Another MRI day

It’s MRI day here today for our beautiful snuggle bug.

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So we’re asking all of Team Bede…

do you have a little love to spare?

Hope, prayers, light, love all received with the deepest gratitude.

There’s too much to lose to start going backwards now.

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We have so much news to update you with I’ve just been trying to find time where my hands aren’t full!

No news has been glorious news.

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It’s been a while since I’ve blogged and so many of you are waiting to hear if Bede is ok. I have been a bit swamped with everything so Bede’s incredible Dad Roy has stepped up and is writing his first blog. It’s exciting to note that Bede had surgery in January that after many unexpected and life threatening complications allowed us to remove the tube from his face and feed him into a tube in his tummy. We’re loving seeing his face! Over to Roy….

 

The last time Izzy wrote she wrote about standing yet again on the edge of a cliff. Well Bede has triumphed he has grown he has developed he is smiling he is living.

The admission in Janurary and through part of February was a long and intense. The close medical management and care and love that was shown to Bede eventually got our family home.

Bede and G hangout at the hospital.

Bede and G hangout at the hospital.

Unfortunately each time we were sent home it lasted no longer than a week and bede was readmitted with more internal bleeding. It was a difficult and all consuming time where each treatment seemed to stir another issue. But Bede did Bede and got through it and levelled out.

Bede with nothing on his face for the first time in years.

Bede with nothing on his face for the first time in years.

Kisses with Dad

Kisses with Dad

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slowly he improved

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All of this and so much more are also the reasons why the blog has not been updated it has simply been full on.

Bede is now happy not for the passing moment or glimpse we have seen in the past but truly happy, laughing from your stomach happy and he is growing. We are doing rehab 3 times a week, we are singing, clapping, playing and he is even trying to crawl. We are reducing Bede’s medications and he is putting on weight.
Someone said to me last week :   “awww look at him are they steroid cheeks?” and for the first time I was able to say no Bede is chubby.
Bede is telling us when he is happy and when he is not. He is communicating. He is really living.

Morning swims

Morning swims

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We have even been out to dinner as a family with everyone happy... theres a first for everything!

We have even been out to dinner as a family with everyone happy… theres a first for everything!

More than all of that Bede is part of a happy, together family. We have been at home, at the beach, we have been on ferries to Rottnest island, we go for walks and drives up the coast, we play for hours on end and then we sleep not for 2 or 3hrs at a time but for 4 or 5hrs. Our family feels whole. Our family feels happy. Our family feels alive.

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We eat fresh food, take the boys to the farmer’s markets, we are enjoying life

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For the first time in along time I feel like Bede has the world at his feet. I feel it his time to grow, to develop to catch up on the things he missed out on and to do the things people said he would never do. This is Bede’s time to live and I couldn’t be happier to be there standing along side him encouraging him and loving him.

Life glows, we couldn't be any happier to be living this time as a family.

Life glows, we couldn’t be any happier to be living this time as a family.

This is also a good time to announce for those of you who might not know that Bede will be reaching another milestone shortly. Bede, along with Gus, will become a big brother to his little sister due in April/May this year.

Bede cuddling his sister while in hospital.

Bede cuddling into  his sister’s kicks back in January while in hospital.

 

Thanks for your patience, we feel deeply blessed. – Issy and Roy

Just know that you are loved.

As I sit here over your resilient body know that you are loved.

As my tears turn the fine embers of your hair to liquid gold, know that you are loved.

As my tears roll off your gentle skin and I wish they could wash this away from you, know that you are loved.

The tears are not defeat, they are resolve. Each drop filled with grand, fluid, soul altering love that wells from deep within me.
I feel your own soulful, gently determined, resolve in each laboured breath you take. I am pleading with you. Stay a little longer and know that you are loved.

As I cover your skin in gentle kisses I soak you in and I pour myself into you.

We can sit in the silent solitude of prayer, let that depth wrap you up and know that you are loved.

This is it. This is the precipice. This is the edge of the cliff. We’ve made our home here. Now lean back sweet boy and let my tears wash the fight away. Just lean a little bit closer and know that you are loved.

 

 

—–

 

 

Bede is out of the ICU and avoiding being returned.

Small but mighty. Small but mighty

Thank you Team Bede for all the love you are bringing him. 

Issy and Roy

Existing in the privilege of tonight.

My body wants to put you down so I can stretch out. But I know the rhythm of my breath is helping regulate yours.

I want to go home and sleep, hand you into the arms of your ever loving daddy, but I know tonight the rhythm of my heart is helping regulate yours.

I know if you were awake and lucid you’d be asking for your daddy by now but this is where the depth of our connection lies. In the unconscious, the instinctual need. Tonight you need me. Physically. Somehow the synapses and circuits and bio-chemical fireworks of our bodies anatomically dance to the same beat. Two puzzle pieces, locked in place. Two working parts of the same machine. The common goal is to exist in the privilege of tonight. To just hold one another and hold on lovingly tight.

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The gentle light that emits from your soul dances across the air coming back to rest on the tips of your golden hair and together we glow in tender love.

So tonight I ache.
I am exhausted and I want to go home. But tonight you need me and honey, I have always needed you.

My body is empty, my heart is full.
Together. As we were made to be. Existing in the privilege of tonight.

Our precious Bumble Bede was admitted into ICU earlier today. It was an extremely difficult night.
We love him deeply.

Let’s bring Bede home.

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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.

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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.

 

Apart from everything it’s ok.

