A glimmer of hope

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.