Smile, Bede is.


This is not a typical Bede update rather a message.

The purpose of this blog was never to make everyone sad or heartbroken.
The joy of Bede is that he is so present in the now. He is enjoying his life and packing more love into it than most people do over decades.
After spending this morning walking by the beach with him and his dad I am filled with joy and love and brightness. I keep finding smiles welling up from deep within. That is Bede’s the beach

Bede is tired for the last few days, that is true, but we all have bad days. He is resilient and he is strong and even this morning he has been smiling, finding happiness in being held by his mum.
When  we first heard the news of Bede we said to all our loved ones that while we appreciate the kindness of your sympathy we don’t want it. Instead use that energy on sending him love and light and positivity and prayers and filling his time here with all those things.

Share in our utter delight.

This blog is here to say… take note! There is an incredibly warm, bright, happy, loving soul on this earth and he might not be here long. Enjoy it while you can. There is weight and light and beauty and substance and grace and joy and brightness and depth and strength and composure and determinedness in him. Take from that and this blog whatever you like, but I sure hope sadness is not the only thing you take. That will not be Bede’s legacy, I assure you of that.

This is where all the cool kids hang out, sharing the love.

WOW! What an incredible few days.
My greatest fear, that our stoic, warm, solid, peaceful, smiling Bede would all too easily fade into nothingness, is slowly, person by person, facebook share by facebook share, being alleviated.

The blog has taken off. Everyone from Joel Madden to Kevin Rudd, Liverpool player Brad Jones to Chrissie Swan and so many more have tweeted support for Bede and I’m not even on twitter. All our facebook friends, the people in our atmosphere, have been reading about Bede. I can’t adequately express my deep thankfulness. It is such a gift you all give me as a mother to know my son was here, you noticed, he matters and that despite his short life he is getting his opportunity to make his mark on this old world.

We had Bede baptized on Saturday and as I walked around the corner to the church I was overwhelmed by all the people standing out the front ready to offer Bede and our family, their love and support.  Such a joyous milestone, marked with a front lawn party, gifts, good friends, champagne, kids running around, just a total celebration of Bede and his joy.
baptism church baptism church candles

The days have also been marred with some difficulties. Bede is momentarily, worn and wearied. For the first time in his life he cries with discontentment. He’s had a rough couple of days, with the new tumours have come more pain and so we have been working hard at  getting his pain management plan right. I think we are getting on top of it now.

Bede in my arms blog

Today we decided to up his treatment to the hard core chemo. It’s a difficult decision. For a while most of our time will be spent at the hospital which will be difficult for Bede and for Gus. We were at the stage where the doctors would have allowed us to just make him comfortable if we had pushed for that. But for now he is full of life and vigor and a grounded determinedness. He’s still smiling.

At the beginning of all this we promised ourselves and our families and Bede that we would fight like no one has ever fought before. We also said that when the time came we were the right people to honour his truth, his life experience and fill his life with sweetness, comfort and light just as he has filled ours. We’re not there yet and the doctors agree. He surely is tired though.

In the hospital for a short visit on Sunday, I watched as his limbs just melted exhaustedly into Roy’s arms. He took a moment, searching within himself for the energy and started producing glorious smiles. His light shining relentlessly, determinedly, refusing to be obscured.

There is an exhausted joy. A lopsided happiness. Until now Bede has just simply continued on despite his illness. I really see for the first time this illness taking its toll on Bede’s soul. I also see, Bede digging in his heels and fighting. Refusing to be robbed of his gentle peace. Its not an angry fight or battle but a peaceful protest. He is shaken but he is undeterred. He is calm and beautiful and warm and his light glows and lights up all those around him. He is powerful and gentle. He is peaceful and strong.
In this, some of his most difficult moments yet he is showing his metal and I am in awe of his strength and his grace.

The sky is falling

I am to spent to write a whole blog post so instead I will post an SMS that I exhaustedly sent out last night..

This post will not do justice to the beauty and grace with which Bede deals with this cancer. I have said it before but it remains his indelible truth – his light is undimmed.  Hopefully I will have the emotional energy to write a post on how his gentle warm and loving soul is travelling soon. The purpose of this post is just to desperately recruit your positivity, prayers, whatever love you have to throw at us. We ache with love for our little boy.


