MRI day – Have you got a little love to spare?



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.

IMG_2183 bede at zoo

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.

15 thoughts on “MRI day – Have you got a little love to spare?

  1. Oh Issy, thank you for sharing. I’ve been wondering how things were. This makes my heart sing with joy. Bede, man you are a marvel. You are unrelenting joy. The smiles you shower on people make the world sparkle. I,ll be thinking of you, mummy, daddy and Gus today and always xxxx love you buddy.

  2. So much joy given so much yet to come. Wonderful Bede, you are indeed marvelous and mighty.
    ” 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” all these things I send your way and to your Mum and Dad and brother.

  3. The Bede is truly a mighty warrior, he and his family will be in my heart, thoughts and prayers today. I am constantly amazed by the fortitude of such a tiny fighter and his family.

  4. Issy, how handsome your little man is blossoming into. I am so happy to hear that you have had some wonderful times to just enjoy the fruits of life. I pray that you have good news with this MRI. Sending you love and positive thoughts today and every day xxx

  5. I hope today went well Issy

    It sounds like you’ve had some wonderful weeks. I hope today only reinforces that and they continue

  6. Sending prayers for your dear Bede. Im so sorry to hear that there has been a set back in his care. I will pray for him to be looked after safely and with love to provide him with the best possible care to help him heal. xxxx

  7. It really felt good to know Bede was finally having a longer stint of wellness than he had been use to. To know he was smiling, laughing, listening, feeling and enjoying life for a change was a soul renewing time for all of us who love him deeply. Then to know he was on the slide again was upsetting, but to learn the cause of his slide was through errors in his care is just so disappointing. I am so very glad and proud that Bede has a mum and dad who work as a team in overseeing his care as they do. They are amazing and I think this can intimidate some. But I say good for you Iz and Roy, I have much faith that, that darling boy can enjoy some normality in his life and that he should be cared for not only as a child with an Incurable cancer but with faith in mind that a miracle could happen and right now he is living and he is a very precious child as all children are. In all jobs no matter what profession or industries checking procedures are required. We love you Bede and I love when you whisper in his ear or close to his face and he reaches out to feel your face and let’s you know, he knows you care. So much love to you all. Xoxo Nan and Pop D

  8. May Bede’s extraordinary spirit be guided to a healthy happy state and defeat this menace. May his light fill every dark corner and radiate in its beauty and brilliance. Prayers and love to you all.

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