I suppose the moment for this blog has long past.
But it’s been too difficult to write.
Following so much joy and hope and just spectacular everyday-ness Bede’s last MRI wasn’t great.
We had been talking about Bede walking, about him going to school one day.
Our doctor walked into our rehab session.
“You’re not smiling”
“No I’m not”
“Is it because you’re just not smiling or because you have our results?”
“I’m sorry guys, we need to talk about the results.”
I clutch Bede to my chest.
How dare cancer do this to us now.
Not with his progress.
Not when he finally visits the park, participates in family dinner, explores.
Not when he is learning to live.
I desperately want to put brain cancer on hold.
This is what the moment you know you’re about to be told your child is dying looks like. You’d think I’d be an expert by now but I’m not.
This is what disconnected soul trauma looks like. A sunny friendly room, with two happy babies, a loving husband, and a man who is far too kind tasked with breaking my heart.
I slump onto Bede’s therapy mat frozen. Looking between my tiny newborn daughter and Bede. Talking to B, reassuring him even though he is oblivious.
I can’t bring myself to get up. I don’t want to. I know they’re waiting for me.
“Come on Is”.
But I cannot cross that threshold. I don’t want to go back into a world where even the golden moments are all about losing Bede. I know when I stand up I lose him all over again. I know what that is now and today I can’t bear the grief. I don’t want to cross that threshold. But here we are and mothering Bede as he deserves demands that I do. So I rise and I brace and I refuse to cry because there are questions be asked.
The answers are brutal. The tumour shows significant growth although we can’t know for sure how quickly it will take Bede its estimated he only has 6-8 months.
My worst fear that Bede has hung around just long enough to meet his sister seems to have arrived.
At night Cress wakes me up to breast feed but I cant get back to sleep. Instead I lay there wondering how I will mother Bede in death. I know we have always wanted to keep him at home and I wonder if and how that will be possible. How I will honour him.
I am hormonal, exhausted, lost and broken when a dear friend, in a comparable position, reminds me of my own words. Words I had given her years a go. “At the end of the day we are the lucky ones. Because we got them. We get them. No one else will ever know the privilege of mothering these boys.”
I remember all we have is today.
Roy and I focus. We regroup. We know we’ve been here before. Almost a year a go exactly. We once again book tickets to Sydney and we hold our breath….
Once again Sydney delivers a completely different perspective.
It lashes out exhausted hope.
Professor Sydney doesn’t think Bede is necessarily terminal. He doesn’t think we should rush the next MRI. He does think the tumour change that’s clearly visible on the MRI is within the realms of normal fluctuations. He disagrees about its significance.
He reminds us to focus on therapy and rehabilitation and nutrition. He says we may just have a very long haul ahead of us and we need to focus on minimizing Bede’s long-term disability.
We try and reconcile this with the prognosis Dr Perth gave us. Two men who are leaders in their fields. We decide to live each day is it comes, order a bottle of champagne and wake up the next morning and take the kids to Taronga.
So here we are again living in the in between. Waiting with bated breath.
But there is no waiting for Bede… he barrels ahead embracing life and learning and his brother and sister.
So now the next MRI is tomorrow. We’re leaning towards no more treatment if the tumour has grown. That’s a scary thing to put in writing in the public domain. It feels like a decision that is almost too deeply personal to share but that’s what this blog has always been.
If we choose no more treatment for Bede it will be because our backs are to the wall. Because they are all too exceptionally horrendous due to the unique complications Bede would face. I spoke a long time a go about the fallacy of choice.
So let’s call this the elusive tumour update. Not my best piece of writing, not my best piece of life. It is what it is and it is the best I’ve got right now. I have a Bede update ready to go but I wanted to separate him from this. I think because who he is now seems so separate from this news.
I was at mothers group today and some beautiful catholic nuns help out looking after the babies to give the mums a chance to eat fruit toast and chocolate cake. I was talking to one of the sister’s about Bede’s scan tomorrow. She is a small gentle woman but with all the conviction in the world she said “Let’s pray and storm the heavens!” So if you have any prayers, love, light, hope, good vibrations, sunshine on a rainy day, wishes to send our way please do.
I just want our Bumble Bede, our brave little explorer, to be ok.
He may be small but he is mighty and more than ever he seems bigger than this.
storming heaven alright……..much love
Oh Is….all my thoughts and white light for Bede tomorrow. Storming the heavens! He has surprised us all before that tricky boy.
Big big hugs.
Trudy Bostock from my IPad 🐘🐘🐘🐘🐘🐘🐘🐘🐘🐘🐘
I have been following your journey as I too have travelled this road. Continued prayers for you all. Limbo land as I used to call it is an exhausting time. Treasure every moment with your sweet boy xx⭐️x
Thanks Emma, that means a lot. I’ll say a prayer for you all. 💙
We are storming the heavens right beside you. Come on beautiful Bede, you have this!
Much love, light and sunshine.
The Andersons ❤️☀️
We will be thinking of you tomorrow. Love Laine & Isla xx
Backing Bede always. xo
Placing my prayers in the palm of Gods loving hands 🙏….love 💙 and strength to you all. Lyn x
I love the shot of Bede kicking back on the sand – he is such a little legend. Shine on baby boy. Your sheer determination , has indeed won many times before. Strength, Love , Light, Power & Determination to each & every one of you xoxo
Issy & Roy, we will have you and your splendid young man in our thoughts tomorrow as always. The Toye Family x
Oh Is.. Eloquently written as usual but I wish you had never had to ..
I can’t imagine your pain.
