The Best Firefighter Ever!!

Feb25
by Phil Tann on February 25, 2018 at 8:00 am
Posted In: Personal

So in case you missed the news, the papers, social media or generally the buzz around town (I’m still blown away to say this…) but Alex was the toast of the town on Friday and what a day it was!

The public build up started in late January with a call from CCA to the team at Mix 102.3 talking about what is in essence a good news story. From the get-go we had been assured by the team at Childhood Cancer Association (CCA) that if there were any concerns we should bring them forward straight away, a stance taken also by the frontline team at Mix who told us several times that the aims here were for Alex to have an amazing day and for CCA to gain an increased profile moving forward. In fact they proved this to us, particularly on the big day when Alex was getting a bit tired and overwhelmed by looking after Alex first and media wants second – for that we’re very grateful, Jodie’s caring side showed through clearly and Soda’s protectiveness shone!

After the initial introduction to Alex and his story, Alex and I went into the studio to sit with the team and give them some more detail around the story and in essence add the human side to what has been broadcast already. We talked about a lot of things, the fear the pathway from surgery to chemo and ultimately onto radiation. This was used across a couple of weeks in short segments and was my first indication of how big the team at Mix wanted this to be as they were doing the main pieces in peak radio time just after 8 when they’re going to his the biggest audience possible.

The shock to me initially was the amazing levels of generosity that came forward so quickly. This list (taken directly from the Mix website) shows the donated experiences and gifts for Alex (and us) along the last few weeks.

Build A Bear
2 x $100 Build A Bear Vouchers

Zoos SA
1 x family pass Adelaide Zoo
1 x family pass to feed Giraffe
1 x special behind the scenes experience with Kids Zoo animals for Alex

Inflatable World
1 x family pass to Inflatable World Morphett Vale for 2 hours

Adelaide Symphony Orchestra
Prize will be tailored to Alex and his family

Party Poni’s Mt Barker
1 x Party Poni’s Experience

Sarah Hardaker Photography
1 x Family Photoshoot

Platinum Restaurant Services
$500 Cash

Simon Knispel
$250 Cash

McCracken Country Club
2 x night stay for the family

Royal Adelaide Show
1 x Family Value Pack to Royal Adelaide Show 2018
entry 2 adults 2 children, food & drink 4 people, 2 x $10 Show bags, $40 of BankSA Discount Ride Coupons, All day parking

Oak Tree Truffles
1 x Lolly & Chocolate Goodie Box

Lou
Tradie if Alex’s family need help around the house

Kirsty
Holiday House in Stansbury if Alex’s family want to holiday

Olivia Hauser
Horse ride with her horse Pippa or help get in contact with Riding for the Disabled and organise for Alex

Felicity
Her hobby is scrapbooking and would love to make some great fireman style cutouts for Alex’s bedroom; they are layered paper so he can touch and feel the textures on his walls

Damon Wilkie
Owns his own catering company and hire equipment and would like to organise a fully-catered party for the family and friends of Alex including a jumping castle & popcorn machine.

The Mayfair Hotel
1 x Nights Stay at the Mayfair Hotel for Alex’s family

Stella Restaurant in Henley
1 x free dinner for Alex and his family

Ivy & Bean The Musical at Bakehouse Theatre
1 x entry for Alex and his family

The Hindley Bar and Grill
Donating digital billboard on Hindley Street on top of the venue that can be seen as you come over the Morphett street bridge
Donating $150 voucher for the family

This of course – leads to the first lot of Thank Yous. We were blown away by the outpouring of emotion and generosity associated with Alex’s story, he’s just one kid who has been through this and we are so grateful to anyone who has sent messages of support, love, best wishes for his big day.

After a couple of phone chats and another visit to the studio with the whole family, the build up shifted focus from Alex and his Firefighting dream over to the support agencies that help families and specifically CCA. It was this shift and the generosity to the Childhood Cancer Association that took this project from mind blowing (perhaps also a little overwhelming) to thrilling. There were several sizeable donations that really excited us: Alexander Symonds who donated $7500 ($5000 from the company, $2500 from staff fundraising), Bartons Chartered Accountants who donated $15,000 and Halls Cranes who donated a brand new Mazda 3 to the team. As a family who has and still does engage their services, Thank you to the companies involved.

