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.

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.

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.

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)

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)

Half way through and the triumph is his.

Posted on October 19, 2013 by isabellanancy

It has been an incredibly difficult few weeks, some of our worst in fact but in this moment Bede is defiant and triumphant. He shines, purposefully and hopefully.

Bede’s happy soul and his inherent light are irrepressible. He bubbles and the delight he is taking in the world is contagious and full. He is cheerful. His coos are high and happy. He laughs freely now. A breathy chirpy chuckle. His happiness comes with a new found ease and he draws us all in. We are taken and my god we are happy.

I am working on a post to update you on the last few weeks but it is difficult. A lot has happened and it has been taxing. I don’t think it is too dramatic to say we could have lost him and yet here he is now displaying his joy and resilience in all their glory. Bede is triumphant.

I just wanted to make sure I took this moment to mark Bede being halfway through his treatment. To that aim I’m posting the slideshow I referenced in my last post.

Here is Bede, putting one foot in front of the other and quietly, diligently, purposefully, happily, joyfully kicking cancer’s ass. Here is Bede bringing light and love and wonder to all those around him. Here is Bede facing a rare brain cancer and doing it with grace. Here is Bede, take note he won’t be here long and he is magnificent.

Thanks for stopping by and thanks for seeing our beautiful Bede.

Thank you for wrapping him up in your love.

Thank you for empowering him to be known to the world by sharing his story.

My gratitude to you all runs deep.

If you want the music make sure you turn on the sound.
Please don’t forget to follow the blog so next time we need a mini miracle we can call on your positivity to help carry him through. There should be a little grey box at the bottom of your computer screen that says ‘follow’, its that easy,
Is.

A quick catch up.

Posted on September 27, 2013 by isabellanancy

It has been a while since I posted. I know this for a fact because I have been receiving messages all day telling me so.

Bede is strong, vocal, funny and shining bright. He is careful, he is an explorer, he is teething and his soul is as magical as ever.
When he speaks people listen and his eyes command your attention.

I’m hoping to write a proper update for you tonight but for now this is Flash back Friday for all of our new followers these are the links to some past posts that show some of where we have been. …

Smile Bede Is

My Gosh we adore him

Choices

Don’t forget to check the ‘A Baby of Substance’ and ‘About’ links at the top of the page and please don’t forget to follow the blog.

Your love and prayers and support continue to humble and strengthen us.

I spoke at a fundraising event for Bede and our family last night. The whole event and the lead up to it have felt like a warm embrace filled with friendship and love for our family. I have attached a copy of my words for those of you who I know had been hoping to make it but in the end could not. It was a wonderful night.

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Hi everyone. Thank you for being here tonight and thank you for listening to what I have to say.

I’ll give you a really quick bit of background, because as some of you know I fear the details of our journey are boring I also know some of you are here learning about Bede for the first time tonight.

About 5 weeks after Bede was born, 5 exhaustedly joyful weeks I knew something was wrong. It took 2 hospitals and another 11 weeks of relentless advocating to get the scans that finally brought us a diagnosis. Bede had an advanced brain tumour and it was certainly cancerous because it had spread throughout his brain stem and spine. His kind of cancer is rare and fatal. We get given different numbers depending on which doctor we speak to some say there are only 6 reported cases of this in the world. Some will just say it is very rare. After the biopsy and the pathology returned we pushed for a life expectancy. The doctors were reluctant to give us one because they don’t have a crystal ball but eventually, they told us, Bede had 2 years. One of intense chemo and hopefully one year of quality life at home with his family.

A lot of you who now our family know that we have tried to stay positive and happy through this experience.  We don’t see much point in grieving while Bede is here. We will have a lifetime for Grief once he is gone. For now we make the choice to delight in every moment.

I want to be real tonight. I want you to know why your support means so much to us and what it has helped us through  I want to take this opportunity tonight to catch you up, to tell y ou about some of the realities that I don’t blog about and hopefully help you understand why we’ve been so absent and not as present in our gratitude to you all as we would have liked.

I chose the photos that you have seen in the slideshow tonight. They are extremely illustrative of Bede’s journey. They are not the professional photos, they’re not all beautiful but they are true. I suppose the only photos that are missing are the graphic and slightly upsetting ones that show just how skinny and ill bede became before his diagnosis.
I’d like to tell you about some of the photos you did see.

There is the photo of Bede outside.

