Tomorrow it will be three years since the worst day of my life.A day I didn’t see coming. A day I don’t believe happened. Right now we are hours off the worst hours of my life. I don’t want to mark it but I don’t want to not mark it. Tomorrow is Larsen Day; we will make it count.
Jesse asked to go to Larsen’s favourite cafe while we were in Nottingham. He ordered Larsen’s favourite - pancakes with Nutella and banana. The cafe have a picture of Larsen on a shelf. Jesse got upset. Then I did. I’m glad we went, Jesse must have felt close to him.
On national
#DayOfReflection
I’ll share your beautiful face and tell the world of your beautiful soul. My baby, my everything, you deserved so much more ❤️
Picture taken a year to the day before Larsen died - almost 4 years ago now - we had absolutely no idea what was coming. We loved these woods. 18 month old Jesse walked about 2 miles bribed with a flask of hot chocolate. Wish I was still this mum 💔
He’s so perfect and everything else is so awful. The world is upside down and backwards and inside out because Larsen should be here and nothing else that’s going on in the world right now should be real. I hate back to school week.
Larsen’s rose bloomed today.
I’m a parent missing their child every single day. I want people to know it every single day. I want people to know him every single day. But it bloomed today
#BereavedParentsDay
Jesse’s struggling and I don’t know how to manage it. It’s hard when you think you’re doing the best parenting you can, protecting him, showing hope. Grief is different for him as he grows. Maybe he feels ‘the day’ approaching. He misses his brother. It’s hard.
#siblingloss
After 10 weeks in hospital, 12 hour brain surgery, losing your eye, meningitis, hydrocephalus and only being home for a week, you were so ready for school. It was made for you. The proudest day of my whole life. And I’m just heartbroken.
#CCAM
#ChildhoodCancerAwarenessMonth
On the
#RCNStrike
this isn’t just about money. This is about well qualified staff and safe staffing levels on wards this is about the whole role of the nurse. Nurses want to be able to do everything on my list ⬇️ for the children who don’t even know they need them yet.
It’s Larsen’s birthday tomorrow. Feeling much sadder today than I did yesterday. It’s impossible to know when it’s going to hit you, but it always does. Maya is joining me for a breakfast ice cream at Larsen’s favourite place in St David’s. We look a bit crazy but we don’t care.
I had to be really brave this week. I went back to
@nottmchildrens
to visit another child. It was harder than I anticipated. But since I managed to get in, I made myself go to Larsen’s Robin’s Heroes board. ❤️❤️❤️ Proud doesn’t come close. Miss him so much ❤️❤️❤️
We used to love going shopping. Larsen was helpful and Jesse was a terror. It was a weekly outing. Once he started school, we’d go on a Friday just for a snack in the cafe. Things you take for granted ❤️🩹👩👦👦
It’s
#ChildhoodCancerAwarenessMonth
#ccam
and if you learn one thing,let it be that children face the same treatment as adults.Most children Larsen’s age face weeks of daily general anaesthetic bc radiotherapy is scary Here’s Larsen age 5 doing it awake so he could go to school💔
I went back to work full time for 18
Months. I stopped 2 weeks ago. And honestly, it feels like I’ve just realised I’ve been holding my breath all that time. I feel like I can cry again. Like I can think about Larsen again. Like I can breathe again.
#grief
I think about all the times I told Larsen to do what the Dr says, be submissive, say yes, accept the treatment that makes you feel so poorly, be strong. And I HATE that treatment made me into that parent, lose the softness, the empathy - live in fight mode - he deserved more.
Larsen would have been so good for our world and our planet. He was obsessed with big cats from age 3 and he wanted to rescue and conserve them when he grew up. By age 5, he loved all animals, David Attenborough and especially sharks 🦈
#EarthDay
feels less hopeful without him 💔
The end of March marks the end of
#BrainTumourAwarenessMonth
#btam
If nothing else, know this: brain tumours are indiscriminate, fit and healthy, old or young. Brain tumours are the biggest cancer killer of children.
This must change.
#forLarsen
Jesse at bedtime: I wish the word cancer didn’t exist. I wish I had big clippers and I would snip cancer up into bits and throw it at the sun and it would burn. I wish kids got normal poorly not cancer poorly.
