Let’s bring Bede home.

Posted on January 21, 2015 by isabellanancy

Bede has found his way to his joy again. We remain depleted but Bede has been reclaiming himself which has given us some sweet relief.

Bede needed surgery to explore the source of his internal bleeding, had multiple biopsies and had a special feeding tube inserted into his stomach which is something we’ve been planning on for a while. My understanding is that he is one of two children in the hospital, likely the state, that has this tube. The purpose of the tube insertion is to give him a better quality of life.

Bede was off pain killers in under18 hours and smiling the next day. Like a champion.

The bleeding stopped.

Then slowly the vomiting began. By three days ago it was the first time we had seen Bede in pain in a long long time. I was once again in the position of tearfully saying ‘there is something wrong with my child’ and having people hear that, believe that but have no answers.

Well we found our answers and Bede is heading back into surgery today to HOPEFULLY correct a complication from the last surgery.

Bede has been reclaiming himself. Slowly the requirement for sedation was easing. He laughed more freely. He is tolerating being upright again. He plays. He is happy. Then a unsoothable surge of pain interrupts him. It is unlike the agitation of the last few months as soon as the pain passes he is back and wanting to play music.

I am writing this on my way into see him before the surgery. We’ve just been on the phone together and he is laughing big belly laughs in his daddy’s arms.

I am writing this in the hope that you will all get behind Bede today. Send him love, prayers and positivity. Every time I reach out to you all asking for love and prayers and good vibes he turns a corner. He is fighting the good fight with peace and love and this bubbling infectious happiness that is so filling. The melody to my soul. When people play with him they laugh or cry. His light is bright.

He deserves for this to work. Let’s bring Bede home. Let’s carry him there on a wave of happiness.

Bede may be small but he is mighty.

Let’s bring Bede home.

Our christmas star.

Posted on December 14, 2014 by isabellanancy

Wow! What a big post I have ahead of me. Bear with us – the news is worth it!

We’ve been in such a difficult place over the last few months it’s been impossible to write but we are glad to be moving forward and happy to be updating you.

It’s also been a massive few months!
If you recall first we were told his tumour was growing and we braced to lose Bede.
Then we went to Sydney.
Then we came back and hoped for whatever was best for Bede. Well what a beautiful wish that was. I am so happy and privileged to say the tumour had not grown! The previous scan results were incorrect. The cancer was not winning.

The real magic, the delicious stuff, the hope inspiring soul shaking, world altering stuff happened in between those two scans in Sydney. It’s a long story but one we need to tell you and I can’t find a way to condense it.

In September we made our way to Sydney to see some doctors at that stage with the news Bede’s tumour had grown.

patiently waiting to see the doctors.

In between appointments we drove down to Melbourne to see my beautiful extended family and introduce them to Bede for the first and possibly last time.

Bede wasn’t himself but was wrapped up in the kind of love, generosity, easy familiarity, friendship and self deprecating humour my family does so well. I have barely had a chance to breathe since being back let alone express my deep gratitude to my whole extended family for such a warm welcome.

Bec I can promise you Bede only eats the people he loves the most!

Gus loved Acland street even more than I did as a little girl!

In fact we almost skipped seeing the professor in Sydney that PMH had referred us to as we were having too much soul nourishing fun with the gang. To be honest we were convinced that being PMH’s guy that he would blindly back them up and say all the same things. We went anyway.

He defintitely did not say all the same things!

HOLD ONTO YOUR HATS PEOPLE!!!!!

He said he does not believe Bede’s tumour is terminal.

I’ll let that hope filled glorious sentence sink in for a moment.

He is arguably the best peadiatric neuro oncologist in Australia and he said he does not believe Bede’s tumour is terminal. He said he has seen this before and the patients did not die.

My gosh we have never been so blown away. We sat there in that office like stunned mullets.

When the professor said I do not believe this tumour is terminal I asked him to repeat the sentence as though he was speaking another language. This has never even been a possibility for Bede and then all of a sudden it is. It was a mammoth moment.

We always knew the type of tumour Bede has can, hypothetically, reach burn out. Our doctors in Perth had always made very clear that the way Bede’s tumour behaved he would die before he reached an age when that could happen.

