Tag Archives: Chemo

Half way through and the triumph is his.

Posted on by

It has been an incredibly difficult few weeks, some of our worst in fact but in this moment Bede is defiant and triumphant. He shines, purposefully and hopefully.

Bede’s happy soul and his inherent light are irrepressible. He bubbles and the delight he is taking in the world is contagious and full. He is cheerful.  His coos are high and happy. He laughs freely now. A breathy chirpy chuckle. His happiness comes with a new found ease and he draws us all in. We are taken and my god we are happy.

I am working on a post to update you on the last few weeks but it is difficult. A lot has happened and it has been taxing. I don’t think it is too dramatic to say we could have lost him and yet here he is now displaying his joy and resilience in all their glory. Bede is triumphant.

I just wanted to make sure I took this moment to mark Bede being halfway through his treatment. To that aim I’m posting the slideshow I referenced in my last post.

Here is Bede, putting one foot in front of the other and quietly, diligently, purposefully, happily, joyfully kicking cancer’s ass. Here is Bede bringing light and love and wonder to all those around him.  Here is Bede facing a rare brain cancer and doing it with grace. Here is Bede, take note he won’t be here long and he is magnificent.

Thanks for stopping by and thanks for seeing our beautiful Bede.

Thank you for wrapping him up in your love.

Thank you for empowering him to be known to the world by sharing his story.

My gratitude to you all runs deep.

If you want the music make sure you turn on the sound.
Please don’t forget to follow the blog so next time we need a mini miracle we can call on your positivity to help carry him through. There should be a little grey box at the bottom of your computer screen that says ‘follow’, its that easy,
Is.

It’s clear! It’s clear!

Posted on by

A quick message to let you in on some wonderful news.

Preliminary reports say the brain fluid test has come back clear and Bede has kicked meningitis’ ass. The first look at the fluid under the Microscope shows no bacteria. They will still try and grow some but considering it didn’t grow in the beginning it would be highly unlikely for that to happen now. It looks like we’re in the clear.

To say we are elated is an understatement. G is so proud of his brother as are we. We are absolutely awash with relief. This was one of our biggest challenges yet and Bede has faced it down as usual. We love him so much and are so very very proud of him. We’re excited and happy and thankful. Thank you for your love and prayers and support.

We managed to escape for the weekend down to the farm and it was lovely. It was wonderful to see the boys hang out together like brothers. G insisted on sitting right next to Bede for the drive and Bede spent the weekend reaching out to G. It has been amazing watching him actively enjoy his brother’s company.

Bede was so relaxed and would spend hours flaked out in front of the fire but was also having a lot of awake and engaged time, a lot. He spent much time in the sunshine with the breeze on his face at local wineries and in the garden.  He was blissed out in his first spa.

I think the greatest joy was just enjoying a family dynamic.

We are in awe of our little man and the infectious strength and happiness that wells from deep within him.

I would love to update you more comprehensively on how Bede’s little soul is weathering (robustly, happily, positively, calmly, collectedly) but I am exhausted and chemo starts tomorrow. For now I am going to crawl into bed with Bede and drink in every moment. Here are a few photos of the hundreds we took and just the first I have come across at this late hour.

I hope this post delivers Bede’s supporters a little of his joy and sunshine.

I remain humbled by your love and prayers and truly believe they are carrying Bede through these challenges.

Tonight my heart, naively, dares hope for a miracle.

flaked out by the fire

flaked out by the fire

still flaked out by the fire

still flaked out by the fire

brothers at bunker bay

brothers at bunker bay

worlds best brothers

cider in the sun and teething all over again!

cider in the sun and teething all over again!

“hmmm not too sure about this”

Good night cuddles by the fire

Good night cuddles by the fire

 

Is  xx

choices

Posted on by

As you all know this blog started as an SMS just updating Bede’s physical condition. As it has grown I occasionally feel compelled to venture outside the scope. This post does just that.

Bede's first chemo, Bede laughs in the face of cancer.

Bede’s first chemo, Bede laughs in the face of cancer.

A while a go a comment was left on the blog that wasn’t approved.

It spoke of all the torture Roy and I were putting Bede through and the author said she hoped we would do the right thing soon.

Those of you that know us know it would take a bit more than some thoughtless words from a stranger to upset Roy and I or even to disturb our perspective. The comment did get me thinking.

We are at a stage of Bede’s treatment that at any time if Roy and I say it’s time to call it quits the doctors will support that. We have the ‘choice’.

It’s a funny concept that choice. I used to be lucky and naive enough to think people in situations like this had choices. That there would be value judgements, choices, to be made along the way. Most of all I thought there would be a choice to say ok Bede has had enough. That at some point it would be a matter of just gently letting him drift off. What a fairy tale that belief was.

In a treatment sense we have no real choices. It seems to me most of the families on this ward have no real choice. Most are fighting for their children’s life. We have the added responsibility of fighting for the quality of his death.

If 2 weeks ago we had chosen not to proceed with the treatment the tumour would have kept growing at the rate it was.

Bede was in excruciating pain. He would have had a horrifying death.

Because we went ahead it seems we may have thwarted some of the tumors growth and Bede’s pain is subsiding but he has needed blood transfusions, and has had infections and is just generally feeling pretty lousy after chemo but the treatment may buy him some good quality time at home playing with his brother and possibly a much less painful death. Prolonging his life prolongs his illness. There is no perfectly happy choice there.

We fight for him to have a better day but sometimes even those are rough, it is still the lesser of two troubles.

People may hold up this translucent illusion of choice in the hope of alleviating some sense of powerlessness but it is ineffective and unreal, that is not reality. Roy and I have no choices but a deep responsibility to honour Bede and all of his experiences whether that be life or death or the day to day struggles.

Tonight I met a beautiful young and wise Iranian woman. She said in a beautifully soft voice that there’s a saying that roughly translates to “God gives the hardest soldiers the hardest things” and she embraced me and kissed me. People tell you a lot of sayings when your child is diagnosed with cancer but that one really resonated with me. Perhaps it was the coarseness of the words mixed with the tender way she delivered them. We are strong enough to guide him through  and soft enough to embrace every moment with him.

We may not have real treatment choices, we may be powerless in the direction our lives take but we are dealing with a profound little boy. Filled with light and substance. That alone empowers us to make life choices. We choose to face each obstacle with love and joy and thankfulness. We choose to sing to him and smile and cherish him. We choose to make his life loving even when it can not be lovely. We choose the fullness of life for as long as we are gifted with it.

We would both be sorry to think that any of you out there thought we were putting Bede through the trauma of childhood cancer just to satiate our own selfish needs to have him here. There are no real choices except the choice to love him and shower him with as much joy as we can muster. I assure you we do this.

This is Bede’s life and it is actually not torturous. He knows no different, he grieves no loss and is present in every moment. He leaves the horrible moments behind in the blink of an eye and happily loses himself in his Mum’s smile. There is a lot to be learnt there. Perhaps it is Bede who has the real choices. The choice of how he lives his life and there is a lot that can be learnt from the decisions he makes.

Sharing The Win

Posted on by

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!

Posted on by

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.

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.

Ordinarily extraordinary

Posted on by

post surgery bede

It’s been an ordinary day here. As per usual Bede’s little body rises to meet the challenges it faces.He had surgery at 8:30 this morning. The doctors inserted the broviac line and did the lumbar puncture. To insert the line they cut into his jugular, insert the tube and then sew his jugular back up again. He came out of that surgery a little more roughly than he seemed to after his brain surgery. His oxygen levels weren’t as great as last time and he was much more unsettled. Maybe that was because last time he had so many more drugs on board but it made me wonder if this is all starting to wear him down in small ways.

post surgery

As I type this the chemo drugs are dripping into him. Roy says it all seems too easy for something that is so serious. For me I feel incredibly uneasy. It feels like we are pumping poison into him and I wish we didn’t have to. It feels unnatural as a mum to be sitting here having to be ok with this. My hand rests on his head and I concentrate on channeling as much love into his little body as I can. We sit quietly all three of us taking comfort in the others company.

cytotoxic

Bede is to some extent unrecognizable now. The steroids he is on have swollen his face right up. Everyone keeps saying he must be so healthy and have gained so much weight but in reality he has had a small loss. I hope the swelling will go down soon but even that can not suppress his delight and his gentle joy. His smile shines through radiantly.

After a disheartening and exhausting week we go into this chemo feeling reenergized by Bede’s determined happiness and his strength. I have come to see Bede as a bit like a large ship, not making a fuss, lighting the way, calmly and firmly moving forward through the waves and the ice, unperturbed.

In summary we’re exhausted and wish we didn’t have to be here. The surgery went well and Bede as usual is doing amazingly.

I know I’ve said it before but we’re starting on the mild chemo and we’re only giving it 6 weeks to work its magic. Please pray, send positive thoughts, meditate on it whatever your thing is please please please send some of it Bede’s way.

I truly believe all the love and positivity he has received to date have made the world of difference to our beautiful Bede. I want so badly for his sake for the good chemo to work. For his experience of the world to be as painless as possible. For the bad not to be crowding out the good. I want sweetness, peace and light for this beautiful boy that embodies all those things.

This is just such and odd moment for our family. I have a joyous post to come but I knew so many of you would want this update so thought I would quickly throw it up.