Team Bede by Janine
My name is Isabella and the Bede update started during our first admission as an sms to the 4 or 5 people in our families that we are closest to.

As Bede got sicker and we had more and more admissions and more and more people requested to be kept up to date with what was going on with Bede it has grown and grown.

Last week our then 16 week old son was finally diagnosed with a rare form of brain cancer.  It is on his optic nerve, his pituitary gland and  is pushing against the stem. The cancer has spread throughout his brain stem and spine. The cancer in his brain is so big it can not be removed and the cancer that has spread to his spine and brain stem is so fine it can not be removed. Chemo is our only hope and Bede’s kind of tumour is apparently notoriously tricky to treat with chemo.

We don’t know if this is fightable or not and if it is to what extent.

My greatest fear as a mother, greater than the fear of losing him, is that Bede goes unknown to the world. That the potential lack of length of his life means he just fades away into nothingness.

We are humbled by just how many people want to know what’s going on so they can offer us support and offer Bede their love and prayers. Not just our family and friends but other families from the hospital, complete strangers, hospital staff, people we have never met or even heard of until someone tells us they want to know how Bede is.

It’s a daunting task informing everyone, while trying to process this experience ourselves.We do so because we truly believe that all the love, positivity and prayers everyone has been sending Bede’s way have made a true and tangible difference to his journey so far.

The love he is given will shape his experience of this world and we hope counter some of the harshness he has to face. So for all your love and care we are deeply grateful.

39 thoughts on “About

  1. I’m so glad you’re writing this blog. Bede will always matter to so many people and I’m pulling for him to beat this and have a long and happy life!

  2. Through a friend we have also joined Team Bede! Prayers and well wishes being sent your way. Stay positive and close and he will find a way to beat this. Much love to Bede and your family x

  3. I have joined Team Bede through Danielle……..Bede, you and your family are in my prayers and thoughts…………stay strong and fight the fight…..Much love to you all

  4. We have joined “Team Bede”. Mighty Bede, so beautiful indeed! Fight the Fight with all your might.
    The power of prayer we will share. Team work talks, Go! BEDE Go! you have the team power to win!

  5. I just want to say thank you so much for your bravery and courage. What you all face every minute of every day is unimaginable…
    I pray for you and your dear family, that you may have miracles and get to share many more cherished memories with your precious angel, Bede.
    Warmest Regards,

  6. To Bede’s Mother and Father, you are amazing. To Bede, to say that you are amazing is a great under statement. Thinking of you… Xo

  7. I could not read and not reply. All of my thoughts and prayers are with your family, and your beautiful baby boy. I’m praying for miracles and for peace for you all.

  8. I also could not read your story without letting you know that another family has joined the list. I shall not let another day go by without sending our love and strength to your little boy until we receive news he is finally well.

  9. Sending you lots of positive thoughts and strength for you all to get to the other side of this so you can continue a long journey of life together.

  10. got sent over to here from facebook… I am a complete stranger but that does not mean that I do not care. Beautiful Bede is in my thoughts and so are his parents and Gus. If anyone can beat this Bede can!

    That young soul has already taught the world so much! If he can keep smiling then so can everyone else!

  11. Another family joins you in prayer – Curtin family. What a miracle Bede already is in this world, to unite so many in love and hope.

  12. My heart aches for little bede. What a beautiful little boy and how sad to be faced with such a big fight so early on. my thoughts are with you and your family. I won’t forget bede. Xx

  13. Hi Isabella,
    My name is Erin Marie, I am a reporter at the Herald Sun newspaper.
    I have just read your blog and have been very touched by Bede’s story.
    I see you have written that you want awareness and further public support for Team Bede – if you are interested, please send me an email and we can have a chat.
    Thank you and wishing your family all the very best.

  14. You are in my thoughts and prayers. Sending you strength, love and hope. A parent’s love knows no boundaries xxxx

  15. Thank you for sharing Bede with us. Writing truly is an amazing form to help you through this journey. I wrote every day when my daughter was born 3months premature and I have continued to write in several blogs since then. Don’t ever stop as you have a really lovely way with words. Fee xx

  16. Sending lots of positive thoughts and prayers your way, Bede! Your community is here to surround you with love and will always be there to support your Mummy & Daddy. Shona from Baby Goose Boutique xxx

  17. Dear Bede, what a very brave young man you are. To have such a wonderful smile through all this adversity is commendable. Your family is so brave as are you. My wish is that you make a full recovery and are able to read about how many people admire you and your strength. Stay strong little fellow. Xxxxxx

  18. HI Isabella, I work for Roger Cook MLA, the Shadow Minister for Health. He would like to meet with you to discuss your concerns with Bede’s treatment. Please give our office a call during working hours on 9439 6444.

  19. I too came to Team Bede through a friend on Facebook. What an amazing family you have Bede – no wonder you are such a smiley little guy!! It is the simple things in life that bring so much happiness to us all and your smiling face has done that for all of your supporters. Sending love and happiness to you all.

  20. Thank you for contacting me today Isabella: with all that you have to bear, you were thoughtful enough to give me that gift. It’s impossible to read Bede’s story without tears, and impossible to see his face without smiling. Sending your family all the warmth and good thoughts possible.

  21. I am a complete stranger but joining Team Bede to offer all the support and strength I can – keep fighting Bede and stay strong mumma. Thinking of you all x

  22. I am also a complete stranger who has joined team Bede. Sending all of my light and love to your exceptionally beautiful family. Stay amazing Bede and family xxx

  23. I’m also from afar (French living in Canary Islands) and I send all my thoughts, light and love to your family and mighty and brave Bede. I’m part of an active dreamer’s group (Robert Moss Technic). If you need us to dream for you, just tell me and we will be there.

  24. I’ve Just come across your blog… And my Heart is in pieces as i have a 3years 9mo boy…. On the other Hand, the love you have and the strength you all have, especially Bede, is só strong that is almost touchable. Be sure he is way too far from being nothing as you were once afraid of.
    Also, Be sure you have All my love and prayers here from Brazil and i’m sure from different places around this huge world we live in.

  25. Best wishes to a truly amazing family. I will never look at my son the same after reading your story

    God bless xxxx

  26. Hi Bede,
    I saw you on The Project last night, with your beautiful family and couldn’t help but fall in love with your little hands and gorgeous smile. As someone who is aching to have a baby of her own, with hardships in achieving that goal, I felt for your mum who carried you and has to see you in pain. I pray for all the happiness in the world to fill the hearts of your parents and big brother so the sadness they feel from seeing you in pain is over shadowed. I pray for you to have peace and serenity and for any pain to melt away and not hurt you.
    Bede’s mum and dad, you guys are an inspiration of strength, honestly and parent-hood. You are the reason why the world still has happiness and joy in it despite of all the evil and sadness that prevails.
    You guys will always be in my prayers, I pray for a miracle for Bede to wake up 100% tumor free because we believe when you ask Allah for something, don’t hold back and ask for what may seem impossible!

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