A turn for the worst, that was scary!

So that was scary…
Much of this has happened while I’ve been in NZ for the AFAC conference which SES have sent me over to, an incredible experience which was certainly brought down a bit by what was going on at home. This post is very much written by Jo, I’ve merely pieced messages together to give the best picture to everyone of what’s occurred over the last 5 or 6 days.

With the last scans results we’ve been preparing for battle but at the start of this week things started to take a bit of a turn for the worst. On Monday and Tuesday, Alex suffered dizzy spells which were unexpected. Concerning, but after a chat with the Oncology team; the decision was to keep an eye on him.

On Wednesday morning though, he got out of bed walked the length of the corridor and collapsed; stiff and unresponsive for approximately 20 seconds. Jo called Mum to take care of Jenny, got Alex dressed, stood him up to go to the car (heading for hospital for a checkup) and he had another. Mum rang an ambulance, Jo and Alex travelled to the hospital via Ambulance (while in transit he suffered another seizure) and were admitted via the Emergency Department at the hospital.

Admitted to Cassia ward saw Ram (Alex’s Oncologist) he said seizures weren’t uncommon that they weren’t damaging, but he needed anti convulsant meds to control them. So Alex was put onto the meds and retular observations overnight.

When he got up next morning at 6 for a wee, he had another one. As a result, the neurology team were called in and they weren’t convinced they were seizures as a few symptoms didn’t fit. They decided on a CT scan. That showed enlargement of the ventricles, a condition known as hydrocephalus. The tumor on his brain stem was blocking the flow of cerebrospinal fluid (CSF) causing buildup and pressure in his brain

This is a very serious issue but with a straightforward solution – a shunt in his head to relieve the pressure by draining the excess fluid into his peritoneal cavity. The scary part was the suddenness, the neurosurgeon Stephen came to see Alex after seeing the CT he was very concerned and said they were operating within the hour or there was a very real chance we would lose him.

To go from, ‘We expected seizures but its all ok’, to ‘operate now or risk loosing Alex’ in the space of a day was quite a lot to deal with!

The surgeons Cindy and Stephen said the pressure was very high when they started the op and they were confident they had made the right call. So the shunt is in and working, he has had another CT – the shunt is in the right spot so Dr’s are happy. Alex has started really eating again and has just asked for and is playing with a toy (smiley)

Not sure what happens next depends on the neuro team, but probably in till Monday now.

I can’t begin to express well enough in words, how proud I am of the way Jo has handled this while I’m away. She’s been very encouraging of me staying put and finishing the conference and catching up with a good mate while here. It’s been very difficult to not find the next plane and head home, but the communication from home has been amazing.

We’re back to one day at a time, we’ll keep cracking on and we’ll get through this latest hurdle together with the help, love and support of our family and friends.

Thank you all