Our Warriors Who Inspire Us

Thirty three months ago we took Eve to hospital simply because of a sore hand. She was just 5 weeks into Kindy and she had the whole world ahead of her. A little girl who had been our perfect little miracle until four letters abruptly entered our lives. DIPG. The four letters that would forever mark our lives with life as we once knew it and the life post diagnosis.

33 months post diagnosis and I can vividly recall the look in the doctors eyes as he took us into “the room”, the look on the nurses faces as they came in to sit with Eve when we had to go for the talk.

Or the next day when we had 5 different doctors walk out of the room after again speaking to us and seeing the doctor outside our room crying in the hallway. The moment my heart sank.

Or I can tell you the moment we had to tell my mum that her first and only grandchild had a tumour in her brain. The fear in her eyes. The world stopped for me that day but I could see the world continuing around me.

We were told to go home and make memories. How do you cram a lifetime of making memories with your only child into a few months? Picture living 33 months as though they are your last days. Every day matters and every day becomes a new adventure all while feeling your heart has been ripped out of your chest.

A little girl who had to grow up so fast in the space of 33 months. A little girl who learnt what words like terminal, palliative, federal funding, dexmethasone all mean.

Eve was our miracle baby and she continues to be our miracle. Diagnosed at 5.5 years old and here we are today not long ago celebrating her 8th birthday.

The trial that Eve is on is funded because of grieving parents allowing researchers to make these breakthroughs. Now imagine how much more breakthroughs could happen if we continue raising awareness and allowing these breakthroughs to happen?

I asked my husband what my purpose was and he said “to make Eve a unicorn”. That is my wish now. To help turn my miracle girl into a unicorn so that the letters said to all those months ago no longer mean “go home and make memories”.

Team ForEVEr