaking, his gut is breaking down, his brain is irritated, his vertebrae is collapsing in on itself and both his knees are fractured.
He is not able to communicate what is wrong.
Sometimes I don’t sleep for 30 hours at a time while I try and soothe his symptoms. This is mentally, emotionally and physically the hardest test of endurance I have ever met.
None of this stops when the chemo does. When the chemo stops all of this hits it’s stride.


There is death. Sitting in the room with death and wondering if this week, this day, as I press the red emergency bell, if this moment is his death. Not fighting, not resisting, wondering. That is repeated frequently and that is exhausting.


People say they can not imagine losing a child. Well imagine having that happen repeatedly in the space of a week. Watching their body go lifeless. Watching their numbers drop on the monitor. Feeling the adrenalin surge through you. Trying to keep your voice steady as you reassure him hoping to reach him on some level.
Trembling as the doctors explain what is happening and this is still our best and only option.

Let me tell you something else at no point do you get used to your child dying. Each time his body goes limp and lifeless, each time the doctors mistakenly tell you he is end stage and it could be any time, each time he has a seizure that can not be controlled, each time is just as traumatic as the first.

It doesn’t matter how at peace you are with his death, how comfortable you have become in it’s presence, how many times you have given him your blessing to go each time it winds you, each time I sob. One of the most recent times I was alone. My husband was not at the hospital, he had been on speaker phone for the news but when the conversation stops, the practical discussion ends I am reduced to guttural weeping. Clinging to my son’s doctor as though that could change anything.

There is horror here. There is blackness and desolation.

You sit there and you tell us all cancer is equal, its all the same. That we shouldn’t need to support each other quite so much.

If all cancer is equal why do I long for a different cancer for my son.
Why is there not even the hope of cure for my son?
Why when I tell the nurses and the doctors what you say do they shake their heads in disbelief?
Why has my son spent the majority of the last 5 weeks sedated?
Why is it even improvement in the tumour robs him of his autonomy?

When you say that all cancer is the same you deny his brilliance. Because this is black and this bleak and this is hard but he is soft and he is light and he is hope and he smiles when I know you or I would never, could never, have the strength of character to.

So all of the light and positivity and happiness I have always blogged about is true. the miracle is that his light is not diminished by the darkness, he radiates through it. Shining and glistening and laughing and exploring his way through life.

This is harder than you have the ability to imagine.
Bede’s is a story of triumph but triumph does not come without a cost and when you deny his reality you deny his brilliance and I will not sit idly by while you do that.

I will not sit idly by while you diminish the brutality and the relentless reality of childhood brain cancer. I will not allow our focus on positivity and light and love to enable your misconceptions.
So here I am correcting you in the name of Imzadi and *Luca and Harvey  and *Ben whose deaths were slow and painful and prolonged and unimaginable and who fought with cheek, valiance, love and grace respectively.
In the name of Bede and & Blake who fight the incredible fight with smiles and songs and love and joy.

Brain cancer is not better or worse. It is different, it is more hopeless and the demands it places on patients and families are in a league of their own.
Bede may be small but you better believe he is mighty.


* some names have been changed to respect the privacy of the deceased.

Sadly Blake has passed away since this post was first written.

This blog is not intended to diminish the sadness, real deep difficulty, pain of other cancers. This blog is a reflection of my experience of pediatric brain cancer and my observations after spending a year on the peadiatric oncology ward. One of my dearest friends in the world lost her beautiful precious daughter to leukemia recently. I am not seeking to diminish the tragedy of other cancers.
I am saying the dance to the grave is different and I am hoping to seek understanding of that.

If your into it. Please take the time to follow the blog. Then the next time Bede needs some positivity and hope behind him we can call on you to send a dose his way.

Dear Gus, thank you for your nurturing cooling shade.

For some reason whenever I see this photo I imagine the two of you at a festival in 18 years time.

For some reason whenever I see this photo I imagine the two of you at a festival in 18 years time.

Dear Gus,

I am writing this now because I imagine one day you will go looking for this blog and you will survey a small but defining part of your family’s history through it’s words.

