Meet our Shivansh!

Happiness

We all want our children to be happy.  For a parent or caregiver, it is usually a top priority. 

"Well, Brett was a healthy and happy 8 year old until November 2019, when he started to have an intense headache which then made him sick some mornings, our GP blamed it on too much screen time and we were sent away. These episodes continued and Google kept telling me they were brain tumour symptoms ( but don’t be silly I thought, brain tumours happen to other people not us) ...right?"  (Mum, Jill)

"I got him to Specsavers the opticians for another eye test, where after checking his optic nerve and finding it swollen we were told to go straight to our local hospital.  They scanned him the next day and we were told it was a brain tumour.  I remember, it was like being in a dream as I asked if it could be treated and they replied “we hope so”...?"

Emergency Operation

"We were blue lighted to Alder Hey children's hospital that day who have been amazing. Brett had his 10 hour operation 3 days later to remove the pilocytic astrocytoma which they got 95% out. Since then he has has meningitis and has needed a shunt fitted as he’s been left with hydrocephalus, multiple operations for infected wound, Lumbar punctures and new shunts (5 so far)."

(Mum, Jill)

Scans and Scanxiety

"He has regular MRI scans to check for new tumour growth every 4 months and so far it’s stable.  It’s always at the back of my mind though and I’m constantly watching for shunt failure symptoms but we were lucky, we got a grade 1 which lots of parents don’t get so I try and stay positive."

(Mum, Jill)

Living with a brain tumour diagnosis is life changing. Processing this information, coping with the reality and even accepting the changes a child's diagnosis brings can take a very long time.  The DLF are here to support children and their families living with similar situations.  If friendship is all that's needed, we are happy to do just that.  For families who request additional support, we are here to offer emotional, spiritual and practical helps that fits around you. 

Grateful

"I’m thankful for all the help & support we’ve been given.

Brain tumours definitely need more media attention so that more people can become aware and the NHS and the community teams can detect the brain tumour symptoms earlier in children more and more."

(Mum, Jill)

We can help guide you through the Special Educational Needs & Disabilities adjustments that will emerge when your child returns to school including getting their EHCP, offering an independent second opinion, contacting your child's school and offering friendship with other parents so you never feel alone.  Please reach out or make a referral if you know someone who might need our help.