A huge update: Chemo, Infection, Harvest and Fundraising

It’s been a while since I managed to get a blog post out and a LOT has happened.

Round 2 of Chemotherapy went as well as we could have hoped, the drugs went in and we went home at the end of it. Obviously it’s not as simple as that (if only it were) with the drugs that are being administered to Alex. By the end of day 2, his appetite was gone and we were having “discussion” with the nutritionist at the hospital about ways to prevent Alex from losing any further weight. The reality is, he needs to eat more…
Clearly she’s never tried to force feed a nauseous 3 year old food that they don’t want to eat!

The good news is that he has settled on a stable diet of pasta, milk and teddy biscuits (Tiny Teddy’s for those of you old enough to remember them!). The pasta sauce of choice is a spinach, ricotta and pecorino stir through which is a bit of a surprise, but who cares? He’s eating it!

With the addition of Poly Joule which is a carb and protein powder that has been supplied on script by the hospital we’re getting more and more calories into him which seems to have now done the trick, in fact not only did he NOT lose any weight this week he’s gained about 400 grams which (given the potential health issues associated with Chemo and weight loss for kids) is a big win for us and a concern off our plate

2 down, 4 to go!

Leading into the Clipsal 500 weekend, I wasn’t actually sure if I was going to be able to find the time or the money for tickets to get to the track. Camp Quality called me in the days leading up to the race (while we were still in hospital having chemo) asking if I would like a double pass for the Sunday, Oh DUH! But on the morning of the Saturday with a phone call from my cousin Dave who offered me a spare ticket into the Gylderol corporate box, so I gratefully accepted and headed to the track ASAP! When I got there and found the box, I also discovered that this is the way to watch the Clipsal – Best seats in the place, beer a plenty in the nearby fridge and a great view of the race start.

Sunday rolled around and Alex wasn’t quite himself, so out of safety we dashed in early to the hospital. We were due for Alex to have his stem cell harvest on the Monday but after a few hours in emergency and by the time we got into the ward he was showing signs that he might spike a temperature which has me resigned to the fact I was unlikely to get to the track on Sunday and see the Motley Crew and KISS concerts. While I was disappointed to be thinking about missing one of the biggest rock bands in the world, there isn’t a band in the world that’s worth sacrificing my number 1 priority right now and that’s obviously Alex.

The routine blood tests in Emergency and urine samples were done… on ward admittance Alex was neutropenic again which didn’t bode well, zero neutrophils and zero white count is never good even in a chemotherapy patient. One of the nurses at the hospital told me that he would spike a temperature and she would be stunned if he wasn’t on antibiotics by the time she returned for her shift the following day, oh great! Amy (my sister) arrived a short while after this, I wasn’t sure why but the explanation was that I was going to be told to take my ticket and head to the track with Amy: Enter my beautiful wife Jo, ticket in hand and basically waving goodbye to me.

Dammit, she was right!

Just as Motley Crew finished, I got an SMS from Jo telling me “Temperature spike, antibiotics starting now”. After a bit of a mutter under my breath, I came to the conclusion that Jo was there looking after him and I was about to see KISS live! The short version it was a great show, I had a blast and at the conclusion of the show dashed back to the car to get to the hospital and stay the night with Alex.

Come the morning, the dust had settled and his temperature was coming down. Some of his blood levels were a bit low which required further transfusion but nothing out of the ordinary and unlike round 1, because they caught the infection very early it was more than likely that we would still be able to go ahead with the stem cell harvest this week. By Wednesday, his levels were on the up and the medical staff hit the go button for the harvest that day.

Without all of the boring details in the middle; Alex was taken to PICU (Paediatric Intensive Care Unit) and had a Vascular Catheter inserted into his femoral artery under heavy sedation. When he woke up from that was really not happy with the general situation and fought me heavily and resulted in my requesting that the team sedate him again to avoid him hurting himself. The good result from all of this was that he slept through the first day’s proceedings of the stem cell harvest. I don’t claim to fully understand what they did, the fact that 2 of the Haematologists came to have a look at this fancy machine he was hooked up to gives me the impression that neither did they! After 2 days being hooked up for about 4 and a half hours each time the harvest was done, another big tick in the box towards the end goal of completing treatment.

While unfortunately he had to be sedated again to have the VasCath removed, it was actually pretty funny. The sedative they used creates the behavior of being very drunk… If you’ve ever seen a toddler on this stuff you’ll know what I’m talking about. Oh man did he dribble some crap, NO idea what he said but he thought he was funny. At one stage Alex started stroking the arm of one of the male nurses there at the time and stated “It’s Elmo, Hello Elmo it’s lovely to see you” right before he announced “I’m going to tinkle in the bed” which concerned the nurse that was directly in the firing line and then he let rip!

That bits over, time to head home for a whole 3 days – Back on Tuesday for the routine GFR Kidney function and audiology prior to starting the next round of chemo. My mum was good enough to spend the day in hospital with Alex during this testing which meant I could go to work.

Those urine samples that were taken in Emergency and subsequently in the ward have grown some bacterial cultures. Easy to deal with and easy treat, unfortunately… the antibiotic used to treat this is one that reacts really badly with one of Alex’ chemo drugs. After a false start on the antibiotics, the decision was made to postpone the third round of chemo due to start today until next Friday and administer the antibiotics across the coming week. It’s times like this I’m really thankful that we had the best Neurosurgeon and her team in the country, they got so much of the tumour out that there is some time flexibility in Alex’ treatment without compromising its effectiveness.

I think that’s it medically for now, on to the good news

First and very important is the thank yous owed to everyone that’s given us support, love, positive energy and in any other way, shape or form assisted us in staying strong through this very difficult time in our lives. Our families have been incredible, my employers have allowed me a huge amount of flexibility and most recently our former employer Leader Computers held a fundraiser at their office to assist us personally which raised a staggering amount of money in 1 day. I don’t know what to say to them all other than thank you so much, we’re going to use that money to make some alterations to our back yard, making it as safe as possible for Alex to play in.

Speaking of fundraising, our fundraiser for the Little Heroes Foundation has hit our stretch goal of $5000.00 with more to come, recently helped by my sister shaving her head to assist in the efforts. I’m truly staggered, there’s an amazing amount of support out there from community agencies such as the Little Heroes and without the support you have all shown them in our fundraiser, the support we have been given may not be possible for the families unfortunate enough to follow us through this rough and unpredictable journey.

If you haven’t already, please donate – surely that picture has to be worth $10?
Little Heroes Foundation – Fundraiser

Thanks to everyone,
Your love, positivity and support really is helping us get through this.