The sky is falling

I am to spent to write a whole blog post so instead I will post an SMS that I exhaustedly sent out last night..

This post will not do justice to the beauty and grace with which Bede deals with this cancer. I have said it before but it remains his indelible truth – his light is undimmed.  Hopefully I will have the emotional energy to write a post on how his gentle warm and loving soul is travelling soon. The purpose of this post is just to desperately recruit your positivity, prayers, whatever love you have to throw at us. We ache with love for our little boy.

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Hi everyone, I’m sorry to say we had some bad news today.
The tumour has doubled in size in the last 4 weeks, it has haemorrhaged in on itself, there are new legions and the bits of spread he had before are bigger.
Without chemo we would have 2-3 weeks left. With only one round of chemo under his belt we haven’t given it much of a chance to work but its not looking good.
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Because we don’t  know how responsive it is to the chemo (traditionally not very responsive at all) we don’t how how long we’ve got with bede. At this point it doesn’t look like we’ll be getting the miracle we all so badly wanted.
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I just humbly ask you all to keep him in your thoughts and hearts and prayers. If there was ever a time to hope against hope or  just to pray for Bede generally it would be now with the 2nd round of chemo absorbing into his resilient little body. Please send our precious boy all your love.
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The white mass  in the attached black and white photo is a picture of the tumour to give you an idea of what we are up against.
The little boy in the other attached photo is the most magnificent person we could have ever hoped to meet. Both photos were taken yesterday.
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https://teambede.wordpress.com/thesubstantialbede/
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50 thoughts on “The sky is falling

  1. Much love to you Bede and your family, you are a shining light that has blessed your family. Our love, thoughts and strength to you. Xo

  2. Bede you beautiful shining little boy, we are sending you the utmost loving positve vibes and thoughts we can. Keep fighting. You are sooo gorgeous. Thinking of all of u.

  3. Isabella, Bede and family.
    You are never far from my thoughts and are in our constant prayers.
    Sending you so much love and strength!

  4. Bede you are a gorgeous little boy. We are all sending you our love and best wishes. Keep fighting little one, you have already bought so much joy to your family…and we know you have so much more to give! Stay strong and we are all praying for you, and sending plenty of positive thoughts to you, your parents and your brother. XXX

  5. You and your adorable baby are in my prayers. May angels surround him, may Heavenly Father bring you comfort, hope and love. Thank you for sharing what must be a sometimes painful journey. Bebe is such an adorable baby…what a smile♥

  6. Oh dear ones
    Heavy hearts….the loving energy & bond you share with your beautiful boy will continue to help him fight to stay with you…..keeping the prayers coming.
    My husband was at a ceremony at Perth Cathedral this morning & sent up special prayers for little Befe today.
    Our love n thoughts with you all.
    Oxo Maureen & Peter McK

  7. I wish you only good things and the strength to continue the fight. We were told our first child would die at birth and we had 13 straight years of constant hospital time and then 7 years of excellent health but he sadly passed away in his sleep at 21 years old. I would not have traded a second of that time and he was the most precious child. PMH is the best place for Bede to be.

  8. My eyes filled with tears and my heart goes out to what you going through little angel. Going through such a thing is not fair at any age let alone at your age, it is not fair at all. My thoughts and prayers are with you and our family beautiful Bede, Being a mum I can’t even imagine what your mum and dads are going through, may God give you and your family the strength to fight. God bless you.

  9. You don’t know me, but I saw your little mans story through a friends FB update. I just wanted to let you know that your little boy is in our thoughts. I am sending all of the positive energy I can. The beautiful thing about babies is that everything is about the here and now, not the past or the future. Whatever the ‘hear and now’ is throwing at your extraordinary and courageous boy, he will be gaining so much comfort just knowing that you are there to smother him in kisses and hugs, and hold his hand throughout. Fight little guy! I have faith in you. Positive thoughts for all xo

  10. you do not know us, but we wanted to let you know that your precious baby boy Bede. Our thoughts and prayers are with your family as you fight for his life……..do you have a Facebook page for Bede?, Please know Bede is touching hearts and families across the world. xxxx Nicki and family

  11. Reblogged this on it’s organised chaos and commented:
    Today I was sent a link to a website about a baby who has Brain Cancer…..I nearly deleted the link, I mean the world is full of so much pain right now its hard to read it all…. BUT gosh I am so glad I didn’t, Please go and read his story, and his Mumma’s beautiful words and leave the is dear family some love and encouragement…..as the fight to save their precious babies life……
    and remember Life is short, life is precious…….do not waist a minute of it, Nicki xxx

  12. beautiful Bede you are in my heart and all the loving positive prayers are being sent to. thinking of all of u xo

  13. Sweet little Bede, keep fighting little man. Every morning when I wake up, I send positivity and white light to you and your beautiful family. I am imagining your beautiful little face as a three year old, as a ten year old and as a handsome man. The power of positive thinking makes miracles happen and I pray that we are about to watch a miracle unfold in front of our eyes. Fight little man, fight with everything you have xoxoxo Love to you Isabella, Roy and Gus

  14. The sky looks like it is falling, but today Bede just keeps bop bop bopping along, all the love from so many may well just keep you bopping along Bede. Right now right here we love you Bede bop.

