Our journey started back in August 2019 when our then 16-week-old baby Demi was diagnosed with Bilateral Retinoblastoma (to put simply, cancer of the eyes).
My husband Luke had read a Stuff article a few months before Demi was born about a white eye reflect as opposed to red when taking photos with the flash on.
He had noticed this white eye on Demi, so we obtained a referral to Bridgewater where the eye specialist told us on the spot, he believed she would lose her left eye and to go home and prepare for Starship.
A few days later we were off, leaving our other daughter Libby, who had only just begun to get used to the fact she had a little sister.
The eye exam confirmed that she had cancer in both eyes, our hearts sank.
The tumour in her left eye was so big that the retina was fully detached, they believed she had never had vision in that eye. Her right eye had 6 little tumour's which were treated with laser on the spot. The decision was made to remove her eye as soon as possible and then await test results to see if chemo was needed.
The eye removal took place a few weeks later, her eye removed and replaced with a plastic ball that was attached to her muscles and nerves that means it moves like a normal eye. The testing confirmed two things, the first being that the cell mutation was not inherited from us. The second was that the cancer had begun to travel down the optic nerve and chemotherapy was needed.
A Hickman line was inserted, and Demi started chemotherapy at the peak of the measles outbreak (so masks and isolating were a thing for us way before Covid, and the wards were all on lockdown).
Demi had a busy calendar detailing monthly chemotherapy, eye exams, antibiotics, 7 days of injections, weekly bloods and dressing changes, clinic visits and anti-nausea medication. Along with visits from Blind and Low Vision New Zealand and Child Cancer. The weeks filled up very quickly.
We also learned what it meant to be under a shared care model. We had the Greenlane ophthalmologist, the eye surgeon, the prosthetic specialist, the Starship oncologist, and the shared care team for weekly visits at Waikato.
I have no doubt that everyone had Demi’s best interests at heart, however at times it felt like we were dealing with individuals without the team lens.
After her first dose of chemo the prosthetic specialist was pushing for a conformer to be put into her eye as it is needed to stimulate socket growth, the oncologist was saying no further foreign objection should go in her body, us as parents were new to this medical world and had no idea who was right and who the controlling decision maker was.
I quickly learned that it was my job to be a voice for Demi and ask for help when I needed it. I was also about to learn the True Colours team could help me work through situations like that and advocate with medical teams for us when required.
We continued with 6 months of chemotherapy travelling to Starship for a week each month. No amount of resilience training prepares you to sign papers to kill the cancer right now but potentially cause her cancer in 20 years’ time. Or the nurse walking in all gowned and masked up with a trolley labelled ‘toxic’ to connect to your child, an image forever etched in my mind.
I have never been great at asking for helping or relying on others, but this was a time in my life I didn’t have a choice.
We were overwhelmed by the love and support from the village around us. From family looking after Libby, to friends turning up with bags of food and wine, to my workplace (PWC) arriving with chilly bins of meals after each round of chemo. To complete strangers who reached out upon hearing our stories. To Mum, who was also an absolute rock for us.
I vividly remember the first time I walked into Cynthia’s office at True Colours. I felt an immediate sense of calm and safety, and the whole team was so welcoming. I felt connected to Cynthia instantly and she made sense of what I was thinking and feeling. Her medical background meant she understood clinical terms and shared care models.
We also began appointments for Libby at True Colours, to start building a relationship so if anything came up later for her, the relationship was already there.
I remember one car ride on the way there and Libby spoke up and said, “now Demi this is my special appointment today not yours”. It helped me to see the world through Libby’s eyes, that even though we were off to the hospital with Demi, she still viewed it as us having special time with her.
Chemotherapy ended in February 2020… right before Covid hit.
In fact, Demi got her first prosthetic eye the day before lockdown. Me and the specialist were back and forward over the phone deciding what to do, and we decided we needed to get it in as we didn’t know how long lockdown would be for.
The eyes are hand painted to colour match and sit like a thick contact over the ball stitched into her socket. Of course, Demi slept in my arms during the appointment making colour matching difficult!