The big day

We had a few quick calls over the days leading into the big event, got the confirmation on timings and when we were expected to be where so we got to the Wakefield St Fire Station around 10:45 and hit the ground running. There were a few logistic things to organise like booster seats for the kids and a couple of media commitments so The Project could get the footage they needed for an article that night.

Then Alex was presented his uniform by the Chief Officer of SA MFS, Greg Crossman and it has to be one of the cutest things I’ve seen in my life!

Then there was nothing to do but to wait for show time for the little man. While we waited, he got into his special new jacket and pants and played in the trucks. What else do you do when you’re a firefighter right?

I recorded the trip down Wakefield St to the site and it’s something to behold. Traffic being stopped by SA Police for us to have safe travel through and a small army of people waving and cheering for Alex as we went past, a surprisingly emotional roller-coaster for me heading to the site. I guess I didn’t realise just how much he had captured the hearts of Adelaide…

The first step once we got there was to get Alex past the pack of cameras waiting for him to the main area of action and get him into his harness, another dose of cute for the day. Then clipped into the Bronto and off he went (I was just there really to make sure he stayed calm) to save the day when part way up we found out that there was someone to rescue: Surprise number 1 for the day for the crowd when Port Adelaide Football Club Captain and all round (except on the footy field) nice guy Travis Boak emerges from the window. Quite the dramatic moment emerging from the smoke to cheers and applause.

We were told once we (to his relief) got Travis on the ground that there was someone else to rescue – Surprise #2 – Erin Phillips

And in half an hour, Alex became not just an inspiration to our family and those that have known him through his journey but to thousands more who now see him as a hero also. I could go on here and there were some formalities that happened shortly after, presentation where Alex got his Fire Chief status officially awarded to him, the Adelaide City Crest and a couple of customised football guernseys (thanks again to both clubs).


Image credits to Keryn Stevens from the Advertiser.

I’d like to specifically mention the $20,000 that the Premier, Mr Jay Weatherill put towards CCA at the presentations.

For us the positives are that Alex had an amazing day, met some wonderful people through the experience and CCA have a massively increased profile from the exercise that will help them continue their work which not just helps, but carries people through a dark time in their lives – I know all too well the dark places in your head when you’re there and they carried me at times too.

For anyone looking for a bit more of a multimedia wrap up, Today Tonight did a wonderful piece, The Project had short piece on that night, Mix 102.3 had a nice little wrap up (below) and were live streaming to their Facebook page throughout the event.

Thanks to

  • Jodie and Soda from Mix 102.3 who had the idea to bring Adelaide to a standstill
  • The team at Mix who made us feel so welcome every time we talked to anyone, visited the studio or had any other interaction
  • Premier Jay Weatherill for granting permission for the traffic management to be put in place
  • Lord Mayor Martin Haese
  • The Government of South Australia for the support to the event
  • Rundle Mall Management for their support of the event
  • Haigs for the use of the building
  • The day wouldn’t have happened without the SA MFS being so accommodating. So to Greg Crossman (Chief Officer), Mike “Mango” Morgan (Deputy Chief) and the whole team involved at the MFS – our sincerest and heartfelt thanks. Alex really felt a part of the team on the day and enjoyed his interactions with everyone
  • SA Police for the escort down Wakefield St and King William to the site – quite a surreal feeling being escorted by Police instead of chased by… KIDDING!!! 😀
  • SA Ambulance for presence and support on the day
  • SA SES who I saw on the day floating around, but didn’t manage to get to say hi
  • Travis Boak and the Port Adelaide Football Club for your presence on the day, it meant a lot to Alex to have Travis there and to me personally
  • Erin Phillips and the Adelaide Football Club, particularly with the injury Erin has been managing for a while – your time on the day was that much more special
  • Rachel Leahcar who made time to come down and introduce Alex to her dog Ella, a much welcomed break for Alex and he’s loving the CD – Thank you!
  • LHD Group for the painfully cute uniforms that both Alex and Jenny are now sporting
  • Tradies Workwear for the ridiculously cute boots both the kids are arguing about wearing to bed!
  • St Aloysius College for the truly astounding student presence along Wakefield St
  • The beautiful Rosanna and team from Today Tonight for articles leading into and after the event
  • The Project for taking Alex’s story national and (hopefully) the CCA awareness
  • The Advertiser for the coverage on the day and day after
  • Any other businesses, organisations or parties involved that I’ve missed or overlooked in any way here…

