What were you told about his diagnosis and what was ahead for Levi?
We were told Levi had DIPG, or diffuse intrinsic pontine glioma, a brainstem brain tumour. DIPG is terminal on diagnosis. 100% fatal. There are no survivors, ever. When we walked into the oncologist’s office to get the results of his biopsy, we knew Levi had a mass and some swelling on his brain. By the time we walked out, we knew our gorgeous boy, so full of life and love, had only a year to live – if we were lucky. The cancer would strip away his body’s vital functions, arresting his ability to eat, talk, walk and eventually, breathe. There was nothing we could do to save him. It felt even more horrific than it sounds, as utterly unbelievable now as it was then.
What is DIPG?
DIPG is a tumour found in the pons, an area of the brain located within the brainstem. Because of its location in a critical part of the brain, surgery to remove the tumour is not possible. Sometimes even a biopsy is out of the equation. DIPG predominantly affects children, typically between the ages of 5 and 10. In Australia, up to 20 children will be diagnosed with DIPG each year. The average life expectancy of a child after they are diagnosed is nine-months. The typical treatment involves radiotherapy, which in the majority of cases will shrink the tumour, before it grows back aggressively and lethally.
What did that next year look like for your family and for Levi?
I call it the most heartbreakingly beautiful year of our lives. We lived and loved as though our world as we knew it were ending, and it was. On the one hand, we had the crippling, unavoidable reality of Levi’s cancer, and on the other, we had a vibrant life which carried on, forever changed. We had a beautiful brave boy who went to school one day and treatment the next. A soccer-mad, energetic kid who could tear up the pitch with his mates, all the while undergoing experimental and invasive treatments. As a family, we travelled far and wide and had many once-in-a-lifetime experiences. We were able to make some unforgettable memories with family and friends. Not everyone gets a chance to do that. We had the highest of highs and the lowest of lows.
How did this impact your work and the logistics of everyday life - something that so often isn’t spoken about during such awful times?
When Levi was diagnosed, I was new to teaching. I spent 16 years as a journalist before earning my post-grad teaching degree. A career change might sound like a disaster at a time like this, but mine gave me flexibility and job security. I also had a supportive boss. At first I had to take three months off because we were at the hospital every day during Levi’s radiotherapy. Then I worked 1 day a week for the rest of the year because we were in and out of hospital so much. In terms of practical support, we had wonderful family who stepped in to look after our other kids when we couldn’t. All of this gave us the space to focus on what we needed to, but the stress we were under was intense. I remember one particular 24 hours, we spent the day in hospital with Levi getting tests, the night in hospital with Archie with severe gastro, then we were back at Levi’s hospital a few hours later for the start of a new trial. Days like these became our new normal. Any sense of living an ordinary life gets thrown out the window.
Levi devastatingly lost his life just over a year after his diagnosis, and you have lived every parent’s worst nightmare. How do you even begin to pick yourself up?
There’s an element of just buckling up or strapping in, because in the beginning there is little control over what comes your way. At the very start, around the time of Levi’s funeral, I felt a powerful sense of purpose, as though Levi’s spirit was guiding me and propelling me forward. I have no explanation for this, other than when I saw Levi suffer the way he did, something shifted inside me. You can’t go back to what you were after that. Soon after that I crashed, flattened by sadness. I think the adrenaline finally left my body. Then some other dimension opens up. Survival. A little bit of madness. Things frequently did not feel real. I remember spending a good deal of time suspended somewhere between astonished disbelief and crushing realisation. I would literally stop in my tracks and think, “What the hell just happened.” You get smashed by a tsunami of emotions. Sometimes it’s a grief ambush, other times you can dip in and out when you need to. It continues to this day, just with a little less intensity.
You have two other children - Archie and Olivia. How were they supported during that awful last year of Levi’s life?
Having a sibling with cancer is so hard. We were at the hospital often and Levi received a lot of our time and attention because we knew we didn’t have much time left with him. We tried to shield Archie and Olivia from the full extent of what was going on, which meant we couldn’t be completely open about why everything was about Levi. We thought we were doing well, spreading the love as best we could, but to them it just felt unfair. Levi was always receiving a special package or visit from someone. And he got to spend so much time alone with Ben and me. Of course, that time was spent at the hospital, undergoing a barrage of tests and treatments, but kids don’t see it that way. That whole year was about making memories as a family, but the focus was very much on Levi. I don’t regret it because we gave him everything we could, but our children’s pain continues every day.
How did you explain Levi’s condition to Archie and Olivia? And how did you explain the loss of his life?
Those conversations evolved over time. At the very beginning, we kept things general. We told them doctors had found a lump in Levi’s brain, then that lump turned out to be cancer. We never told any of our kids the name of Levi’s cancer, because we didn’t want them or their friends googling it and finding out the outcome. As his cancer progressed, we had to duck and weave a little, teetering delicately between the truth and not wanting to smash their world to smithereens. We were told to try and instil hope, as flimsy at that sometimes seemed. “The medicine the doctors have given Levi isn’t working. The doctors are trying their hardest to find new drugs which may work.”