Well not according to the professor – he says we’re already there. That the tumour has ‘run out of petrol’. That’s why the tumour kept shrinking 6 months after chemo. That’s why it’s still stable. That’s why while the PMH doctors predicted we’d only ever achieve 20% shrinkage we have now achieved 80%!

He said he didn’t believe the last scan really did indicate growth (turns out he was right!) and that the tumour is no longer behaving aggressively. He said if this was his patient he would start focusing on nutrition, hormones, OT etc and leaving Bede as minimally disabled as possible. He said he would not let them send us home to die again.

There has been a lot to come to terms with including the worst case possibility that Bede lives but is severely disabled and what that means for all of us. There has been a lot to process. That processing has been grounded in faith, love and sharing the news with just a few of our closest friends.

The best case scenario is glorious. Bede will continue to develop and although delayed by all of this he will in his own time reach all his milestones and grow to have a fulfilling life.

As his parent’s and his advocates we have to hold this opinion along side the second opinions we have received from the UK and the US both of which say Bede’s cancer is still terminal and that that won’t change. From the beginning we have said if you gave Bede 1% he would be the kid that made it. I think he definitely has that 1% now and we move forward with reckless hopeful abandon.

I can’t really explain it though. There is fear. Fear we will lose Bede, our shining light. Fear that an unfillable hole will be left in our hearts and family and lives. But Bede teaches and exemplifies bravery for us all. It was sometime ago that I secretly stopped believing this cancer would take him. Fear of sounding like a mother in denial stopped me from articulating it but the belief Bede was hanging around at least a little longer than expected planted like a seed in my heart and mind last November and that seed has just continued to grow.

In the last 24 hours 3 people have cried tears of joy upon seeing Bede. It’s a brash statement but I really believe he is, day by day, becoming the good news story I always believed he could.

All this news made heading into ICU and potentially losing him to pneumonia that targets low immune systems all the more difficult. So thank you for your love, your prayers and your hope.

I want to once again thank you all. Each of you are amazing. You have not given into apathy. You have not become desensitized to the ups and downs of this journey. You have not turned your backs. You have given our son a platform to shine. To be known to the world. To have his life seen and noted. You have fortified us with your prayers and positivity and hope. I once again write this with tears of gratitude and a renewed belief that miracles happen. This year Bede is our Christmas miracle. Thank you for sharing in the joy of him.

Ill say it 100 times the miracle bede has had and continues to need is all of you. Please keep helping us deliver this miracle.

I sincerely hope going forward this blog documents Bede’s triumph, his rich light filled defiance and his beautifully lived life rather than his death. Either way I now have so much comfort that whatever lies ahead Bede will do it his way and that’s just perfect, a miracle in itself.

For now Bede giggles. He is happy and he is whole.
His light bubbles up from deep with in him as he gasps for air between belly laughs losing himself in his joy.

His trademark light is undimmable, he is radiant, all out dazzling. Our Christmas star.

He stretches, he climbs, he explores and you can see him grow.

He is cheeky and his sense of humour is bold.

There is still that foundation of peace, a deep peaceful contentedness that sees him through difficult times but now his cheeky smile, his eagerness and his growth just take your breath away. Where before there was a calm stillness now there is energetic exploration.

Our little boy is growing up. What a flipping delight that is!

He looks like a boy at the starting line. Ready to take on life and embrace every opportunity to live it. Roy and I are 100% committed to providing him with every love filled adventure he could hope for.

Bede may be small but he and his joy are mighty. He’s not done yet.

Note: For now Bede’s still in hospital. We’ve managed to get on top of his lung issues and he is off oxygen. He is needing one of his drugs (a substance that occurs naturally in our bodies but due to the tumour not in Bede’s) every 6 hours via injection. Once we have this sorted out, a tall order, we will get to take Bede home. I’ve lost track of time. I think this admission has been nearly 2 months. SO far it is starting to give us answers though which is good. We are hoping to have Bede home and in good shape to enjoy christmas with his family.

Tada! Bede’s back.

Posted on December 5, 2014 by isabellanancy

I can’t really put into words my optimism right now.

tada…. i’m back!

