An insight into GP, Peter Cole that broke the news to Kristy and Sok about Ka'ili having a rare cancer.
Consultations like the one we had at the start are fortunately very rare (when it comes to kids at least) and I hope that this is a once in career experience for me. We regularly have to break bad news but obviously its much harder and emotional when children are the patients. There are so many things about Ka'ili's diagnosis that stand out to me.
On the day Sok came in to see me my intuition told me that this was more than an UTI and that I should assess Kaili comprehensively. When I felt the mass, my heart sank. I tried to remain calm and not let anything on to Sok. As soon as he left, I was straight into my colleague's room to "debrief". I was also then subtly trying to ensure that Sok did book the scan and remember asking the imaging place to bulk bill the scan as I feared that bad news was coming.
The next morning I was in theatre and usually my phone was on silent. That day I asked one of the theatre staff to hold my phone as I was expecting a call. And then it came. I was supposed to be in theatre all day but we finished early that day - what a blessing. I could give you the news ASAP, as horrible as it was. Before giving the news, I called the paediatrician on call to discuss the options. She was keen to send Ka'ili to Canberra as Wilms Tumors can be very dangerous.
Finally, how to let Kristy and Sok know. We know that as soon as parents get a call you assume the worst. So the challenge is to leave it as late as possible but still give them a chance to sort out the logistics. We have some amazing receptionists who worked out that calling them at lunch was probably the best option.
I will never forget telling them that news..... I knew that I was turning their lives upside down. It's a terrible thing to have to do but as I say I feel very proud and humbled by my job at times. The news was that Ka'ili more than likely had a mass that may be cancer and they needed to go home and pack their bags for at least 2 weeks. It was heart wrenching to see their reaction as Kristy asked, "Is she going to be alright? Is she going to die?" I shrugged and said, "You need to get there as soon as you can and be prepared for the worst."
Breaking this news is a challenge and having younger kids myself its hard not to get upset but if these things didn’t affect you then I guess that would not be normal. We are trained for moments like these and I just focussed on doing the best job I could do in the situation and to make sure I could give her family as clear a plan as possible.
The Giteau-Tai family will all remain close to our hearts at the practice. It's been a real privilege to help them on their journey by being a GP to lean on, chat things through, fill out forms / medical certificates or just being their advocate which is really what it is all about.
Let's hope the next chapter is less exciting for them....
How did you find out Quade had cancer?
We were going through a particularly crazy time. We had just completed a knockdown re-build and moved in. Our eldest daughter had started Kindy. Quade was 3 years old and for some time had been complaining of a bellyache, but nothing too serious. We would give him a cuddle or mention going to the toilet or drinking water and he would be fine. Progressively though it seemed to be more frequent to the point when it seemed like every time he ate he was in pain. I started to think he had an intolerance to something and casually booked him in to see our GP. When assessing Quade, the GP commented that she thought his liver was large and wanted him to get an ultrasound at emergency. I took Quade in and to my surprise there was a paediatrician waiting for us (our GP had called ahead as she hadn’t let on how concerned she was). The ultrasound revealed that he had a 10cm x 10cm x 10cm mass which had engulfed his right kidney. Once removed pathology confirmed this to be stage 2 Wilms tumour.
What were some of the challenges your family faced?
Our biggest challenge was the logistics involved with treatment and the uncertainty of Quade’s health. Sydney Children’s Hospital is approx. 1.5 hours’ drive for us; our local hospital in Wollongong can’t administer chemotherapy so for treatment we were in Sydney but for fevers, we would be admitted to Wollongong. Quade didn’t handle chemotherapy well and practically every week at 4 pm the day after chemo we would be admitted to the hospital for fevers and neutropenia. We were constantly on our toes waiting for a fever. It made it so hard to work, to plan or to try to make his older sister’s life as normal as possible. And the children’s ward at our local hospital was in a very poor state. There was no wi-fi (all hospital parents would understand the importance of ABC Kids and Netflix on-demand!) so purchasing data was costing us hundreds of dollars.
Do you have any fond memories of hospital life?
Sydney Children’s Hospital is amazing at distracting and creating fun! One of my fondest memories was when the play therapist would visit Quade. He was obsessed with washing machines at the time, so they found cardboard boxes/paint/stickers and made a cardboard washing machine with an opening door and buttons.
We also met many amazing families who are now some of our closest friends. It was weird looking forward to catching up while on the ward, and we shared and celebrated many milestones together.
How has it been settling back into “normal” life?
I feel like we are almost there but not quite. We are close to normal. Quade’s now at school in Year 1. His hair is back, and he looks and feels like a normal kid. Anyone who meets us now wouldn’t know what we have been through. However, we are still scanned every 3 months and Quade has some lasting side effects from the Vincristine chemo. His nerves are damaged in both his hands and ankles requiring physio and OT. But I think this is now our new normal.
What has been your greatest learning?
While childhood cancer is rare, I was shocked to see how many children are diagnosed. We met half a dozen children just from the Wollongong area.
I was shocked that my son’s treatment was the same treatment they did back in the 60s. Unfortunately, rare cancers don’t get the funding and research that other cancers do.
And I learnt just how strong our family could be in our darkest time.
What did you take for granted before that you don’t now?
I used to be quite judgmental, like when people were rude at the shops or angry on the road. I used to think to myself that people should be patient and kind and polite and there’s no reason to act that way. I’ve now realised that we don’t know what others have experienced to put them in that place. I’ve now been the rude lady at the shops because all I have on my mind is what can I get my son that he might actually eat. I’ve now been the angry person on the road racing to the hospital with my son with a 40-degree fever. I’ve been the person for whom being polite is the last thing on my mind because I am consumed with fear about what the scans are going to show.
Do you have any advice for others?
I would say to be careful when researching and googling information. There is a fine line between being informed and going down the rabbit hole. My husband often had to pull me out of despair after I’d spent the night reading stories of relapse and side effects. I would Google every little twitch/ache/symptom and be adamant that there was something more sinister than it was. Yes, you have to research so you can understand but don’t get caught up in it.
What are you grateful for?
I’m so grateful for a happy, healthy 6-year-old boy! I’m grateful for our family and friends who surrounded and supported us throughout, and for the doctors and nurses and staff who took such great care of our boy.
What are Quade’s dreams and aspirations?
Hahaha I really don’t know! Quade has a crazy imagination and an inquisitive mind; he needs to know and understand how everything works and loves everything science.