I fought hard for that moment. He had had a long admission and was about to head into brain surgery less than 24 hours after diagnosis. If he was going to die the mother in me wanted him to have fresh air in his lungs and to have felt the sunshine on his face.

There were so many ‘last’ photos. The moments we were told this is very likely it. You may be losing him now in this moment. Desperate to document his last moments we would snap away. Crying, holding him and willing our love to comfort him.

The photos of Bede and Gus when we had to decide with our doctor do we let him go for his play date or call him in to see his dying brother one last time.

You saw the moment that my acceptance of Bede’s fate and my deep faith that whatever was best for Bede is what would eventuate crumble as I begged for just one more moment, I wasn’t ready to never again feel that the coolness of his soft cheeks, the weight of his body on mine or the beauty of our souls entwined. Just one more moment I begged. I’m not ready yet, I’m not ready.

I chose this photo to have (on the screen) behind me tonight because while it doesn’t necessarily accurately reflect Bede’s external beauty it does speak volumes about my son.

Days earlier we thought the cancer was claiming him. He was on ICU level IV morphine not normally administered on the ward and at double doses. He was on IV ketamine and one on one nursing. He had spent days screaming in pain as the cancer grew. You might be able to see at the bottom of this picture the oxygen he was needing to stay alive, he was on high doses of steroids as he is now. The steroids left his face so swollen expressions were difficult.

This is him smiling in spite of it all.

Getting ready to make his come back.

This is typical Bede. This is my son.

You also saw intimate kisses goodbye as we stood on the precipice yet again of our greatest fear, moments of sheer despair. But it is in those moments where we need to make a choice. To surrender to despair and horror and brutal grief or to embrace positivity and to make sure as many moments as possible of Bede’s life are filled with love and joy and songs like incy wincy spider.

The support so many of you have given us from high school friends sincerely reaching out through facebook, to school mums cooking us dinner and keeping us nourished, to the friends who have stayed in contact and kept up traditions like the occasional Sunday afternoon drink and the people who have continued to treat us just the same as they always did. Your support in a real and tangible way has helped us choose incy wincy spider and playing and love.

So many of you tell us we are inspirational, and a lot of you know that doesn’t sit comfortably with me at all. It is your support that has enabled our strength and our positivity. It is your love and prayers and the practical ways so many of you have reached out that has fortified us and allowed us to be the best parents we can possibly be to Bede.

Of course in the photos tonight you also saw the smiles.

The unadulterated joy. The victories. The inherent strength. The moments that have doubled the size of our hearts. The moments we got to have him at home in his context with his family and his community. His first solid feed. His first get away down south.  The photos mark his growth and his resilient spirit. A spirit that fortifies us for the fight. You saw his light, his grin and his enduring ability to bring beauty and joy to all those around him. I hope you also saw a happy and grateful family. Bede is strength.

I want to take a moment to talk about Bede. Sometimes I get nervous that if I repeat the same thing too many times I dilute the message but my dear friend Carolyn, reminded me that people like to be reminded of just how incredible Bede is so here goes.

Bede is determined, he is strong, he is solid and he is true. In the words of his medical team he is persistant. They say kids bounce back well Bede doesn’t. For all the deep pits we have been in he has never bounced. Instead he takes a moment, he gathers himself, he consolidates his postion and then purposefully moves forward. Putting one foot in front of the other he gets on with the business of life. There are no spectacles, no grand moments he quietly and unassumingly dominates cancer. He is often called a fighter but it is not an angry fight it’s more like a peaceful protest. This illness that looms large may have the power to steal his life but it sure as hell will never steal his light. He faces brain cancer head on and he does it with a grace I could never have imagined.

His indelible truth remains, his light shines bright. I know I say that often but it feels like such an apt way to describe Bede. Sometimes he softly and defiantly glows, sometimes he all out shines but he always has this beautiful happy light about him. He radiates love and warmth and something great but indescribable. He is profound.

He is tough as nails and soft as a feather.

He is courageous and triumphant, gentle and soft and his little warm hands that he tip toes across my own feel like the worlds largest blessing.

Right now in this moment he is triumphant. He is doing better than anyone could have ever expected. He is eating solids, sitting up, babbling smiling. He plays, he takes turns, he is careful. He is an explorer. Where before Bede’s old soul was so prominent and overwhelming now his gentle persistent personality shines through and I really like the person I see.