The fabric of our family is woven with love and friendship. In so many ways we all chose each other and what we would become to one another.

When you look back at this time I hope you remember it with the fierce love that has come to define it but I know you may not. I know that teenagers can have angst. I know that hindsight can create imagined regret, manufactured guilt and should that happen for you I don’t want my words to seem retrospectively comforting for the sake of comfort.

I am writing this to you today so you can undoubtedly know the truth. The truth of this moment as it was lived; repeatedly.

You have been the best brother we could have ever imagined for our Bede and when we tell you that you always remind us that he is the best brother you could have ever asked for. You tell him how awesome he is everyday.

You wrap him in love and hope and pure unmitigated acceptance. You fill his days with laughter, sincere chats, playfulness and you educate us all on how to settle him. You tell me about how your hearts talk to each other.

When Bede is crying in the mornings I put him into your bed and even if you are cranky at being woken up for school you never show it. You snuggle into him. He snuggles in to you and he smiles. You bounce him in the crook of your arm.
You are Bede’s safe place. You are his happy place. He has a gentle ease with you. You couldn’t possibly be more than you are to him because to him you are everything.


I want you to know at 7 years old you were scared to tell me you were hoping Bede would die. You couldn’t bare to see him suffer, you weren’t sure how much longer we could go on. It was a particularly difficult time in Bede’s treatment and you were not alone in those thoughts.

In that moment my heart broke that my beautiful Gussy that I had held so tenderly for so many years had to grapple with compassionately hoping his brother would die, a concept far to adult for my little boy. But as my heart broke my pride for you put all the pieces back together. I was in awe of your love, your empathy, your depth of reflection. Never feel guilt for this you have loved him purely and unselfishly.

I am not sure if you have ever felt a moment’s resentment for your brother. If you have you haven’t shown it and he has certainly never known it. You make allowances and cancel plans with a happy and understanding coolness.

There has never been a moment you haven’t hoped for what was best for your brother.

I remember you telling me that you didn’t see a down side to Bede not getting better and I said “well darling I explained to you the down side is that Bede will die”. Your reply has become one of our classic family tales. You said

“well that is all about us mum and this is actually about Bede. If he dies he will go to heaven and be with Molly Gran and Poppa and if he lives he gets to stay here and know our love”

You have given your brother the greatest gift in the world. You have made cancer irrelevant. When he is with you you are his big brother, he is your baby bro and he gets to be all he was meant to be and all that he is. He gets to play.

The medical team aren’t sure how good Bede’s eye sight is right now but when you walk into a room he seeks you out. He is drawn to you. He loves you happily, tenderly, with the awe of a little brother and soaks up whatever you are happy to teach him.

He uses his little arms to pull your face into his own and hug and kiss you. He gets to be a playful little boy with you and as I type this you are both lying on the living room floor laughing.

Your light fills every crevice. Bede’s light is no accident it is clearly a familial trait amongst brothers. You have led by example.

Your matter of factness, your groundedness and your ability to simultaneously hold defiant faith fuelled hope and the grim reality at the same time is truly humbling. Most adults I have encountered cannot do that.


People have told me and one day they may tell you that this has been the making of you. Do not listen to them son. How wrong they are.
You were born the most compassionate, loving, tender, affectionate, empathetic, clever, dry, funny, joyful, thoughtful little boy. This has not made you, or defined you. You have always been your own incredible person.

It can only be an act by the grace of God that Bede got to have you, he got to grow with you in your nurturing, cooling shade.


How much love can a bear bare.

I have grown up with you. Being your mother grew me. I so often wish I could spare you from the pain ahead, from the sorrow. I wish I could protect you but in some round about way I hope our positivity, our love and the happiness we find in one another will help us all.

If I could offer future you any comfort it would be that you make him happiest. He is at home with you. He has truly lived because he got to have you.
This post is to future you but if I had to think about present you I’d say:

I know that sometimes I am hard on you but I want you to continue to grow into the remarkable young man you are set to become and part of that is respect and discipline.

