In August 2017, my niece Isla Tansey woke up and was unable to walk. After many traumatic and invasive treatments, surgery and radiotherapy, she was diagnosed as having glioblastoma multiforme (GBM) with diffuse intrinsic pontine glioma (DIPG) mutation – this meant there was no further treatment options for her, and the tumour in her spine had left her paralysed from the chest down.
Isla sadly died in July of last year, but not before turning a horrible and almost unbearable turn of events into something with a beauty only she could have inspired. Though there were a thousand little precious moments the whole family enjoyed with her during this sad time, the biggest outward manifestation of our attitude to the whole affair was the #Islastones movement, which began as something Isla could enjoy from her bed when she was unable go out without great effort.
The idea of #Islastones was simple. Paint a rock or stone, make it beautiful and hide it somewhere to be found later - but not before you’d photographed it and shared it with Isla via Facebook. This ‘Photo-Post-Rehide’ chain allowed Isla to come into contact with hundreds, if not thousands of people even though it was a struggle to get her out of the house. It also saw stones decorated with her name travel all over the globe. She loved looking at them and seeing where they went - but, most of all, I think she loved that her name was on every single one.
I came to see #Islastones as a perfect metaphor for how Isla dealt with not being able to walk, and her gradual deterioration of health: turning something hard and ugly into something that couldn’t fail to make you smile. That was her gift to us all.
As a family, and with the breathtaking efforts of an army of friends, we have continued to raise money in Isla’s name since her passing - teaming up with the DIPG-focused campaign Abbie’s Army, which looks to shine a light on the awful prognosis for children diagnosed with that form of tumour, and fund research into the condition.
Our long-term aim is to fund an ‘Isla Smiler’ DIPG researcher to study the condition for two years, hopefully working towards better outcomes for those diagnosed in the future. Day-to-day, however, we hope to raise awareness of DIPG and the toll it takes.
Isla always thought it was funny when her Uncles turned up in cycling kit to see her - she especially enjoyed me turning up on Easter Sunday with a backpack full of Easter Eggs - and I think that she would love that we now have kit with her name on it.
Having lost my mother to cancer little more than six months before Isla’s passing I know that cycling helped me to deal with a difficult time, so it’s good that now I can do something with it in her name.
This is Isla’s legacy and we hope you are proud to be part of it, please donate what you can.
About DIPG: DIPG has a 0% survival rate, only 10% of children survive 2 years following their diagnosis and less than 1% survive for 5 years. The average survival is 9 months from diagnosis, this needs to change and with your help maybe we can make a difference for other children in the future. We have teamed up with Abbie’s Army an official charity to help fund a dedicated ‘Isla Smiler DIPG Trials Researcher’.
We need to raise £73,000 to cover this position for 2 years & with your help we can do it!
About DIPG Research: Abbie’s Army has been supporting Professor Chris Jones’ laboratory for some time at the Institute of Cancer Research. They have been funding, processing and analysing DIPG samples from the UK BIOMEDE trial for DIPG- so far there have been 25 patients processed. However, we now need to do MORE to progress this research.
Professor Jones’ laboratory is becoming the UK biology reference centre for more DIPG trials, there is now a need to have a dedicated DIPG Trials Scientific Officer in his laboratory to expand the ICR’s capacity and continue the work not only on the BIOMEDE trial, but to include children’s samples from other trials in the UK and Europe.
Abbie’s Army, working alongside #Islastones want to fund this new researcher who will process the trial samples and attempt to establish both 2D and 3D cell cultures in the laboratory. They will ensure the models undergo molecular profiling and carry out bespoke drug screening needed to inform the treating clinicians of the children enrolled.
By supporting this research you will be playing a major part in efforts to develop tailored treatments for children with DIPG, in the fastest possible time, with maximum benefit and minimum side-effects.
A targeted treatment is also a ‘kinder’ treatment.
“Our understanding of DIPG is rapidly improving thanks to collaborations between scientists, clinicians, funding bodies and families around the world who are determined to defeat these diseases. Thanks to charities such as Abbie’s Army, I truly believe that we are on the cusp of real improvements in the survival of children with DIPG.” – Professor Chris Jones, ICR
In March we started to decorate stones as an activity for Isla to enjoy with her friends. A friend brought some Sharpies and some stones around and we each decorated one and asked some friends to hide them nearby. We asked them to post a photo for Isla so she could see where her stones had gone. We set up the #islastones facebook page so we could see the stones. Within weeks the group had grown beyond our expectations.
Isla absolutely loved seeing everyones smiles when they posted photos of what stones they had found. During this time Isla’s pain became more controlled and she was bravely hoisted out of bed into a chair. This new found freedom allowed Isla and her family to leave the house and make some even more special memories and allowed her to join in with #Islastones, which brought her lots of joy. Every day Isla received beautiful gifts and stones from people who had joined the group and taken Isla into their hearts. Isla was interviewed on two occasions by the BBC, her dream was to become famous and with over 40,000 people at this point in her group she certainly felt it. Her film can be viewed by clicking this link:
Since launching #islastones stones have been hidden all around the world, including the Taj Mahal; New Zealand, North Pole, Mexico and a very special wooden stone at the antarctic.