Living a new normal
Update
26 Nov 2025
Dear friends and supporters
Twelve months ago, I wrote to you with an account of an horrific year for Patrick and our family. Today, I can share that this year has been relatively kinder and less dramatic.
Patrick is doing well.
He continues to undergo fortnightly immunotherapy infusions and has settled into a steady pattern of treatment (although not without challenges at times), pursuing his Law studies, travelling a bit when possible (see him in this recent photo, absolutely in his element, in Italy) and planning more travel, and supporting Arsenal’s steady progress in the UK Premier League.
His regular MRI scan results are relatively positive, with consistent reports of stability and sometimes mentions of “mild improvement”. He has mastered most of the nuances of his diabetes and has upgraded to the latest in diabetes management technology.
His medical team at St Vincent’s Hospital Melbourne are very pleased with his progress, and we are feeling some sense of relief.
He is determined to push on with both treatment and engaging in the best of what life can offer him. I have huge admiration for him.
We all hope and pray that this solid progress continues and that we can try and restore some sort of ‘normality’ into our lives.
Whatever ‘normal’ is for us, I am not sure. At least for me, a substantial part of it involves grieving what I felt were reasonable expectations of life (once imagined) and building strategies to adapt to something very different (now real). If at times the process feels terrifying and overwhelming, there are other times when it feels hopeful and there is light.
In my experience, grief, whether prolonged or fleeting, is exhausting, uncertainty can be dementing, and hope is ultimately a mixed blessing – every single day I wish for a ‘happy ending’, it is the desire of my heart, but I am mindful that it can distract me from anchoring myself in appreciation for the present.
What I can do is return to the simple act of gratitude for those around me who I love deeply and who give meaning and purpose to my life.
Thank you all once again – I know so many of you think about Patrick and how he is doing. I hope my message addresses at least some of your enquiries.
A special thanks, too, to those who continue to walk the distance with us – you know who you are.
With all good wishes for a happy and peaceful Christmas and a healthy and prosperous New Year.
Health is everything!
Love Emily xx
Update
27 Nov 2024
To our dear friends, family and supporters:
As 2024 draws to a close, we would like to thank you once again for supporting Patrick so generously over the last 12 months.
It has quite simply been the most protracted and gruelling 12 months of our lives as well as the lives of those around us.
Although I am close to Patrick's experience, I can barely imagine how it has been for him - what he has had to deal with, and always with great respect and appreciation for the team of professionals who care for him.
Looking back over that time, I can recount the following by way of medical history:
• diagnosis of malignant brain tumour;
• exhaustive research for treatment options, and decisions;
• awake craniotomy and recovery;
• radiation therapy;
• chemotherapy followed by chemotherapy "failure" due to recurrent disease reported on routine imaging;
• further surgery not advised because too risky so second line chemotherapy presented as the only option;
• second surgical opinion sought with a new team - advice to proceed although high risk;
• second craniotomy (successful) and recovery;
• seizure management;
• exhaustive research (again) for treatment options, and decisions;
• immunotherapy; and
• diagnosis of type 1 diabetes, a complication of the immunotherapy and unfortunately permanent.
I cannot adequately communicate what effect these experiences have had, and continue to have, on Patrick, or me, or Joseph, Louis and Finian.
There are simply no words to describe the horror of all of it.
Without pretending to make any sense, I would like to share with you just one of the experiences that almost brought me unstuck. It was the diagnosis of type 1 diabetes. Not the diagnosis per se (it is annoying and limiting but certainly not life threatening), but the events that led up to it, and off the back of a year of anguish. Over the course of several weeks, Patrick became increasingly unwell and we were naturally terribly worried about the possible implications. When he was so violently ill and delirious one weekend in late September that Joseph and I took him to hospital once, then twice, we were terrified.
After another long night in ED, it became clear that he needed insulin, something those of us who do not have type 1 diabetes (let alone brain cancer) likely take for granted, largely unaffected by the miracle of a well-engineered and healthy functioning body.
To have to deal with this added complication, a complication of the immunotherapy Patrick is receiving for his brain tumour, required more of me than I had at the time and I felt properly depleted and defeated. It still sometimes feels like a herculean effort to come back from there ... and yet we keep pushing. Patrick is learning to manage his diabetes and is pressing on with the treatment.
I am not alone in my admiration of his courage and equanimity.
In early November, Patrick had another routine MRI. The formal report concluded, "mild improvement consistent with response to treatment." Whilst it is early days and there is a long way to go, Patrick's treating team are "pleased", even "excited", and encourage him to press on.
This is the first piece of relatively good news in 12 months and yet it feels strangely imagined. We do not have the confidence to trust, such is Patrick's and our vulnerability, but there is certainly a glimmer of hope.
Without hope, there is only despair, so we have to take it.
We continue to hope and pray for Patrick that the treatment promotes exponential effect so he can expect an even stronger treatment response next time.
Wouldn't that be just wonderful, and wonderfully just.
