On 21st June 2021 I picked Ivy (then 6) and her big sister Ellsie (then
up from school after her spending the week with at their dad’s. As soon as I saw Ivy I noticed that her left eye was inverted, on questioning I found that nothing significant had occured while she was away to cause this so made the assumption that she needed glasses. I took her to the optometrist the following day and glasses were prescribed.
After Ivy’s glasses arrived, they made no difference at all, infact Ivy had begun tripping over more frequently and bumping into walls on occasion.
On 18th July, Ivy was lethargic and began vomiting. She was taken to the Gold Coast University Hospital ED where they did a CT scan. The scan results showed that Ivy had a brain tumour – something that we least expected to hear!
That’s same afternoon Ivy was rushed to Queensland children’s Hospital for emergency surgery to put in a drain to relieve the pressure around her brain from hydrocephalus and 2 days later on 20th July we got the results from Ivy’s MRI- we were told that she had a Diffuse Intrisic Pontine Glioma- otherwise known as DIPG. We were informed that most children succumb to this disease between 9-12months and that we should start making lifelong memories with Ivy.
Ivy underwent 30 radiation sessions over 6 weeks, she responded well to the radiotherapy, infact at her next MRI in October it showed that the tumour had shrunk by almost 50%.
By mid December, Ivy’s health had begun to decline and she was beginning to have difficulty moving her right arm and leg, on Xmas day I noticed that Ivy was having trouble swallowing by January Ivy had no movement in her right hand side at all and had to mobilise using a 4 prong walking stick and then in the following week, by wheelchair. In February Ivy had another MRI which showed that the tumour had increased in size and was now larger than at diagnosis, Ivy’s speech was impacted and in the weeks following she began to experience severe lumbar pain caused by the tumour spreading down her spine.
When Ivy’s pain became too severe to manage at home, we transferred to Hummingbird House- Queensland’s only children’s hospice where we remained until Ivy passed away on March 26th, 23 days after her 7th birthday, 8 months and 5 days after we found out that she had this terrible disease.
DIPG/DMG has a 0% chance of survival and is the worst form of any cancer, particularly childhood cancer. Unfortunately because this is such a rare cancer, there still isn’t enough research into finding better treatment that will give children and families more time together with a fighting chance of survival and hopefully in the future a cure.
Please share Ivy’s story and #memoriesinmay to raise more awareness and to get to word out.
RUN DIPG is a charity dedicated to improving outcomes for patients and their families impacted by the deadliest form of childhood cancer – the brainstem cancer, diffuse intrinsic pontine glioma (DIPG) also known as diffuse midline glioma (DMG). It is our mission to raise awareness of this disease, and to generate funding to support the advancement of DIPG/DMG research.
With no treatment options currently available, except palliative radiotherapy, we advocate for the timely and innovative development of anti-DIPG/DMG therapies, and, improvement to current standard-of-care management.