I know that sometimes I am soft on you and I spoil you but I want you to continue to grow into the remarkable young man you are set to become and part of that is embracing you gently with tender easiness and protecting from the bruises.

If I had to make present you a promise I’d say:
I will continue to try to live up to the gift of being your mother (and I promise to beat you in every water fight this summer).

You were my first love. You are my whole world. You are my sunshine, my only sunshine. Your wit, intelligence, faith, affection and hope sustain our family. You are our anchor. Your Daddy and I love you so very much Gussy. You are doing brilliantly.

Thank you darling.

MRI day – Have you got a little love to spare?



I have wanted to be blogging more. We have all just slid into this joy and peace of being at home. Watching our boys grow together as brothers in love and laughter and natural light.
We have had 4 weeks at home with Bede well which is our longest stint ever and I can’t wait to share with you all the photos of our adventures, the videos of his contagious laughter, his resilient playfulness and his growth. Because he has been growing and developing beautifully and our confidence has been blossoming.

Unfortunately a mistake was made in Bede’s care that left him to become quite ill over some weeks. From my perspective that illness resembled tumour growth and as I watched him grow sicker my confidence wilted, a seed of throbbing sadness planted itself in my heart.

Then the mistake was discovered and Bede has been reclaiming himself and it explained nearly all of his symptoms.

So now we have no idea what will happen today.

We are confused. We are hoping and praying and believing and touching wood that todays MRI is stable or even that the tumour is shrinking. We are trusting.

We are still on this rollercoaster and what a privilege it is to be riding it with him but today our stomachs are churning and we are disoriented.

If you have a prayer, a wish, some love, some hope, a giggle, a thought, a grin, a ray of sunshine, a miracle, an endless summer, a pocketful of stars, to send his way it would mean the world.

Bede continues to meet the challenges that cancer and the people around him throw at him and he does it with a smile on his face.

I want a do over of the last few weeks. I want him to keep knowing our love, to keep playing and laughing and listening to his brother tell stories.

IMG_2183 bede at zoo

I want him to continue growing and the tumour to continue retreating from his glorious love filled light.

We cradle him in our love, treasuring him.

He may be small but once again he has proven that he is formidable, he is mighty.

What a dance you have danced Blake-osaurus.



Somebody asked me how my dear friend Blake died. He died how he lived.
Loving and loved, fighting and fought for, beautifully and surrounded by love.

Blake’s mum was generous enough to call me just a few hours after it had happened to let me know. After hanging up I cried and wailed and the louder I cried the louder Bede laughed as though sending his friend on his way with the same brand of unrelenting joy Blake had gifted the world with.

Blake’s was a life well lived. He is a boy who transcends earthly labels like age or time. He made soul connections.He inspired the sun to shine.

One night I was privileged enough to have Blake call me in tears. Wanting to see me. I promised him if he needed anything he could call me and now he was reminding me of that promise and holding me to it. He said “Issy it’s not working without you” I asked him what wasn’t working and he said “tonight, tonight Issy it’s not working without you”

Well Blake I want to say now you’re gone that the world isn’t working without you but we both know that’s not true. Your magic and your life and your gifts are bigger than death. I want to say the world is less bright and beautiful but your magic is not fleeting you have permanently made the world a more beautiful place.
Your love and your life will resonate always.
But darling boy as I focus on your mate, Bede, my heart is having trouble working without you.

Francine, my grief runs deep. Your beautiful boy embedded himself on my being. He changed me. Like so many I came to love him so deeply. The thought of him placing his little hand on my own and saying “I love you Issy” will comfort me. I hope in time the fact he was loved so deeply and changed so many people will come to comfort you.

Francine, we are all here behind you, Roy and I, the 3B mums who have been on this journey with you – all of us. Trying to sure you up with our love but I know, as you have so many times before, you will find the strength you need within your own self. You are the strongest woman I know. You are an example to the rest of us. Going forward Christian is lucky to have you as his mum and so of course is Blake.

Thank you for allowing me to love your son especially during such an intensely personal time. It has been a gift an honour and a privilege.


