Ellie Lexie
@ellielexx
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Editor at My Baba, podcaster, freelance writer. Author of Jellie Diary and mum to Maddie and Billy The Brave, fighting DIPG brain cancer. 🇬🇧
London, England
Joined April 2009
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Please share my son’s story. He’s four and suffering from a terminal brain tumour.
Help us raise awareness of DIPG and get him on a potentially life saving trial:
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Dearest Billy,
I paid the invoice for your funeral today and as I transferred over the money, I looked at your photo and it all just seemed so unbelievable.
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This time last week, on Saturday morning, you woke up in your bedroom, were carried downstairs, ate very little breakfast and went back to sleep on the sofa. We knew something had changed. You slept for hours.
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Saturday morning this photo was taken. And we knew then.
Sunday morning we held you in our arms for hours and told you over and over again how special you are and how much we love you even after your little heart stopped beating.
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I’m just so heartbreakingly sorry the government, the pharmas and the healthcare industries haven’t done the same so that you and all the other precious little ones could have been saved from this awful, hellish disease.
We miss you so much. 💔
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The aisles are chock-full of the things you love, but we no longer get to put them in the trolley, pay for them, and pack them into the car and bring them home.
The laundry basket seems empty. Everything feels a bit like the laundry basket right now.
Mummy xxx
#dipg
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On the last day of
#braintumourawarenessmonth
, at 11:10 this morning Billy the Brave finally found his peace. He should never have had to fight this battle, but fight he did, and so valiantly right up until his very last breath.
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My little boy has a death certificate. That isn’t right, is it?
The lady at the bank ended up in tears on the phone and she asked if it would be OK to send some flowers. It was nice to talk to somebody that cares, but it makes it so hard to do these things.
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He’s really gone.
How has this happened? How on earth did I hold him as he died? How did I stand there and watch as they took him away? How did I visit the funeral home and kiss his face as he lay so cold in his coffin?
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just like they said it would.
Billy the Brave, you were oh so incredibly brave. You fought DIPG like a champ.
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Today, I don’t know how I will draw the curtains and get out of bed. It’s all too much. 💔
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That sinking feeling like no other: that we were here so soon. Five months. That’s all you got. And those five months were so hard for you. There was no mercy.
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Dearest Billy,
I’m lying awake trying to make sense of it all, but I don’t know why I do this there is no sense to be had. I’m waiting for the sun to come up and the birds to sing because the nights are too long.
My son died. Billy, you DIED.
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I cancelled your library card, and I just got off the phone with Natwest to close your little savings account. You didn’t have much more than one hundred pounds in there, but it was another one of those jobs I had to do. They send a number, and I scan over your death certificate
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I am thankful we refused we see those scans. Knowledge is sometimes not power but a self fulfilling prophecy. Not knowing how bad they were kept us all positive, kept you around longer. You wanted to live more than anything, but it all got too much in the end,
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You fought one of the worst and most aggressive cancers and for a time you were absolutely stronger than that awful DIPG monster. The worst, most unbeatable mutations met their match in you.
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I had to use the government “Tells Us Once” website, with the number you were assigned when you died, to cancel your passport and blue disability badge. You exist in so many numbers now. One reference number after another.
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We refused to see the last MRI scans in February. They told us this week that it was remarkable how well you were for so long considering the “burden of your disease.”
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Dearest Billy,
It’s been 6 weeks since you left. The clock in the living room stopped on the day of your funeral at a quarter to three. Neither of us have the heart to change the batteries, although on a week day I’m always in a constant panic thinking it’s school pick up time.
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Dearest Billy,
I can’t believe it’s all over. Your life, your journey, your fight with that unspeakable cancer.
The last two days have been a whirlwind of bitter sweet moments and the shocking revelation that you are now really, fully gone.
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We were so excited for every single day of your future.
Daddy’s out there rearranging the back garden for the fourth time today. He has to keep busy. We both do.
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Dearest, darling Billy, why aren’t you in your room? Your bed is made but you haven’t slept in it. Everything is in its place, your teddies, your toys, your music and your stories.
Why aren’t you in your room?
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Your ‘Billy’ file in the cabinet is full of consultant letters, hospital appointments, funeral arrangements and invoices... and your death certificate.
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These wretched things sit right there next to your Red Book, the one you got from the hospital when you were born, to keep track of your height and weight. You know we should still be using it to track how tall you’re going to be when you get older.
