So you know how we had a plan…

So you know how we had a plan…

In the past when Alex had a medical emergency he had a habit of having them on major holidays or days of significance to us. Apparently he is yet to break this habit, though his aim was a bit off this time. (Phil’s birthday isn’t until Tuesday the 27th)

Wednesday (21st) we had 2 hospital appointments, endocrine and general medicine. They both went well and we got home around 4pm. At 6pm Alex started shouting from the living room saying he hurt and he couldn’t talk. He speech was very slurry and he told us his hands were on the wrong way, that they were tangled. Phil called an ambulance and right before they arrived he started improving. He was still a little off sounding, but before we left he was showing Daniel and Celeste all his toys and his room. they decided he needed to go to WCH anyway so off we went. Alex’s speech started deteriorating again part way there and we finished the journey under lights and sirens.

We went straight into ED for assessment, Alex seemed to have waves of slurred speech and not being able to form sentences, then improve not quite to normal, then start to slur again. The wonderful Dr Elie was there and said  in his opinion Alex looked like he was having seizures so he wanted to do a contrast CT scan. The contrast was to give Dr Elie a clearer picture of the tumours, since the CT isn’t as affected as the MRI by Alex’s cochlear magnet.

This meant a cannula had to be inserted, he was very good but he got quite upset by the process and so when it came time for the scan he had a bit of a melt down. It was around 10.30 at night by this point so he was tired on top of upset on top of scared and he did not like the head cradle for the CT.

After 10 minutes of tears I decided to take him to the toilet and give him a few minutes out of the situation. He calmed a little and when we got him to lie down again he fell asleep. Radiology got some nice clear pictures.

The scans confirmed the seizures and they started an anticonvulsant drug called keppra.

Scan done we headed back to ED. Alex went to sleep, and I would have liked to but there are no parent beds down there. It was decided that they wanted Alex on a 2 to 1 (patient to nurse) ratio and that we would be moved to Cassia ward. The nurse looking after us in ED would be coming with us to Cassia to look after Alex for the rest of her shift.

 Unfortunately ED was busy, they couldn’t let her go until they had sorted out other patients, so by the time it quieted down enough for her to leave it was a quarter past two. AM. 

We finally got settled in Cassia and into pyjamas ready for much needed sleep when Alex managed to disconnect his cannula line from his saline drip. It was a literal bloodbath. He looked like an extra from a B grade horror movie. 

If you’d asked me that morning what I thought I’d be doing at nearly 3am, washing a metric half cup of blood out of Alex’s pyjamas wouldn’t have been high on the list…

I finally did get some sleep, but Alex kicked the O2 sats meter off his toe a few times over night which sounds an alarm until it’s reconnected, fortunately it’s not heavy machinery and I was able to operate it whilst drowsy.

On Thursday morning his speech was much improved, we had a visit from Danusha from neurology, then Dr Mike and Dr Beck from oncology, then Dr Elie from neurosurgery. Their combined considered wisdom at this point is to try and get some samples of original tumour tested at WCH, as it’s a quicker turnaround time, and see what the results are. There’s also apparently more than one gene mutation they can look for, so even if the BRAF mutation isn’t present there are others which might be targetable. They wanted Alex to stay another night to make sure the seizures don’t recur and have scheduled an MRI for next week.

I was starting to think that we needed to install a revolving door on Alex’s room that day as we had visits from neurology,  neurosurgery, oncology, pharmacy and then neurology again. Our second visit from neurology included the head of department – Dr Nick.

Alex started a competition between Dr Mike from oncology and Dr Nick about who knew the most number of languages to say ‘red’ in. Alex knew Japanese and Italian, Dr Mike knew French and German but Dr Nick lost since all he knew was French. He wasn’t impressed and since he lives around the corner from Dr Mike I believe some sort of retribution may be on the cards – if your fence ends up painted red Dr Mike, you know who to talk to ?

Dr Nick explained that the seizures were presumably being caused by the RHS legion which is in an area which controls speech. There’s no one reason this happened today, as opposed to 3 weeks ago, but the fact that it has happened isn’t surprising. The lesion is having an effect on the surrounding brain tissue making it more likely to trigger a seizure.

He’s likely to be under neurology’s eye for a while though, even if everything goes our way oncologically speaking. There will still be scar tissue left behind, which in and of itself might be enough of an irritant to trigger seizures.

To add insult to injury, nurse Kate, an oncology nurse, told Dr Nick as he was leaving she knew the word red in Danish.

Friday morning oncology gave us the ok to go, neurology did too, but only after we had done seizure training. Alex was diagnosed as having had focal seizures which are not life threatening, however, since he’s now had a seizure his risk of having a convulsant seizure is slightly increased, so as a just in case we have had some training and have a sedative in the fridge. Let’s hope we never need it.

Once that was done, we signed all the forms and we were on our way home, just in time to get Jenny from school.

Alex is now on a few new drugs. Keppra is the anticonvulsant of choice, though there are several others, the good thing about keppra is that it won’t interact with any of the drugs oncology are looking at using. He’s also now on dexamethasone temporarily to reduce inflammation in the tumours. We have had dex in our medicine cabinet before – Alex was on it for several months whilst he was having radiation treatment – and we are already seeing the twin side effects of appetite increase and ‘roid rage’.

TLDR? despite the scare he gave us, we are pretty much in the same place as before, waiting for test results and having another MRI. He’s just on an anticonvulsant medication and a steroid now too.


The reception desk in the imaging suite at the WCH has this sign taped to the patient side of the monitor, and it struck a chord with me given the events of the last few days.

no amount of regret changes the past
no amount of anxiety changes the future
any amount of gratitude changes the present

I can’t go back and notice Alex’s symptoms earlier
I can’t do anything about test results or treatment to come
But I can be grateful that there is medicine, and medical staff who know how to apply it.
And I can be grateful that Alex is still here, and still fighting.