He’s done it!

We’ve done it! He’s done it!

We got the formal results of the MRI and the tumour has shrunk a total of 50% over the course of treatment.

 Let me make that gloriously clear… The tumour has not regrown. 

This post has been a little delayed.  Thank you for your patience and unwavering support.

I would have loved to shout the news from the mountain tops the day we found out but instead we sat in our doctor’s office, in shock, sedating Bede, holding him while he screamed, perplexed and trying to figure out what was happening. Over the last 2 weeks we have been averaging about an hours broken sleep a night. Attempting to keep Bede comfortable has been an all consuming challenge and no one could get to the bottom of what was wrong.

We  finally found a nasty urine infection, a bacterial gut infection and gastro. … the perils of having a suppressed immune system.
Now he is improving. He is smiling more freely and laughing again. His chuckle fills the room.

I am now able to take a moment and bathe in his beautiful light, wrap myself in his warmth and rejoice in his triumph. The news, finally, gently settles and I delight. It hasn’t grown!

With love, positivity, hope, prayers, blind faith and determination… It hasn’t grown! He’s done it again. Multiple doctors looked at that CT. Neurologists, neuro surgeon, radiologists and oncologists. It looked bigger to everyone but it’s not. Bede has done it again.

I do not feel relief. I feel pride. A deep, soul nourishing pride. A pride that is only paralleled by my gratitude to each of you. I am sure I have said it before and it remains true-  the miracle Bede has needed and continues to need is each of you.

Make no mistake, your love, hope, positivity, prayers, vibes, thoughts have carried him through as though on the wings of angels.
I am humbled. I am humbled that you have not only taken a moment out of your day to send Bede some love but that you have held him in your thoughts and minds and collective consciousness. That you have wrapped him up in kindness and hope and protective love.

Make no mistake, the love you send Bede helps him in a very real and tangible way.

Our family has big decisions ahead of us. Ones that involve life and death, pain and joy, hurt and time. There is a balancing act ahead. I have faith that whatever is meant for Bede, he will continue to lead us and light the way.

Tonight Gus says that if everyone is confident in Bede, we might just get through. I told him the tumour has not grown and he said “well that’s a delight to hear.”  Yes beautiful boy it is!

Bede’s light is soothing. His essence is transitional and strong and gentle.
He is bruised but he is recovering. He is determined and he is joy.
He snuggles.
He will laugh as long as you are happy to laugh along side him and is finding humour and happiness in the most peculiar things.

Roy and I are feeling so blessed to have our family together under one roof again tonight.

He’s flipping done it!

I can’t think of a better note to leave you on than this video we took earlier today. This video lets bede speak for himself. Bede has decided that going to sleep is hysterically funny. He is such a happy boy.

Thank you.

Understated Magnificence

I am not sure if I have been doing Bede justice. If I have been able to find the right words. Though I suspect I could search for a lifetime and there would be no words glorious enough to befit him.

You know the blog is a funny beast in some ways. Early on I would pour my heart in to it, my child was laying next to me dying, the emotion was close for the recall. At times I have felt tethered. I have recruited so many of you to back Bede and I so desperately want to bring him to the world and hold him up as a shining example and say this is beauty and joy and light. Sometimes it is hard to write and I have found myself making myself write  to honour the support you have given him. Tonight I really want to write.

I want to say that right now he is rolling back and the forth on the floor grizzling but my goodness he is oozing heartbreaking, life altering, world shaking beauty.

Sometimes his eyes are subdued but they are pools of love and hope and wisdom and all the secrets of life that he has been so generously sharing with the people that will pause long enough to gaze into them.

Sometimes his voice gives life to his discontent but the shades of light and love dance within every inflection.

His fingers reach out and grasp me and his daddy, purposefully and with hurried conviction but he is gentle and thoughtful in his purpose.

When he wakes he smiles. His laugh is round and whole and sincere it shakes his core and then it tickles mine.