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This morning we went back to Sainsbury’s as I keep forgetting to do an online shop. You used to enjoy going there to choose snacks and have a wander around in your buggy. They’ve pretty much finished doing all that work there now.
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I can’t stop panicking. His bedroom haunts me. His shelf is full of Tonies that he’ll never listen to again, his drum kit will never make another sound, his toys... So many toys. I don’t want to touch anything in case he touched it last.
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I miss your clothes in the laundry basket, in the washing machine and the tumble dryer… I miss finding your toys under sofa cushions, washing up your Ghostbusters mug and picking up your trainers in the hallway.
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I hated putting that into words.
I hate all of it.
I just miss you so much Billy. I just miss you so much. 💔
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Dearest Billy,
I close the curtains in your bedroom. I tell you I love you and goodnight, but it’s another day you haven’t seen.
Four months ago today.
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“We loved with a love that was more than love…” ❤️
The grief has shifted somehow. Less shock? A deeper despair. Darker in a new way. Somebody said that perhaps with each day I would feel at least 1% better but it kind of feels like the opposite is happening.
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Billy’s school report. ❤️
I wanted to share this and shout from the rooftops how proud I am of my little boy for everything he achieved, because there is so much forevermore that I will not be able to share.
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Dearest Billy,
It’s your birthday today! You’re finally and officially five.
You’re up early, and you can’t sleep because you’re so excited.
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Dearest Billy,
I would usually be up late the night before your birthday wrapping up presents, blowing up balloons and hanging birthday banners, but tonight I don’t really know what to do with myself.
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Dearest Billy,
Daddy and I went out last night for the first time, for Vix’s 40th birthday party. I found myself talking to a stranger at the bar. He asked me how many children I have. It’s the first time I’ve been asked that question since you died.
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Dearest Billy,
It’s 9th July. It’s been one hundred days since you died. And exactly one whole year since these photos were taken.
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Things, people—they always go away, sooner or later. You can’t hold them, any more than you can hold moonlight. But if they’ve touched you, if they’re inside you, then they’re still yours. The only things you ever really have are the ones you hold inside your heart. B Coville
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Dearest Billy,
We were in the airport choosing sweets for the flight. Grandpa Kimbo and Granny Roro booked this holiday for the six of us last summer. You had a ticket to be here. Flights were booked in your name.
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Dearest Billy,
I woke up last night and thought I saw you standing by my bed again. This time I wasn’t scared but you kept changing shape. First you were in your grey hoodie, then you were wearing those old blue and white striped pyjamas.
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Dearest Billy,
It’s my birthday tomorrow.
This photo of us was taken on my birthday last year, and little did we know at the time it would be the last birthday you’d be here for. If somebody had told me that back then…
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Dearest Billy,
Your peg is waiting for you in the school cloakroom. Your P.E kit is hung up there, wondering when you’ll be coming back to play football in the playground or games in the hall. It’s been nearly seven months since you hung up this bag for the very last time.
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Dearest Billy,
We had to leave you today. It was so hard to walk out of that room without you.
Maddie came to say ‘hello’ too. She left the red Power Ranger she bought you for Christmas from the local charity shop in your coffin and the dog teddy she got you from Bocketts Farm
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Dearest Billy,
They tell me it’s International Bereaved Mother’s Day today. I’d never heard of this day before, but now it seems I’ve earned my stripes and I find myself part of the worst club ever.
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Dearest Billy,
I wanted to let you know how Grandpa is. I know you were worried about him. You knew for a while that he had a ‘boo-boo’ a bit like yours, but in his kidneys. It troubled you.
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It’s Billy the Brave’s mum here. I am not sure if you remember, but my little boy recently battled an incurable brain tumour, being diagnosed in November last year. He passed away on Easter Sunday after a truly valiant battle, which was an absolute tunnel of hell for him,
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I will love you as long as the sun burns in the sky
As long as the moon shines its light into the black night
Until the raging blue oceans become calm and run dry.
I will love you until the end of time.
~ Christy Ann Martine
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Dearest Billy,
We’re home. I broke down in tears unpacking the suitcases. The small pleasure that coming home used to bring is now suffocated by the reality that you’re still not here when we walk through the front door. 🧵
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His words at the end of his 3rd birthday, 15th April 2022. I wish too, that it never had to end. We love you, Billy ❤️🌻
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“Alone, as I sit and watch the trees, won’t you tell me if I scream would they bend down and listen to me?”
