In hope and love for Patrick

I write to update you on Patrick's progress. I will keep it short and to the point.

Devastatingly, Patrick did not respond to standard treatment (surgery, radiation therapy and just two rounds of chemotherapy).

In late April, he presented to ED following seizure and subsequent MRI revealed disease progression.

The news was harrowing, again.

An intense period of stressful decision making ensued regarding next steps because, outside of standard treatment options and with conflicting medical opinions, the area is ultimately very grey.

Last week, Patrick courageously underwent a second surgery to remove as much of the contrast enhancing tumour as possible. I am relieved to report that postoperative MRI shows no visible contrast enhancing disease remains.

However, pathology results confirm stage four disease.

Patrick is recovering well, despite some minor deficits which should be largely recoverable. Knowing Patrick, he will work diligently to recover these.

Given that standard treatment has failed Patrick, we have reached out locally and across the world to try and find the best next therapeutic options for him, including immunotherapies and targeted therapies.

Fortunately, Patrick is able to commence a novel combination therapy next week. Unfortunately, the medicines are not available to Patrick other than ‘off label’ which means we will have to pay for them up front.

The costs are enormous, but Patrick wants to give this next treatment option his best shot because HE WANTS TO LIVE.

In the meantime, we will keep searching for other novel therapies as they come to light and pivot to those as indicated.

We remain determinedly focused on extending Patrick’s life with the introduction of novel therapies.

It is nothing less than he deserves.

And because we love him.

We are grateful for the support we have received to date because the costs associated with treating and caring for Patrick are huge. The funds raised have been a game changer.

But now we need your support again, please, to help fund the novel therapies. If you can, please continue to support Patrick.

Never give up.