His head is close to bald but that lets the gentle afternoon light glide across it a little more easily.

He looks within himself as the sunsets and finds a non medicated peace. It’s not synthetic, it’s not prescribed, I have not raised him to have it, it can not be given. His peace wells bountifully from deep within him and if you’d like a piece of his peace he’ll freely, happily, lovingly give it to you.

His light fluctuates it is true but it is beautiful light and it always has depth. When he is defiantly glowing, persistently shining and all out dazzling it is captivating.

There is some how earth within him. He is grounded and has substance and light and weight and hope. They meld together within him and he overflows with the goodness of life. He is beautiful, he is truth.

He is understated magnificence. Who even knew that existed? Understated magnificence.
And yes there will be grief but that is for me and you and his daddy and his brother and all those who have known him or of him or who have been privileged to love him through real time or cyber waves. There is no grief for him.

He has lived. He brought it.
If we choose not to measure life in longevity but by life lived Bede has out done us all. He has found joy and adventure and experience and life in the big things and the tiny things. He has calmly, minimisingly, walked through horrors and let them go.
He has been ever present in every moment. I’m sure you could not say the same.

He has brought it.

So yes there will be grief but it is not his. Yes I posted a post where you could find grief but that is not ours. For Bede is here. What a gift.

A life altering, world shaking, course defining, light embodying, secret telling, profound soul is here. What a joy!

I think the reason I started to feel tethered to the blog and started posting less was because I doubted myself. I started seeing everyone calling Bede heartbreaking. If that is what you think then, and I say this with all my kindness, my heart breaks for you.

He is beautiful and though his life may be fleeting it is impressive, it is joyful, it is the greatest gift I never even knew I was worthy of until he raised me up and made me worthy.

Through all this bigness, big words, big heart, big impact – he is tiny, he is gentle, he is precious. Unwaveringly true.

None of this is cause to call our lives heart breaking. It is not cause for sad face emoticons to be given out like they are going out of fashion. It is not cause for pity. If I am honest, and I fear I may sound abrupt, if that is your take, I pity you.

I am sorry that his light isn’t falling on your face, I am sorry his profoundness isn’t having the opportunity to raise you up, I am sorry you haven’t experienced his healing tenderness. Lean in a little closer, smile a little more broadly, love a little more recklessly, rejoice a little more daringly and you will feel it to. His shine is generous and I know it is not just confined to his family.

Yes I posted earlier today. It was a call to arms of love and happiness and faith and blind hope.  Bede is here, dancing his way through life. He has a had a bad couple of days but he is dealing with it with smiles.
Tonight Bede’s love envelops me. His strength fortifies me. His light dazzles me. His tenderness heals me. His persistence encourages me.

I urge you to get behind the boy who will give you whatever you are open to taking from him. Get behind him with positivity.

Tonight the roses are in full bloom, the breeze is in and there is magic in the air. The world is more beautiful, more light, more wonderful because he is in it.
His is a life worth celebrating.


(I posted a shorter post earlier today. To check it out and find out why we need your positivity leading up to the 8th of Jan click here.)


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I am not sure what to say or do or how to act. I am sitting here, as what must surely be one of the most blessed and privileged women in the world because I get Bede. I come with humility and humbleness and hope that you will as you have so many times before, get behind Bede.

Bede’s birthday was not our best.  If it were any other day we would have taken him into the hospital.

We kept him home not for the photos or the party but just to spare him being needled and examined and scanned on his birthday.
We have been averaging a couple of hours sleep a night for the last 5 nights or so because Bede is irritated. He has been crying a bit, vomiting a lot and grizzling all the time. It was difficult to get food or fluids down his tube without making him distressed.
We were monitoring him at home but knowing within our selves that the tumour was growing.

We took him into the hospital and I knew.
We waited for the scan and it felt like that instinctive feeling you get when danger is coming and I knew.
We got called into the doctors office and now they knew.
Now it was real.
We told Gus and all he had to say was “Come on!”

