Let’s bring Bede home.

Posted on January 21, 2015 by isabellanancy

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

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

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

The bleeding stopped.

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

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

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

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

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

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

Bede may be small but he is mighty.

Let’s bring Bede home.

Our christmas star.

Posted on December 14, 2014 by isabellanancy

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

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

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

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

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

patiently waiting to see the doctors.

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

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

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

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

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

He defintitely did not say all the same things!

HOLD ONTO YOUR HATS PEOPLE!!!!!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He is cheeky and his sense of humour is bold.

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

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

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

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

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

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”

Dear Gus, thank you for your nurturing cooling shade.

Posted on August 5, 2014 by isabellanancy

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

Dear Gus,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

How much love can a bear bare.

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

If I could offer future you any comfort it would be that you make him happiest. He is at home with you. He has truly lived because he got to have you.

This post is to future you but if I had to think about present you I’d say:

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

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

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

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

Thank you darling.

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.

Understated Magnificence

Posted on January 6, 2014 by isabellanancy

I am not sure if I have been doing Bede justice. If I have been able to find the right words. Though I suspect I could search for a lifetime and there would be no words glorious enough to befit him.

You know the blog is a funny beast in some ways. Early on I would pour my heart in to it, my child was laying next to me dying, the emotion was close for the recall. At times I have felt tethered. I have recruited so many of you to back Bede and I so desperately want to bring him to the world and hold him up as a shining example and say this is beauty and joy and light. Sometimes it is hard to write and I have found myself making myself write to honour the support you have given him. Tonight I really want to write.

I want to say that right now he is rolling back and the forth on the floor grizzling but my goodness he is oozing heartbreaking, life altering, world shaking beauty.

Sometimes his eyes are subdued but they are pools of love and hope and wisdom and all the secrets of life that he has been so generously sharing with the people that will pause long enough to gaze into them.

Sometimes his voice gives life to his discontent but the shades of light and love dance within every inflection.

His fingers reach out and grasp me and his daddy, purposefully and with hurried conviction but he is gentle and thoughtful in his purpose.

When he wakes he smiles. His laugh is round and whole and sincere it shakes his core and then it tickles mine.

His head is close to bald but that lets the gentle afternoon light glide across it a little more easily.

He looks within himself as the sunsets and finds a non medicated peace. It’s not synthetic, it’s not prescribed, I have not raised him to have it, it can not be given. His peace wells bountifully from deep within him and if you’d like a piece of his peace he’ll freely, happily, lovingly give it to you.

His light fluctuates it is true but it is beautiful light and it always has depth. When he is defiantly glowing, persistently shining and all out dazzling it is captivating.

There is some how earth within him. He is grounded and has substance and light and weight and hope. They meld together within him and he overflows with the goodness of life. He is beautiful, he is truth.

He is understated magnificence. Who even knew that existed? Understated magnificence.
And yes there will be grief but that is for me and you and his daddy and his brother and all those who have known him or of him or who have been privileged to love him through real time or cyber waves. There is no grief for him.

He has lived. He brought it.
If we choose not to measure life in longevity but by life lived Bede has out done us all. He has found joy and adventure and experience and life in the big things and the tiny things. He has calmly, minimisingly, walked through horrors and let them go.
He has been ever present in every moment. I’m sure you could not say the same.

He has brought it.

So yes there will be grief but it is not his. Yes I posted a post where you could find grief but that is not ours. For Bede is here. What a gift.

A life altering, world shaking, course defining, light embodying, secret telling, profound soul is here. What a joy!

I think the reason I started to feel tethered to the blog and started posting less was because I doubted myself. I started seeing everyone calling Bede heartbreaking. If that is what you think then, and I say this with all my kindness, my heart breaks for you.

He is beautiful and though his life may be fleeting it is impressive, it is joyful, it is the greatest gift I never even knew I was worthy of until he raised me up and made me worthy.

Through all this bigness, big words, big heart, big impact – he is tiny, he is gentle, he is precious. Unwaveringly true.

None of this is cause to call our lives heart breaking. It is not cause for sad face emoticons to be given out like they are going out of fashion. It is not cause for pity. If I am honest, and I fear I may sound abrupt, if that is your take, I pity you.

I am sorry that his light isn’t falling on your face, I am sorry his profoundness isn’t having the opportunity to raise you up, I am sorry you haven’t experienced his healing tenderness. Lean in a little closer, smile a little more broadly, love a little more recklessly, rejoice a little more daringly and you will feel it to. His shine is generous and I know it is not just confined to his family.

Yes I posted earlier today. It was a call to arms of love and happiness and faith and blind hope. Bede is here, dancing his way through life. He has a had a bad couple of days but he is dealing with it with smiles.
Tonight Bede’s love envelops me. His strength fortifies me. His light dazzles me. His tenderness heals me. His persistence encourages me.

I urge you to get behind the boy who will give you whatever you are open to taking from him. Get behind him with positivity.

Tonight the roses are in full bloom, the breeze is in and there is magic in the air. The world is more beautiful, more light, more wonderful because he is in it.
His is a life worth celebrating.

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(I posted a shorter post earlier today. To check it out and find out why we need your positivity leading up to the 8th of Jan click here.)

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.

—

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.

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	Michelle on Because you were his.

The Bede Update

He may be small but he is mighty

Tag Archives: isabella

Let’s bring Bede home.

Our christmas star.

This is Bede after all.

Dear Gus, thank you for your nurturing cooling shade.

He’s done it!

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

Understated Magnificence

Growing.

Bright blessed days and dark sacred nights.

Half way through and the triumph is his.

A quick catch up.