joy! oh joy! oh joy! She’s here!

Posted on July 11, 2015 by isabellanancy

Well I’ve had a bit of a break from the blog.

These photos were taken when Cress was just one or two weeks old. Roy and I especially love this one it seems to capture how there is always something going on.

Mainly because my hands are literally full more often than not. So even when it’s possible to think it’s impossible to type.

In fact most days I draft a blog in my head but the further it goes between posts the more overwhelming the job of catching up becomes.
Most people that meet us comment “wow you’re hands are so full!” and I reply with pride “not as full as our hearts”.

For now I want to share Bede’s biggest news, our greatest joy, the reason we’ve been so busy. Our beautiful Bede has become a big brother and our family has grown into itself. Our beautiful unexpected blessing has arrived and put light to any darkness. I remember praying Bede would remain with us long enough to meet his sister and now here they both are babbling away to one another… reaching out to meet one another… loving one another as easily and as instantly as only siblings can. We are consumed by the colourful, loving, chaos of family life. Bede is a loving brother, he learns from the best. Gus remains a shining star and a beautiful example of how to be a wonderful big brother. At times Bede is even instinctually gentle with his sister. Anyone who knows Bede and his brand of enthusiastic, excited movement will now how incredible this is. I still remember the moment Roy lifted our daughter onto my chest for the first time. The air was thick with love, joy, happiness and I was completely overcome with the deep gratitude. Even then I was underestimating just how happy we would be.
We delight in her everything, the way her hair stands on end, the sparkle in her eye, even her burps. Cress doesn’t smile, she grins. She has completely captured us.

Cressida Joy Margaret arrived in April and has been reinventing our world ever since.

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.

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.

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.

Growing.

Posted on January 5, 2014 by isabellanancy

I am not sure what to say or do or how to act. I am sitting here, as what must surely be one of the most blessed and privileged women in the world because I get Bede. I come with humility and humbleness and hope that you will as you have so many times before, get behind Bede.

Bede’s birthday was not our best. If it were any other day we would have taken him into the hospital.

We kept him home not for the photos or the party but just to spare him being needled and examined and scanned on his birthday.
We have been averaging a couple of hours sleep a night for the last 5 nights or so because Bede is irritated. He has been crying a bit, vomiting a lot and grizzling all the time. It was difficult to get food or fluids down his tube without making him distressed.
We were monitoring him at home but knowing within our selves that the tumour was growing.

We took him into the hospital and I knew.
We waited for the scan and it felt like that instinctive feeling you get when danger is coming and I knew.
We got called into the doctors office and now they knew.
Now it was real.
We told Gus and all he had to say was “Come on!”

The scan was just a CT scan which is not overly accurate to compare to the more detailed MRI but it looks like it is growing, it looks like we have regained the 20% we lost. Combined with Bede’s symptoms that is really not great.
The doctors resumed the drug that makes Bede’s face swell up and upped a lot of his other doses to try and make him more comfortable.

Bede is still regularly laughing at us, smiling with us, loving kisses, enjoying playing his piano and is his usual tender self. But there is also distress where before there was none.

His skin is silk, I never want to forget that feeling.
When he sleeps or when he is unsettled his fingers tip toe across the bed looking for me, he grasps me for a moment and then lets go. Happy to have his space but reassured that I am close.
His laugh remains rambunctious and resilient. His magic is soft and gentle and hopeful. His light uncompromising, continuing to lead the way.
He is weakened but he is not diminished.
He is whole.

Everything I wrote in the blog on new years day remains true. He is still evolving and developing and growing.

Every time I look for heart ache there is none. My beautiful, soulful, loving boy is here and I am thankful.

On the 8th of January we have his MRI. That will tell us definitively just how bad a position we are in.

My words can not do justice to Bede in this moment and any words I do have feel like they are all about me and how much I love him and this is about Bede.
Bede is strength and beauty and substance and light and leadership and hope. He is gentle, tender, unrelenting strength and love. He is goodness.

My words fail me, but my deep love for him implores me to write today. To ask you, the people with all the hope and love and prayers and positivity that have bestowed Bede with so many miracles, to please get behind him. Focus your happiness, hope, positivity, prayers, love, whatever you’ve got on Bede. We want as much happy time as we can get to afford him a life filled with as much, wonder, marvel, joy, relaxation, love and exploration as we can. We are not greedy, we know this wonderful life will come to an end, but for now we want more. More for us and Gus but even more importantly more for him. I truly believe your loving and hopeful support has achieved that for him before.

