Bede’s tumour is growing.

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.

31 thoughts on “Bede’s tumour is growing.

  1. Our family will continue to say daily prayers in the hope that you will receive better news over the coming days. We don’t know you but we are in the fight with you. Vicki Oliver and Gabrielle xxx

  2. I am following your beautifully written account of your brave and inspiring baby.
    I know there are no words that can help you.
    Just know. Another stranger is wishing your boy well and thinking if his big brother and mummy and daddy too❤️

  3. Love, strength, prayers and positivity coming your way in the hope it helps ease the burden so you may continue to focus on what’s required to fight the good fight and love and support each other. xx

  4. He is beautiful and we pray that all your endeavors to find the best for Bida with doctors world wide bears a positive result. Be blessed.

  5. We are a long way from where you are but we can feel and see Bede’s light shining bright. You are always in our thoughts and prayers x

  6. my Bede Bop know that there is so much love surrounding you, surrounding your mumma, your da and your brother from so many people and certainly always from me. Surf the love it is always there for you.

  7. Sending all our love, strength, positivity and light to your beautiful family. If love could cure him this evil cancer would be long gone as no matter how big it grows, the love and light around him grows bigger and stronger.

    I wish all our love could ease his pain and we will continue to love him as if it could xx

  8. I lost my sister in law yesterday to a pretty aggressive brain tumour that was diagnosed less than 9 months ago, she was 55, now I am grieving for my loss for her children’s and grandchildren’s loss, my heart goes out to you and your family and I will pray for your beautiful little boy, your blog is so inspiring xx

  9. Thinking of you all. Sending lots and lots of love and positivity your way xx
    Courtney (Maddie Williams mum, 15months. If I see you in 3b I will say hi)
    Much love x

  10. Love and prayers from us, too. I’m another who has never met you but is moved beyond measure by your words and the photos that tell everything about the kind of little boy Bede is – and the love that is shared between you all. I have a “Gus”, too. Yours sounds truly special! xx

  11. I don’t know you, you don’t know me.
    But I’ve been reading for a while and hoping, hoping for better for you and your family.

    Much love to you, your family and of course especially to beautiful Bede.

  12. Issy, Roy, Gus and Bede, You are in my daily prayers and constant thoughts. I saw the way Bede moulded into your shoulder tonight at mass like it is his safe place. I saw family unity beyond measure. I saw a radiating glow of unconditional ‘we will get through this’ around you. I want to give and keep on giving you my love and support as though it will help take some of your collective pain away. I hope it helps. You are all mighty in this battle. M xxxx

  13. My heart bleeds for you Baby Bede, and your family who fight and stay strong,… you will beat this – you are God’s child xx

  14. Pingback: Our christmas star. | The Bede Update

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