Finally…
To every single person who attended on the day, sent messages on social media of love and well wishes or in any other way supported the event. Alex has been very excited in the lead up and very content in the wake of the event, for us it’s been overwhelming to see the support and love coming in for our little hero.

Thank you!

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Just another Manic Monday

Feb01
by Jo Tann on February 1, 2018 at 8:00 am
Posted In: Personal

Alex has a habit of having hospital worthy crises on major holidays, but when Christmas, new year and my birthday came and went with no stresses we though he’d broken the habit.
Enter the first day of school.
The morning ran smoothly but as I was collecting Jenny from her first day of school I received a phone call from Alex’s teacher. Alex had tried to climb up on a swivelling stool and had fallen off in the attempt, banging his head on the floor. What warranted the phone call was that when he stopped yelling his speech was slurring. Usually slurred speech means a shunt malfunction – given he’d just hit his head there was a real possibility he’d damaged his shunt. When he got home at 4.15 his speech was still slurred so, given he had a scheduled MRI the next day, I called the hospital since I wasn’t sure if this would mean he couldn’t have the anaesthesia. I spoke the the neurosurgery registrar Alyssa who said to monitor him, if the speech hadn’t improved or he had any nausea or vomiting then to bring him into ED, otherwise they would check him in DOSA the next morning.
His speech if anything worsened by dinnertime and he refused any food, saying he felt sick. So pausing briefly to pack a bag – a pro tip for you here, always pack for an overnight visit when heading into the emergency department and remember a phone charger! – Alex and I headed to the WCH. The wonderful wonderful folks at the little heroes foundation had a carpark set aside for us, which was one less stress, and we presented at ED at around 8pm

Alex, as is his wont, completely charmed all the nurses in ED, and Dr Sarah and Nurse Alice who were looking after us were no exception 🙂 After checking him out x-rays of his shut were ordered and we went to imaging just on 10pm. Radiologist Helen was lovely and despite being really tired Alex had his ‘special pictures’ taken. Back in ED blood tests were required and a canula inserted – terrific fun when Alex was tired and grumpy. He didn’t want to have a bar of it, got himself so worked up he was a little bit sick, so I channelled my inner Skye (Alex’s school teacher who is awesome and doesn’t take any mucking around from him!) gave him a little pep talk and the nurses got the job done.

We were then settled in the temporary ward just off ED. Alex went to sleep and I waited for the x-ray results. The neurosurgery registrar Dr Gareth came in around 11.30 and told me the shunt looked fine, so what Alex probably had was a concussion. Given his history it was likely that the symptoms were more obvious, and the symptoms of concussion were pretty much the same as a shunt misfire.
He gave us the option of either going home or being admitted, given it was 11.30, if we went home Alex would have to be woken up (never a good thing!) have the canula removed, then we’d have to walk back to the car, drive home, get in and unpack then be up again at 5.30 to drive back in for the MRI. So I elected to stay! The only downside for me was that there wasn’t any room on the ward for us until 1am, so I couldn’t settle down and go to sleep. We got the call a spot was ready but unfortunately we had to wake Alex to transport him since he had to change beds. It took a while to settle him back down, then I made my bed and fell into it, until 3am when the nurse woke me to wake Alex calmly so we could do obs without waking the rest of the ward, then again at 5am and then at 7.30.
On the plus side though, it’s much easier to wait for an MRI on the ward than it is in DOSA and we got to sleep until 7.30 instead of 5.30!