I have said it before and I will say it as many times as I need to…. I promise you he is so very worth it.

As the tumour grows and effects his ability to have food or rest he manages to retain his peace.
As the chaos of cancer begins to grumble and swirl he is grounded and he smiles and laughs.
As the irritation flits in and out he loves tenderly.
We love him deeply, a love that is only paralleled by our pride.

This resilience, beauty, peace and happiness is his defining truth.
He is small but he is mighty. He is uncompromisingly Bede.

(follow up post here)

The balance of power

Posted on December 14, 2013 by isabellanancy

I hoped but did not expect my open letter to reach Gervase Chaney’s desk. I certainly didn’t expect over 1000 Facebook shares in its first 36 hours. As the response grew bigger I was at the hospital with Bede and I started thinking about taking it down and I didn’t expect other parents to ask me not to. I certainly didn’t expect the influx of messages, emails, comments and approaches of so many other mothers thanking me for using my voice. I didn’t expect the regret from people who had been through this and had not used theirs. I didn’t expect the level of emotion behind those responses. I didn’t expect the advances of media. I certainly didn’t realize just how many of you have Bede’s back.

I think the hospital is empowered in a lot of ways and sometimes that is a negative, petty and bureaucratic power. I think Bede’s power is in the mass amounts of love he can generate and mobilise. I think that is a strong, refreshing and positive power that cannot be underestimated. I think that power is testament to his light.

In all the reactions I have had I had negative feedback from about 4 people.

I am all about honesty and accountability and context. My reactions in the letter did happen. I was desperate and I did raise my voice and I know some staff did not like that but there was context to them. My letter provided that context.

The letter was aimed at a bureaucratic decision that removed reactions from their context. Towards the end of the meeting Dr Chaney told us he would aim to review the decision within 24 hours. Nothing was going to have changed in that time. We sensed he knew the decision was wrong but that he was standing by it anyway. Whether we were right in sensing that or not the decision was petty and bureaucratic and it was unforgiving punishment toward a family who have tolerated and forgiven so much. The letter was context. We are not threatening people.

Now let me give you the context in which some of these incidences have occurred. They occurred in a big picture.

One that also includes the nurse who I thank repeatedly every shift because I feel when she is on I am off duty and know Bede is in the best hands possible.
The nurse who must be the only other person in the world who can sense something is wrong with Bede before I can.
The nurse that sat with Bede after her shift had ended while we were in a meeting because it was an important day for our family.
The doctor who said we could call her anytime over the weekend while she was off duty because I was so scared without her advice I wouldn’t know what to do.
The same doctor who is so giving of her time and energies not just to Bede but also to our family.

The nurse who makes sure she talks to Bede while she is treating him.
The nurses that head into Bede’s room on their way to tea break to squeeze in a quick cuddle.
The nurse who bakes nearly every shift and then SHARES it.
The doctor who in the middle of a Bede emergency made sure I got a juice to help stop my shaking.
The specialist who drove from Fremantle to Subiaco at 7:30 at night because he wanted someone who knew Bede to review him.
The nurse who rubbed my back and encouraged me on when no one would listen.
The doctors who brought him back
The doctor that listens.
The coordinator that understands.
The nurse that empathises.

I think the word ‘mistake’ is too generous for the incidences I detail in my open letter and there are many more of them. There is also a lot of good staff. I think I acknowledged that in the letter. A lot of those staff are also outraged when these things happen. I certainly do not want to be the person that “paints them into a box” as one criticism said.
Our voice empowers our family but it is not a petty unfair empowerment. It is an honest, true and positive power.
The letter is true. It was never meant as a criticism of the nurses or individual doctors. It provided context for a petty bureaucratic system and a petty bureaucratic decision that robbed my boys of precious home time together.

Although I am sure Dr Chaney does not need nor desire a disenchanted mother coming to his defence he seems like a nice man. He is a doctor for sick children, a father. He allowed us to say our piece in the meeting even if we did feel as though it fell on deaf ears. I asked Dr Chaney if given the exceptional circumstances and lapses if he could say he would have acted any differently and he admitted that he could not. This is not about a witch hunt. My letter was addressed to him because he represented the system that day and although he seems to lead it he is only one part of it.