Received the saddest news that we have lost someone special to us.Sadder still that I’ve missed my chance to tell her how special she was.And I should have known better - should have known how it can end without warning- should have known how final the end is. We love you, Val ❤️
I’ve had messages from friends and from strangers expressing shock and sadness at Larsen’s story featured
@braintumourrsch
today.
There is no child friendly treatment, for a
#braintumour
- no calpol chemo. I hope his story shocks more people into action. He was 5 years old. 🦁
Larsen’s Story
@braintumourrsch
have published Larsen’s Story to raise awareness of this devastating disease and the impact it has on children.
There is no child friendly treatment for children with a brain tumour.
#braintumour
#braintumourawareness
Looks idyllic. Is idyllic. Beautiful evening. But you can’t see the conversation in a picture. What we share online is often so far from the reality we are experiencing in
#grief
.
“Mummy, I wish no one had to die ever.”
@ginny_walker
Happy birthday Ben ❤️
Larsen loved big cats, orcas and Komodo dragons, he loved scooting and eating pancakes. He was kind and gentle and loved a cuddle.
#mychildlived
It’s
#BereavedParentsDay
and we spent most of it here walking the coastal path. It looks beautiful. But for me, life as a bereaved parent is like your own Truman Show, wondering, ‘if I just row over to that horizon, can I break out and find my real life?’
#keeptheirmemoryalive
My
#dailyjoy
(feels like there’s not been much this week) is being able to take Jesse down to ‘Larsen’s beach’ today in beautiful sunshine - felt like I had both of my babies there ❤️ ps. There was chocolate ice cream involved 🍦
@criminographer
On the last Wednesday of each month (this Wednesday!)
@MaggiesCentres
in Nottingham holds a group for parents bereaved of a child who died of cancer.
Please share the info with people you know in this awful position and help other local parents find much needed support 💛
@criminographer
It’s such a cruel trick for the brain to play and I certainly know it. But he was here and he was so beautiful and we can all reassure you that he was because you have shared him with us ❤️
"I’ve been fighting against empire all my life I’ve been fighting against slavery and colonialism all my life"
THROWBACK:
@BZephaniah
explains why he could never accept the word 'Empire' being associated with his name
#PlatinumJubilee
#QueensHonours
#QueenElizabeth
Woke up to more than 2000 likes on this picture I shared of Larsen having cream tea - mad. It was his out of hospital and starting school treat. We went to the Heights of Abraham in Matlock and had the best day, just the two of us. I was so proud of him. Still am, my baby ❤️❤️❤️
Larsen loved lifeboats and we always visited lifeboat stations on holiday. I love this picture of him at the RNLI museum in Bamburgh. Today we took Jesse into Tenby and I was sad but I got the matching picture and it’s perfect.
#Brothersforever
❤️
"I felt relieved having the grant to buy a coat. It’s been so cold and I’m tired from chemo and have to use my wheelchair. Without moving it gets freezing. Now I can enjoy being outside again."
Our Winter Grant has helped 500 families, like Shell, with the rising cost of living.
Tell me how it is helpful to say that childhood cancer is rare. Because it reassures parents whose children do not have cancer? Which feels like a somewhat pointless purpose. How else is it helpful? Does it help early diagnosis? Does it help fund research? Such a bizarre claim.
Jesse had chocolate brownie today. And we laughed about how he was a monster of a little brother and Larsen was the best big brother ever.
#eatcakeforLarsen
Childhood cancer, AND the treatment, every single day of it, every conversation, every needle, every phone call, every letter through the post. Every scan. Every cry. From day one and then forever after. It is hell. It is horror. It is not for children. Rare means nothing.
#CCAM
I need to mention the nurses who did everything they could for Larsen three years ago.
@PCCOTatNUH
@PCCUatNCH
who go to work to save, look after and make comfortable, dying children on a daily basis.
