Sharing The Win

We have been here at the hospital for two weeks now.

ward

Today Bede had surgery. Last week Bede’s permanent line fell out so today it was replaced with an infuser port. He came through this surgery much better than his last.

coming out of surgery

He is continuing to slowly wake up from the drug induced fog. Perhaps a little slower than I anticipated in my last post but today is our best day yet. That is pretty incredible given he has just had surgery and all that he has been through over the last few weeks.

He is more awake and enjoying playing with his soft bunny.

As I write this Bede’s Dad is whispering to him how proud he is of him. The lights are dimmed. Soothing music is playing. The love that radiates from Bede fortifies us all. Through it all the soft and gentle beauty that is essentially Bede is unmoving. Who he is glimmers through the fog.

Hope for a better day swells within me and I am thankful for all your love. Be reassured that he is doing amazingly well.

How well he has come through this surgery definitely counts as a win.

Bede’s back!

smiles for bede copy jpeg

I have tried hard to write a blog explaining all that has happened but there is no point intellectualizing it. It’s been a very difficult week.

I am awash with exhausted relief. Glorious exhausted relief. Far too awash to do justice to the calm joy that wells deep within me. Most of all I am thankful. His soul is here with his Mumma, entwined for another day. His weight and light and beauty and substance mingle with every fibre of my being.

Let me tell you something about Bede, all superfluities aside he is just plain awe inspiring and incredible.

Bede is here. As has become typical his little body rose up to meet the challenges it was faced with. He some how determinedly and resolutely put one foot in front of the other and got on with the business of living, balancing grit with beauty and light. He was in the deepest pit, one that none of us could see a way out of and he has step by step climbed his way out.

He is tired, as we all are, but he is slowly rousing from the fog that the large amounts of narcotics visited upon him.  I have said it before Bede doesn’t simply bounce back as you so often hear some children do. He is consolidating his position and then slowly and purposefully moving forward.

looking up to mumma.

I’m not sure exactly how or even the exact moment we turned a corner but we did, he did. When we were still in the midst of the fog just after the pain had passed but when Bede was heavily sedated he chose his moments and then shone through. He opened his eyes and was engaged. He could not physically bring his lips to a smile but every other part of his face lit up as he looked up at his family. The little eyebrow that twitches before a grin was insuppressible and his eyes sparkled.

Now slowly, bit-by-bit he wakes. He is not a 100% yet but he is in there. Today when it was just Bede and I snuggled in together the smallest smile skipped across his face…. Bede’s back!

The last week has been overwhelming for a whole number of reasons aside from the acuity of Bede’s illness, most of them distractions, and we are all physically and emotionally exhausted.

All is not solved, we are where we were before this latest scare but that is still so much better than we were last Sunday. We are waiting to see how effective this chemo is to know how much time we are afforded. We are slowly weaning back the oxygen and pain killers. Bede lives to fight  and love and light another day.

Tonight I bathe in sweet relief. I am wrapped in his warmth. His love is all encompassing and more grounded than ever. I remain madly and deeply in love with Roy and lightened and uplifted by Gus’ joyfulness. I am so incredibly deeply thankful. We have faced our darkest moments and once again Bede lit the way.

I am so especially thankful to Bede’s primary doctor for the care and time she has given not only Bede but also Roy and I that helped us find our way through. She did more than treat him physically, she kept hope when ours erred. We are blessed to have her on Team Bede.

Most of all I am thankful to all of you. Make no mistake your love and prayers and care are real and tangible and helpful and solid and amazing. I truly believe they are carrying him through. The miracle Bede needs is all of you. We were there, teetering on the edge of the cliff and I believe you pulled us back.

This blog doesn’t sound as celebratory as it should be, my exhaustion pervades. Feel free to cheer, dance in the streets, grin ear to ear for me. Bede did it again.

As magnificent as ever.

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.

This is where all the cool kids hang out, sharing the love.

WOW! What an incredible few days.
My greatest fear, that our stoic, warm, solid, peaceful, smiling Bede would all too easily fade into nothingness, is slowly, person by person, facebook share by facebook share, being alleviated.

The blog has taken off. Everyone from Joel Madden to Kevin Rudd, Liverpool player Brad Jones to Chrissie Swan and so many more have tweeted support for Bede and I’m not even on twitter. All our facebook friends, the people in our atmosphere, have been reading about Bede. I can’t adequately express my deep thankfulness. It is such a gift you all give me as a mother to know my son was here, you noticed, he matters and that despite his short life he is getting his opportunity to make his mark on this old world.

We had Bede baptized on Saturday and as I walked around the corner to the church I was overwhelmed by all the people standing out the front ready to offer Bede and our family, their love and support.  Such a joyous milestone, marked with a front lawn party, gifts, good friends, champagne, kids running around, just a total celebration of Bede and his joy.
baptism church baptism church candles

The days have also been marred with some difficulties. Bede is momentarily, worn and wearied. For the first time in his life he cries with discontentment. He’s had a rough couple of days, with the new tumours have come more pain and so we have been working hard at  getting his pain management plan right. I think we are getting on top of it now.

Bede in my arms blog

Today we decided to up his treatment to the hard core chemo. It’s a difficult decision. For a while most of our time will be spent at the hospital which will be difficult for Bede and for Gus. We were at the stage where the doctors would have allowed us to just make him comfortable if we had pushed for that. But for now he is full of life and vigor and a grounded determinedness. He’s still smiling.

At the beginning of all this we promised ourselves and our families and Bede that we would fight like no one has ever fought before. We also said that when the time came we were the right people to honour his truth, his life experience and fill his life with sweetness, comfort and light just as he has filled ours. We’re not there yet and the doctors agree. He surely is tired though.

In the hospital for a short visit on Sunday, I watched as his limbs just melted exhaustedly into Roy’s arms. He took a moment, searching within himself for the energy and started producing glorious smiles. His light shining relentlessly, determinedly, refusing to be obscured.

There is an exhausted joy. A lopsided happiness. Until now Bede has just simply continued on despite his illness. I really see for the first time this illness taking its toll on Bede’s soul. I also see, Bede digging in his heels and fighting. Refusing to be robbed of his gentle peace. Its not an angry fight or battle but a peaceful protest. He is shaken but he is undeterred. He is calm and beautiful and warm and his light glows and lights up all those around him. He is powerful and gentle. He is peaceful and strong.
In this, some of his most difficult moments yet he is showing his metal and I am in awe of his strength and his grace.

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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