Blake thank you for singing and dancing and beat boxing, taking a break and for making the world more fabulous. Thank you for dropping by to say ‘hi’ to ‘baby Bede’. You are so clever and so loving and at times brutally honest. Your beautiful gift of making each person feel as though they were special was nourishing.

Buddy you conquered cancer. You dominated. You lived and you loved and you died on your own terms never defined by those pesky ‘lumps’.
For the last few months when I saw Blake I would hold and rock him and tell him it would be ok and he would tell me he loved me.
Blake it’s finally all ok.

This photo os taken from Blake's Facebook page Wishes for Blake.

Blake Charles Stuart Dingsdale




    This post is made with Blake’s mum’s blessing.
A bede update will follow soon. I just realised how long it has been between posts and Bede is doing so well.
Blake has been such a large and happy part of Bede’s journey it was imperative we acknowledge his life and his passing.


Clap along if you feel like happiness is the truth….



We’ve been busy living.
We’ve had beautiful Bede’s first easter at home but it was his second easter. We are well and truly in the year of seconds now!

We’ve been home which has been challenging and care intensive but also fortifying.
We’ve been on picnics in parks and lakes and little monastic country towns. We’ve been for bush walks and BBQs and to the farmers markets. We’ve sat in the fresh air and sunshine and we’ve even dragged Bede along to a wine tasting. We’ve had baths and cuddles and snuggles and kisses. We’ve been enjoying the day to day of family life and all during the school holidays so Gus has been around with us.

Most of all we’ve been delighting in our little boy’s spirit. He has the funniest comic timing and his laugh is irrepressible. He will be sleeping and just wake up bubbling over with laughter, watching a movie, in the middle of a conversation, while he’s lying on his play mat alone. His laughter and smiles and light fill the air.
So here’s what getting home and being home have sort of looked like….


Bede’s 15 month birthday…I’m always pinching myself reminding myself that I sat in ICU begging for months not weeks and here we are! living it.

 sleeping 1

Sometimes its hard to find the baby amidst the medical but then there his soul is reliant and dazzling

Sometimes its hard to find the baby amidst the medical but then his soulfulness is always there.

Mates chilling, waiting for MRI

Mates chilling, waiting for MRI

So confident, bede was so strong and happy going into surgery.

So confident, bede was so strong and happy going into surgery.

just chilling


Following his brain shunt reinsertion. This whole process can be brutal and yet Bede retains his tenderness. he is not hardened, he retains his gentle strength

Bede's favourite place in the world is the shower even at the hospital.

Bede’s favourite place in the world is the shower even at the hospital.

full body

Bede’s osteopenic now as a result of his treatment. A full body scan showed two fractured legs and a collapsed vertebrae


heading into mri


This picture shows bede exactly as he is.


this photo is Bede to a tee.

matching easter pyjamas

matching easter pyjamas


worlds most photographed baby

world’s most photographed baby

chilling by the lake

chilling by the lake




picnic laughs at the park

His joy is whole and pure. He is resettling finding his feet and once again reclaiming his peace. His light shimmers.

Physically he has been temporarily diminished but he is still whole.

He babbles. He says “hi”. He reaches out for hugs and pulls us in until he’s had enough and then pushes us away. Although his illness and his treatment have delayed his development he is so purposeful now.
Most of all he smiles and laughs and glistens with wonder.

We are happy.
Bede has been readmitted once again on the verge of his bowel perforating but thanks to the team we caught it early and he has beat it back and is doing well. The experimental treatment he has been on has involved high flow oxygen which really agitates him but everytime he manages to pull the prongs out of his nose he laughs and delights in his own determination.

That is a determination that has served him well.

A little over a year ago the Bede Update was not yet a blog and was being delivered to around 60 people in the form of a text message. A little over a year ago I sent this text out:

text1 text2 text3 text4


I asked for your positive thoughts for a day and I had no idea I would still be here clothed in gratitude and the deepest humility after a year of support, love, prayers, sunshine and good vibrations or that all of that would now be coming from so many of you.

You have not given into apathy, you have lifted us up and my gosh we are thankful.

