Our Children

Meet some of our amazing children...

Edward

Elsie

"February 15th - International Childhood Cancer Day. If I’m honest I hate that I know these dates and I hate that I’m a part of them. I use them to raise awareness of Childhood Cancer even though I wish I didn’t have to and I wish I was oblivious to it all. But I’m not oblivious to it all, truth is it will be a part of me and a part of my family forever no matter what my opinion is because our beautiful boy Edward was diagnosed with a Medulloblastoma brain tumour in November 2018 at just 3 years old!"

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"He was being sick lots so we took him to hospital as the amount of sickness wasn't normal. They said he had food poisoning. 5 days stay in hospital Jake wasn't getting no better and his eyes stopped reacting to light."

Nally

Shivansh

Jayden

"The challenge was actually believing in the consultants and nurses when they told us things are going to be okay. It took us a while to accept that actually. We are great full to all of them."


"One of the hardest changes was that we were in and out of hospital all the time, (especially in the 1st year of diagnosis) and everything was about Nally.  How he was feeling and his mood and what he wanted."

" ...what about the rest of us, I thought?  When you are in hospital, the staff always around, the support in the hospital is live and direct and it's easier to get the support.  Once you're discharged, it feels like that help is no longer there in front of you."


"One major challenge we had, was how to tell Nally that he has been diagnosed with Leukaemia."


(Shay - DLF Mum, March 2023)

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"Elliott was diagnosed with a brain tumour in 2020 with a Dnet in the thalamus.  He diagnosis was incidental whilst the Drs were looking for complications of birth hypoxia." 


"In addition to all of this, Elliott is also diagnosed with ASD, ADHD, dyspraxia, hypermobility & a history of absence seizures!"


"Over the lockdown, it felt like his school had abandoned him and given up trying.  He had no school education because they didn't know what to do with him, he didn't have any mental health referral and it just feels like we've been dropped from a height" 


(DLF Mum Rachel, 2021)

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"Eloise was diagnosed with an Embryonal tumour with Multi-layered Rosettes (ETMR) in 2020, 5months after her first birthday. 


"How do we feel? Like we're constantly ‘winging it’ through the diagnosis, brain biopsies, surgeries, blood transfusions, high dose intensive chemo, MRI scans, Proton B therapy, blood tests, home and hospital trips and numerous hospital stays.  We are grateful that Eloise had her first dose of intrathecal topotecan and is ok and are grateful that she had it in the UK - possibly the first child in the UK.  We are know its going to be a long, slow, challenging few months/year ahead.  We are continually aware that cancer sucks… paediatric cancer sucks. 


"Brain tumours are beyond awful and there is no clear ‘end’.  Treatments lead to long term effects that the children, if they survive, have to live with for years to come. THERE NEEDS TO BE BETTER TREATMENTS."


(Melissa & Pete)

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