When we chose to have those conversations about death, it was like stepping off the precipice. It’s difficult to convey just how harrowing it is to tell your eight-year-old that he is dying. Or to tell your daughter that her brother will soon take his last breath. No words will ever get to me the way those ones did. I revisit those conversations often, and in turn they bring me comfort and destroy me. I am changed by those terrifyingly dark words we whispered to each other into the night, and eternally thankful we went there together. It’s one of the things I am most proud of.
What does life look like for you and for your family today?
We have a beautiful life, surrounded by amazing friends and family. We find joy in a lot of things, and we have two beautiful humans we still get to have and hold. We are the fortunate ones. But there’s a special someone missing, and he pervades everything we do. As I like to try and explain it, he’s everywhere and nowhere. In terms of the hardships we face, I want to acknowledge the pain of the siblings left behind. It’s something you don’t often hear about, because the things they have to wrestle with, and the impact this has on families, is unsettling. Each and every day they struggle, desperately at times, with the damage. If I could take one thing away, it would be my children’s suffering.
How have you been able to move through this unimaginable grief? Have there been particular books, or people, or thoughts, that have helped you?
When you go through something as overwhelming as the death of your child, connection to people is the one thing you crave above all else, to silence the alienation that stems from having thoughts and memories and experiences that no one else does. We have many beautiful friends and family who have held our hands throughout our journey. My path would have been much lonelier and more difficult without the support they have provided. I see many therapists – psychologists, grief counsellors, trauma counsellors. If I think they can help me, I will talk to them! Being open and honest works for us. Death is not a taboo topic in our house. We have many family rituals around Levi. We visit his grave regularly, commemorate significant events, do things in his honour. We like to remember the incredible kid he was. Channelling our pain into something positive, through Levi’s Project, has also helped.
Tell us about Levi’s Project.
Levi’s Project is a world-leading research program by scientists at Children’s Cancer Institute which aims to develop Australia’s first-ever treatment program for DIPG. It was born out of a sense of helplessness while Levi was sick. This disease is so horrendous, and the treatment and survival rates for DIPG have not changed in 40 years. We focused on our family while he was alive, but we knew we wanted to try and affect change when he died. There have been around 250 clinical trials for DIPG around the world. None of them have been successful. Imagine if we can change that. So far we have raised $2.6 million for DIPG research, with a goal to reach $3 million. We have three scientists working on the project, and we are funding three clinical trials for children with DIPG, as well as all the pre-clinical research costs.
Your blog is absolutely beautiful, but is heartbreakingly sad. Does writing help you in your grief? For example, in talking about what he should have been at age 9?
I do find writing my blog cathartic. It’s both a purge of how I am feeling and a powerful tool to take ownership of my grief. It’s also incredibly exposing and taxing to write. So much of what has happened has been out of my control. This is my way to communicate the complexities of my experience, my resilience as well as my vulnerabilities. Grief is complex, with so much light and shade. People say to me all the time, “I don’t know how you do it”. That’s their way of exploring how they would cope if they were in a similar situation. My blog is a taste of what that could look like. I think that’s part of the reason it resonates. People connect to something much more when it feels personal. This could happen to anyone. We were that family. Another huge part about why I write about my experience is to honour Levi, the life he lived and the person he was. I want to build something in his memory and create awareness of the impact that DIPG can have in order to change the outcome for other kids.
How can we help with Levi’s Project?
We would be over the moon if people could donate whatever they can at www.levisproject.org. The only way we are going to find a cure for DIPG is through research, and research costs a lot of money. We would also love for others to create awareness for Levi’s Project by fundraising, whether it’s through a fun run or walk, birthday, school event or trivia night. You can check out the fundraising page on the website for details or email me at email@example.com if you want any information or support.
What advice do you have for any parent who might be encountering a similar heartache?
Life is precious. If you can, focus wholeheartedly on your child and your family. Love as hard as you can because it does matter when they are gone. I know we gave Levi every ounce of our being, and he felt that. We were privileged to be able to give him that – not everyone gets that opportunity. When he had to face death at just eight years old, I know it helped him feel less alone.
What advice do you have for anyone whose friends or family might be experiencing a similar pain?
People always ask what they can do. I say just continue loving me and supporting me. Stay close. Always check in, even if you feel like you are overdoing it. Life gets messy and relationships get hard after a child dies. You need connection to feel normal. Any opportunity for your feelings to feel validated is welcome. Don’t put the onus of help on the bereaved. “Let me know if there’s anything I can do” is not helpful when you don’t even know what you need. Sometimes you don’t even know what you want until you’re doing it, so be specific, “Can we go for a walk tomorrow? “Can I cook you dinner on Tuesday?” “Let’s get a coffee this week.” Anything to take the burden of permission or effort away.
What is next for you, for your family and for Levi’s Project?
As a family, we will continue to try and live the best life we can for the one who can’t. That’s not a grand statement. It just means finding joy with each other and those who matter most to us, in whatever way we can, despite the many challenges we face. For Levi’s Project, we can’t wait for the day, in the not so distant future, when the clinical trials start. Imagine if we can find a treatment that works!
What legacy has Levi left?
Levi was always thinking about others. To know that he’s helping kids like him, even after he’s gone, would make him so happy. When he was alive, he taught us to appreciate what we have. I know now that love is the only thing that matters in the end. A life means something. His certainly has.