In regards to that life expectancy we’re now told all bets are off. The truth remains that Bede could die suddenly and painlessly at any moment and while the cancer will most certainly eventually take him no one is prepared to give it a time frame. No one is prepared to underestimate Bede and his will. He is doing better than any other child that has presented with this cancer. For example while all the other babies presented at 4 months already completely blind we found out yesterday that Bede retains at least some sight.

I want to say thank you so much for your love and prayers. There have been so many times things could have gone so much worse than they did. Before the biopsy the doctors gave us weeks. So many prayed with us, sent love to Bede or just concentrated your positive energies on him. You gave him whatever you had and I earnestly believe the miracle Bede has had and the he still needs is all of you.

I’d so love for everyone here tonight to head over to the blog and at the bottom of the page in a grey box is the word follow. Click on it and subscribe and the next time we need a miracle we can call on you as part of team Bede. We so desperately want for him to be known and to be afforded his opportunity to make his mark on the world.

I really want to thank my beautiful friends who have helped organize tonight. I found the kindness difficult to accept initially but it has felt like one huge hug for our whole family. I also want to thank everyone who supported us and them by contributing to tonight and I know there are many of you.

I want to thank all of you for helping alleviate my fear that my incredible son would go unknown to the world.

I want to thank our whole school community for your support and love and prayers and I especially want to thank the year 2 mums for the meals, the fuel vouchers and for at times literally putting clothes on my back.

I want to thank everyone for coming tonight, for your support and love and for letting me tell you all the other side of the story. That might not sound as positive and as happy but is true and real.

I assure you the brutality of the journey doesn’t diminish they joy of parenting Bede. Everyday we feel a deep happiness and privilege to be the parents of two such amazing boys and a deep gratitude for all of you.

Please please please check out the blog.

Bede, maybe small but he is mighty. Thank you.

It’s clear! It’s clear!

Posted on September 9, 2013 by isabellanancy

A quick message to let you in on some wonderful news.

Preliminary reports say the brain fluid test has come back clear and Bede has kicked meningitis’ ass. The first look at the fluid under the Microscope shows no bacteria. They will still try and grow some but considering it didn’t grow in the beginning it would be highly unlikely for that to happen now. It looks like we’re in the clear.

To say we are elated is an understatement. G is so proud of his brother as are we. We are absolutely awash with relief. This was one of our biggest challenges yet and Bede has faced it down as usual. We love him so much and are so very very proud of him. We’re excited and happy and thankful. Thank you for your love and prayers and support.

We managed to escape for the weekend down to the farm and it was lovely. It was wonderful to see the boys hang out together like brothers. G insisted on sitting right next to Bede for the drive and Bede spent the weekend reaching out to G. It has been amazing watching him actively enjoy his brother’s company.

Bede was so relaxed and would spend hours flaked out in front of the fire but was also having a lot of awake and engaged time, a lot. He spent much time in the sunshine with the breeze on his face at local wineries and in the garden. He was blissed out in his first spa.

I think the greatest joy was just enjoying a family dynamic.

We are in awe of our little man and the infectious strength and happiness that wells from deep within him.

I would love to update you more comprehensively on how Bede’s little soul is weathering (robustly, happily, positively, calmly, collectedly) but I am exhausted and chemo starts tomorrow. For now I am going to crawl into bed with Bede and drink in every moment. Here are a few photos of the hundreds we took and just the first I have come across at this late hour.

I hope this post delivers Bede’s supporters a little of his joy and sunshine.

I remain humbled by your love and prayers and truly believe they are carrying Bede through these challenges.

Tonight my heart, naively, dares hope for a miracle.

flaked out by the fire

still flaked out by the fire

brothers at bunker bay

worlds best brothers

cider in the sun and teething all over again!

“hmmm not too sure about this”

Good night cuddles by the fire

Is xx

joie de vivre

Posted on September 6, 2013 by isabellanancy

There is joy here! There is growth and exploration and happiness and joy. There is normality and comfort and love and warmth. There is courage and blossoming confidence and just thankfulness and delight taken in being together and watching Bede grow. There is so much joy here.

Constant teething

Bede has been busy mastering lots of new skills.

He has been babbling more.

First he regained neck control, which was amazing. He lost it when the disease doubled and he got so sick. Now he is nearly sitting up all on his own.

