Tag Archives: brain cancer

The tumour update.

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I suppose the moment for this blog has long past.

great

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.

bede flowers

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.

bedes mandarin

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.

bede cable car

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.

beach smiles

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.

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.