As magnificent as ever.


I had planned to put an update up yesterday explaining to you all about the new chemo and how it works. Nothing ever goes quite to plan.

I said in my last post that Bede was becoming tired. Since then his pain has gradually been increasing and we’ve been increasing the measures to deal with that pain. It has been difficult trying to manage that pain at home. Once we got to the hospital and started the new chemo it continued to intensify. We eventually saw the anaesthetist who put him on continuous morphine yesterday evening.

Our first trip to the hospital with concerns for his pain was the day after his baptism. They did a CT then. We did another CT last night. In the 5 days between the two scans the tumour has gown a centimetre in a couple of different directions. That might not sound like much but that’s massive growth in only 5 days. It is causing him all this pain.

When we were discussing this new chemo with the doctors they spoke about another little girl they had treated previously. she had a similar affliction and although she spent a lions share of a year at the hospital she then got 12 months at home, chemo free, enjoying her life and her family before she died. The concern I expressed to the doctors then was that I sensed Bede’s death was much closer than anyone realised.
The way this tumour has grown has reinforced that feeling within me.

I am devastated not because I feel Bede’s death may be close, although of course that saddens us all, but because we have had this 24 hrs of pain.

His little soul is worn. He is scattered. I think it was in the very first text I sent out letting you, our most loved people, know the diagnosis that I said one way or another we would carry him through this. So this is what that feels like.

I used to secretly dislike it when people said he was a fighter. Although I liked that people were backing him, no precious soul this young should have to know the harshness of fight. His only job should be to enjoy the world. But tonight I see him fight. Knuckle down, one foot in front of the other, fight. It’s not a fair fight but as usual he takes it on with courage and a purposeful grace.

Life hurts. If I move he cries.

He is fighting. It is hard work but under that remains Bede. His beautiful soul still here. Steadfast in its warmth and beauty. Uncompromising in the face of pain and discomfort his essence wraps us up.

On his chest is his monkey from his Uncle Vin and Aunty Maree. It plays let it be. He is snuggled into my breast and the pain in his neck is relieved and supported by the crook of my arm. He is uncompromisingly Bede. He is beautiful. He is grounded. He has weight and soul and light. He is not freely smiling but he glows. His gentle, peaceful strength remains, resolute. His light lifts us up. He is my son. My kiddo. My love.

I am praying this chemo works. Not because I’m greedy and am grabbing for time that isn’t mine. I’ve already been blessed beyond belief just to meet Bede let alone the privilege of mothering him. I am praying the chemo works because I would like a different death for him. I would like to afford him some of the peace and light he has so generously given to the world.

I have thought a lot about this post over the last couple of hours. With so many people reading now I don’t want his light replaced with sadness in anyone’s minds. I have to have faith that even times of darkness his light shines so bright, too brightly to be replaced and more importantly I have to honour Bede’s truth and his life experience and this is it. He is not in a good place. He whimpers.

Although this moment in time is difficult his light shines on adamantly.

As his mum I come to you as always with fierce determinedness, but also a new desperation, to give him the best life and death I can. I owe him so much.
I truly believe that all the love and prayers and positivity he has received from you have wrapped him up and carried him, unbruised, through this whole experience. I humbly ask you now please send him some more. he needs it. Hoping for his best outcome.

So as a dear friend and my soul sister so eloquently put it
Whether you believe in faith, science or humanity please send some love, prayers and positivity Bede’s way. I promise you he is magnificent and beyond worth it.

25 thoughts on “As magnificent as ever.

  1. Our love is sending to fight for Bede, his Mumma, his Dad and his brother, so much love from so many, keep going everyone send that love Bede’s way. Lots of smiles this morning for the amazing Bede who gives so much.

    • PS I would so love to rant and rave and swear and curse but how can I in the face of such courage and love, so I will just count my blessings, a look at Bede’s smile, I see one of my major blessings..

