Meredith Lade and Ariana Delawari

My daughter, Ariana (Ari) was diagnosed with a germinoma brain tumour in June 2015, when she was 17, midway through her HSC. She was a very good athlete and middle-distance runner but then her memory started to go, and her running started going downhill. She became very quiet and stopped going out with friends.  Something was clearly very wrong. I think Ari probably had the tumour for nearly six months before anyone picked it up. Our lovely GP finally suggested an MRI and that’s when we found out Ari had a massive frontal lobe tumour; it was amazing that she had been able to function at all.

It was such sudden shocking news. Even though we knew something was going on, the diagnosis just slammed into us. Within three days, Ari was being operated on with a very uncertain prognosis. Our world shrank to the confines of intensive care and yet we were surrounded by such a wide network of love and care.  The humanity and care shown by the doctors and nurses was extraordinary.

The first six months was a blur of surgery, chemo, and radiotherapy and Ari was in hospital for about four and a half months. She finally came home not long after her 18th birthday. Then, in late December 2015, she went to Royal Ryde Rehab as an outpatient.

The only way to survive was to live minute by minute, day by day; it’s just as well you don’t know what’s coming. If you had told me in those early days that Ari would still be in active therapy five years later, I wouldn’t have believed it.

I had been trekking in Nepal several times many years ago and the main thing I learnt from  the Sherpas was never to focus on the top of the mountain as we were hiking, rather, just keep putting one foot in front of the other. And that has become a guiding principle in my life.

Royal Ryde Rehab referred us to Synapse. It was the beginning of the NDIS in Northern Sydney and no one knew much about it at all – it was quite chaotic but over time, it has become a life-saver. 

Lauren Bannerman from Synapse was an angel. When we spoke, it was like a light had been turned on. She gave me a fresh perspective and provided a framework for the first planned meeting with the NDIS. It was such a relief to have that support and not have to carry everything on my own. From that first connection, we felt like we weren’t alone.  

It has been wonderful to have Synapse to continue to support us in the NDIS process as it continues to be challenging in many different ways. Michael Hampton and our very helpful Support Coordinators from Synapse continue to be staunch advocates in our plan reviews. The Synapse team has become family and I feel like I can call them at any time; they’re such an anchor for us.  

I was working as a full-time teacher trainer, training teachers to teach English as a foreign language aid when Ari was diagnosed. I had been at a private language college  for 25 years and they were fantastic – I was able to take four months of personal leave while Ari was in hospital which took a lot of financial pressure off us.  

The challenge initially was having a young adult who suddenly was completely dependent on us again - just when you think your life is going to get freer. It was hard to negotiate things at home too as everyone was under a lot of stress. I felt very much for my older daughter as we were so focused on Ari’s survival. 

I went back to part time work two days a week in November 2015. It was very important to have my job even though I struggled to concentrate as it helped me to get some of that sense of self back and to do something that took me away from my 24 hour a day caring role. But it was hard as I had to really re-think my career and compromise. My priority was Ari so everything else had to fit into that.   

 I am very lucky to have such a supportive extended family and a great work community. I also have a wonderful group of loyal friends who have fed us, laughed and cried with me, taken me on bushwalks and provided such amazing love and care and who continue to stick by us. Ari’s school and running friends were a lovely part of Team Ari in the early days and those who have stayed in touch are true gems.   

Through  Synapse I met a family with a daughter who was a little older than Ari and they lived ten minutes away from us – having people who have gone through comparable life-changing upheavals has been so helpful. They are the ones who truly understand.  

We have also built up a fantastic support team of therapists, a neuropsychologist and an amazing group of committed support workers through Hire Up. Team Ari is pretty dynamic! 

I now work for TAFE four days a week, teaching ESL online, and I do a lot of bushwalking whenever I can get away. I am truly nurtured by nature.  

In November 2015, I did an eight-week mindfulness based stress reduction course which gave me something very solid to hold onto. Mindfulness and yoga have continued to be very important and have taught me the importance of self-care and giving myself permission to have time out to ground myself.  It’s been very nourishing to have this online community during COVID.  I’m also seeing a psychotherapist who provides wisdom and gentle guidance as I work through ongoing challenges. 

I’ve been learning to step back more and allow Ari’s support team to take more responsibility and initiative. It’s hard not to step in and speak for Ari, but she needs the practice to negotiate relationships when we’re not around. Five years down the track I feel that I can let go more now but that hypervigilance never really goes away. I would like to get to the point where we could have a lifestyle coordinator to help with the day–to–day admin. That would be quite a big step forward. 

Our aim is to develop Ari’s independence as much as possible. We are in our 60s and are trying to think creatively about what will happen down the track. That’s a hard one as Ari will need to live with support. I often wonder what that will look like.    

I’ve had to come to terms with the ‘before’ Ari and the ‘after’ Ari. I was so scared I would forget the old Ari, however what has struck me is that the essence of Ari is the same; she has such a strong spirit and her empathy, compassion and sense of humour shine through. She has shown such resilience against very great odds. We are blessed to have her with us.