Oh F*&k…

Well after a bit of a calm it appears we may have only been in the eye of the storm…

For anyone who we haven’t caught up with through the period, Christmas and New Year was amazing! My Aunty landed from Northern Ireland on Mum’s 60th Birthday which was a truly joyful day. We had a great time with family and the kids ran themselves ragged; so much so that Jenny who normally sleeps 45 – 70 minutes up to 90 on a big day for her afternoon nap, slept 3.5 hours.

New year was uneventful; spent at home together as a family. After checking in on the kids, a quiet glass of bubbles with Jo we went to bed. The happy train rolled on for a few more weeks with Alex starting Kindy, some really lovely family time including Jo’s fathers and brother in law’s birthdays and at the end of January Alex started Kindy! Alex hass been energetic, playful, adventurous and showing no fear to new things, new adventures and the opportunity to be a messy, noisy and boisterous little boy.

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Everything was rolling along nicely, at a steady pace with new things happening, smiles and adventures regularly. Then the latest MRI happened…

The day itself wasn’t great (they never are), but this one was worse than usual. It was hot outside, Alex isn’t what you’d call a huge fan of early mornings and we had to be at the hospital for 7 am or so we thought. On arrival to the hospital, I was told that no; we were not required to be there until 11am as he was on the afternoon list for MRI scanning. Once my homicidal rage had abated at the administrative cock up (with huge thanks to my darling wife who helped me see sense) I decided to try and take advantage of the situation.

After dropping into the Little Heroes Foundation (if you can spare a few dollars, help us reach our fundraising goal please go here) briefly to say hello, we went over to the Michael Rice Clinic to get Alex’s port flushed and have his monthly blood tests done; that saved us needing to bring him in on Monday. A quick chat with his Oncologist and let him stretch out on the couch in MRC for a while as I got him up stupidly early to be there on time for 7am. Before we knew it it was 11 and time to head for DOSA (Day of Surgery Admissions). Checked in and paperwork eventually done, we had nothing to do but wait. Lucky Alex likes the toys in DOSA otherwise it could have been a VERY long wait since he was second on the list for MRI in the afternoon which meant at best he wasn’t going in until around 2:15.

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Sure enough, I got a heads up that they would be ready for him soon and that he’d be going under just after 2:30. Once into Radiology, it’s never long before he goes into the scanning prep room and under the anaesthesia which is relatively peaceful now he’s done it a few times; he still protests but not much.

Aaaaand off we go with 90 mins or so to kill before he arrives back in DOSA recovery.

I had some running around town to do which was fine, I had plenty of time to spare and took off into the CBD to get what I needed to done. All was hunky dory as they say, until I was around 200 meters from the carpark when my car coughed then proceeded to run rough as guts with the engine light on. Not the best start to the day, but it couldn’t get worse could it?

Back to DOSA I had to call Jo to come and get Alex since I wasn’t sure if my car was safe to drive, the symptoms weren’t good that’s for sure. Unfortunately delaying our departure Alex was sick for the first time after all of the anaesthetics he’s had. So we didn’t actually get out of the hosptial till nearly 6:15pm after having been there since 6:50am

The RAA basically had a look, couldn’t diagnose the issue and gave em a deferred tow slip home. Telling me it was probably ok to drive gently, but if it started playing up to pull over immediately and get a tow. Thankfully I got home OK and the car didn’t actually blow up, which was a nice end to the day. The mechanic managed to squeeze me in the next morning to have a look at the car.

Off to see Prof. Celia Chen, a well renowned Neuro Opthamologist who gave us some news we were expecting I guess, but it was still pretty gutting. The blunt end of the stick is that the pressure from the tumour Alex had, put severe amounts of pressure on the back of his eyes crushing the blood supply to his optic nerve. Nerves don’t regenerate/recover well at all and the pressure, coupled with the time that it was present on the optic nerve has essentially killed his optic nerve and there is no realistic possibility of Alex ever seeing again.

There was some good news out of the day though, my mechanic had fixed the care in a day with a service as well; the catch? $450.00 out of my pocket – ouch!

So all in all, not the best few days at the end of last week. This is starting to sound like a melodrama I know but we were hit with some devastating news the following week. While it’s a vague possibility to be a flash in the pan, it’s unlikely… 2 of the lesions that still exist in Alex’s body are changing and that’s BAD news. 1 of them is changing and appears to be highlighting on the MRI with contrast dyes where previously it appeared to be dormant, another in his brain is showing signs of growth.

I’m not sure what’s worst, knowing that this is bad news or not knowing how bad it is at the moment. Fortunately, for now; time is on our side. We are waiting for the next MRI on April the 3rd to get the results and find out just how bad the situation is but when the Oncologist stated to us that he can’t tell us with any confidence that the disease is under control, you know that it’s not good at all.

We are currently left with a few potentials, none of which are particularly attractive.

  1. Another surgery to remove the active lesions, carrying some high risk
  2. 1 of 2 different chemo paths, each with their own risk and likely complications
  3. Radiation therapy, everyone is steering us away from this due to the huge risk to Alex
  4. Hope it’s nothing and the next MRI will show no change and stability in the tumours

While the possibility is there, we’ve been guided to the likely outcome that we will require more treatment and the odds are heavily stacked against us. When I thought we’d already had the fight of our lives, it’s on again…

You; our friends, family and loved ones carried us through the last 12 months and we are likely to need your strength, love and support again this year. Thank you for everything so far and for everything that you will no doubt offer and deliver us in the months to come.

I don’t know what else to say other that we’re gutted, doing our best to stay positive and hoping for the best.

With love and thanks
Phil, Jo, Jenny and the Awesome Alex!


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