Photo update.

sharing a joke

sharing a joke

This last 6 weeks have been a gorgeous time of happiness, abundant laughter, growth and development.
I was working on a post a while ago and wrote this…

I want so badly for this blog to represent Bede’s gentle, strong, light filled soul. I want it to represent his resilience, his tenderness, his strength and just how profound he is but sometimes like right now he’s just my boy and I’m just his Mum. Its as simple as that and that is more than enough for me and him and our little family existing in our blessed little world. We are happy. I am busy being a mum and he is busy being a joyful little boy.

Some of you may know things have changed for us in the last week but I wanted to  share all of this with you nonetheless. The updates have been few and far between because we have been busy relishing in life and the joy of Bede.

I have another blog to go up in an hour or so. I know many of you are waiting for news on Bede. He is small but he is mighty.

Is x

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Bandana day for canteen

Bandana day for canteen

teething on the couch. happy to be home

teething on the couch. happy to be home

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so much chemo

so much chemo

hey kiddo...  you're meant to be sick

hey kiddo… you’re meant to be sick

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ede shining gently, overcoming sepsis

ede shining gently, overcoming sepsis

walking in support of  kids with cancer

walking in support of kids with cancer

swelling is starting to go down

chilling with the amazing Abby

chilling with the amazing Abby

irrepressible

Bede's 10 month birthday party kicked on onto the night

Bede’s 10 month birthday party kicked on onto the night

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irrepressible

irrepressible

and they said he wouldn't eat!

and they said he wouldn’t eat!

image he loves it. image image loving sweet potato

first water fight

first water fight

chilling out at home

chilling out at home

so sick, so tired, 2am chemo blues

so sick, so tired, 2am chemo blues

image imageimage first meet up with santa. He was wearing thongs not too sure if it was legit? carols by candle light with Gus in the choir

Half way through and the triumph is his.

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.

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.  fresh air in his lungs

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.

IMG_5115

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.

IMG_5177

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.

This is 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.

smileybede12image image sight smiles 4

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.

IMG_4802bede 1 bede update 1

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

He is tough as nails and soft as a feather.

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

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

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

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

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

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

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

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

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

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

Please please please check out the blog.

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

It’s clear! It’s clear!

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

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

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

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

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

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

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

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

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

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

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

flaked out by the fire

flaked out by the fire

still flaked out by the fire

still flaked out by the fire

brothers at bunker bay

brothers at bunker bay

worlds best brothers

cider in the sun and teething all over again!

cider in the sun and teething all over again!

“hmmm not too sure about this”

Good night cuddles by the fire

Good night cuddles by the fire

 

Is  xx

joie de vivre

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

Constant teething

Constant teething

Bede has been busy mastering lots of new skills.

He has been babbling more.

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

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

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

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

Bede can play! wooooohooooooo!

Bede can play! wooooohooooooo!

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

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

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

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

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

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

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

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

bede blog 6th sensory room

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

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

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

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

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

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

Bede blog 6th sleeping

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

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

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

brothers checking out the chocolate factory.

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

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

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

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

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

It has never been truer…

Through it all he is small but he is mighty.

He is the wonder that is keeping the stars apart

I am overwhelmed by this update. Everytime I start writing I remember a new detail. Why haven’t I done this post before now? Why have I left it so long when so many of you have been so eager to hear of Bede?

Well because I try and pick a moment in time when I can give you all a clear idea of where were at and over the last two weeks the landscape has constantly been changing. Everytime I have found my feet the world has gone hurtling off in a new direction and so many times, as we are in this moment, we have been left waiting for time to pass, for something to declare itself, for the doctors to catch up, for confirmation. We haven’t been able to find our feet.

I have written pages of details tonight but that is numbing. It all boils down to this.

He fought the infection.

We got home.

The moment we were least expecting it, after a gorgeous night with friends, things turned.

No one could figure out why but I knew there was an infection.

He was struggling.

His oxygen levels kept dropping really low and he turned blue a couple of times over the coming week.

