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 effect.

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.

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

The 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’.

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.

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.

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.

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.

Finally….
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.