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.
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.
* 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.
Is; Calley and I saw Bede and Roy just this afternoon…I commented on how, with everything going on, with all that this cancer is doing to him and all that the treatment is doing to him, he still thrives in spite of it (he had just fallen asleep, finally, in Roy’s arms). Totally, awesomely, amazing. That is Bede showing us all how to live, no matter how long we may have, or how short our time may be. That kid is living in every single moment and not denying himself a micro second of any joy within his reach. He is so very definitely HERE. Love to you all xx.
Leave a reply…..hmmm how very hard that can be….. only this, that darkness, the unutterable sadness, the sense of death always standing close by, should never be felt by any parent but sometimes is. . You are brave to offer this truth and understanding to others my dear, dear daughter, and I pray that they listen and hear it
I have no words.. Bede is mighty. He is the definition of strength and willpower. The love he holds for his family to keep fighting is undeniable.
He suffers and he fights on. He is a true hero. Bravely dealing with the hand he was drawn.. And how unfair it all is.
Sending love, positive thoughts and waves of hope and peace to you all.
Thank you for giving us an insight into his fight Issy
Cancer is a ruthless cow, and I’m so sorry for all the pain and darkness, I constantly think about your little man, and send extra love and hope when I tuck my little boy in every night.
Beautifully put…….and so true!
Big hugs to your brave boy and his incredible family
Trudy Bostock from my IPad 🐘🐘🐘🐘🐘🐘🐘🐘🐘🐘🐘
I dedicate every waking hour of work, pain, and breath to the Angels that guide and watch over you and your beloved Bede. There are no words of comfort deep enough to soothe your journey, yet your magnificent words of Bede’s light, his spirit, his touch on this world and yes even his pain comfort others. You are one of the most amazing Mothers this life has moulded. You love touches more than the fragile limbs of Bede and your family. You my dear with a world of pain and joy in your heart are an inspiration. Bede is truly almighty.
Is & Roy,
I’m guttered and ashamed at my ignorance. The mask you both wear is deceiving. It gives others comfort- that things are manageable, things are ok at home, that everyone is coping.
How naive of me. Thank you for posting this. It must have been an enormously difficult decision to do so. But again, so very brave of you.
I realise that I have let that happen. In my own busyness of children, school, sports, family life, I have justified in my head that when I see you smiling, holding your beautiful baby boy in your arms, that everything is ok. Just for now.
I must point out though, that it is my subconscience that makes this decision. Because if I really just stopped what I was doing and thought about it, of course you guys are not ok.
To have a sick child is worrying and stressful. To have a child with brain cancer is something beyond my imagination. It is gut wrenchingly horrible that any child should be as sick as yours.
Thank god Bede was blessed with parents such as yourselves.
You see the positivity, his light, his witty sense of humour. You remind us all to celebrate him and pray for him in the most beautiful way.
You can bet that my prayers will continue for your courageous young man…. But now my prayers will also include that God blesses you both with renewed strength, persistence, stamina and patience.
You two continue to inspire me.
All cancer is the same?? Someone actually said that to you? Wow. I am absolutely shocked at that level of ignorance.
All cancer sucks? Sure. But the same? Nope.
I barely even feel justified in calling myself a cancer mum, because what we went through was nothing compared to most.
I think it wonderfully brave of you to post this. Bede’s light and joy and positivity that you share is a gift to the world.
And so is this darkness. People need to understand. And I am so, so sorry that such cruelty exists for anyone, but especially for a child.
Thank you for sharing the reality that is Brain Cancer. I have shed many tears for Bede, who I have never had the privilege to meet. I think of him when I tuck my children into bed, I pray for him every night and I hope that with public exposure via ‘Cure Brain Cancer’ a significant increase in funding will see better outcomes from those afflicted with this terrible cancer.
Sending you love and positive light always xxx