Hi everyone, I’m sorry to say we had some bad news today.
The tumour has doubled in size in the last 4 weeks, it has haemorrhaged in on itself, there are new legions and the bits of spread he had before are bigger.
Without chemo we would have 2-3 weeks left. With only one round of chemo under his belt we haven’t given it much of a chance to work but its not looking good.
Because we don’t  know how responsive it is to the chemo (traditionally not very responsive at all) we don’t how how long we’ve got with bede. At this point it doesn’t look like we’ll be getting the miracle we all so badly wanted.
I just humbly ask you all to keep him in your thoughts and hearts and prayers. If there was ever a time to hope against hope or  just to pray for Bede generally it would be now with the 2nd round of chemo absorbing into his resilient little body. Please send our precious boy all your love.
The white mass  in the attached black and white photo is a picture of the tumour to give you an idea of what we are up against.
The little boy in the other attached photo is the most magnificent person we could have ever hoped to meet. Both photos were taken yesterday.

Joyeux et Merveilleux

Woohoo! I told you there was a joyous post a head! It’s marvellous.

sight smiles 4The last couple of babies with this illness were already totally blind when they were younger than Bede.  We knew Bede could definitely see up until about a week ago. Then he stopped tracking objects and his eyes would just wander not really fixing on anything. We thought he had lost his sight. We weren’t upset because he was still here with us, alive, but we definitely thought his vision was gone.

WELL, we had an ophthalmology appointment the day before yesterday and he still sees! He’s just a little long sighted which is developmentally normal. The change in eye behaviour is down to muscular issues resulting from the tumour.

For two people who weren’t upset we are flipping elated now!

The beautiful, graceful, mighty Bede just keeps on exceeding expectations and as always he does so with a smile. it was just the reminder we needed going into chemo. This is not a boy to be underestimated. If any body out there was going to beat the unbeatable it will be the quiet, determined, steadfast, purposeful, warm Bede. Filled with light and love and weight and life. Bede is quietly rising to meet each challenge. He shines.

You could not possibly find two prouder parents. We feel thankful and proud and are in awe of this little champion.

These photos were taken right after they told me he could still see me. It’s like he’s saying ‘I could’ve told you that mum’.

sight smiles 2sight smiles 3smile 1

I mentioned in the last post that the steroids are at times making him close on unrecognisable. You can see that when you compare these photos even just to the photo at the top of the page which was taken only a couple of weeks ago. But his smile remains, undeterred, shining through illness, through the medication and lighting up any darkness that has the audacity to come his way.

The fight is not won and I think it’s important to temper optimism with reality but at this happy win I think it’s safe to say Bede is putting up a fight and  our beautiful placid little boy is getting ready to step up and kick cancer’s ass. Its difficult not to be positive when you have a son as incredible as ours.

Keep on praying please wonderful people. I’m sure Bede is strengthened by the love he receives.

Ordinarily extraordinary

post surgery bede

It’s been an ordinary day here. As per usual Bede’s little body rises to meet the challenges it faces.He had surgery at 8:30 this morning. The doctors inserted the broviac line and did the lumbar puncture. To insert the line they cut into his jugular, insert the tube and then sew his jugular back up again. He came out of that surgery a little more roughly than he seemed to after his brain surgery. His oxygen levels weren’t as great as last time and he was much more unsettled. Maybe that was because last time he had so many more drugs on board but it made me wonder if this is all starting to wear him down in small ways.

post surgery

As I type this the chemo drugs are dripping into him. Roy says it all seems too easy for something that is so serious. For me I feel incredibly uneasy. It feels like we are pumping poison into him and I wish we didn’t have to. It feels unnatural as a mum to be sitting here having to be ok with this. My hand rests on his head and I concentrate on channeling as much love into his little body as I can. We sit quietly all three of us taking comfort in the others company.


Bede is to some extent unrecognizable now. The steroids he is on have swollen his face right up. Everyone keeps saying he must be so healthy and have gained so much weight but in reality he has had a small loss. I hope the swelling will go down soon but even that can not suppress his delight and his gentle joy. His smile shines through radiantly.

After a disheartening and exhausting week we go into this chemo feeling reenergized by Bede’s determined happiness and his strength. I have come to see Bede as a bit like a large ship, not making a fuss, lighting the way, calmly and firmly moving forward through the waves and the ice, unperturbed.

In summary we’re exhausted and wish we didn’t have to be here. The surgery went well and Bede as usual is doing amazingly.

