He’s done it!

We’ve done it! He’s done it!

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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.

36 thoughts on “He’s done it!

  1. I’ve been following Bede’s story for a while here – can I just say I feel like I am overflowing with happiness for Bede and the whole of your family. You are all absolutely amazing, and I admire the strength that it’s taken to help Bede no matter what.
    Absolutely amazing news!!

  2. Brilliant!!!!! That is what Bede is…
    This lil man with so much strength and determination continues to defy and bring happiness to those around him.
    You go lil man, everyone is there for you ready to help you soar.
    So happy to hear of his latest defeat
    Xxxx
    Will continue to send our love and strength to Bede and you all xx

  3. Go Bede! What amazing news. What an amazing little guy – quietly but determinedly showing cancer what he’s made of. Couldn’t be happier for you all. We don’t know each other, but please know that this news has made my day and brought a very happy tear to my eye. Thank you for the update.

  4. Everybody’s Gods are shaking hands saying job well done. Such wonderful news and thank you so much for the ‘laughter’. It was beautiful to see xx

  5. Tears of joy are cascading down my cheeks, the sun is brighter, the leaves are greener, the sky is bluer, the world a better place.

    Is, Roy, Gus,

    Thank you thank you thank you. Im a little overwhelmed at the moment. Isnt love a many splendid thing.

    Thank you Maryel.

    Rest assured my resolve remains and is strengthened by this glimpse of joy in your hearts.

    Thanks guys all my love

    UPhil

  6. Tears of happiness reading this. Bede, I believed it could happen, I really did. Your strength is beyond anything I have ever known. Although I have never met you, you influence and inspire my life greatly.
    I have been following Bede’s story for a few months now, and I think of him and his family so often, sending love and positive vibes your way always.

  7. I am so overjoyed to hear your wonderful news – what a magnificent boy – you (and beautiful Bede) have absolutely made my day! So often in your blog you have implored us not to sell Bede short, not to give up hope, that he may have been down but he definitely wasn’t out….! In my heart I believed you were right because dear little Bede shone with love, courage and gentle determination but I am ashamed to say that in my head there was very occasionally a small bit of scepticism, fear or nervousness that would creep in that just maybe the fight was too much. I can’t believe that I was inadvertently underestimating him and his brilliance. So I would hold him up in prayer and send every bit of love and positivity and strength that I could. I have never been so happy to be proven wrong in my life! Bede…you are awesome! You are small but you are SO mighty! Heaps of love to you all.

  8. Every time I start to write a comment I get drawn back to the video, Bede’s wonderful laughter and joy, irresistible! Perhaps I will try again tomorrow.

  9. So, so happy to hear this news. Thrilled for your family and Bede, what a champion. I too, think positive thinking, vibes, love and prayers are a much needed gift. Enjoy your beautiful boy, Is and Roy,
    and Gus, your baby brother. X

  10. That was the most gorgeous video to watch he is so adorable and what a laugh!! That really is great news for bede he is definitely laughing in the face of the cancer now isn’t he.
    Such great news so happy for you all.
    God is good and wonderful may bede keep shining through and through and we are always praying for you
    God bless you all
    Bede your a beautiful little boy xx

  11. “Simply the Best” came to mind after reading this update and watching that glorious video. I wanted to comment but I couldn’t. I just watched and listened again and again in much awe. I had just experienced something so incredibly special, the best sound in the world!
    Thank you for sharing!

  12. This is my first visit to your blog as I found it on Jessica Oldwyn’s blog “Toomah what stinkin Toomah”. I have been following Jessica since the beginning. Just wanted to say how happy I am to find out that your son’s tumor has not grown! Bede is a darling boy! I will be following your blog and will continue to pray for Bede and your family as I do always for Jessica!

  13. What a precious bundle of love and Joy is Bede. I can’t tell you how happy I am that Bede’s tumour has not regrown. He truly is a beautiful boy and is in my thoughts often – sending positive thoughts and hugs to Bede and his awesome parents. xxxx

  14. so overjoyed to hear positive news God is larger than Life,and Bede ,you re a Miracle in the Making,wishing you much healthtoday and Always,your family inspires everyone,Bless this family God,always thinking of you all,wishing you health and happiness to all,Bede is just Gorgeaos,God Bless all xxxxx

  15. I have been following Bedes story from the beginning. I don’t know you guys in person, but feel I have got to know you thorough this Blog. Everyday I check for updates on your little man, and everyday, I become more worried for you and your family. I hope the lack of correspondence is due to the amazing recovery of Bede, and all the time spent playing and nothing more sinister!!
    I think about you guys daily, and I know many other people are sending all their positive vibes to you.
    I hope to hear about the miracle we are all praying for.

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