I thought there was an infection so I postponed chemo and him having a depleted immune system. The doctors were happy to forge ahead so we did.

Bede got worse.

There were CTs that said different things depending on who you asked.

His brain was swollen.

His brain wasn’t swollen.

The tumour had a fresh bleed.

There is no fresh bleed.

The tumour is swelling.

The tumour is not swelling.

These oxygen problems are from the cancer you need to brace for losing him.

This is not from the cancer but we cant figure out what it is.

You need to consider signing Do Not Resuscitate forms in the near future.

My strong recommendation is that you do not sign Do Not Resuscitate forms at this stage.

His brain ventricals are enlarged

His brain ventricals aren’t enlarged.

All the time in the background I know he has an infection and despite their best efforts they’re missing it.

They tap his shunt which involves inserting a needle in to the lump on top his head and drawing back and seeing if any brain fluid comes out. It came, that meant the shunt wasn’t blocked, that wasn’t the problem.

“We’ll just send some of the fluid off for testing just to make sure there’s no infection.”

“Issy, he has meningitis”

"Another infection?!?!"

“Another infection?!?!”

"You didn't listen to Mum and Dad again?!"

“You didn’t listen to Mum and Dad again?!”

"COME ON!"

“COME ON!”

Here I am quietly and calmly wondering what next.

I called Gus and told him Bede had another sickness in his brain. He asked if it was weak. It’s a hell of a lot weaker than Bede, my beautiful son.

Ultimately we don’t know where we stand. There are risks we are hoping to avoid. There are things we are hoping will happen. Right now we’re in limbo. Waiting for the world to shift again.

In two weeks when it has felt like the world has turned a thousand times and the land scape shifted with each one of those turns one thing has stayed unmoving, Bede.

He is solid and he is heart breakingly beautiful.

His soul is profound and wraps me up as his little fingers reach out and they find my lips or my ear and they explore, tip toing around my face, defining his limits.

He is soft and tender and divine and he glows. Softly and gently and unassumingly his glow lights the way.

Our secret is before every defined fork in the road like surgery or an MRI I whisper to him repetitively

“you are strong, you are loved, you are important.”

Willing him to know his worth. Willing him to know his foot print on my heart is deep.

Willing him to know I recognize his fundamental greatness and I promise the world has taken note.

I care for him so much and in so many ways. I care that he knows the world is beautiful and that hears beautiful words but sometimes I am at a loss for words that are filled with beauty. So I read to him a poem. A poem I rediscovered when I was pregnant and felt so deeply back then that this poem was intrinsic to our connection but didn’t understand why. Usually I have my own words but when I don’t I borrow Mr Cummings’ because if I know only one thing it is that Bede is truly a once in a life time wonder.

i carry your heart with me(i carry it in
my heart)i am never without it(anywhere
i go you go,my dear;and whatever is done
by only me is your doing,my darling)
i fear
no fate(for you are my fate,my sweet)i want
no world(for beautiful you are my world,my true)
and it’s you are whatever a moon has always meant
and whatever a sun will always sing is you
here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life;which grows
higher than soul can hope or mind can hide)
and this is the wonder that’s keeping the stars apart
i carry your heart(i carry it in my heart)

There is so much more to say but tonight I am overwhelmed by the telling. I will come and share all the happiness and all the triumphs of the last few weeks over the next few days because of course with Bede there is always so much joy. I will better update you on Bede’s little soul not just the happenings, tonight I knew many of you were waiting to know where we were in this moment. Where we are is that brain cancer is throwing Bede the worst its got and he is meeting the challenge with grace and beauty and gentleness and fortitude and light and love.

I am painfully thankful for my son. Now we are watching, once again, the mighty Bede demonstrate his grandeur and Roy and I are in awe of him.

Watching the front roll through.

We were readmitted yesterday.

Bede's first ambulance ride.

Bede’s first ambulance ride.

Bede’s little soul is agitated. Wearied but not yet worn. He has been working hard, He has spent the night and most of the day sleeping on my chest. I can feel his little chest rising and falling against my own. Breathing is hard work. Huff puff huff puff huff puff.