  2. Sending so much strength and positivity to you all. You’re so right – these precious little ones should never have to know what it’s like to have to fight. Equally a parent shouldn’t have to face what you are. I can’t even begin to imagine….but my thoughts are with you.

  3. Sending my love and prayers to Bede and his beautiful family. He is a magnificent little boy who is blessed to have such an amazing Mummy (and Daddy and Brother). xx

  4. Dear .amazing family .me and my family are sending our prayers filled with love joyous to the special and courageous little Bede .. we all love you Bede.may god bless and protect you ,just keep strong Issy as you have been. xx Neusa

  5. Reading this post made me cry so much, you are such a strong and brave lady and your son is an amazing little boy, I can’t even imagine what you are going through, my dad was diagnosed with non Hodgkin lymphoma 3 years ago and has been fighting it ever since, I saw and felt the pain it caused me and my family but the person who felt the most was obviously my dad, seeing what he had to go threw was so damn hard but he’s a fighter, I guess what I’m trying to say is that even though Bede is in pain I have been following your posts and he sounds like a fighter my thoughts and prayers are with you and Bede, you truly are an amazing lady for a mum to see her her child in pain would be so bloody hard and yet you seem to remain so strong and determined. We believe in you Bede stay strong lil man xxxxxxx

  6. Your devotion, passion and love for Bede will make it right.
    Bless you and your angelic warrior prince.
    Love Wendy and Paul xxxxxx

  7. There are and never will be any words I can say or give you that can express just how much I feel for, think of, admire, hope and prayer.
    Bede is an amazing boy and has such amazing parents.. As a mother of two young ones I cannot begin to imagine your every day to day life.
    Just know that if I saw and met you I would wrap you all up in the biggest hug possible, that I am thinking of you and Bede, I am sending prayers and more.

  8. Beautiful Bede and family. U are all so loved by many many people. Those that have met u and those that havent. We send all of u the purest most loving positive caring prayers and thoughts ever. Bede u are just so special in all ways. We love u all very much xox

  9. you are so in my heart and i am so proud of you little sunshine bede
    loving thoughts and prayers i am sending to all of you xx

  10. Love will always be here
    Love will have no fear
    Love will shed not one tear
    for Love is strong
    and Bede belongs
    to all who love him
    with all their heart
    Much Love, Prayers and Positive Thoughts are with you Bede for now and always

  11. My heart goes out to you, Bede and other family members. As a grandma to a little boy the same age as Bede, I marvel at yours and Bede’s strength and courage. You are foremost in my thoughts and prayers.

  12. That is the most amazing post I have ever read….your strength, understanding and compassion is incredible…. I am wrapping you both up in a blanket of love xo

  13. Bede reminds us of how important it is to smile, to love, to make the most of everyday, never has one so young impacted so much on our lives in such a short time, he is always in our thoughts, he matters more than anything else and he is but a gift so we say “thank you, Bede, we hope for you, we pray for you and more than anything we love you.”

  14. I just discovered this page…and I am so moved….and I can not do anything but send you tons of positive thoughts and prayers. De tout mon coeur avec Bede.

  15. Love and healing comes to Bede and all of you, every minute of every day. I share with you a prayer that I have said for my children since the day they were born and now my grandchildren and now for Bede. ” Angels at his feet, angels at his head, angels all around his bed”. Archangel Michael for protection, Raphael for healing, Gabriel helping you with your writing and Uriel shining his light to calm the confusion.

  16. When we met in the hospital I didn’t tell you that I lost my dear dad to brain cancer 4 years ago. He was 67…we nursed him at home with love, respect and adoration. I thought he was so young. I wish for you, Roy and Gus TIME with your beautiful baby. His huge “full of life” eyes staring at me in the ICU are never far from my thoughts and something I could never ever forget. Jane x

  17. Thank you so much for sharing Bede’s life journey with us all. We are blessed and honoured to pray for such a spiritual soul. One so small in his suffering inspires, enlightens, motivates and touches the hearts of so many whom have never met him. Now always in our prayers, hearts and smiles.

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