So here, almost by way of thanks, is the big MRI news.
The MRI results are in and 5 months after chemo finished the primary tumour is still shrinking significantly month to month. It is not just the necrotized cystic matter but also the solid tumour matter significantly shrinking. This is phenomenal, unexpected, incredible. Miraculous.Our doctor has never seen this before.
We were only meant to be able to achieve 20% shrinkage. We are now so far beyond that.

o the left is Bede;s tumour May 2013 and to the right April 2014. The white specks on his brain stem that used to keep his neck crooked to one side are completely gone.

To the left is Bede’s tumour May 2013 and to the right April 2014. The white specks on his brain stem that for a while kept his neck crooked to one side are completely gone.


Bede’s face as his main doctor told us the news.

We are happy and proud and reassured and validated and just overwhelmingly happy. We have fought hard and he has fought with us and we are finally winning. We are holding on tight to each other and we are so happy.

after hearing the news we went out and had a tequila almost a year since we went and had one tequila to celebrate finding out we would have more than weeks.

after hearing the news i must confess we had a celebratory tequila before getting back to work.

Bede is defying. He is cancer conquering. He is living life on his terms. He is calmly and purposefully setting the rules.

The doctors of course still say Bede is terminal and won’t give us a timeframe but slowly, daringly, maybe naively, wild brash hope starts to creep in. Hope for time, hope for life, hope that we can continue to enjoy his company for a little longer.

It’s not an easy fight. But it is one that Bede fights with peaceful loving resistance. He is the embodiment of so much love and devotion. It’s time we all start getting used to the fact he may be sticking around for a while.

Trying to write a thank you to all of you, the members of team bede,  I imagined you all standing in front of me and this is what I would say to each of you…

You have helped me carry my child, you have stilled my hands when they were shaking, you have strengthened me when I faltered and when I was too scared to be positive or scared that my positivity alone was not enough you helped carry a mother’s load. You have held Bede as I have held Bede. Your love has grazed his forehead like the gentlest kiss. When our family faced fear, darkness and despair it was your arms we felt around us.
Apparently miracles do happen, Bede’s life is a miracle and from the bottom of my heart I believe it is you who are helping deliver it. So as I type this through tears of gratitude thank you does not seem enough but thank you and Bede’s life lived so beautifully is all I have to offer.

I hope you will all continue a long this journey with us, carrying him on this wave of good intent,  delivering the miracles that love and prayers and positivity have helped deliver

Thank you.


He may be small but he is mighty.




Last post I said I would update you on all the ups and downs of the last few months but I think its time to let all that go. We sat there with death by our side and predictably Bede stared it down. It was taxing and difficult. For Bede, and indeed all of us, it was brutal. We were in some of the worst places we have ever been. But that is done and now here we are bathing in his light and love and happiness. In this moment tired resilient happiness is our truth.










Lean in baby, lean in


Bede 2 days post surgery – he is irrepressible


What would I say if cancer were standing in front of me right now?

I’d say you hesitated. You underestimated
You hesitated and Bede in all his reckless abandon, in his relentless might, in all the glory of his wisdom empowered himself with light and love and the prayers of many.
I’d put cancer on notice.
It is no longer fighting a beautiful resilient baby. It is being dominated by a little boy who we can now see more than ever consciously makes the decision to fight. Consciously chooses to live. He is more than ever an active participant in his life and the direction he is taking. That direction is a life lived in hyper colour.

As always that fight does not come with the expected connotations of anger or resentment. It is fuelled by love and persistence and hope and light and gentle all encompassing strength.

bede icu 1

On Friday I wrote the blog while the doctors were still in the room and the nurses were starting to prepare him for theatre.
I felt guilty as though in the two minutes it took me to do that I was robbing him of my presence but his daddy held him and I typed. It had been a difficult few days and we had just had a difficult conversation in front of him and I wanted to make sure he went into that surgery wrapped in love and hope and positivity and boy did you guys deliver. Thank you.

You know what really came out of this past weekend is Bede’s incredible ability to inspire love and kindness and positivity and wild hope. Team Bede was in full force and standing behind him and you could really tangibly feel the effect of that.

