I have wanted to be blogging more. We have all just slid into this joy and peace of being at home. Watching our boys grow together as brothers in love and laughter and natural light.
We have had 4 weeks at home with Bede well which is our longest stint ever and I can’t wait to share with you all the photos of our adventures, the videos of his contagious laughter, his resilient playfulness and his growth. Because he has been growing and developing beautifully and our confidence has been blossoming.

Unfortunately a mistake was made in Bede’s care that left him to become quite ill over some weeks. From my perspective that illness resembled tumour growth and as I watched him grow sicker my confidence wilted, a seed of throbbing sadness planted itself in my heart.

Then the mistake was discovered and Bede has been reclaiming himself and it explained nearly all of his symptoms.

So now we have no idea what will happen today.

We are confused. We are hoping and praying and believing and touching wood that todays MRI is stable or even that the tumour is shrinking. We are trusting.

We are still on this rollercoaster and what a privilege it is to be riding it with him but today our stomachs are churning and we are disoriented.

If you have a prayer, a wish, some love, some hope, a giggle, a thought, a grin, a ray of sunshine, a miracle, an endless summer, a pocketful of stars, to send his way it would mean the world.

Bede continues to meet the challenges that cancer and the people around him throw at him and he does it with a smile on his face.

I want a do over of the last few weeks. I want him to keep knowing our love, to keep playing and laughing and listening to his brother tell stories.

I want him to continue growing and the tumour to continue retreating from his glorious love filled light.

We cradle him in our love, treasuring him.

He may be small but once again he has proven that he is formidable, he is mighty.
 

Somebody asked me how my dear friend Blake died. He died how he lived.
Loving and loved, fighting and fought for, beautifully and surrounded by love.

Blake’s mum was generous enough to call me just a few hours after it had happened to let me know. After hanging up I cried and wailed and the louder I cried the louder Bede laughed as though sending his friend on his way with the same brand of unrelenting joy Blake had gifted the world with.

Blake’s was a life well lived. He is a boy who transcends earthly labels like age or time. He made soul connections.He inspired the sun to shine.

One night I was privileged enough to have Blake call me in tears. Wanting to see me. I promised him if he needed anything he could call me and now he was reminding me of that promise and holding me to it. He said “Issy it’s not working without you” I asked him what wasn’t working and he said “tonight, tonight Issy it’s not working without you”

Well Blake I want to say now you’re gone that the world isn’t working without you but we both know that’s not true. Your magic and your life and your gifts are bigger than death. I want to say the world is less bright and beautiful but your magic is not fleeting you have permanently made the world a more beautiful place.
Your love and your life will resonate always.
But darling boy as I focus on your mate, Bede, my heart is having trouble working without you.

Francine, my grief runs deep. Your beautiful boy embedded himself on my being. He changed me. Like so many I came to love him so deeply. The thought of him placing his little hand on my own and saying “I love you Issy” will comfort me. I hope in time the fact he was loved so deeply and changed so many people will come to comfort you.

Francine, we are all here behind you, Roy and I, the 3B mums who have been on this journey with you – all of us. Trying to sure you up with our love but I know, as you have so many times before, you will find the strength you need within your own self. You are the strongest woman I know. You are an example to the rest of us. Going forward Christian is lucky to have you as his mum and so of course is Blake.

Thank you for allowing me to love your son especially during such an intensely personal time. It has been a gift an honour and a privilege.

Blake thank you for singing and dancing and beat boxing, taking a break and for making the world more fabulous. Thank you for dropping by to say ‘hi’ to ‘baby Bede’. You are so clever and so loving and at times brutally honest. Your beautiful gift of making each person feel as though they were special was nourishing.

Buddy you conquered cancer. You dominated. You lived and you loved and you died on your own terms never defined by those pesky ‘lumps’.
For the last few months when I saw Blake I would hold and rock him and tell him it would be ok and he would tell me he loved me.
Blake it’s finally all ok.

Blake Charles Stuart Dingsdale

    This post is made with Blake’s mum’s blessing.
A bede update will follow soon. I just realised how long it has been between posts and Bede is doing so well.
Blake has been such a large and happy part of Bede’s journey it was imperative we acknowledge his life and his passing.

Bede 2 days post surgery – he is irrepressible

What would I say if cancer were standing in front of me right now?

I’d say you hesitated. You underestimated
You hesitated and Bede in all his reckless abandon, in his relentless might, in all the glory of his wisdom empowered himself with light and love and the prayers of many.
I’d put cancer on notice.
It is no longer fighting a beautiful resilient baby. It is being dominated by a little boy who we can now see more than ever consciously makes the decision to fight. Consciously chooses to live. He is more than ever an active participant in his life and the direction he is taking. That direction is a life lived in hyper colour.