I’m so glad you and Roy are Bedes parents .. I can’t think of anyone better.
All the prayers, thoughts, best wishes for tomorrow. We are there with you in spirit x
Sending positive energy and love …
Prayers and wishes coming your way, he sure is mighty. Thinking of you.
With love the Nicolson’s!
Dearest Isabella & Roy,
My heart is heavy with hearing this news, all I can say is I am sending all the Love, Light, Positive Energy, Good Vibes and Prayers to your little man.
Bede, you are an amazing soul with an amazing family. You have all of Team Bede right behind you giving you strength: today, tomorrow and every day.
Thinking of you always. Xxx
Wow in all this pain you are still theist amazing woman..
Bede, you have been here and shown the naughty C just what you are made of.. Keep fighting little man and we will fight with you.
Sending you all the love, strength and prayers in the world xxx 😘☀️
I pray for peace and strength for the family. I pray healing for little Bede so that in a long time to come he can tell his story. Jesus name Amen.
Every time I give my toddler hugs, watch her play and enjoy life I think of you Bede. You are a mighty strong little boy and we are sending you lots of love, hugs and strength.
Love Bel & Toria
Prayers are with you and Bede. All the family. Take each day as it comes. We will pray with you and storm the heavens. You and Bede are true inspirations to us all. Fighters, battlers, pioneers, David fighting the mighty Goliath. Love, hugs and prayers for you, for the outcome of the MRI and for the decisions you will have to face. God bless!
All my thoughts and best wishes for mighty Bede tomorrow. You are a beautiful family and an inspiration to us all. Lots of love and light….
I’m praying up a storm. It is surely thundering in heaven right now. God blessed the world with Bede and won’t let us down.
This post was very hard to read. I’m so sorry for you all. You’ve been through so much already. The little Catholic nun, however, summed it up with her “let’s storm heaven” comment. Wishing you all the best. xx
My thoughts and preys are with you and your beautiful little boy such a gorgeous little solider may he soldier on and enjoy the love you and all of us have knowing we are all cheering him on with the challenges he faces. Positive thoughts and vibes coming your way.
So much love Issy. So much love xxx
My heart is overflowing for your beautiful family xxxx all our love and prayers
You’ve bought a tear to my eye, come on Bede, you strong, beautiful and amazing little boy. Keeping you all in my thoughts as always xx
Our thoughts and prayers are with you. Don’t give up hope.
It may seem like a mountain too high to climb but you have all come so far.
Wishing you every bit of miracle the universe has to offer.
Sending prayers and positive thoughts your way x
My prayers are with you for a much needed ray of light. xx
Sending love and prayers to storm the heavens to you beautiful Bede! xx
You are in my prayers. You are now on a pray group prayers. Storming heaving with all our prayers as we speak. Bless you Bede and famiky xo
I just explained to my children (3 &6), who are looking over my shoulder at Bede, who he is when they asked and that he is sick inside. And explained to them that he may go to the stars while he is a little boy if he doesn’t get better and that sometimes life is tough but that Bede is bringing such special gifts to his family.
And he will bring special gifts even when things feel really hard.
I told them he is happy and playing at the beach. And that he has a baby sister.
I see the love and compassion I hope I am teaching them. And I hope they have gratitude for their lives.
Sending love and light to Bede and you all.
He is bringing so many gifts to the lives of all xxx
As always, thinking of you all! Crossing everything that this is just another test, another way for gorgeous Bede to show his never ending strength and for you all to show yours. Whichever way things go know that Bede and your has and always is touching the hearts of so many.
Sending love and light to all of you.❤️
We were in the same online mothers due in group. I think about you and Bede a lot. I have been put in a similar situation with my little boy, I know he hasn’t got a long life ahead of him and it’s such a scary thing to think about the state of his future. Following your story has been good but sad. Lot’s of hope and light for Bede. I’ll wish good things for both my son Harry and your little guy Bede. xxx
Thinking of you Bede! You are a strong little soul and I pray for you xx Love Alli & Tilli
Sending you all the strongest of prayers and best wishes.I have been following bede’s journey and he sure is mighty.He is a gorgeous little boy and is blessed to have such loving parents.Your all in my thoughts always.May you be blessed with strength and peace and good news and may bede be blessed with the strength to keep being the little warrior that he is.
Sending you Love and light
Wendy ,Alex and Bella xo
Hi there, just wondering how Bede is going? I think of him often x
Hi Bree, I’m sorry I have only just seen this message!
Thank you for thinking of Bede and thank you for taking the time to ask about him. He’s doing really well at the moment. I have just done an update on the latest scan and how we’ve all been travelling but will have another up with an exciting milestone in the next week! I can’t wait to share it with you actually 🙂
Take care x
I have just finished reading Bede’s story. I am in tears he is such a remarkable boy and to fight this long has astonished me. As I’m writing this with tears rolling down my face i am amazed at not only how strong Bede is but also his family for taking the time and writing this blog. I send and my prayers well wishes every positive thought i have to Bede and his family. It was a tough thing for them to say they wish he would pass but i can completely understand that they just want there little boy to be at peace and not in constant pain. May your strength carry you through this hard time and know there are many of us wishing all of you all the best.
Just ready some of your blogs and it broke my heart. Bede is such an adorable baby and is very lucky to have two amazing parents by his side supporting him. Praying for you and your family.
Just saw The Project. So sorry that you need to endure peeps 30 second judgments on top of everything you already are. Wishing you strength. They obviously can’t even begin to comprehend what you are going through, let alone have compassion for your situation. I’m on your side.