This time a week ago… Seven whole days. What we went through… What Billy went through 💔
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Maddie is doing OK. She keeps his photo in a frame next to her in the room she plays and watches TV in. She doesn’t want to talk about it, but we remind her we are here when she does. We talk about Billy all the time.
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I could only be grateful when I realised that I would rather have known you for a moment than never at all. I would rather endure this inexplicable pain of outliving you than to have never seen your face, spoken your name.
I would rather be yours, you be mine regardless.
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Getting on with all the firsts. Sitting opposite an empty chair on a table of four is hard. Wish you were here, Billy ❤️
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I can’t see colour any more. I hear the birds singing and I see the sun coming up and there’s finally blossom in the trees but it means nothing to me now.
The world is grey and sad without you in it. 💔
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“I see you in my dreams
And I wonder if you’re looking down at me and smiling
I want to know if it’s true
When he looks at me, won’t you tell me?
Does he realise he came down here and took you too soon?”
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Dearest Billy,
Tonight is one of those nights when I’ve come to bed early as I’m finding it hard. I can barely see the words I type as my tears fall.
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“To the living, I am gone,
To the sorrowful, I will never return,
To the angry, I was cheated,
But to the happy, I am at peace,
And to the faithful, I have never left.
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Dearest Billy,
“Everyone is afraid of dying… until you lose a child. Then, you become afraid of living.”
I saw this anonymous quote posted in a bereavement support group and it’s so true.
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Dearest Billy,
Your “head scans.” You didn’t understand them but you didn’t question them.
I don’t know how much radiotherapy helped but it gave us hope I suppose, and the promise of time -that in the end, never materalised.
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Where you used to be,
There is a hole in the world
Which I find myself
Constantly walking around in the daytime
And falling in at night.
I miss you like hell.
~ Edna St Vincent Millay
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One year ago he had all of his superheroes looking out for him… And exactly one year later, in a slightly different way, he has had the same.
Here’s to you, Billy the Brave. How we do love you.
Goodnight. Xxxx ❤️
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My son is dying. He probably won’t see his 5th birthday in April. I wish people would stop sending me the Daily Mail article about the boy who survived D.I.P.G thanks to Everolimus. I have addressed that article in my posts and It is driving me bonkers to keep hearing about it.
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Dearest Billy,
Here are photos of you on the same day each year, today, the 18th July 2023, 2022, 2021, 2020 and 2019… All the beautiful years of your life.
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“I’m not much brave, Mummy, because I sometimes cry.”
“Crying is being brave, too, Billy, and you are one of the bravest boys on the whole planet. I could not be more proud of you.”
And I am, and I always will be so proud to be his mummy. I count myself lucky. He chose me. ❤️
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@Schwarzenegger
I used to do kettlebells, the bike, yoga, pilates. Then my 4 year old boy got diagnosed with a terminal brain tumour in Nov. He died on Easter Sunday. It has been hell. How on earth can I get back to doing what I used to without feeling so completely selfish? Lost
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Dearest Billy
Every time I go into the bathroom I think of you. You spent your last weeks having an afternoon bath because the water soothed you and helped you feel weightless. An early bath suited you better because you wanted to be tucked up in bed by 5.30pm. You were so tired
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Dearest Billy,
I went up to London today and all the houses dotted along the train line and all the buildings in the city are still standing strong in the bleak grey rain, just like they always used to.
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Dearest Billy,
It was Maddie’s leaver’s assembly today. It was hard seeing your class file in to sit at the front to watch the show—all your wonderful friends, with one person missing—you.
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Dearest Billy,
It’s the end of term. School’s finished and there’s a stampede of smiles running out of the school gates, children hand in hand or on scooters and bikes. They’re off to the park to celebrate the summer holidays ahead. Not you, though, Billy. Why not you?
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Dearest Billy,
I miss The Tickle Test game. You were always so incredibly ticklish and you’d lose every single time. That’s why we played it, because it was so funny.
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Happy birthday, my love. I got my first ever tattoo for you. I had our heart tattooed on my wrist in the shape of a ‘B’ and when I press it, I feel you close, and when I send you a cuddle, you must send one back… OK? Daddy got one too.
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Waiting for the Northern Lights, playing Champagne Supernova and hoping it’s our Bill in heaven making all those bright lights.
@liamgallagher
@oasis
@NoelGallagher
#billythebrave
#fuckdipg
#dipg
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How are we supposed to get through the seconds, minutes and hours, let alone the days, weeks, months and years that will follow?