Bede has been out of PICU for a little while but there was the strong chance he would have to go back especially as we were finding it difficult to maintain IV access. While that chance was there and still so strong we didn’t want to jinx it too much. Now that is looking less and less likely.

laughing after an ICU doctor said he probably wouldn’t make it

I have a lot of updating to do and I will. There is still so much big positive happy news to deliver! We need to fill you in after you all so happily ‘held this space‘ and to give you the results of our last MRI scan when we all wished for whatever was best for Bede.

For now Bede seems to have made such a strong comeback. With the incidental adjustment of some meds he is the most himself he has been in months. He laughs freely and happily and it’s glorious.

Our happy little bumble Bede

We know he’s not out of the woods yet, we know his recovery is slow almost too slow but his soul, his spirit, is strong.

We will CT his lungs on Monday and hope there is nothing unexpected or too bad there.

Hope is tangible and although Bede is still on oxygen he is nearly crawling!

Slowly but surely we are making ground.

I feel positive, optimistic, uplifted and happy all his teams are communicating with each other and us.

Gus has made his high flow oxygen tubing his teething toy.

Bede has made his high flow oxygen tubing his teething toy.

this is too much happy for 3am!

So the big update is being drafted as we speak…. Get excited Team Bede, get excited.

For now I just wanted to share these pictures and let you know that once again your love and prayers and positivity have helped carry him through a storm that some thought he could not weather. Our last post received hundreds of Facebook shares, thousands of visitors and views from dozens of countries. We are so deeply humbled and thankful that so many of you are getting behind Bede. We truly believe it is making a difference in his life.

Bede is small but he is mighty.

This is Bede after all.

Posted on November 25, 2014 by isabellanancy

Bede’s been in PICU fighting for two days now. They think we could lose him.

He of course has other ideas. He is fighting with a smile.

He may be small but he is mighty and his brand of resilient happiness is not done yet.

We have prayed and loved and hoped ourselves into physical and emotional exhaustion. Bede was heading into a period of intense rehab and moving beyond his tumour into life. We are devastated all this potential for a happy life could be snatched from him when he is so close to it.

A massive thanks from Roy and I to everyone who has sent love, prayers and red bull.

Bede and his dad

I am too exhausted to convey how much this light filled child and his determination to stay with us means to us. In this moment there are no words just profound love and faith. We are proud beyond belief and hopeful beyond reason.

As one doctor who knows Bede well said… “He’ll come back. This is Bede after all”

Bede’s tumour is growing.

Posted on August 14, 2014 by isabellanancy

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

Posted on August 6, 2014 by isabellanancy

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.
Seizures.
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.

infographic obtained from http://www.curebraincancer.org.au/page/8/facts-stats

Note:

* 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.

Posted on August 5, 2014 by isabellanancy

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.

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

Posted on April 28, 2014 by isabellanancy

GOOD NEWS AHEAD:

—-

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.

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

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

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

This picture shows bede exactly as he is.

this photo is Bede to a tee.

matching easter pyjamas

world’s most photographed baby

chilling by the lake

brothers

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:

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.

Note:

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.

moving mountains

Posted on March 18, 2014 by isabellanancy

I know it’s been a while. We have been busy living the highs and the lows and basking in Bede’s persistent glow. He has been growing, nourished by our deep love and with an easy happiness that comes from being in your context.

Over the last couple of months we have had some beautiful times spent in the glowing sunshine, laughter wafting through the coastal air, sipping strawberry lemonade, feeding dolphins, dozing in the gentle southern sun and snuggling into the comfort of home. Wishes have been busy coming true. We have also had some extremely difficult times, especially over the last 3 weeks as I held his lifeless body to my own watching his heart rate drop and calling for help.

I have been putting off posting until I had the space to give the joy all the room it deserves and I do not have that in this moment. Bede is busy and so then are we as he makes his latest come back. I suppose I have also been putting off posting until I really knew what Bede wanted. From the lifeless boy we worried for to spending hours laughing last night he has shown us. He is fighting. He is undeterred. He is resolute. He wants life and all the wonder that holds and he is fighting for it.

