Family Interrupted.

In September 2010 my wife Tara was diagnosed with a malignant brain tumour. I won’t go into crazy detail here about the immediate aftermath, because I’ve written about this before, but after her initial surgery we packed up our lives from Bali, went on the trip of a lifetime through Europe, moved back to Western Australia, both started new careers and had two beautiful little boys. Every 6 months we would go and get a checkup MRI to make sure the tumour was stable. Everything has been going great — until last month. The fucker appears to be growing again.

Just four weeks after our latest boy Kai came into the world, the checkup MRI has shown about 3mm of growth since the last scan (actually 12 months because we didn’t get MRIs during pregnancy). More concerning is that there is a small amount of contrasting now present in the imaging, which the oncologist panel thinks might indicate faster growing cells. If that’s the case, it could be upgraded from a Grade 2 tumour, to a Grade 3 or 4. Rather than go into the clinical explanations of the grading system, I’ll simply say this would really, really suck.

It has currently been recommended that we go into surgery before the end of the year to ‘debulk’ as much of the tumour as possible and get tissue samples for pathology analysis. The analysis will help confirm any true grading and also indicate what kind of ongoing treatment there may be. It has been suggested that a combination of radio and chemotherapy will be likely recommended.

We’re currently in the process of getting second and third opinions. Last week we flew to Sydney to meet with Prof. Charlie Teo, who is renowned for operating on tumours other surgeons will not, and taking out more than other surgeons would. This is a radical option for us. Prof. Teo has suggested that if we wanted him to take out as much of the tumour as he can, there’s a 5% chance of paralysis and a 15% chance of a permanent speech disturbance (including potentially an entire loss of the ability to communicate). These are very high risks, so until we have a clear indication of what other surgeons can do or recommend we do, then we won’t make a decision.

The next steps are two more appointments. One with a surgeon in Perth near where we live, and the other with a team of brain tumour specialists in Melbourne at the end of November. Once we have all of these opinions on the table, we’ll make the best choice we can for us. The goal on our end is to give Tara the longest and highest quality of life we can. That might sound kind of obvious, but when you’re weighing up, for example, the possibility of living 1 year fully functional, or 2 years paralysed, it becomes quite a tricky decision.

I’ll be posting updates to our journey on Medium once new information is at hand. This will be partly to keep friends and family up to date, partly to help others know what what to expect if they ever have to go through this, and partly for my own form of writer’s therapy.

I hope to have less-than-disastrous news in the next instalment.