Tag Archives: MRI

Bede’s tumour is growing.

Posted on by

As I write this it’s late. Roy’s been doing the heavy lifting with nights lately but tonight I am alone. Waiting to give the midnight meds and hoping he drifts off soon.
We have been buying time. Buying time to process our reality, buying time to let Gus sort out everything he has going on at school, buying time while we figure out what we want to do.

But there is no time to be bought and I am sick and tired of half sentences, half answers. Not lying but not disclosing. Holding our secret close when we all know a problem shared is a problem lightened.

Three weeks ago we posted about Bede’s MRI and received the results pretty quickly. Since then we have wrapped ourselves up in the love and comfort of our closest friends and family.
We have had twice weekly meetings with Bede’s primary doctor.

We have tried to keep on swimming while the difficult wave filled nights have threatened to drown us in exhaustion and in our own thoughts.

Bede’s tumour is growing.
The cancer is overcoming the chemotherapy and the tumour is breathing new life, focused on robbing Bede of his. For now, both astoundingly and predictably, it fails.

Bede is here living and laughing, lighting and loving and it looks a little something like this…

image

image

He lights the way and I am so happy to just bathe in that shine and follow his lead. His inner joy, his uncompromising happiness and resilient love glisten through the troubles like jewels.

 

We also have two trips to Sydney coming up to see different doctors. We have people in the US and the UK looking at Bede’s scans. Surgeons, oncologists, radiation oncologists. We are having renewed discussions with our team of doctors in Perth.

We hope to go forward with balanced judgment with an aim to prolong sweet life for Bede but never at his own expense. As our little miracle man keeps on keeping on.

Your prayers, your hope, your love are always humbly received.
I know I have said it before but the miracle Bede has had and continues to need is all of you. We hope you will continue to buoy him with your good will.
If love, hope, prayers, faith, positivity and joy don’t shrink this tumour it won’t be for lack of trying. Please continue to get behind Bede.

The tumour is growing.
Bede is small, Bede is mighty and we are so very thankful.

moving mountains

Posted on by

beautiful bede laughing

I know it’s been a while. We have been busy living the highs and the lows and basking in Bede’s persistent glow. He has been growing, nourished by our deep love and with an easy happiness that comes from being in your context.

Over the last couple of months we have had some beautiful times spent in the glowing sunshine, laughter wafting through the coastal air, sipping strawberry lemonade, feeding dolphins, dozing in the gentle southern sun and snuggling into the comfort of home. Wishes have been busy coming true. We have also had some extremely difficult times, especially over the last 3 weeks as I held his lifeless body to my own watching his heart rate drop and calling for help.

I have been putting off posting until I had the space to give the joy all the room it deserves and I do not have that in this moment. Bede is busy and so then are we as he makes his latest come back. I suppose I have also been putting off posting until I really knew what Bede wanted. From the lifeless boy we worried for to spending hours laughing last night he has shown us. He is fighting. He is undeterred. He is resolute. He wants life and all the wonder that holds and he is fighting for it.

Bede’s resolve is uncompromised, hope pours from him, his eyes glisten with promise and love and his inner joy that he has gifted the world with. His gentle tenderness is profound and unerring even as he scales the highest metaphorical mountains. He is no longer our infant son he has become our little boy. He is robust.

This post is me once again laying myself at your feet and humbly asking all those of you who have followed his journey to please get behind him today. He has another MRI. He has pulled some miracles out of his hat over the last few weeks. From nearly being sent home to die to the tumour possibly and miraculously getting even smaller without the chemo to his spinal cancer possibly taking off. There is a lot riding on today.  We are in limbo today waiting to find out if we are approaching end stage or if we are able to keep on making wishes come true. (Melbourne you are in our sights!)

We are tired and we still need to wrap him up in goodness. Today any love, positivity, hope, sunshine, good vibrations, joy, belief you could send Bede’s way are really needed. Our gratitude to each of you runs deep.

He’s done it!

Posted on by

We’ve done it! He’s done it!

IMG_8213
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.