The scan was just a CT scan which is not overly accurate to compare to the more detailed MRI but it looks like it is growing, it looks like we have regained the 20% we lost. Combined with Bede’s symptoms that is really not great.
The doctors resumed the drug that makes Bede’s face swell up and upped a lot of his other doses to try and make him more comfortable.

Bede is still regularly laughing at us, smiling with us, loving kisses, enjoying playing his piano and is his usual tender self. But there is also distress where before there was none.

His skin is silk, I never want to forget that feeling.
When he sleeps or when he is unsettled his fingers tip toe across the bed looking for me, he grasps me for a moment and then lets go. Happy to have his space but reassured that I am close.
His laugh remains rambunctious and resilient. His magic is soft and gentle and hopeful. His light uncompromising, continuing to lead the way.
He is weakened but he is not diminished.
He is whole.

Everything I wrote in the blog on new years day remains true. He is still evolving and developing and growing.

Every time I look for heart ache there is none. My beautiful, soulful, loving boy is here and I am thankful.

On the 8th of January we have his MRI. That will tell us definitively just how bad a position we are in.

My words can not do justice to Bede in this moment and any words I do have feel like they are all about me and how much I love him and this is about Bede.
Bede is strength and beauty and substance and light and leadership and hope. He is gentle, tender, unrelenting strength and love. He is goodness.

My words fail me, but my deep love for him implores me to write today. To ask you, the people with all the hope and love and prayers and positivity that have bestowed Bede with so many miracles, to please get behind him. Focus your happiness, hope, positivity, prayers, love, whatever you’ve got on Bede. We want as much happy time as we can get to afford him a life filled with as much, wonder, marvel, joy, relaxation, love and exploration as we can. We are not greedy, we know this wonderful life will come to an end, but for now we want more. More for us and Gus but even more importantly more for him.  I truly believe your loving and hopeful support has achieved that for him before.

I have said it before and I will say it as many times as I need to…. I promise you he is so very worth it.

As the tumour grows and effects his ability to have food or rest he manages to retain his peace.
As the chaos of cancer begins to grumble and swirl he is grounded and he smiles and laughs.
As the irritation flits in and out he loves tenderly.
We love him deeply, a love that is only paralleled by our pride.

This resilience, beauty, peace and happiness is his defining truth.
He is small but he is mighty. He is uncompromisingly Bede.

(follow up post here)

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Home for christmas!

Honestly, I am exhausted. A deep blissful exhaustion that slides along easily with my joy. Being home is heavenly. My exhaustion permeates my body and I am once again too tired to do the mighty Bede justice or even find the photos that do him justice but I also feel like so many of you want to know whats going on and I owe you, his supporters, that. So I hope this doesn’t sound like a boring recount. These words may not give life to the joyful spectacle that is bede at the moment, the unpredictable elation mixed with peace.  These words are the best I have got  for now so here goes…

I can’t explain how Bede recovered. One day he was a shell of his normal self with the gentlest of lights, the next he was laughing at us, the next he was nearly off all supportive measures and then, a while later, we were home.


Bede’s first proper roll. In to cuddle Dad

and all of a sudden, overnight, he’s back!

I suppose the expectation would be that posting on new years night I would take this opportunity to reflect on the happenings of this past year but I wont be.

The main reason being that I feel like that is something to do at an end point and our family is still in the midst of our mission.

What I didn’t put in  my last blog was that the doctors had said that it was time to stop Bede’s chemotherapy. We did not agree with the decision, I was upset and anxious. Roy was calm and determined to get second opinions. We both felt the decision was wrong. Our guts told us it was wrong, the logical part of us said it was wrong. We did not understand why we could not give Bede a break let the toxicity recede and try again.

We had his final scan to show us where his tumour was at the end of treatment.