There is so much I have wanted to say to each of you, all the valued members of Team Bede. Things like thank you, Merry Christmas & Happy New Year but I have been struggling to post. On paper things are getting better – there is hope for Bede, his pneumonia has resolved and we made it home.

In reality things are tougher than they have ever been. Bede has been screaming a lot. Roy has not been able to work for months now because it literally takes both of us to care for him and so in every aspect of our lives we are seriously struggling. Bede is in a lot of distress and no one knows why. He screams through excessive amounts of sedation. He is on a lot of medications and no one knows why he is needing it or why it’s not being effective.

Everyone is lost.

We have been drowning. We have been struggling to retain our positivity as Bede bashes large bruises into his own head and we get anywhere from 45 minutes – 5 hours broken sleep a night.

It feels fake to share all of our happy news without acknowledging Bede’s reality. So I think it is important to do that. As always though there is light and shade and balance to be found. The distress and trauma has been peppered with a few peaceful happy moments.

 

Bede screamed 20 hours a day leading up to Christmas and then managed to have a mostly beautiful day with his family.

One of our gifts to Bede was an inflatable swimming pool and 100s of coloured balls to fill it. He would have just been happy with one!

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christmas night cuddles

christmas night cuddles

Bede also turned two.

The small family party was a mix of Bede’s favourite things… Katy Perry, Lorde and mostly Jack Johnson played in the fresh air, bubbles floated on the breeze, we only served Bede’s favourite foods. Bede was surrounded by people who love him. Once again he seemed to ‘come good’ for a couple of hours. Laughing and smiling and settled.

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sucking on a syringe of watermelon smoothie

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There is joy and despair and light and shade here. I am sure there is balance to be found. I have always strived to make this blog such a positive testimony to the joy and hope and brilliant light that is Bede. But it has also always been true. This is his truth. Right now it is hard.

He has fallen into such a difficult space. His face bleeds when we change his tube tape, he needs to be held a lot, his unrest is almost all consuming. Bede is still there. His light uncompromised. Temporarily obscured but glowing. His cheeky smiles and all knowing eye rolls remain. His gentle, strong, peaceful love is permeating. The hope, the magic, the joy, the absolute resoluteness of Bede is all still there. His foundation is uncracked, never broken.  In our depleted state I feel less and less like I am able to do any of that justice with my words.

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Bede’s favourite activities at the moment are wrestling/eating Dad and getting tickles and playful kisses from Mum.

 

Since I started writing this blog Bede has been readmitted to hospital with internal bleeding. A complication caused by one of the medications that was meant to help him find some relief, the same medication that I mentioned at the end of my last blog that we were having trouble with. His skin has become so fragile over the last few weeks that he is literally just tearing open, he is covered in rash and bloated. Yet some how he has found his way to some happiness. His agitation has lessened, his laughter is tentatively blossoming, he seems to be gaining momentum as he fights this latest set back.

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He is receiving blood transfusions and everyone is keeping a good eye on him with surgery very much on the cards.

We presented to emergency department. Once we were rushed through I was talking to the senior doctor. I was listening to myself answer all her questions and hearing myself say that apart from the screaming, the tearing open, the head hitting, the needing to be held 20 hours a day and now the internal bleeding he’s fine. “apart from all that he’s fine”

I hear myself reassuring those that love him “apart from that he is good.”

I hear myself talking to bede’s teams “apart from that he’s actually doing ok”

But it’s not is it. There is no universe where any of this is fine or good or ok no matter how many caveats you apply.

As I see the bags form under Gus’s eyes, his sleeping patterns disturbed, him shakily and quietly asking about the things I can’t stop him seeing and him trying his hardest to hold it together while Bede is readmitted only a few short weeks after a 10 week admission I know it’s not ok for him either.

Slowly but surely my faith is eroded. My faith that whatever is best for Bede is what will eventuate, my faith that one way or another somehow it will be alright, my faith that as long as our decisions were made selflessly with love and Bede’s well being at heart they were the right ones, my faith that we are strong enough to do this, my faith that we could nurture Gus enough, that we could all hold on tight enough, that eventually there would be some relief, my faith in our ability to make this ok for Bede. My faith is diminishing. We are left tired and lost and diminished and so worried. We’re drowning in every aspect of our lives.

I hope as the parents of two amazing boys we can find some more of the strength they embody but we are struggling.

As we hold Bede through his distress and in hushed tones speak the unbearable words that this is no quality of life for our boy. We try and find faith, we try and hold on. Bede smiles.

This is not the kind of post we want to share, or have you read or even write but this is the truth. Bede’s truth, our family’s truth.

This is the closest to broken that we’ve ever been but apart from that it’s ok.

Our christmas star.

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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.

waiting to see the doctors

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.

 

NSW drive

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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.

 

uncle vin

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

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jess, kate and bede

ackland street

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!!!!!

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.

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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.

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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.

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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.

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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.

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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.

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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.

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

 

 

 

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

Tada! Bede’s back.

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

tada.... i'm back!

tada…. i’m back!

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

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

 

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

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

Our happy little bumble Bede

Our happy little bumble Bede

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

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

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

Slowly but surely we are making ground.

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

 

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

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

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this is too much happy for 3am!

 

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

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

 

 

This Kid!

 


Bede is small but he is mighty.

This is Bede after all.

 

 

PICU door

Our boy smiley

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.

Brothers

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”

 

Hold this space

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

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

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

For now here is Bede.

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

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

He is growing and developing.

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

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

We are both so grateful

I promise the updates will come soon.

 

Issy and Roy