I know I’ve said it before but we’re starting on the mild chemo and we’re only giving it 6 weeks to work its magic. Please pray, send positive thoughts, meditate on it whatever your thing is please please please send some of it Bede’s way.

I truly believe all the love and positivity he has received to date have made the world of difference to our beautiful Bede. I want so badly for his sake for the good chemo to work. For his experience of the world to be as painless as possible. For the bad not to be crowding out the good. I want sweetness, peace and light for this beautiful boy that embodies all those things.

This is just such and odd moment for our family. I have a joyous post to come but I knew so many of you would want this update so thought I would quickly throw it up.

Home sweet Home

bede blog trigg
We’re home.

Bede is seemingly over the infection and we have been swapped to oral antibiotics. Whatever remnants of the infection are left are not taking such a toll on him anymore. The hospital comes out to check on him each day and he seems to be pretty much back to himself.

We head back to the hospital on Friday for surgery. Bede will have his Broviac line installed. A Broviac line is a line that hangs outside his body and the doctors use it to administer the chemotherapy drugs to Bede and take blood from him when they need tests. It’s meant to cause less distress than constantly being needled. He will also have a lumbar puncture.

We start the chemo after the surgery.

The plan has slightly changed and we are rescanning to see if the chemo is working after 6 weeks instead of the usual 3 months. The cancer got away from them when they waited 3 months with the last baby they saw like Bede.
We need to be ready to bail quickly and get him on to the more intense, hard core, ass kicking chemo quickly.

We spoke to the brain tumor specialist while we were in hospital and finally got more of an idea of just how rare this disease is in a baby this small.
In his time at PMH he has seen one other baby and in all his time over seas he has seen one other baby with disease like this. So Bede is his third baby. Another doctor told us she thinks there has been something like 6 reported cases ever. It is rare.
The last 2 babies our doctor saw both died very young but even he says there is always hope. The outcome is really dependant on how the individual baby responds to the treatment. You never know until you give it a shot. We just really need to pray and focus on bede responding well.

For all these reasons I am sad to start chemo. Once the chemo starts I feel like there is no turning back and I’m scared. I’m scared that I wont be able to offer Bede enough comfort to help soothe him when the drugs make him feel terrible.

My confidence falters but my faith does not. My faith is firm that whatever is right for Bede is what will eventuate.

I’m also eager to get started. To sink my teeth into this. To give Bede his chance to shine. To prove the naysayers wrong. To dominate cancer. To put one foot in front of the other and carry Bede through this hell and come out no doubt battered but standing tall on the other side.

We’re not aiming for perfection, there is no cure for Bede. But I think in some beautifully imperfect way he may have a few more surprises in him yet.

Bede remains full to the brim of strength and fortitude. He is calm and gentle and strong. He is relaxed and his usual content self. He is happy.

Junk in his trunk!

Take that cancer! Take that Diancephalic Syndrome!
Bede broke 6kgs today.
This is the most he has ever weighed, by a LOT!

I remember when it felt like we lived and died by his weights. This doesn’t feel like as big a win as it once would have, because lets face it he still has cancer, but it is still massive.
He is getting some reserves in stock which is important before we start chemo.

It’s awesome news and an awesome mother’s day present.
Once again our little bundle of love and peace and solace is quietly and determinedly exceeding expectations.

Down in oncology

optimism wall
Bede was readmitted to hospital on Wednesday night. One of his surgery wounds has become infected which is dangerous because it leads to the shunt which leads to his brain. Although it is not at a serious level yet and they are getting on top of it with IV antibiotics.

So the good news is that as of this afternoon we are finally down in oncology which is much better for Bede and much more relaxed for us.

Along one of the corridors here the wall is lined with paper for people to write positive thoughts or good things that have happened during the day. The above picture is what our doctor wrote. I quite like it.

Chemotherapy was due to start on Friday next week but has been pushed back.
He is also due to have another surgery to install the line the chemo will be administered with and a lumbar puncture.

He has had a small bleed within his tumour but they are not too worried about it at the moment.

Bede retains his gentle peace and soulfulness despite how tired and worn he is this admission. We have had some smiles. He is definitely exhausted and I think working hard at fighting the (albeit mild) infection but his light is undimmed.

WOOOOOOOHOOOOOOO we are now at the heaviest Bede has ever weighed! He is basically obese! Well not quite but working hard at building some reserves to go into this fight with.