Another huge update…

Since the last update on Alex’s progress a lot has happened, some good, some bad and some indifferent.

Let’s start with something good!
On the morning of the 22nd of May, Tim Ginever from the Little Heroes Foundation (and Port Adelaide Football Club great) came to our house and collected me on his way up to Mt Crawford Forrest a couple of days before Rally SA started officially. As part of his dual roles for Little Heroes and his radio job at 5AA he was going out to have a hotlap around a special media stage in a rally car, I was the lucky beneficiary of the second hotlap that he really didn’t want!

Being a bit of a rev head and certainly somewhat of a speed freak, it was an opportunity I couldn’t pass up and WOW was it worth it! My ride was in an old rear wheel drive Datsun that went like a scolded cat. I couldn’t believe the speed that we took the corners at, I must have been grinning like a mad man. So I need to say thanks to Tim, Chris and the team at Little Heroes for giving me the opportunity to get out there and have a ride and also to my pilot on the day “Fro” Horobin. Given the chance, I’d do it again in a second.

Back to reality

That Friday, only two days after my ride of a lifetime Alex was back in for his next round of chemotherapy. Now we’re getting used to it, it’s pretty uneventful and very much a routine while we’re in for chemo. Trust me though, not a routine I wish anyone I know to ever have to go through. Rounds 4, 5 (this one) and 6 have a drug called Thiotepa which unlike the other drugs Alex has had, which are excreted through his body waste product; is excreted through his skin. While that doesn’t sound too bad, the worst bit is that every 6 hours regardless of the time he must be bathed to avoid him getting any skin reactions or in extreme cases chemical burns on his skin. So it’s pretty easy to see why when we come out of hospital after 4 days that I’m pretty tired and edgy, I hope that soon Jo will forgive me for being an irritable prick for a few days after while I catch up on sleep and recover.

The routine continued on Monday with Alex’s stem cell return being done in the morning which is very much like a blood transfusion, done via his port as an IV delivery and he know’s nothing of it occurring. But boy do we know for about 2 days afterwards! The preservative they use to freeze the cells in, comes out on his breath and smells like creamed corn. It’s a really odd smell to be lingering in your house for a few days and even stranger to be emanating from your child. But it’s a necessary evil for the good of his long term health, so we deal with it and push on.

Routine checkup, or not…

As per the routine from the last 4 rounds of chemo, we head home on the Monday and we’re back on Friday for a routine set of blood tests in the clinic. On our way in, I was pretty sure that as he was a bit grey in colour and had been a tad lethargic for about 36 hours that Alex was probably in need of a Haemoglobin (red blood) transfusion. I was wrong, unfortunately his bloods were pretty good which really only meant one thing; early stages of infection.

Given the option of either
a. Going home and coming back when, not if… he spikes a temperature and running the risk of having to go in through emergency or
b. Go straight to ward, despite the want to go home I took Alex over to the ward and got comfortable.

We didn’t have to wait long, after a matter of only 40 minutes the temperature began to rise. Once it hit 38.5 the antibiotics that the Oncology Consultant had written up already were started and we settled in for another stay of at least a week. Luckily Alex was pretty tired at this stage so it wasn’t too bad for him having to suffer through another really high temperature.

Even through this, thanks again to parents; this time Jo’s, I was able to get out of the hospital for a few hours to get to an event I want to go see. This time it was a heavy metal event held a club on North Terrace where one of my colleagues and friend from Ausdroid Allan was playing with his band Dawn Heist who came over from Sydney for the night.

The sound they produce is amazing, it’s kind of a cross (sorry for the commercial references guys) between Pantera/Slayer and the later stuff of Limp Bizkit with the real metal thrash and melodic choruses which I really like and fits with my eclectic music tastes. I had a great night and met some awesome people, thanks for the great night to all the bands that performed on the night.

Another infection down, another week away from home. But once it’s one we head home and settle in for at least a few days before we had to go back for review. Review after infections is usually a pretty simple process, blood test followed by a quick check up from one of the doctors which doesn’t really stress Alex too much. But it’s another day in hospital and another day of annual leave from work. So I need to again thank Rohan and Marc who employ me for the flexibility they have given me through this whole ordeal, without it the stress levels would have been astronomically higher and we’d have struggled to get as far as we have without major issues.

