Our journey started on the 25th of July 2019, when our daughter Ka’ili complained of a sore tummy. As a normal mum's reaction, I predicted she had had too much to eat and told her to rest. It was not until she complained of it also hurting to go to the toilet that I followed her to the next toilet visit. It was then that my heart sank... bright red blood in her urine. We were at the doctors that afternoon and getting a scan. Our GP informed us that the scan was not good news and to go home and pack enough clothes to last us a couple of weeks as our new home was soon going to be the Sydney Children’s Hospital in Randwick.
Within 48 hours, we had left our 8-month old son and 7-year old daughter in Canberra and had confirmation that Ka’ili had a Stage 4 Wilms Tumour the size of a rockmelon living in her right kidney. The next 6 months included numerous tests, surgeries, protocols of chemotherapy, and hospital stays. We finally were told in January 2020 that Ka’ili appeared cancer-free. We were given 3 months to return to Canberra and we absolutely relished our time together as a family, enjoying the simple things like family bike rides, family catch-ups and we even bagged a private dance lesson with her old dance teacher. Like all good things, sometimes they come to an end and on June 8th, 2020 we were given the terrible news. We received a call from our Professor informing us her post-three-month scan had shown cancer had returned.
It wasn’t until the relapse that I realized this journey was going to feel different. I definitely had a different mindset. I was angry at myself for thinking we were in the clear, I felt a weight mentally that I didn’t’ have the first time around and it was harder to convince Ka’ili to do the treatments as the novelty and innocence of the experience had worn off. On top of that, we were told we had to move to Sydney for an undefined time. This to me was the greatest challenge as we needed to source accommodation near the hospital (an expense we couldn’t afford) and cope with the additional stress of both my husband and me having exhausted all our leave during the first lot of treatment. It was during this challenging time that I realised that there should be more services available for families.
I decided to spend my hospital time talking to nurses, doctors, social workers, families, Starlight captains, anyone that would make eye contact with me! I made it my mission to try and understand where further resources and support were needed for families, and particularly for families with rare cancers.
Ka’ili has a rare type of cancer and it has become abundantly clear that while cancer does not discriminate, the services available do discriminate depending on the type of cancer. Families should not have to worry whether they can afford to support their children through the biggest battle of their lives. They should be able to pack their bags as we did and leave their employment and life behind, as daunting and uncomfortable as that is, so they can be fully present with their sick child without having to worry about finances and, employment. These things shouldn’t matter to families battling cancer.
Win the Day charity has been developed with a clear mission to alleviate that kind of stress and worry for families already in chaos.
I am a dreamer and I believe that one day we will have defeated this cancer as a family, and we can return to bike rides and celebrating milestones together.
"I dream of the day that no family, particularly a rare childhood cancer family, will ever have to worry whether they can afford to care for their sick child."
- Kristy Giteau, Founder of Win the Day Charity