As always that fight does not come with the expected connotations of anger or resentment. It is fuelled by love and persistence and hope and light and gentle all encompassing strength.

On Friday I wrote the blog while the doctors were still in the room and the nurses were starting to prepare him for theatre.
I felt guilty as though in the two minutes it took me to do that I was robbing him of my presence but his daddy held him and I typed. It had been a difficult few days and we had just had a difficult conversation in front of him and I wanted to make sure he went into that surgery wrapped in love and hope and positivity and boy did you guys deliver. Thank you.

You know what really came out of this past weekend is Bede’s incredible ability to inspire love and kindness and positivity and wild hope. Team Bede was in full force and standing behind him and you could really tangibly feel the effect of that.

So many times he has stood on the edge, and while I have no illusions about just how bad a place the edge is, so many times it could have been so much worse. Like he has stood on that edge and then just at the last moment, swayed by your love and his strength, he has leaned back. Back into our warm embrace and a life lived beautifully and gracefully and gently and most of all with determined happiness.
That happened again on Friday. They got in there and as though by a miracle inspired by your goodness and positivity his bowel was not perforated. It was severely infected. He was on the edge but leaning back and we all rejoiced. Give Bede an inch and he’ll make a mile of it.

Late on Friday night I was too exhausted, completely shattered to post here but sent this out to my family. I wish I had had the energy to send it to all of you….

He’s made it through.

He has been robust and resisting sedation although now he is out for the count and I am about to steal some sleep.

His gentle persistence pervades. His glow comforts. His inherent love and light not to be underestimated.

We’re not allowed hold him and he is not breathing on his own yet but it looks like he may have just done it again. Your love and positivity and heartfelt prayers may have just done it again and I am humbled and overwhelmed and thankful for just how much love there has been.

From the bottom of our hearts thank you and if you have any more please keep it coming. He remains worth it and he is fighting hard. He’s made it through.

When I wrote that, he had one tube running outside his body draining his brain fluid, one tube running into his penis emptying his bladder, one tube running down his mouth into his lungs breathing for him, tubes going into his jugular, his central line and one coming out his femoral artery that was giving us a constant dynamic blood pressure. It was a meeting of machines and the human spirit and in that moment I had no idea just what lay in front of us.

12 hours later his breathing tube was removed and an hour after that another one of his tubes and then I was allowed to hold him for the first time in 24 hours. As I held him he really came alive and he looked at me and laughed as though declaring ‘I’m here mum, don’t worry it takes a bit more than that to keep me  down.’

Then over the next 3 days he had serious complications associated with his brain and the tube draining his brain fluid. t was an incredibly difficult few days advocating for him as we knew it was over draining for days before the team did. They corrected the problem and he has since been recovering.

Then yesterday the surgeon came in and told us if the infection had progressed even by a small amount it was a sign Bede’s body was shutting down and dying. We got the x-ray and there again he was on the edge but leaning back. It looked as though he had improved significantly.

Through all this higgledy piggeldy up and down recovery Bede’s strength has been unwavering.  His laugh fills the room. His light ever luminescent gently dances through the air. His persistent love and life are soothing. His presence comforting. It’s all gentle and quite subdued in here but when I put my lips to his cheek his strength, his robustness, and his fight, reverberate through every molecule of my being. He is tired but he is unwavering. His joy unmovable. When he laughs he does so with his whole body and it shines.
This last couple of months feel too big in good ways and bad ways but mainly in a course altering way not to summarise and let you all know what’s happened but that will again have to be for another day. I think for now this is enough.

Today the doctors think the spine might have progressed slightly but his main tumour could be  smaller. That MRI is this afternoon and we’re waiting with bated breath. Never complacent, willing him with every ounce of our being to pull another miracle out of his hat.

We’re hoping tomorrow we will get to re-internalise the tube that is draining his brain fluid but of course that means more surgery.

Thank you all; for all you have already done and for your continued care, from the bottom of hearts, thank you.

Now lean back baby boy, lean back in to our love and positivity and wild relentless hope.
You inspire love and I want your soul and light to dance across this earth for a while longer.

Cancer you are on notice.

My heart bleeds with love and hope and the gentle strength that bede embodies. We are about to head into surgery for Bede who now has a perforated bowel which is threatening his life after an acute deterioration over night. We have just found out in the last 15 minutes and I’m taking this moment to recruit whatever you’ve got to give. Please if you have love hope soul meditation vibes care please take a moment and send it his way.

He is worth it and he is fighting.
During his deterioration this morning he stopped and tried to smile to let us know he was still there. He’s a gently persistent smiley fighter.
His doctors are backing him.
We’re backing him.
His nurses are backing him
we would really like you to to.
Thank you.