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Dearest Billy,
They tell me it’s National Bereaved Parents Day today. Apparently we are all supposed to light candles at 7pm. I guess it is to help us feel seen and heard and recognised.
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I told you to sleep, and that there was no need to fight anymore, to just rest my darling boy and it would all be OK.
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We talk about them, not because we’re stuck or because we haven’t moved on, but we talk about them because we are theirs, and they are ours, and no passage of time will ever change that.
Scribbles & Crumbs
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Dearest Billy,
We’ve been planning this new addition for a while and today we finally got to bring him home. Meet Bowser, after your favourite Mario character and nickname ‘Billy Bowser.’ It’s definitely the name you would have picked, and of course, he is another tribute to you
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I’ll be seeing you
In all the old familiar places
That this heart of mine embraces
All day through
I’ll find you in the morning sun
And when the night is new
I’ll be looking at the moon
But I’ll be seeing you
Billie Holiday
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Dearest Billy,
Yesterday, we unveiled your memorial bench at the school fair. Spider-Man, Iron Man and She-Hulk dropped by to do the honours, along with the Chair of the local council, a wonderful lady called Elizabeth Daly.
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Dearest Billy,
We went to the registry office this morning. You won’t remember it, but we took you there when you were a little baby to register your birth. I remember that day well—tucked up in your pram under a blanket.
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When are you coming back?
You’re not coming back to your room, are you? But it’s waiting for you.
I am waiting for you. I will always be waiting for you. Your loving Mummy. 💔💔💔💔💔💔💔💔💔💔💔💔
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Dearest Billy,
One year ago today – or thereabouts. A trip to Bockett’s Farm with playschool to celebrate the end of term and moving on to school after the holidays.
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Dearest Billy,
You can come home now.
Your bike is waiting for you in the garage. We can finally get those stabilisers off because you’ll be Billy again, and that tumour won’t be holding you back and knocking you off course.
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Happy 8th wedding anniversary to Mr T. 💗 As you all know, the past seven months have been absolutely and unspeakably horrific as we were told we would lose our precious little boy, and then had to watch in horror and care for him whilst it happened.
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Dearest Billy,
I was sent this video on the day of your funeral and I have not known when to post it. You’d absolutely love this message from Idris and I wish you’d have been able to see it before you died, but it wasn’t to be.
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Dearest Billy,
We carry you with us wherever we go. I wonder if you know this?
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The hospital abandoned us during the last hours of my son’s life. He fought for months to live, and then had to fight to die. We are traumatised with what happened to our son.
#dipg
Dearest Billy,
Hank isn’t very well today. I need to call the vets. I can’t bear it if he’s sick.
We have a lady coming to our house this morning to talk about you and how you died. She’s from Surrey Heartlands NHS - I have no idea who they are.
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He made the front page. Billy the Brave. Of course he did.
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“I don’t know how much more I can watch him go through.”
I do now.
(Thread)
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Dearest Billy,
“We are always going to be that family.”
I don’t want to believe this, although sometimes when I’m walking down the street, I wonder what the neighbours think when they wave at us, I wonder when people pass me in the street - do they know?
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The invisible bags of cement on my shoulders weigh so heavy today. 💔
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Dearest Billy,
Granny and Grandpa came over today and the three of us took Paddy on a long walk around the common. Remember how much you loved going there?
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@cjs84124
Oh that sounds interesting, thank you. I am so sorry you are in the same boat. It’s just not fair. It is not right. 💔
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My mom, she tells a lot of lies.
She never did before.
But from now until she dies,
She’ll tell a whole lot more.
Ask my mom how she is,
And because she can’t explain,
She will tell a little lie
Because she can’t describe the pain.
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Dearest Billy,
I found these videos today in a WhatsApp folder on my phone I’d never noticed before.
The folder contains photos of you and video footage I’d forgotten we’d ever captured, so much so that it feels new, as if we’d just filmed it.
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Dearest Billy,
I’m on a bus in the pitch black in the middle of nowhere but as it rattles along the rough, dusty old road back to the hotel, I had to write to tell you… THE ACTUAL TURBO MAN (aka Arnold Schwarzenegger) just tweeted me. About YOU! And a bit of advice for me, too
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There can be only one! And if you click on the photo you’ll see exactly what I mean. My beautiful boy 💛
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“Do you want a cuddle, Billy?” Shakes his head. “Do you want a kiss, Billy?” Shakes his head. Tough! 😂❤️
Memories. ❤️
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