  15. Every minute of the day and every minute of the night, we are with you. You are never alone! We want that miracle to unfold in front of our eyes also. So much love, so much prayer and so much positivity from so many, gives us the power to achieve. Thanks to all these special people. Darling Bede, Isabella, Roy and Gus, wrap yourselves in this love. “Lord Hear our Prayers”.

  16. Such preciousness sweetness in the smile of your little man Bede. Every second, every minute, every hour of every day family and friends and people you don’t know are going to be surrounding you and Bede, sending you lots of hugs and positive, healing love for this journey you are now on. Absorb it all and know that you are being thought of all the while. Sending my own love right now . x0x0x0x

  17. My thoughts, love and all the energy I can possibly send are with you and young Bede. I will be sending all postive thoughts and hope for you and you family.

    • Dearest Bede, Isabella, Gus and Roy every day we think of you many times and we pray for a miracle to come your way. What spirit and determination you have for such a little boy, we know that you get that from your mummy and daddy who are so strong!

      Holly will learn about you as she grows older and we pray that one day she will get to meet you and give you lots of kisses and cuddles in the real world and not just online.

      You are an amazing little boy with an amazing family and an amazing group of people and babies hoping and praying you kick this cancer in the butt 🙂

      Keep strong little Bede, Team Bede are with you all the way xxxx

  18. Sending you and beautiful Bede big love, a tsunami of love, care and concern, all the love in the world in fact.

  19. I was directed to your sight by a lady on a sewing page on facebook. I just wanted you to know that I too will pray for you and your boy and i will uphold you all for prayer in my church at yeppoon. Remain strong xox

  20. My heart aches for you Bede, no words can express how I feel after reading your courageous & beautiful story. All my Luv and prayers to you and your family. Keep fighting and stay strong……xoxoxo

  21. In our hearts, in our thoughts and in our prayers constantly. Keep fighting guys, the strength and courage that the beautiful Bede leads with, together with you both, is truly amazing and inspirational. Sending much love, hope and positive thoughts to you all.

  22. Im in tears from reading this. He looks like such a happy little man. It’s not fair. Thoughts, prayers and love to you all. I wish i could make it better. Big cuddles for you litter Bede. If love alone could save you, you’d be better in mere seconds. You’re a beautiful little boy xo

  23. We are praying for a miracle. The God of the Universe, Creator of everything, please hear the prayers of all of us and heal this tiny little person. He is an inspiration, as are his parents. Give them the strength to bring him through this. With all our heartfelt love, Little Bede be well! xo

  24. Sending as much love and positive thoughts to Bede and the family. My heart is breaking for you all xoxoxo keep fighting honey xoxo

  25. You humbly asked us to keep thinking of Bede and we loudly call out that we always do. Bede, you touched us all, and we know you will prevail.

  26. Sending lots of love and prays and positive thoughts for Strong little Bede he is a fighter that is for sure. Thinking of you Issy, Roy and Gus xx

  27. Beautiful Bede praying for a miracle your smile is the most beautiful thing I have ever seen what amazing parents you have 💙💚💜

  28. You don’t know us but I saw your beautiful Bebe on a Facebook update. Sending Bebe and your family lots of love and hope. I will be thinking of precious Bebe often. I cannot imagine your pain xx.

  29. I almost couldn’t bring myself to read your post tonight (shared with me by a good friend). But you don’t need your community to turn away. You need your community to share your exhaustion, your grief and your pain. In return we share with you our love, our courage and our strength. It’s your love and Bebe’s love and light.

  30. Thinking of you and your sweet darling baby. What a beauty he is.

    Love from this stranger who has been touched by your courage,

    All the best most special Bede!

  31. Bede, I really hope god steps in and let’s you keep on smiling, as that smile is amazing.
    You radiate so much love with such a beautiful smile..your parents must be proud….
    Your parents sure are special people and are very strong to stay so solid by your side…
    Please know that your current medical issues has really touched so many people, and I truly hope you heal well & live a wonderful healthy life….
    My thoughts and prayers are with you & your loving family.
    Xxxxx
    Can I send you a toy?

  32. What an absolutely beautiful boy – a true hero. That picture of his gorgeous, cheeky grin has both melted and broken my heart. Still praying for a miracle for dear little Bede and his amazingly strong family xxxxx

  33. Thinking of you all. Lots of love to you all. So lucky to have such a beautiful little boy Bede. Always in my thoughts. Kx

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