It was such a special moment when she got her eye after 8 months of just having a white ball in there. You were no longer reminded of her journey every time you looked at her.
To be honest the first lockdown was an absolute blessing for our family. I was still on maternity leave and Luke’s work (APL) was still navigating the Covid world. It gave us a chance to slow down and reconnect as a family. We celebrated Demi’s first birthday with a facetime party.
Visits to Starship continued regardless of what level we were in. Demi had been booked to have her Hickman line removed however that got cancelled due to Covid.
By June life had resumed to a new normal. The normality of mundane everyday life was so good. I remember messaging Cynthia saying this week had been so uneventful and that was great.
Demi’s monthly eye exams under general anaesthetic continued with a few spots popping up from time to time but being treated with laser or cryotherapy when they were harder to reach. In late August a new spot popped up right on the edge of her right eye, it was very hard to get to and they couldn’t guarantee they were getting the whole thing. Of course, at this stage with Covid restrictions all appointments were with just one parent.
In September 2020 I went along to her eye exam – these were now two weekly as she wasn’t on chemo, and they didn’t have to wait to see the impacts. I was told the tumour had changed texture and was beginning to split in her eye, this meant two things...1 there was a chance if it seeded in the wrong spot in her eye, she could end up blind. Number 2 was that we needed to restart chemo asap. We would do traditional chemo and if the first month didn’t get the result we wanted, they would inject directly into her eye (at this stage this had never been done on a child in NZ). I felt absolutely blindsided.
I think the second time emotionally it hit me pretty-hard, I’m an optimistic person but some weeks it was a lot, I was so convinced after the first 6 months of chemo we were done, Luke on the other hand was a lot more cautious than me and often told me not to get ahead of myself.
I felt like I had been quite an open book, but Cynthia explained to me that often we keep things to ourselves in these situations to protect our friends and family and protect ourselves from the fear of what people might think of us if we say what we are really thinking or fearing. It wasn’t till she said this to me I realised how much I had been carrying around.
The next lot chemo was more challenging, Libby was due to start school, so we put those plans on hold for a bit, I was working and needed to for my sanity, Demi was older and moving round so more prone to picking up bugs. The time before I was still feeding her, so it was now more challenging to get food into her. We were lucky that once again both parents could be there for every dose of chemo.
She responded well to the chemo, and it meant she didn’t need chemo direct in the eyes. She had her last dose of chemo on the 23rd of December 2020. I had just sent a group message to say we had finished chemo when Demi had an allergic reaction to one of the chemo drugs, a terrifying experience. I remember arriving at my Mum’s house on Christmas Eve and bursting into tears. I was feeling pretty done by that point.
We started Libby at school a few weeks late in November and it was awesome working at home with Demi and being able to drop and pick Libby up most days, which was an absolute silver lining, though there were a few challenges when Demi developed a fever and we had to urgently get to the hospital.
2021 & 2022 were much smoother years despite numerous Covid tests, border paperwork and continued monitoring. Demi’s eye stayed relatively settled. In August it had been a whole year since there was any activity.
With her cancer there is a risk of new tumour's developing in her eye until the eye is finished maturing around ages 5 to 6. Every appointment we have that is clear is another step closer. I recently heard her cancer described like popcorn; the tumour's can pop up at any time.
Due to Covid, her port stayed in for 17 months longer than needed, this also meant every time she got a temp, we had to head straight to Waikato for two nights and have IV antibiotics. Thankfully in June this year it was removed.
As of now Demi has been under anaesthetic 45 times, she is on quarterly eye exams and MRIs and has around 369 beads of courage.
She is a funny, strong willed and determined wee girl, who lights up every room she walks into, and who has pranked the odd relief teacher by taking her prosthetic out.
Thankfully there has been no impact to the vision in her right-hand eye (despite the 9 small tumour's she has had). She is onto her 4th prosthetic eye. She keeps up with other children and hasn’t let having one eye hold her back.
We are so thankful for role True Colours has played in supporting us as a family and in advocating for Demi.