So many times he has stood on the edge, and while I have no illusions about just how bad a place the edge is, so many times it could have been so much worse. Like he has stood on that edge and then just at the last moment, swayed by your love and his strength, he has leaned back. Back into our warm embrace and a life lived beautifully and gracefully and gently and most of all with determined happiness.
That happened again on Friday. They got in there and as though by a miracle inspired by your goodness and positivity his bowel was not perforated. It was severely infected. He was on the edge but leaning back and we all rejoiced. Give Bede an inch and he’ll make a mile of it.

Late on Friday night I was too exhausted, completely shattered to post here but sent this out to my family. I wish I had had the energy to send it to all of you….


He’s made it through.

He has been robust and resisting sedation although now he is out for the count and I am about to steal some sleep.

His gentle persistence pervades. His glow comforts. His inherent love and light not to be underestimated.

We’re not allowed hold him and he is not breathing on his own yet but it looks like he may have just done it again. Your love and positivity and heartfelt prayers may have just done it again and I am humbled and overwhelmed and thankful for just how much love there has been.

From the bottom of our hearts thank you and if you have any more please keep it coming. He remains worth it and he is fighting hard. He’s made it through.


When I wrote that, he had one tube running outside his body draining his brain fluid, one tube running into his penis emptying his bladder, one tube running down his mouth into his lungs breathing for him, tubes going into his jugular, his central line and one coming out his femoral artery that was giving us a constant dynamic blood pressure. It was a meeting of machines and the human spirit and in that moment I had no idea just what lay in front of us.

12 hours later his breathing tube was removed and an hour after that another one of his tubes and then I was allowed to hold him for the first time in 24 hours. As I held him he really came alive and he looked at me and laughed as though declaring ‘I’m here mum, don’t worry it takes a bit more than that to keep me  down.’

Then over the next 3 days he had serious complications associated with his brain and the tube draining his brain fluid. t was an incredibly difficult few days advocating for him as we knew it was over draining for days before the team did. They corrected the problem and he has since been recovering.

Then yesterday the surgeon came in and told us if the infection had progressed even by a small amount it was a sign Bede’s body was shutting down and dying. We got the x-ray and there again he was on the edge but leaning back. It looked as though he had improved significantly.

Through all this higgledy piggeldy up and down recovery Bede’s strength has been unwavering.  His laugh fills the room. His light ever luminescent gently dances through the air. His persistent love and life are soothing. His presence comforting. It’s all gentle and quite subdued in here but when I put my lips to his cheek his strength, his robustness, and his fight, reverberate through every molecule of my being. He is tired but he is unwavering. His joy unmovable. When he laughs he does so with his whole body and it shines.
This last couple of months feel too big in good ways and bad ways but mainly in a course altering way not to summarise and let you all know what’s happened but that will again have to be for another day. I think for now this is enough.

Today the doctors think the spine might have progressed slightly but his main tumour could be  smaller. That MRI is this afternoon and we’re waiting with bated breath. Never complacent, willing him with every ounce of our being to pull another miracle out of his hat.

We’re hoping tomorrow we will get to re-internalise the tube that is draining his brain fluid but of course that means more surgery.

Thank you all; for all you have already done and for your continued care, from the bottom of hearts, thank you.

Now lean back baby boy, lean back in to our love and positivity and wild relentless hope.
You inspire love and I want your soul and light to dance across this earth for a while longer.

Cancer you are on notice.

bede 2

we need you…

My heart bleeds with love and hope and the gentle strength that bede embodies. We are about to head into surgery for Bede who now has a perforated bowel which is threatening his life after an acute deterioration over night. We have just found out in the last 15 minutes and I’m taking this moment to recruit whatever you’ve got to give. Please if you have love hope soul meditation vibes care please take a moment and send it his way.

He is worth it and he is fighting.
During his deterioration this morning he stopped and tried to smile to let us know he was still there. He’s a gently persistent smiley fighter.
His doctors are backing him.
We’re backing him.
His nurses are backing him
we would really like you to to.
Thank you.