We smelt the colours, sang the song and 90 minutes later Alex was back on the ward feeling grumpy. It wasn’t the worst wake up ever, he was quite grumpy and cross but only for 10 minutes, then asked for a cuddle and all was well.
Alex is usually a bit emotionally fragile after anaesthesia so the reset of his shunt was tricky since it took Dr Chris 4 tries to get it to work – the machine has to be in the *exact* right spot and Alex wasn’t a fan of the gel that had to go on his head to make the connection.

THEN we had to get the canula and the tape holding it in place removed, and THEN I had to take Alex downstairs to get his two last immunisation shots!

Alex didn’t like the numbing spray Dr Ian used and he let everyone know it! LOUDLY! and <spoiler alert> he didn’t like the needles either!
These shots, however, have brought Alex up to date with his immunisations for the first time since he started chemo at age 3.

Finally we were all done and headed home – we arrived just as Phil and Jenny were arriving home from her second day of school.

Jenny had a ball on her first day btw 🙂

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Nothing to be sanguine about

Oct04
by Jo Tann on October 4, 2017 at 7:45 am
Posted In: Personal

On the 20th of September Alex had a neurosurgery checkup. Because he’d been admitted for odd episodes a while back he had been scheduled a checkup appointment six weeks or so post discharge, so we dropped Jenny off to Grandma so she could still get to her ballet class (thanks Fran!) and Alex and I headed in. Luckily, though I didn’t know it at the time, I had parked in a regular 2 hour park and put Alex’s disabled pass up, which meant I had a four hour park.

We got to the neurosurgery clinic space and it was jam packed. This was unusual, every other appointment we have had with neurosurgery has been on time and fairly in and out. I know people don’t like waiting, though it’s generally expected to some degree when you have a doctor’s appointment, but in this particular case I was more than happy to. It turned out that the clinic was running late due to two of the four doctors meant to be there having been called into emergency surgery.
We have been the emergency surgery. Given the choice, I’d most certainly rather be waiting 2 extra hours for a checkup.

Of course sitting there for a few hours I’d started chatting with some of the other parents, and when I needed to quickly visit the toilet 20 meters away I was happy and confident that Alex would be fine, and that there were other parents and nursing staff there to keep an eye on him. He was curled up, lying across two chairs with blankie and seemed perfectly fine. I told him where I was going and how long I would be and he was fine with it. However, in the literally 2 minutes I was gone he sat up, announced to the world he was feeling sick and started in on one of his episodes! It followed the same pattern as all the others, although this one was a very mild version, he felt sick, lost his balance, slurred his speech, didn’t vomit, felt fine again, and then had a 10 minute nap.
It was, in a way, kind of handy that he’d done this in the waiting room so the nursing staff could see and report back to the doctor.

When we did get in to see the doctor she went through all of his recent scans, he’d had pretty much everything during his admission – CT, MRI, two lots of x-rays, and a subsequent EEG, and all the results were normal.
The only thing which was out of the ordinary was a marker in his recent blood tests. As of June a marker called C reactive protein, which is usually point something or at most 1 micro grams per litre, was measured at 56 and subsequent tests showed it rising past 90. Unfortunately this isn’t a marker which gives you a diagnosis, as in, if x is raised then it’s y problem – it merely shows that something is amiss, without really giving a huge insight into what that something is.
The doctor we spoke to did say there was the possibility that the raised level was linked to an immune response of some kind, which would fit it well with our own personal theory that these episodes only seem to occur when Alex is unwell, and the timing of the raised protein level coincides with the onset of these episodes.
We both agreed that another blood test would seem to be in order, so after we finished with the doctor we headed upstairs to IMVS for a finger prick test. Alex was very brave and picked up a new word – phlebotomist – after asking if the lovely man taking his blood was a nurse or a doctor.
A quick stop in the cafe to get his reward (a chocolate frog) we headed back to the car with about 4 minutes to spare on our park!
We are waiting on the results now, and are not really sure if they will clarify anything but <touch wood> Alex has remained healthy and episode free ever since!

 

 

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