Tag Archives: agressive tumour

Bede’s tumour is growing.

Posted on by

As I write this it’s late. Roy’s been doing the heavy lifting with nights lately but tonight I am alone. Waiting to give the midnight meds and hoping he drifts off soon.
We have been buying time. Buying time to process our reality, buying time to let Gus sort out everything he has going on at school, buying time while we figure out what we want to do.

But there is no time to be bought and I am sick and tired of half sentences, half answers. Not lying but not disclosing. Holding our secret close when we all know a problem shared is a problem lightened.

Three weeks ago we posted about Bede’s MRI and received the results pretty quickly. Since then we have wrapped ourselves up in the love and comfort of our closest friends and family.
We have had twice weekly meetings with Bede’s primary doctor.

We have tried to keep on swimming while the difficult wave filled nights have threatened to drown us in exhaustion and in our own thoughts.

Bede’s tumour is growing.
The cancer is overcoming the chemotherapy and the tumour is breathing new life, focused on robbing Bede of his. For now, both astoundingly and predictably, it fails.

Bede is here living and laughing, lighting and loving and it looks a little something like this…

image

image

He lights the way and I am so happy to just bathe in that shine and follow his lead. His inner joy, his uncompromising happiness and resilient love glisten through the troubles like jewels.

 

We also have two trips to Sydney coming up to see different doctors. We have people in the US and the UK looking at Bede’s scans. Surgeons, oncologists, radiation oncologists. We are having renewed discussions with our team of doctors in Perth.

We hope to go forward with balanced judgment with an aim to prolong sweet life for Bede but never at his own expense. As our little miracle man keeps on keeping on.

Your prayers, your hope, your love are always humbly received.
I know I have said it before but the miracle Bede has had and continues to need is all of you. We hope you will continue to buoy him with your good will.
If love, hope, prayers, faith, positivity and joy don’t shrink this tumour it won’t be for lack of trying. Please continue to get behind Bede.

The tumour is growing.
Bede is small, Bede is mighty and we are so very thankful.

As magnificent as ever.

Posted on by

NEEDING LOVE POSITIVITY AND PRAYERS FOR BEDE.

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.