3rd March 2015 – 26th March 2022

On 21st June 2021, I picked Ivy (then 6) and her big sister Ellsie (then 8) up from school after spending the week 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 occurred while she was away to cause this, so I 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; in fact, Ivy had begun tripping over more frequently and bumping into walls on occasion.

On the 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 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 Intrinsic 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, and she responded well to the radiotherapy; in fact, 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.