Here we are again, another big update

Things have been a bit crazy since the comic timing of my appendix deciding to get grumpy with me.

It felt like I was barely over the anaesthetic from my own surgery, when sitting at the dinner table after a long day at work; Alex had a violent vomiting spell. Not nice at any time, but when you’re trying to eat dinner it doesn’t make life easy. The problem was that he’d been vomiting off and on for 4 or 5 days and wasn’t eating much.

So off to the Women’s and Children’s we went again.

After a long stretch in the Emergency Department, we got up to the Michael Rice Centre around 11:40pm which; by the time Alex was settled, the Dr visits had finished, I made my bed and got settled resulted in a 2 am bed time and the usual herd of baby elephants galumphing around the ward at 8am with multiple wake ups in between.

The next day due to the unexpected nature of the vomiting the Doctors were in diagnosis mode. One of the thoughts was that his shunt that was put in during September may have been blocked. The random and unexpected vomiting and complaint of a vague headache was consistent with the potential for this, so Alex had another CT. This showed no issues with the shunt which was great, it meant that he didn’t have to have another surgery to remove the blocked one and install a new one.

After a significant amount of fluid over the subsequent 24 hours via his port, lots of medications and some questions still unanswered we ended up heading home from that stay with the understanding that the vomit was most likely caused by the continual coughing (related to the pneumonia from October) causing a mechanical or “gag” reflex which resulted in vomiting.

So on we plod with the daily grind, managing one day a time.

As if we hadn’t crammed enough into the last few weeks, Alex had a follow up MRI on the 4th of December which meant another GA and another day in hospital. I need to thank Jo’s Mum for rearranging her appointment that was booked for that day so she could look after Jenny which meant Jo could take Alex to hospital and I didn’t need to take another day of leave from work. The day went reasonably “normally” for a day in DOSA and Alex (as normal with MRI) was not a happy chappy when he emerged from his slumber. With Alex’s declining appetite, Jo had a great presence of mind to use what the nurses were looking for before he was allowed to come home

  • Eat something
  • Drink something
  • Use the toilet

and stood firm on that until he complied with them. Eventually Jo got him home at about 20 to 7 in the evening which meant she missed her usual Yoga class on Thursday evenings but it got something in his stomach.

The results came back in a preliminary report on Monday via phone, the abridged version is that it doesn’t really tell us much at the moment, it’s very difficult to read because it has been done so soon after the treatment and has what is referred to as diffused enhancement. What this means is that there is a lot of blood around the brain at the moment and (very basically speaking) the MRI has lit up like a Christmas tree.

In among all the sparkly lights, there are 3 tumours that the doctors are watching:
1. One on his spine that has shown no change since the last MRI

2. One at the initial tumour site has shown some minor change, which could be change that occurred after the last MRI but before the Radiation therapy started in September or it could also be swelling from the radiation therapy. So it’s not disastrous news by any stretch at the moment.

3. The one his brain stem which for the most part has shown no change, but showing signs of reduction in size or “shrinkage” if you will. This is a very, VERY good thing!

Last weekend (5th – 7th Dec) we managed a sneaky little getaway with the family. It was great to head down to Victor Harbour for the weekend with my folks. We had a lovely house down in Encounter Bay with a gorgeous view off the balcony out to sea. A relaxing couple of days including a quick trip out to the wildlife park where Alex was thrilled to pat the Koalas and a sheep. Unfortunately the relaxing by the sea ended way too soon and we had to crash back to reality with work and now as of last night another unexpected, rather urgent trip to hospital.

Just before 5 last night Jo called with an unusual opening of “Tell me you’re on your way home” which concerned me, Alex had vomited and there was blood in the vomit. VERY concerning obviously, so I threw everything in my bag and went straight home. Jo had already bundled some clothes, stories, Alex’s iPad and some supplied for me for a couple of days so it was a very quick stop over at home and off we went to the Emergency Department.

On the trip in he vomited twice more, both times containing blood. Into the ED we ran into an old friend of Alex’s from MRC: Dr Neev and boy was he happy to see her! Despite his feeling generally shit, her voice still brought a big smile to his face which was lovely to see. Some tests, fluids etc and off to Cassia ward for the night where we were put into the room and settled for the night.

The results of the tests last night have showed that Alex’s biochemistry is all over the place; hardly surprising given he’s losing blood somewhere and the vomiting will reduce electrolytes and potassium levels which is exactly what has occurred. So at the moment the thought process from the doctors appears to be

  1. Stabilise his biochemistry at or near normal levels
  2. Work through tests to figure out why he’s vomiting
  3. Work out why there’s blood in his vomit

The feeling at the moment is that we’re likely to be here for a few days, they’re already talking about “On Monday…” so we’ll be here at lest 2 more nights, potentially more. We’ve got everything crossed that it’s not too much longer but we’ll just roll with the punches and focus on what’s most important right now… Alex!

Aside from the quick getaway, it’s been a rough few weeks but we’re managing as well as you could expect I guess. I get a lot of strength from Jo that’s for sure, she keeps me sane and keeps me in line when I need a firm hand. As always, thanks everyone for the calls, emails and messages of love and support


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