The treatment that we required HITH for has finished. We still seek some reassurance that that service will be available to Bede in the future and have none. Despite Dr Chaney assuring us in the meeting that he would attempt to have his grounds for refusing us this service in writing and provided to us within 24 hours and also that he would provide us with details regarding any documented incident within the last 6 weeks, the main period for which he was making his decision, none of this has happened. We have not heard from PMH in regards to this matter. Ultimately Bede is still not availed of HITH.

At the end of the letter I said that was a one off post, that Roy and I felt the need to speak out about Bede’s reality but I am posting this today because I do not want to be the person that uses their power in a negative way. That is not and has never been what Bede or our family are about.

He may be small, but he is mighty.

– Isabella and Roy

This is who it is all about. Bede helped us decorate the tree last night.
A proper Bede update will follow later today or early tomorrow. He is doing well. He is shining, he is developing, he is irrepressible and our love and pride run deep.

Bright blessed days and dark sacred nights.

Posted on November 30, 2013 by isabellanancy

This will be one of my longest blogs. A lot has happened in a short period of time and I am too tired to make this post beautiful, too tired to make it appealing, too tired to cull the boring bits. This is what it is. Bede’s truth.

The last week started with an ambulance ride and ended with so many of us praying. Here’s what happened.

After arriving at the hospital on Monday Bede started to deteriorate on Tuesday night and we started to worry that we were losing Bede.

He was fighting a winnable battle but he was exhausted and he was coming from behind. He was more tired than we had ever seen him and just breathing was hard work. For the first time ever he was finding it difficult to shine through and that was devastating.

I sent a message to our family and friends recruiting love and positivity but even as I sent it I knew one part wasn’t true. “there must be more to come”. I realised he had filled us up, his light has shone bright and he has been more than enough for our family. That scared me even more. Perhaps it was time.

My gut told me it was line ball and we were in trouble. The doctors agreed it wasn’t good and we may lose him. Bede fought valiantly but I was losing my boy.

Come Wednesday afternoon I asked for a moment alone with Bede. I whispered in his ear that I loved him. I sat by his cot holding his hand and told him the truth. I told him he is magnificent and that he had exceeded all expectation. I told him he had made me happier and given me more than I could have ever asked or hoped for. I told him he had done enough now and if he was tired and if he wanted to go that was ok, he could. He had given us more than I could have ever hoped and if he chose to stay around for a while it could be our turn to give back to him but whatever he chose was ok.

He was exhausted.

ICU came and gave him more supportive measures. My incredible husband Roy describes it as “he was standing on the edge of the cliff but not looking down”. We were maxed out. Any more support meant we would have to be transferred off the ward to ICU; he would need to be anaesthetized and ventilated. We needed to consider what our wishes were for Bede. Our primary doctor one of Bede’s biggest advocates said that should the time come we ventilate. For now we fight and that made sense because he was still fighting to. She acknowledged we were in a bad place but told me she still had faith in him. We both decided it was time to get Gus in to see Bede just in case. Gus brought unconditional healing love into the room and sat by Bede as I held him and Gus read to him for a while. Then overnight what has become almost the ordinary happened. Bede put his head down and one foot in front of the other and he worked. Slowly but surely he reclaimed himself. He shined again.

We had about 24 hours of peace. Bede remained maxed out but we suspected he was able to progress and were just giving him a chance to rest. Then it all turned again.

Bede’s body writhed and thrashed uncontrollably. He screamed in distress.

We kept pumping him full of an array of IV drugs to try and stop it but nothing worked. ICU came down and spoke to us about the possibility of anaesthetizing him and ventilating him until hopefully this episode passed. We were now losing him again but in a completely different way.

The on call consultant who knows Bede well talked to me on the phone at 4am. He said it was time to stop the drugs, they weren’t working. There was nothing we could do to make him comfortable. It was time for us to just hold him through it. That was the hardest thing I have ever done and late that sleepless night I wrote this:

I have always said Bede’s resistance to cancer was much like a peaceful protest, his gentle strength forging the way.
Tonight it’s all out war. It is violent. He is in the trenches. He is fighting a messy, dirty battle and he is doing it with grit and determination.