A whole 7 days at home without event was lovely, but it was time to go back again for more blood tests, GFR and Audiology testing as per the protocol before each round of chemo. The GFR (Kidney Function) test was excellent, despite the horrid toxins that we’ve been pumping into Alex’s body he has done remarkably well and his kidneys have suffered no impaired function because of it. His hearing on the other hand has continued, however slightly to degrade which is upsetting to us more than it otherwise would be due to his sight loss.

Two days later and we’re back again… Chemo round #6 and the last of his scheduled chemo treatments as per his protocol. The 4 day grind is pretty much the same as the last 2, 2 days of treatment and 6 hourly showers. A rest day on Sunday then the stem cell return on Monday and that weird corn smell, I can’t even begin to tell you how weird that smell is when it comes from your child.

Another thanks to Jo’s folks for looking after Alex on the Friday of this round of treatment while Jo and I met with Prof. Graeme Suthers regarding the potential genetic links between our family histories with Cancer and what is occurring with Alex, as well as the potential for heightened risk to Jenny later in life. I think the initial meeting was very productive and answered a few little questions, but the answers we’re looking for will take some time if they’ve ever actually available to us. Only time will tell, but at least we’re on the right track to get some answers.

Home on Monday from the chemo treatment, back on Friday for the routine review. Here we go again, I even went with bags packed half expecting to stay in again because Alex was a bit flat and bruising easily which is a likely indicator that he needs some platelets. Review done, and yes he needed platelets; but not admission to the ward so off home we went! Have we got away with a round without admission? Finally?

Saturday rolled around and our solar system was due to be installed, the installers rolled in a 7:50am and began work. At about 9:30 Alex woke and and was a tad warm, by a tad I mean a lot! Running a temperature of 37.5 isn’t good for someone who’s not on chemo, for someone who finished treatment only 5 days earlier it’s a very bad thing.

Lucky I had those bags packed and ready to throw in the car, 20 minutes later the temperature had risen to 38.2 so I called the ward and let them know what was going on. Given his history of Febrile Neutropenia the immediate reaction from the doctors was simply to bring him in. So I threw the bags in the car and headed in, but because his temperature was rising so steadily I thought I’d check it one more time and if it was 39 or over not to mess around and just call an ambulance, of course just to mess with me he was right on the cusp of that 38.9

So on a pretty cold morning I drove to the hospital with the windows all wide open to try and cool Alex off a bit, it worked! When we went through emergency, his temperature was down to 36.8 but it appears my temperature was down quite a bit too… One of the doctors observed that my jaw line was blue. At least the access and initial check in process was done with a minimum of fuss and bother because one of the ex oncology nurses who know’s Alex was on duty at the time.

We didn’t have to wait long for the temperature to go back up, by the time they accessed his port and got the antibiotics written up and started he was already at 38.6 and climbing. So up to the ward we went, Alex went to sleep and a short time later on a round of obs being done on patients his temperature had jumped to a scary 40.1 degrees. Panadol and patience is what’s required now, a huge thanks to my Mum too for staying in with Alex that night and Jo’s folks for staying with Jenny while Jo and I had some much needed time to head out together and see Adam Hills show Happyism.

I haven’t laughed like that in months, and I don’t think I could actually recall a single joke that he told on the night. It’s more about story telling and experience with Adam than reeling off one liner jokes, but he’s got to be one of the funniest men on the planet. He’s just so clever with the way he presents things and clearly loves what he does, and loves coming back to Adelaide.

Only a 6 day stay in hospital and Alex’s blood levels were recovering well and he was starting to eat pretty well. So we headed home on the Friday morning just in time for the weekend. After such a long stretch with very little time at home, it was SO good to be home. We’ve had several weeks at home now which has been fantastic, we’ve restored some normality to routines and he’s been eating pretty well… if you consider eating about 2 litres of icecream and a couple of loaves of bread with garlic butter on it a week “eating well”

So that’s about it from the last six and a bit weeks and here I am, sitting in the cafe at the Women’s and Children’s hospital waiting for Alex to return from the MRI he’s currently having. THE MRI that will tell us if the chemo has done it’s job and if the last six months has been worth the struggles, stress and general hard time we’ve been enduring. At the moment all we can do is wait and hope, the report should be written on Monday, we should get the results on Tuesday.

Closing off I need to say thanks again to anyone who’s called, messaged or emailed us with messages of love and support. It’s meaning more and more to us each day as we get closer to the end of this journey, if it weren’t for the amazing support from all avenues of our lives we would not have been able to get as far as we have. Keep everything crossed for us when we get the results of this MRI on Tuesday and we will try to get an update out ASAP to let everyone know what is going on.