His plump, warm, soft hands resting on my throat feel like the greatest gift, His warmth blankets me. His determinedness fortifies me. His gentlenesss soothes me. His peace envelops me.

But that is all about me, this blog is not meant to be a testament to a mother’s love for her son. This blog bears witness to the most remarkable little human I have ever come across.

Bede is grounded. His light glows. Bede is tender and he is true. His strength is gentle but uncompromising.

I’m sure I have said it before but he reminds me of a ship. Forging forward, undeterred.

Waiting and watching the weather.

Waiting and watching.

In my last blog I likened chemo to sitting at the coast watching a front roll in. I grew up directly across the road from the open ocean. I would watch the clouds gather and know the storm and the gales are about to hit. The windows will rattle and the house will shake, you’ll lose power, the storm will batter you.

Now here we are in the thick of it. The storm has hit. Bede’s little body is being battered by a bacterial blood infection, he is septic. The doctor said today the kind of bacteria and infection he has is really as bad as it gets.  He is shaken but he is undeterred and so as his mum I’m really not scared. Bede has bunkered down and is enduring the front, like our old house he has a solid foundation, Team Bede. The collaboration of so much love, expertise, friendship, prayer, science, hope, faith, grit, with the most amazing leader and Bede really does lead the way.

We have caught the infection early. He is responding to the antibiotics.

I am in awe. I think one of the most remarkable attributes a person can have is the ability to just keep on keeping on. In the face of all adversity to put one foot in front of the other and battle on. My precious son completely embodies that ability and I am truly in awe of it.

Note: This entry was written last night. Bede is still a sick little baby but he is responding incredibly well to the antibiotics. Most of his blood counts are recovering very well and that includes his neutrophils which represent his immune system. Bede is not out of the woods yet but he’s finding his way.

 

Oh Happy Day!

My cup is full. I am brimming with joy and happiness and thankfulness. A smile irrepressibly spreads from one corner of my mouth to the next. Life is grand and beautiful and saturated with colour and light.

Bede turned 6 months old on the 2nd and we celebrated. We celebrated with balloons and colours and cake and love.6 month cake

 6 months with mum 6 month with daddy

Time is a funny, elastic thing. If you asked me if I have had long with G who is 7 years I would say not at all, he is still a baby. But this week when I think of Bede I feel like 6 months is a long time. It feels like a miracle. I have truly loved and fully lived each of those days and fully immersed myself in the experience of Bede’s life. Being Bede’s mum has been all encompassing. I have held him for hours every day and made sure he has felt loved and nurtured and safe. My love for him is embossed on every cell of my being.

6 month old Bede isn’t too much different to the one month old Bede. He is calm, resolute, substantial, joyful, curious and happy. He shines. He seeps beauty and grace and oh so much light. even when he can not phsyically mould his mouth into a smile you can see the light and happiness pouring from his eyes. The main difference is now we know just how much he is capable of. He is capable of more than simply enduring. He is capable of growing and evolving through the most daunting and trying circumstances.

Bede has really taught me a lot about unconditional happiness. I mean it when I say there are times when he can not physically smile but he is happy. His happiness is not pre determined by his conditions, it is not ruled by externalities. He cultivates it from deep within. Like a kaleidoscope his happiness is the reflection of so many things , his family, his toys, a world to explore even if it can not be as vast as yours or mine, his curiosity, his disposition. At times I find myself walking down a corridor on the children’s cancer ward smiling and I feel what Bede feels, unconditional happiness that is not dependant on my environment or material things or anything and I know Bede has taught me a lot.

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent's joy at having him outside

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent’s joy at having him outside.

Other than Bede’s 6 month celebration there has been a lot of other bits of happiness floating around. Last weekend we got home for about 8 hours. The ward also had a BBQ and Bede wore a party hat. We broke all the rules and snuck some ice cream into his mouth.
He has started mouthing at things a lot and we are so excited to start feeding him food soon. I have never taken food granted and can not wait to share with Bede the adventure of taste, such an essential party of experiencing this world of ours.

Roy is obviously so proud of his little baby boy as he watches Bede commandeer his rusk. He seems excited and hopeful and happy and just really really proud.

The truth of course is there is always a balance. This post sounds boldly happy and things are but at the same time there are still moments, quiet moments, even sad moments. There is always a choice to be had. There are moments where you think that 6 months old means we’re already a quarter of the way through Bede’s life expectancy. We choose to focus on the moments where we just feel blessed to have had him this long.

At the moment he is bold and curious and an explorer. Most of all he is adored and rightly so. Well actually in this moment by the time this blog finally goes to air he will probably be asleep and we MAY have even got home! Fingers crossed. Love to you all.
6month sleep insta

Triumph & Trauma

I have just realised that we have all been so wrapped up in the beautiful moments this last week all our photos are of us sleeping.

I have just realised that we have all been so wrapped up in the beautiful moments this last week all our photos are of us sleeping.

I try to keep this blog about who Bede is and how he is doing rather than just boring everyone with the details or even, sometimes the despair, of what is happening. Sometimes though, I think the details are important at least for the purpose of letting our families know and certainly as a testament to Bede’s strength and the pride we feel for him.

In the last 3 weeks Bede has had

  • Severe pain
  • Respiratory issues
  • Needed oxygen on and off for the whole 3 weeks
  • Heart rate issues
  • High blood pressure
  • Constant Morphine and Ketamine infusions
  • A blood infection
  • 4 kinds of IV antibiotics
  • His permanent line come out
  • The lining of his small bowel breaking down
  • Vomiting and Diarrhea
  • Tumour growth
  • 5 blood transfusions due to the chemo depleting his blood cells.
  • CTs
  • The skin around his bottom breaking down and bleeding
  • Cannulas and collapsed veins from blood tests
  • The hardcore chemo
  • Surgery to insert his new permanent line, this time an infuser port
  • MRI under general anaesthetic
  • And has been weaned off a lot of drugs

In fact the majority of these things unfurled in the first 2 weeks following the new chemo. Each day has been a new challenge and each day we have tried our best as a family to meet it. Day by day. I think rambling off that list is important because it really demonstrates just how remarkable our little Bede is. Through it all Bede remains calmly and firmly himself. I marvel that through all this trauma he has not only managed to continue smiling and shining but he has also managed to grow so much. We are incredibly proud of him.

We had an MRI on Friday which, incredibly, showed the new chemo has stabilised his cancer. Quite a feat really considering the tumour was growing so aggressively, it MAY have even shrunk it marginally.

This week we managed to stretch his IV lines all the way to the big bed and we slept together. Just like old times. Wrapping each other up in our sweet love.

This week we managed to stretch his IV lines all the way to the big bed and we slept together. Just like old times. Wrapping each other up in our sweet love.

We have had some positively wonderful times with bede. Uplifting times. Beautiful affirming days.
One day in particular was incredible, we had an infant massage session, a music therapy session and a guided play session. He was so incredibly enlivened and engaged. He has definitely re earned his nickname smiley.

Bede has grown within his own mind so much.
 He has a favourite page of a touch and feel book and reaches out to stroke the animal. He plays kissing games and smiles asking for more.

He freely gives away his joy by smiling indiscriminately. He smiles at everyone now, those jewels are no longer just for his Mumma and that makes me beam. His smiles are beautiful and luminescent, they of course shine so bright. His smiles make everyone else smile and the Bede effect is clear.

He has even managed to fulfill the secret hope I had for before the next chemo started. He is back to laughing.

I think what has brought Roy and I the most joy has been watching Bede discover, develop and explore his sense of playfulness. That purely childlike quality that is in its essence so far removed from his cancer and all that that entails brings a happy balance to his awe inspiring substance. His gentle determinedness remains resolute. In addition to that determinedness he now pauses and basks in the moment, seemingly bathing in his own light. Strengthened by happiness and curiosity.

We have now started the second round of the hard core chemo. We haven’t been home in four weeks. We are hoping to get home for a couple of days this cycle. I think it would so much good for Bede, it would reenergise Roy and I and would do the world of good for Gus.

I know its been far too long between posts by the state of all my inboxes. This has been such an incredibly intense and equally triumphant and traumatic time it has been difficult to update. Each time I tried I was overwhelmed by where to begin. I worry that I no longer have the emotional wherewithal to do justice to Bede with my words but I will continue to try so long as you all continue to pray for him and care for him and are sending him light and love and positivity.

Thank you.

choices

As you all know this blog started as an SMS just updating Bede’s physical condition. As it has grown I occasionally feel compelled to venture outside the scope. This post does just that.

Bede's first chemo, Bede laughs in the face of cancer.

Bede’s first chemo, Bede laughs in the face of cancer.

A while a go a comment was left on the blog that wasn’t approved.

It spoke of all the torture Roy and I were putting Bede through and the author said she hoped we would do the right thing soon.

Those of you that know us know it would take a bit more than some thoughtless words from a stranger to upset Roy and I or even to disturb our perspective. The comment did get me thinking.

We are at a stage of Bede’s treatment that at any time if Roy and I say it’s time to call it quits the doctors will support that. We have the ‘choice’.

It’s a funny concept that choice. I used to be lucky and naive enough to think people in situations like this had choices. That there would be value judgements, choices, to be made along the way. Most of all I thought there would be a choice to say ok Bede has had enough. That at some point it would be a matter of just gently letting him drift off. What a fairy tale that belief was.

In a treatment sense we have no real choices. It seems to me most of the families on this ward have no real choice. Most are fighting for their children’s life. We have the added responsibility of fighting for the quality of his death.

If 2 weeks ago we had chosen not to proceed with the treatment the tumour would have kept growing at the rate it was.

Bede was in excruciating pain. He would have had a horrifying death.

Because we went ahead it seems we may have thwarted some of the tumors growth and Bede’s pain is subsiding but he has needed blood transfusions, and has had infections and is just generally feeling pretty lousy after chemo but the treatment may buy him some good quality time at home playing with his brother and possibly a much less painful death. Prolonging his life prolongs his illness. There is no perfectly happy choice there.

We fight for him to have a better day but sometimes even those are rough, it is still the lesser of two troubles.

People may hold up this translucent illusion of choice in the hope of alleviating some sense of powerlessness but it is ineffective and unreal, that is not reality. Roy and I have no choices but a deep responsibility to honour Bede and all of his experiences whether that be life or death or the day to day struggles.

Tonight I met a beautiful young and wise Iranian woman. She said in a beautifully soft voice that there’s a saying that roughly translates to “God gives the hardest soldiers the hardest things” and she embraced me and kissed me. People tell you a lot of sayings when your child is diagnosed with cancer but that one really resonated with me. Perhaps it was the coarseness of the words mixed with the tender way she delivered them. We are strong enough to guide him through  and soft enough to embrace every moment with him.

We may not have real treatment choices, we may be powerless in the direction our lives take but we are dealing with a profound little boy. Filled with light and substance. That alone empowers us to make life choices. We choose to face each obstacle with love and joy and thankfulness. We choose to sing to him and smile and cherish him. We choose to make his life loving even when it can not be lovely. We choose the fullness of life for as long as we are gifted with it.

We would both be sorry to think that any of you out there thought we were putting Bede through the trauma of childhood cancer just to satiate our own selfish needs to have him here. There are no real choices except the choice to love him and shower him with as much joy as we can muster. I assure you we do this.

This is Bede’s life and it is actually not torturous. He knows no different, he grieves no loss and is present in every moment. He leaves the horrible moments behind in the blink of an eye and happily loses himself in his Mum’s smile. There is a lot to be learnt there. Perhaps it is Bede who has the real choices. The choice of how he lives his life and there is a lot that can be learnt from the decisions he makes.