If I let him hold onto my little finger just as a point of balance (he usually chews it) he will sit up for 5 minutes or so. If I sit him on my lap with absolutely no support he will sit upright for 20 seconds or so. I just can’t believe how far he has come. He seems to be only a couple of months behind some healthy babies which is incredible! We have graduated up to the next kind of chair and soon enough will be on to the bumbo which is a regular baby seat.

Bede’s first unassisted sit up but no one but me to take a photo

Bede can play! wooooohooooooo!

He has been teething and while eventually, the novelty wore off I think at least in the beginning he quite enjoyed it. Finally here is an itch he can scratch, a pain he can self soothe, something he has some input over. He has had his fingers in his mouth rubbing his gums constantly and yesterday, finally, it broke through.

He’s eating ‘solids’!!! Just rice cereal to start with but this week we introduce his first flavour. I haven’t completely decided what it will be yet but I’m thinking sweet potato. He’s doing so well at it. Opening his mouth, chewing, swallowing, and coordinating himself. Some people thought he may never eat solids so this really is awesome. I’ve been super unorgnaised with it to. I think if I’d been more onto it he’d be even further along so I’m going to get on top of it this week.

He is smiling again! For the first time since the meningitis took hold! He gave his daddy a massive smile for father’s day. The perfect gift.

long before his diagnosis and long after Bede’s nickname was smiley. We love seeing him happy but he won’t take his fingers out of his mouth!

He is so alert and engaged all the time. He’s taking everything in and participating and my thankfulness and joy run deep.

We went toy shopping for Bede the other day and got him a wonderful stash of toys that his brother is delighting in playing with with him. We bought 3 rain makers because they are his favourite; he goes still listening to them.

He tried out his newest therapy tool today which is especially designed for kids who may be vision impaired. It’s a box that has all bits and pieces dangling around him. It’s hard to explain but the idea basically is that it allows him to explore texture and feel and sound without having to move very far and he gets a lot of feed back for not too much effort. It also amplifies the sound of the rainmaker so he fell asleep. (He’s completely undressed because we kept trying to wake him up and he would only stay awake if he was cool.)

So despite the cancer, despite the meningitis he is growing. I love that. I love what an amazing soul he is. I love that he does things on his own terms and surprises us at the least expected moments.

His face is swollen again from the drugs but we are weaning off them again. 8 weeks ago Bede’s neck was stuck arched back and to the side there is no way he could have done this.

I can’t even put in to words all that Bede is at the moment. He is growing and evolving and reaching but not really changing. He is all that he has always been just more so.

I feel I have come to know him so much more over the last few weeks and goodness I am so incredibly fond of who he is growing in to and yet he is just the same.

All that he has always been remains but now I see how, with control and agency, that converts to his day-to-day approach to life. I suppose I’m seeing things that I always innately knew about him but now I get to really watch in action. His determined gentleness as he masters a new skill, his calm as he tries something scary, his tenderness as he strokes his hand over the top of mine exploring my being and my soul.

He is resilient. Despite the cancer he is developing and growing and that is really quite remarkable.

We are hoping our doctor gives us the all clear tomorrow and we can steal away down south to our dear friends’ property for a few nights tomorrow and maybe visit some other friends. There are chooks, vegetable patches, a trampoline, lots of trees, yabbies, clear stars and as much fresh air as you could possibly hope for. We are really excited to get the boys down there and sit by the fire.

We have had two weeks at home now while we postpone the chemo and treat the meningitis and despite some hospital stresses and mistakes it has been absolute bliss. It has felt close to normal. It has been enough time for him to develop a sleep routine which is such a normal thing but I have relished in it. I have loved the normality, we all have.

brothers checking out the chocolate factory during a wonderful day trip to the swan valley

Tuesday was another MRI we’re not expecting anything earth shattering either way. Sometimes that’s when you get sucker punched so that makes me slightly nervous for the results in an irrational way.

Tomorrow we tap Bede’s shunt again, which involves inserting a needle into the lump on his head and removing some brain fluid. There is a lot riding on it. If the three weeks of IV antibiotics haven’t worked and any meningitis remains Bede will need multiple brain surgeries, ICU time, lengthy admissions and a massive delay on chemo which may allow the tumour to grow. Roy and I will really be left questioning how we should move forward.

We are hoping, and praying and thinking positively and just really wanting that sample to come back clear of meningitis.

He is growing, he is loving, he is living. He is evolving and consolidating and smiling. He’s been knocked down but he is getting back up.

It has never been truer…

Through it all he is small but he is mighty.

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The Bede Update

He may be small but he is mighty

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