Bede’s resolve is uncompromised, hope pours from him, his eyes glisten with promise and love and his inner joy that he has gifted the world with. His gentle tenderness is profound and unerring even as he scales the highest metaphorical mountains. He is no longer our infant son he has become our little boy. He is robust.

This post is me once again laying myself at your feet and humbly asking all those of you who have followed his journey to please get behind him today. He has another MRI. He has pulled some miracles out of his hat over the last few weeks. From nearly being sent home to die to the tumour possibly and miraculously getting even smaller without the chemo to his spinal cancer possibly taking off. There is a lot riding on today. We are in limbo today waiting to find out if we are approaching end stage or if we are able to keep on making wishes come true. (Melbourne you are in our sights!)

We are tired and we still need to wrap him up in goodness. Today any love, positivity, hope, sunshine, good vibrations, joy, belief you could send Bede’s way are really needed. Our gratitude to each of you runs deep.

He’s done it!

Posted on January 17, 2014 by isabellanancy

We’ve done it! He’s done it!

We got the formal results of the MRI and the tumour has shrunk a total of 50% over the course of treatment.

Let me make that gloriously clear… The tumour has not regrown.

This post has been a little delayed. Thank you for your patience and unwavering support.

I would have loved to shout the news from the mountain tops the day we found out but instead we sat in our doctor’s office, in shock, sedating Bede, holding him while he screamed, perplexed and trying to figure out what was happening. Over the last 2 weeks we have been averaging about an hours broken sleep a night. Attempting to keep Bede comfortable has been an all consuming challenge and no one could get to the bottom of what was wrong.

We finally found a nasty urine infection, a bacterial gut infection and gastro. … the perils of having a suppressed immune system.
Now he is improving. He is smiling more freely and laughing again. His chuckle fills the room.

I am now able to take a moment and bathe in his beautiful light, wrap myself in his warmth and rejoice in his triumph. The news, finally, gently settles and I delight. It hasn’t grown!

With love, positivity, hope, prayers, blind faith and determination… It hasn’t grown! He’s done it again. Multiple doctors looked at that CT. Neurologists, neuro surgeon, radiologists and oncologists. It looked bigger to everyone but it’s not. Bede has done it again.

I do not feel relief. I feel pride. A deep, soul nourishing pride. A pride that is only paralleled by my gratitude to each of you. I am sure I have said it before and it remains true- the miracle Bede has needed and continues to need is each of you.

Make no mistake, your love, hope, positivity, prayers, vibes, thoughts have carried him through as though on the wings of angels.
I am humbled. I am humbled that you have not only taken a moment out of your day to send Bede some love but that you have held him in your thoughts and minds and collective consciousness. That you have wrapped him up in kindness and hope and protective love.

Make no mistake, the love you send Bede helps him in a very real and tangible way.

Our family has big decisions ahead of us. Ones that involve life and death, pain and joy, hurt and time. There is a balancing act ahead. I have faith that whatever is meant for Bede, he will continue to lead us and light the way.

Tonight Gus says that if everyone is confident in Bede, we might just get through. I told him the tumour has not grown and he said “well that’s a delight to hear.” Yes beautiful boy it is!

Bede’s light is soothing. His essence is transitional and strong and gentle.
He is bruised but he is recovering. He is determined and he is joy.
He snuggles.
He will laugh as long as you are happy to laugh along side him and is finding humour and happiness in the most peculiar things.

Roy and I are feeling so blessed to have our family together under one roof again tonight.

He’s flipping done it!

I can’t think of a better note to leave you on than this video we took earlier today. This video lets bede speak for himself. Bede has decided that going to sleep is hysterically funny. He is such a happy boy.

Thank you.

	Alex on Because you were his.
	Celina on Because you were his.
	Alex on Because you were his.
	Dijana on Because you were his.
	Michelle on Because you were his.

The Bede Update

He may be small but he is mighty

Tag Archives: he may be small but he is mighty

Let’s bring Bede home.

Our christmas star.

Tada! Bede’s back.

This is Bede after all.

Bede’s tumour is growing.

Brain Cancer

Dear Gus, thank you for your nurturing cooling shade.

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

moving mountains

He’s done it!

Let me make that gloriously clear… The tumour has not regrown.