Nursing is so much more than you will ever know, until you need it ❤️
@EmilyTammam
N has great taste ❤️ Your examples and explanations of what paediatric palliative care can look like warm my heart and I am sure will go a long way to improving what it looks like for other children. You certainly inspire me for the work we do in our charity. Xxx
@alisoncaplan
It really did. I had to push myself to go there but it meant something that Jesse asked to do it. And it surprised me that he was emotional - it’s not usually how he is. But I think it’s good to keep putting yourself if places where you feel connected, however hard or sad.
@DrTedAdams
@GlovRebecca
Ted and Rebecca, I am so so sorry to hear this and just heartbroken for you all. I wish more than anything that no child or parent had to face what you and T have been through. I always love to see the photos you shared, such a beautiful boy. Holding you with love this evening ❤️
@criminographer
You have to find your new way through together as a family ❤️ I am so glad you have made some changes that have helped to ease just a little of the pain. We’ve done the same and put a little tree in Jesse’s room - and 3 years in, that is how he knows our Xmas now and it’s OK ❤️
@carolinenewson
I can only imagine how impossible the thought of going back into midwifery must have been. You have made a huge and brave decision, Caroline. Thinking of you and sending you lots of love as you begin something new. ❤️
Most days are pretty unbearable but not having you here on your birthday tops them all. It’s all so wrong. And we miss you more than words can say. The light of my life and my soul mate ❤️
🎂 Please eat cake for Larsen today 🎂
I was so tired in June, I could barely scroll through Twitter let alone proactively do anything for Larsen’s Pride. There are so many amazing parents on here raising awareness and funds and doing incredible things in their child’s memory 24:7, but the burnout is real, right? 😣
@criminographer
It’s so so sad and so hard for you and for F💔. We read The Invisible String early on and we’ve not read it for ages now, but if J misses L or we have moments like these, he will do a little tug on his invisible string and say ‘I love you ga ga’ (his name for Larsen) ❤️
Today I did an interview with
@ITVCentral
which should air tomorrow in support of
#braintumourpetition
@braintumourrsch
... Please keep an eye out and tweet and retweet in support of this tomorrow when the petition will be handed to MPs and Parliament ❤️
#ForLarsen
❤️
Jesse says ‘Thank you for giving me (
@CLIC_Sargent
) lots of money!’
Here goes the first slide and you will see why this morning it is ME who needs to feel the support... 1 slide down (and a Cadbury’s chocolate finger)
#slideathon
#twopointsixchallenge
Jesse sent some
@CLIC_Sargent
keyrings to his best friends for
#WorldCancerDay
and it looks like they love them!
You can support young people and families facing cancer by sponsoring our 100km trek for
@CLIC_Sargent
via the link in my bio!!
@GM_CLICSargent
I’ve just read this most poignant article. In someone else’s heartbreaking words and perspective, this is why we started
@Larsens_Pride
‘ I try to imagine everything that can be gained from the lived experiences of those who face it.’
It’s official: MA Distinction🥂 I had two objectives. First, keep my brain occupied in every spare second to help me deal with the awful reality of losing Larsen. Second, be better, know more and achieve things I would want for him.
#ForLarsen
♥️🦁
It’s
#ChildhoodCancerAwarenessMonth
#CCAM
and brain tumours kill more children than any other cancer. This is down to underfunding of research, misdiagnosis and barbaric treatment options. Facts below take from
@braintumourrsch
please follow and support their fight to
#LevelUp
💛
I’ve been haunted by the idea of sending Jesse to school without Larsen. Thankfully, moving house meant delaying his start for the first half term. Today I felt strong enough to buy his uniform and let him try it on. Aren’t my babies similar?
#ccam
#ChildhoodCancerAwarenessMonth
We can’t make it to
@sleafordmods
in Nottingham (27/11)
@nottinghamarena
- 2 tickets selling for face value £25 each - don’t want to list on rip off ticketmaster site !!
‘To the firefighters thank you for putting the fire out from Jesse’ (age 5) who was very sad to see Newgale on fire yesterday but in awe of the amazing fire service
@mawwfire
Hey
@CLIC_Sargent
what do you think... his target was £50 and he’s now over £700 🥳
Jesse’s
#twopointsixchallenge
takes place on Sunday so there is still plenty of time to sponsor him £2.60 if you can!
Read all about it here: