Monthly Archives: August 2014

Bede’s tumour is growing.

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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…

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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.

Brain Cancer

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This blog post was written in April of this year at a time when our family was under a lot of external pressures and Bede was not in as good a place as he is now. He was incredibly ill. A couple of people repeatedly expressed to my husband that all cancer is the same and that night I wrote this blog. When I chose not to post it I almost stopped blogging. I’m posting this now in hope of undoing my writer’s block so I can start to communicate the joy of Bede again. This blog has always sought to be honest, our positivity and our happiness is honest. A number of people involved with brain cancer, including other brain cancer mothers,  have asked me to post the blog as they feel it is an honest representation. So here goes….

 

 

Let me tell you something, it is not a gentle drifting.
It is not a slow but gentle decline. It is not an all encompassing nausea.
It is an all out assault. It is brutality in its purest form. It is invasive.

It takes your inner core and torments it.
Hours of distress and constant uncontrollable movement.
Vomiting even when the tube surpasses his stomach so there are no contents just painfully retching up pure bile for hours at a time.

Repeated spells of lifelessness.
Seizures.
Brain irritiation that just results in constant screaming.
Losses of oxygen.
For some loss of sight, loss of hearing, loss of ability to control your own bowel or empty your bladder or walk or swallow or talk and Im not just talking end stage here. I am talking this is life. This is where the hope is lingering.

Bede’s bones are breaking, his gut is breaking down, his brain is irritated, his vertebrae is collapsing in on itself and both his knees are fractured.
He is not able to communicate what is wrong.
Sometimes I don’t sleep for 30 hours at a time while I try and soothe his symptoms. This is mentally, emotionally and physically the hardest test of endurance I have ever met.
None of this stops when the chemo does. When the chemo stops all of this hits it’s stride.

 

There is death. Sitting in the room with death and wondering if this week, this day, as I press the red emergency bell, if this moment is his death. Not fighting, not resisting, wondering. That is repeated frequently and that is exhausting.

 

People say they can not imagine losing a child. Well imagine having that happen repeatedly in the space of a week. Watching their body go lifeless. Watching their numbers drop on the monitor. Feeling the adrenalin surge through you. Trying to keep your voice steady as you reassure him hoping to reach him on some level.
Trembling as the doctors explain what is happening and this is still our best and only option.

Let me tell you something else at no point do you get used to your child dying. Each time his body goes limp and lifeless, each time the doctors mistakenly tell you he is end stage and it could be any time, each time he has a seizure that can not be controlled, each time is just as traumatic as the first.

It doesn’t matter how at peace you are with his death, how comfortable you have become in it’s presence, how many times you have given him your blessing to go each time it winds you, each time I sob. One of the most recent times I was alone. My husband was not at the hospital, he had been on speaker phone for the news but when the conversation stops, the practical discussion ends I am reduced to guttural weeping. Clinging to my son’s doctor as though that could change anything.

There is horror here. There is blackness and desolation.

You sit there and you tell us all cancer is equal, its all the same. That we shouldn’t need to support each other quite so much.

If all cancer is equal why do I long for a different cancer for my son.
Why is there not even the hope of cure for my son?
Why when I tell the nurses and the doctors what you say do they shake their heads in disbelief?
Why has my son spent the majority of the last 5 weeks sedated?
Why is it even improvement in the tumour robs him of his autonomy?

When you say that all cancer is the same you deny his brilliance. Because this is black and this bleak and this is hard but he is soft and he is light and he is hope and he smiles when I know you or I would never, could never, have the strength of character to.

So all of the light and positivity and happiness I have always blogged about is true. the miracle is that his light is not diminished by the darkness, he radiates through it. Shining and glistening and laughing and exploring his way through life.

This is harder than you have the ability to imagine.
Bede’s is a story of triumph but triumph does not come without a cost and when you deny his reality you deny his brilliance and I will not sit idly by while you do that.

I will not sit idly by while you diminish the brutality and the relentless reality of childhood brain cancer. I will not allow our focus on positivity and light and love to enable your misconceptions.
So here I am correcting you in the name of Imzadi and *Luca and Harvey  and *Ben whose deaths were slow and painful and prolonged and unimaginable and who fought with cheek, valiance, love and grace respectively.
In the name of Bede and & Blake who fight the incredible fight with smiles and songs and love and joy.

Brain cancer is not better or worse. It is different, it is more hopeless and the demands it places on patients and families are in a league of their own.
Bede may be small but you better believe he is mighty.


Note:

* some names have been changed to respect the privacy of the deceased.

Sadly Blake has passed away since this post was first written.

This blog is not intended to diminish the sadness, real deep difficulty, pain of other cancers. This blog is a reflection of my experience of pediatric brain cancer and my observations after spending a year on the peadiatric oncology ward. One of my dearest friends in the world lost her beautiful precious daughter to leukemia recently. I am not seeking to diminish the tragedy of other cancers.
I am saying the dance to the grave is different and I am hoping to seek understanding of that.

If your into it. Please take the time to follow the blog. Then the next time Bede needs some positivity and hope behind him we can call on you to send a dose his way.

Dear Gus, thank you for your nurturing cooling shade.

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For some reason whenever I see this photo I imagine the two of you at a festival in 18 years time.

For some reason whenever I see this photo I imagine the two of you at a festival in 18 years time.

Dear Gus,

I am writing this now because I imagine one day you will go looking for this blog and you will survey a small but defining part of your family’s history through it’s words.

The fabric of our family is woven with love and friendship. In so many ways we all chose each other and what we would become to one another.

When you look back at this time I hope you remember it with the fierce love that has come to define it but I know you may not. I know that teenagers can have angst. I know that hindsight can create imagined regret, manufactured guilt and should that happen for you I don’t want my words to seem retrospectively comforting for the sake of comfort.

I am writing this to you today so you can undoubtedly know the truth. The truth of this moment as it was lived; repeatedly.

You have been the best brother we could have ever imagined for our Bede and when we tell you that you always remind us that he is the best brother you could have ever asked for. You tell him how awesome he is everyday.

You wrap him in love and hope and pure unmitigated acceptance. You fill his days with laughter, sincere chats, playfulness and you educate us all on how to settle him. You tell me about how your hearts talk to each other.

When Bede is crying in the mornings I put him into your bed and even if you are cranky at being woken up for school you never show it. You snuggle into him. He snuggles in to you and he smiles. You bounce him in the crook of your arm.
You are Bede’s safe place. You are his happy place. He has a gentle ease with you. You couldn’t possibly be more than you are to him because to him you are everything.

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I want you to know at 7 years old you were scared to tell me you were hoping Bede would die. You couldn’t bare to see him suffer, you weren’t sure how much longer we could go on. It was a particularly difficult time in Bede’s treatment and you were not alone in those thoughts.

In that moment my heart broke that my beautiful Gussy that I had held so tenderly for so many years had to grapple with compassionately hoping his brother would die, a concept far to adult for my little boy. But as my heart broke my pride for you put all the pieces back together. I was in awe of your love, your empathy, your depth of reflection. Never feel guilt for this you have loved him purely and unselfishly.

I am not sure if you have ever felt a moment’s resentment for your brother. If you have you haven’t shown it and he has certainly never known it. You make allowances and cancel plans with a happy and understanding coolness.

There has never been a moment you haven’t hoped for what was best for your brother.

I remember you telling me that you didn’t see a down side to Bede not getting better and I said “well darling I explained to you the down side is that Bede will die”. Your reply has become one of our classic family tales. You said

“well that is all about us mum and this is actually about Bede. If he dies he will go to heaven and be with Molly Gran and Poppa and if he lives he gets to stay here and know our love”

You have given your brother the greatest gift in the world. You have made cancer irrelevant. When he is with you you are his big brother, he is your baby bro and he gets to be all he was meant to be and all that he is. He gets to play.

The medical team aren’t sure how good Bede’s eye sight is right now but when you walk into a room he seeks you out. He is drawn to you. He loves you happily, tenderly, with the awe of a little brother and soaks up whatever you are happy to teach him.

He uses his little arms to pull your face into his own and hug and kiss you. He gets to be a playful little boy with you and as I type this you are both lying on the living room floor laughing.

Your light fills every crevice. Bede’s light is no accident it is clearly a familial trait amongst brothers. You have led by example.

Your matter of factness, your groundedness and your ability to simultaneously hold defiant faith fuelled hope and the grim reality at the same time is truly humbling. Most adults I have encountered cannot do that.

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People have told me and one day they may tell you that this has been the making of you. Do not listen to them son. How wrong they are.
You were born the most compassionate, loving, tender, affectionate, empathetic, clever, dry, funny, joyful, thoughtful little boy. This has not made you, or defined you. You have always been your own incredible person.

It can only be an act by the grace of God that Bede got to have you, he got to grow with you in your nurturing, cooling shade.

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How much love can a bear bare.

I have grown up with you. Being your mother grew me. I so often wish I could spare you from the pain ahead, from the sorrow. I wish I could protect you but in some round about way I hope our positivity, our love and the happiness we find in one another will help us all.

If I could offer future you any comfort it would be that you make him happiest. He is at home with you. He has truly lived because he got to have you.
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This post is to future you but if I had to think about present you I’d say:

I know that sometimes I am hard on you but I want you to continue to grow into the remarkable young man you are set to become and part of that is respect and discipline.

I know that sometimes I am soft on you and I spoil you but I want you to continue to grow into the remarkable young man you are set to become and part of that is embracing you gently with tender easiness and protecting from the bruises.

If I had to make present you a promise I’d say:
I will continue to try to live up to the gift of being your mother (and I promise to beat you in every water fight this summer).

You were my first love. You are my whole world. You are my sunshine, my only sunshine. Your wit, intelligence, faith, affection and hope sustain our family. You are our anchor. Your Daddy and I love you so very much Gussy. You are doing brilliantly.

Thank you darling.