From early November last year, our worlds shut down to the limits of survival but that does not mean we are unaware of the kindness, generosity and love of all of you. These travel with us and we are hugely grateful. I have come to learn most intimately that gratitude is not just a state of mind, it is an overwhelming feeling of warmth in abundance.
In the meantime I will always fight for Patrick - your continued support is the collective gift of armour that I put on every day.
Thank you.
Update
30 May 2024
I would like to extend to everyone who has visited this page in support of Patrick my sincere thanks and very best wishes for 2024.
Your generous donations and kind words continue to give Patrick enormous encouragement, even as we are still trying to come to terms with the painful reality of his diagnosis.
Patrick is currently receiving standard treatment for his brain tumour – chemotherapy and radiation therapy – which will continue for the next 12 months. We are fortunate that Patrick is being cared for by an excellent team in Melbourne’s biomedical precinct.
After a prolonged debate over whether we should take Patrick abroad for proton therapy in favour of photon therapy (standard external beam radiation) to protect as much of his normal brain tissue as possible from damage, the decision was made to proceed at once with the latter especially given the aggressive nature of his tumour.
It is unfortunate that Australia does not yet have a proton therapy machine. A facility is currently being built in Adelaide, South Australia, however it will not be available to patients until 2025.
Frustratingly, I am very familiar with the standard treatment protocol offered to patients with brain cancer. It is not different from when Patrick’s late father was treated 20 years ago. Whilst these treatments prove effective in delaying cancer recurrence in many patients, they are not curative.
Brain cancer is a disease that has not received the investment in research it sorely needs. Efforts in this area have changed in recent years, but advances in medicine are necessarily cautious and methodical – it takes a long time for discoveries in the laboratory to translate to clinical treatment for the patient.
Patrick wants to be an advocate for accelerated change in this area, not only because he lost his father to the disease, but because he too recognises that brain cancer research to deliver more and better treatment options for patients like him requires considerable resourcing.
The devastation that brain cancer had already wreaked on our family of four sons was horrifying. To witness the suffering and death of my late husband seven years ago was eviscerating.
To learn that my beautiful eldest son is faced with the same disease is utterly unfathomable.
Of course, we hope that medical science will continue to advance enough to heal Patrick of this horrific disease, or at least allow him to live with it as a chronic disease.
Over the next 12 months, we will be scouring the world for the most cutting-edge therapies in brain tumour management, including targeted therapies. If that means we have to travel abroad to access these, resources permitting, then we will.
Patrick is young, spirited, independent, and wants to live his best life. He has hopes and dreams, like any other highly capable and ambitious young man.
I want to help him realise his aspirations by affording him the best treatment options available in the years to come.
Please continue to support us in our endeavours.
Help us make sure that 2024 is a year of hope for Patrick.
If you would like to learn more about Patrick's story, please see the update section below.
Update
09 Jan 2024
Patrick is 23 and has a malignant brain tumour.
When Patrick was three, his father was diagnosed with a brain tumour and died 13 years later when Patrick was just 16.
Despite the trauma and devastation of growing up with a sick, then dying father, Patrick demonstrated his formidable strength of character and extraordinary capacity to love by supporting his mother, Emily, and his three younger brothers, Joseph, Louis and Finian.
In high school, Patrick was a bright student, athletic and disciplined and made his way to the University of Melbourne.
In recent years, from a single parent income family, Patrick worked hard to support himself as an exchange student to America through to his current enrolment in the Melbourne Law School.
He was preparing to take on the world with the joyful excitement and ambition of a gifted, kind and personable young man.
In October 2023, seven years to the day of his father’s death, Patrick’s successful trajectory was cruelly derailed – he too was diagnosed with a brain tumour.
The news was devastating and the grief is immense.
Patrick is now on the heartbreaking and gruelling journey of having to draw on his great strength, again, to adapt to a new reality and focus on the very real challenge of getting well. We know that he will rise to that challenge.
Many of you have asked how you can support Patrick.
The single best gift you can give Patrick right now, and especially this Christmas, is to help fund his access to the best available leading treatments, including access to targeted therapies, potential immunotherapies and selected radiation therapies around the world, both now and into the future.
These treatments could save his life.
We thank you for your wonderfully generous messages of love, encouragement and support.
DONATIONS1134
Anonymous
Thu, 27 Nov 2025
$ 500
$ 500
Sallianne Venour
Wed, 26 Nov 2025
$ 100
Dear Em, Patrick and family, thank you for sharing this update. Thinking of you all, often. Salli and family
Dear Em, Patrick and family, thank you for sharing this update. Thinking of you all, often. Salli and family
$ 100
Anonymous
Wed, 26 Nov 2025
$ 150
$ 150
Marno Ryan
Wed, 26 Nov 2025
$ 100
Thinking of you Patrick, and Em and all the family
Thinking of you Patrick, and Em and all the family
$ 100
Anonymous
Mon, 8 Sep 2025
$ 100
$ 100
Anonymous
Sun, 18 May 2025
$ 500
$ 500
Anonymous
Fri, 18 Apr 2025
$ 250
$ 250