Esther was 5 years old when she was diagnosed with DIPG/DMG, the deadliest form of paediatric brain cancer, in May 2022. Esther was 6 years old when she died on February 12, 2023.
“I’ll meet you in Heaven” were some of Esther’s last words to her family.
Esther’s mum Julie said “When she first told us she would meet us in Heaven…we were still in denial … and we told her we would go to Heaven first because we’re older…she would go to Heaven when she was 106 – not just 6! But she knew, somehow she knew and we didn’t talk with her about this when we had the chance. This is one of our biggest regrets”
Esther was the first patient in the world to be treated for DIPG using ‘sonodynamic therapy’ or SDT, a brave and true pioneer. Simply put the brain tumour is like an onion and the SDT is peeling off the layers, and as the layers are dissolving doctors can see what has been underneath the outer shell and inside the tumour.
Esther’s doctors had not seen the interior of a DIPG/DMG tumour like this before (only under a microscope), so seeing the inside intact was a learning experience for them too. Usually, by the time a tumour is large enough to be causing symptoms which leads to a diagnosis, the tumour appears solid and either spherical or cylindrical in shape. As the outer layers are disappearing, the tumour is losing that distinctive solid form, and is going from resembling an elongated plum to a small cluster of grapes. A plum is quite easy to measure – there is an obvious circumference, diameter, and radius. A cluster of grapes, while possible to measure, is more challenging to determine where the actual dimensions begin and end.
Whilst Esther was having the usual cancer treatment for DIPG, a standard six weeks of radiation the family also looked into clinical trial options that Esther may be eligible for. They also dug deep into natural remedies and wholesome nutrition, avoiding all junk food. They started mapping out the potential treatments, as well as guidelines and deadlines for different trials or possibilities. The more they learnt the more we realised just how much they didn’t know. It was a minefield.
Esther’s mum Julie said “The standard care of treatment for this tumour is somewhat based on the assumption that there are no survivors – so the medical world rarely considers long-term effects or harm when it comes to kids like Esther”
Since Esther’s diagnosis the family say they are different as if This was the point of no return. Their family profile changed and everyone had to adapt and pick up extra responsibilities just to keep going day to day. Even 10-month old baby Josiah at the time was forced to spend many more hours strapped into a car seat and going from one appointment to another, day after day.
After Esther’s passing Julie said “We are not the same, that’s for sure. We are injured, broken, and scarred, that’s for sure. We try to keep the pieces of our broken hearts bound up tight enough to make it through one day at a time … or an hour at a time … or maybe just the next five minutes …”
I'll always be Joss' Mum
£10
A gift of just £10 could help give support to a family who are struggling with a new diagnosis
£25
A gift of £25 per month could pay for a days pioneering research into rare brain tumours
DIPG brain tumours are currently an incurable and devastating cancer.
DIPG robs a child of their hearing, sight, movement, the ability to swallow and eventually their breathing.
It’s only with your help that research into this devastating cancer is possible.
Joss Searchlight are funding vital research into the most life-threatening brain tumours. Please be part of our journey.
FAMILY SUPPORT
Along with providing financial grants to help families struggling with the expenses of having a child with cancer we also provide life changing support.
Support Workers who advise, visit and support families with compassion are an essential part of Joss Searchlight.
Family support is in our DNA, as the founding trustees know what an important part compassionate support played in helping them during their son’s illness and after his sad death.
We can’t fund research and we can’t support families without you.
FINDING A CURE
At Joss Searchlight we totally depend on donations. Donations enable us to fund vital brain tumour research, to find a cure for some of the rarest brain tumours, to campaign for better treatments and support families on their cancer journey when they need it most.
Research organisations need funding stability, they need to know that they have enough money coming in every month to allow them to do their incredibly important work. We need to pledge a certain amount of funding every year to make sure they’re able to do everything they can to find cures and treatment programmes for some of the hardest-to-treat brain tumours.
Children should enjoy their childhood
Not spend their lives fighting cancer
Help us find a cure for rare brain tumours. Give your support today
