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.

 

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.

Sharing The Win

We have been here at the hospital for two weeks now.

ward

Today Bede had surgery. Last week Bede’s permanent line fell out so today it was replaced with an infuser port. He came through this surgery much better than his last.

coming out of surgery

He is continuing to slowly wake up from the drug induced fog. Perhaps a little slower than I anticipated in my last post but today is our best day yet. That is pretty incredible given he has just had surgery and all that he has been through over the last few weeks.

He is more awake and enjoying playing with his soft bunny.

As I write this Bede’s Dad is whispering to him how proud he is of him. The lights are dimmed. Soothing music is playing. The love that radiates from Bede fortifies us all. Through it all the soft and gentle beauty that is essentially Bede is unmoving. Who he is glimmers through the fog.

Hope for a better day swells within me and I am thankful for all your love. Be reassured that he is doing amazingly well.

How well he has come through this surgery definitely counts as a win.

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.