It almost reminds me of a shark feeding frenzy. The waters obscured by the movement, frantic, fast. His limbs are flailing his back arching, he’s cycling through uncontrollable movement and agitation before managing to ground himself for just a moment before the next round. It is unrelenting.
I’ve never liked the word fighter for Bede, I’ve always found it too abrasive for his gentle soul but tonight he is fighting for his peace, for his light, for his life. Refusing to be taken easily, refusing to leave his big brother just yet, refusing to be robbed of what he has rightfully earnt – some time off treatment by the beach enjoying life.

It was pretty accepted that Bede wasn’t aware of us at that point but I refused to believe I couldn’t reach my baby on some level. I spent the night trying to pour love into him so in the midst of his despair he wouldn’t feel alone. It took every ounce of my being to smile as I sung “this little light of mine” my voice shook and my mouth trembled but I smiled and I sung and I tried to fill him with positivity and love and so did his daddy. I think we all found out just how hard we can fight that night.

Even in the depths of his despair, as he thrashed and wailed, he paused. He became Bede. He looked at me and he smiled, his light shining brilliantly, dazzling until seconds later he succumbed again. He took a moment to remind us just how hard he can fight, to remind us it takes a bit more than this kind of horror to keep him down. As he thrashed his light was dimmed but unassailable he glowed. His gentle loving soul fortifying us reminding us to be peaceful be patient.

On Friday morning after 12 brutal hours neurology saw us. It wasn’t seizures. He was aware of us he just couldn’t show us that. The movements were coming from a different part of the brain and were not sure why it’s happening. Finally early yesterday afternoon we got it under control. A lot of those measures have a sedative effect so he is catching up on his rest.

Now he sleeps. His vital signs, his heart rate, his oxygen, his respiratory rate are all good. We have managed to do a miniscule reduction in the support from ICU, it is a reduction nonetheless and soon we will start him on a tiny feed of 5 mls an hour. It will be the first time his body has had food since early Monday morning.

Today he gently tip toed his fingers across my own, he smiled gently but purposefully. He is resilient.

Last night Bede’s aunt came and played the guitar and serenaded him. Her chords permeated his upset and he relaxed. She played all his favourite songs and created a few new favourites. She helped me help him resist drifting back into despair and helped us give him some sweetness.

If we didn’t know already over the last few days we have found out what our son is made of.

Bede is weakened but he is not diminished, his strength incontestable, his light indelible. His soul glistens with hope and love and beauty and light and joy. He is a blessing in its purest form.

The fight is hard but he is soft. He is tender and he is warm. The fight is robust and he is delicate.

Although it is not perfectly apt it reminds me of a quote that I came across some time ago.

Returning violence for violence multiplies violence,  adding deeper darkness to a night already devoid of stars.  Darkness cannot drive out darkness:  only light can do that.  Hate cannot drive out hate: only love can do that.

So yes the fight is hard, the cancer is dark and Bede is soft and glowing and tender and I feel like that is just what he needs to be. It is not fair and it is not right and this did not “happen for a reason”. It stinks but if there were ever a baby up to the challenge you better believe it is Bede. His soft beautiful love, his gentle soul, his resilient tenderness and his purposeful persistence have him in with a fighting chance and for this fight I’m backing Bede. Cancer ain’t seen nothing yet.

I want to add a thanks to all the nurses who have surrounded him and us with genuine care this admission and who have prayed for him. Who have made us feel like Bede matters and is valued even in this environment that he is more than just a number on the ward that he is cared for. I want to thank everyone who has sent him love and positivity this past week. From virtual strangers to our nearest and dearest thank you. Your love strengthens him and us and enables him to work his magic.

Bede has been remarkable.

If he chooses to go it is ok. He has done enough and I have tried to be enough. Mothering him has been a privilege. I have tried to empower him to make his mark through this blog and through all of you. If he chooses to stay that would be a dream but if he chooses to go I hope you will help me to wrap him up in love and tenderness and light and joy and soulful kindness. In the meantime, while we wait, I hope you will help me fortify him with love and positivity as his light has so often fortified me for the fight.

As I nuzzle my head against his own I am at home in the world and I count my blessings.

(I did a photo post earlier today showing some of the last 6 weeks including our happier times and times of growth and joy. you can check it out here)

	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

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