He achieved another 20-25% shrinkage. That’s right another, this is the second consecutive scan he has achieved 20-25% shrinkage.. We have now more than doubled our goal for the whole year.

Trying to wrap our heads around this and thinking of how we would tell our parents and even of this very blog post I said
“Just so I understand, he is now doing better than any one could have predicted. Is that right?”
“Oh yes” was the reply.

The world shifted under our feet again and now the doctors were talking about clinical trials, surgery and more chemo and suddenly there were options where before they had assured us there were none.

Bede will not let us give up on him.

On the 8th of January we have a brain scan. If in this break the tumour has not grown we continue to treat. The risk is that there is no way to measure if the toxicity in his body that caused so many problems during the last cycle has receeded. I have a knot in my stomach waiting for the news.

The doctors tell us they have never given a child with this kind of tumour on this kind of treatment a break and then recommenced. The risk is we could kill him.

That weighs heavily on me.  As always with Bede there is balance. I need to balance bravery and fight and courage with measured reserve. Will we go ahead?
Roy says yes and I am scared.

If the tumour has grown during this break that means we are putting Bede through all of this only to buy a few weeks before growth. We would not continue to give him chemotherapy if that happens. To continue would be undeserving of a boy who has given so much and who deserves as much of the world as we can give him.

Now we are at home and  life is sweet. We have been here a while.

Bede is smiling a lot. in fact he will be lying on his own on the floor in the quiet and just start laughing a rambunctious belly laugh.
He spends a lot of his time laughing.




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He draws his legs up underneath him, pushes his little bottom in the air, lifts his head so high in what is a strong attempt at crawling. He then topples over onto his side and lies there seemingly contemplating his position. He is strengthening, developing and growing.

He plays. Santa came but his brother gave him his favourite toy. A little piano that Bede will happily sit there and play with for half an hour.

Santa came!

Santa came!

He swims! He has been in the pool a couple of times now and the last time he was so relaxed he rested his little hands on my chest and stretched his body and kicked those little legs.

first swim

laughing during his first swim

He rests. Peacefully and calmly. Undistrrbed by beeps and buzzers and temperatures and blood pressures. He lays in the sun or in the middle of our big  soft bed and he rests. It is divine.

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He cries. He cries with agency now not distress. He cries to communicate. I want my mum, I want my dad, I want a feeding session, I want to play.

He talks. He spends so much time trying to mimic the words I say or just having the longest conversations

He does all of these things and I delight.


I delight at two brothers exploring their santa toys together. I delight at our baby laughing his way through new years eve dinner. Chuckling at kisses. Trying to crawl. Exceeding expectation. Resilient and filled with hope and love and strength and light and when people ask me to reflect on 2013 it can not be summed up by facebook’s new “year in review” app. It is not easily summarised. It is delight and it is gratitude and it is hope.

2013 has gifted me with being more of myself than I have ever been, being the kind of person that I would hope I would one day have the opportunity to become, new friendships, deeper friendships, an unshakeable faith in my marriage, a continued gift in G and a brand new gift in Bede.

2013 has on the whole, been a blessing.

Sitting in the hospital room after the scan that revealed Bede’s tumour we were given weeks. We have just celebrated our first Christmas, bede’s firt new years and tomorrow, the 2nd of January, a day that we prayed we would make. Bede’s first birthday.

While these firsts are beyond sweet. My mind cant help but flit forward. Soon we will be making seconds and I think that had been beyond my imagination. Soon it will be the second time he’s been at his parent’s birthday and after that his second easter.

The love and positivity and prayers you have gifted us with in 2013 were beyond our wildest hopes. My greatest hope for 2014 is that you will continue to marvel at our boy with us, continue to wrap him up in hope and love and prayers. I am sure they have carried us this far.

I haven’t given much thought to my new years resolution but I suppose it is to remain resolute, unwavering, determined to defy the odds with a little boy who is more than capable of doing just that and laughing while he does it.

From our family to yours wishing you a Happy New Year!

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