Phil Talks Tech

Random Tech Talk: Geek it up!
  • About
Facebook LinkedIn Twitter Google+ YouTube RSS

Donate here

Help me fund this server so I can continue to blog and keep everyone informed on our journey.

Recent Posts

  • A quick update
  • So you know how we had a plan…
  • 2020, just when you think it can’t get worse…
  • Can you hear me?
  • A slight hiccough…

Recent Comments

  • Romana Challans on Nothing to be sanguine about
  • Ivon Gregory on About
  • Chris on Technical Opinion: Allo may be more than it appears to be!
  • timelady on Technical Opinion: Allo may be more than it appears to be!
  • Antonia Blakeborough on Twas the day before Christmas…

Categories

  • Android
  • Charity
  • Computing
  • Hardware
  • Linux
  • Mac OS
  • Networking
  • Operating Systems
  • Personal
  • Uncategorized
  • Windows

Subscribe to Blog via Email

Enter your email address to subscribe to this blog and receive notifications of new posts by email.

Join 10 other subscribers

Meta

  • Log in
  • Entries RSS
  • Comments RSS
  • WordPress.org

My Rides

School Holidays? When?

Jul28
by Jo Tann on July 28, 2018 at 8:30 am
Posted In: Personal

In the main, like most parents I suspect, I find the looming prospect of school holidays somewhat daunting. Two long weeks with children who seem to have been given a challenge to see how much of a mess they can make before mamma catches them, and then how much more of a mess they can make somewhere else whilst mamma is cleaning up the first one. To see just exactly how far they can go teasing one another before mamma has to step in, and to see how long they have to practice selective deafness before mamma gives up and just puts the shoes/toys/books away herself.
In an attempt to ameliorate this, I try and fill the holidays with ‘adventures’ like a trip to the shops or playground, I build up a stash of new toys in the week or so prior to holidays and bring out one new one every other day (it is truly amazing how engrossed a small child can be when given some new lego) and I scour the local council website for activities which they both can do (unfortunately fairly few).
This time around however the entertainments were taken care of for me, courtesy, in the main, of the Women’s and Children’s Hospital.

 
We had a warm up visit the Monday before school holidays started – an all day test in the endocrine department – a glucagon and arginine test. This test will establish Alex’s growth hormone levels so they know just how much he needs to be brought back up to normal. The worst part was getting a line in, after that it was plain sailing. Alex was a bit out of practice at having a canula put in and after a lot of procrastination on his part and (failed) persuasion on ours, we ended up having to hold him still for the doctor to insert it. Once the tears dried and the blood was cleaned up we started the test, which involved an injection in his thigh and then blood draws every half hour or so until midday, then an infusion of arginine and blood draws every 15 minutes. Once the line was in and he realised he could sit and listen to his ipad and victor reader Alex was as happy as Larry! since the canula was in he didn’t really even notice the blood draws, and the rest of the day went pretty smoothly. We should see the results sometime next week, then we will meet with the lovely Dr Jan and figure out what to do next.

 
Then holidays were upon us. Monday was pretty quiet but Tuesday was an MRI, we were on the afternoon list so it was an all day event. Alex had a bit of a rough wake up from the anaesthesia, and the neurosurgery team apparently had a concern about his shunt and had asked for an x-ray. By the time Alex had calmed down he just wanted to go home, they had managed to reset the shunt, so we were told as long as the x-ray was done inside a week it was fine so home we went.

 
Wednesday saw us back for a Neurosurgery checkup with the wonderful Dr Cindy, normally we wait for 3 or 4 days for MRI results but she was able to look at the scan and its notes and tell us that all was well. There is no inflamation around the tumor sites and the tumors themselves showed no change. <cue happy dance>

 
Thursday brought us to a hearing test, fortunately this was at Modbury but unfortunately it showed a degredation in his hearing. Kira offered us a trial of a different kind of hearing aid, still a bone conduction unit but a more powerful one. These had to be sent from Sydney and were required to be returned inside of a week so Alex would only be able to trial them for a few days but it seemed to be the most logical next step, so Kira put in the request and said she would let us know when they arrived.

 
Friday took us to an oncology checkup, the doctor was happy with the scan results but agreed with me over our concerns with Alex’s hearing. Ever since he had grommets put in he’s had an ear infection and recently his hearing has deteriorated. A swab was taken of Alex’s ears and the doctor said she would follow it up with ENT.

 
On Saturday Phil took Alex to get his x-ray done, it showed that it was set to the correct number and all was well, so that was one less thing to worry about.

 

The Tuesday of the second week of the holidays held another trip to town, but this time for a much nicer reason. Alex and I made two big batches of brownies the day before, and on Tuesday we took them into the Wakefield street MFS station as a thankyou to all the wonderful firefighters. Alex’s big day was so overwhelming and packed full of activity that we didn’t get much of a chance to sit down with the MFS guys and have a chat and say thankyou, so it was really nice to see them all again in a far more relaxed setting. Our visit that day turned out to be quite poignant in it’s timing, Greg Crossman (the actual chief of the MFS) who had given his job to Alex for his special day so he could be fire chief, had, on the day of our visit, announced his retirement, so it seemed fitting that chief Alex had dropped in to say farewell.

 

Wednesday and Thursday Alex and Jenny had a sleepover and play day with Grandma and Grandpa, so all in all I think I only really had 4 days of school holidays, which wasn’t hard to cope with at all!

 

We were able to collect the trial hearing aids for Alex on Tuesday afternoon the week school went back, they were somewhat space-age looking and stuck out a bit from the band they were attached to, however the difference in Alex’s hearing was amazing! Alex was able to wear them to school on Wednesday where they made a significant difference to his classroom activities. We had to return them on Thursday sadly, but Kira is going to try and obtain funding to provide Alex with hopefully 2 units of his own. After returning the hearing aids we headed in to the Women’s and Children’s again, this time for an ENT appointment.

 

This is where it gets a little heartbreaking. Alex had fluid buildup behind his eardrums back in 2016, this is a normal enough thing for kids his age and grommets were prescribed and inserted, but this did nothing but perforate both his ear drums and give Alex an ear infection that is still with us today. The odds of bi-lateral perforations is somewhere in the order of 1 in 200,000 but Alex seems to have a thing for long odds, it’s just in this case being the 1 isn’t a good thing. In discussions with Dr Michael we have pieced together what we think has actually happened. The fluid Alex had behind his eardrum was not caused by any of the normal reasons that most kids get this condition. It is a result of the radiation treatment which saved his life. Putting grommets in released the fluid but it also allowed bacteria in, causing a secondary infection in the discharged fluid. The damage done by the radiation to Alex’s tissues mean that the eardrums can’t heal themselves, and any surgical intervention relies on the tissue regrowing onto an inserted matrix. We don’t know why or what at this point is causing the hearing degradation but Dr Michael has organised another appointment for us in 2 weeks to meet with him and a specialist surgeon to try and figure out what to do next.

 

We have also have an update on Jenny for you, we have an official diagnosis! She does in fact have Silver Russell syndrome, but she has the rare ‘10% of cases’ version of it. In laymans terms as far as I understand it, Jenny received both of her two copies of chromosome 7 from me, rather than one from me and one from Phil. The medical term for it is uniparental disomy. The chromosome 7 version of SRS seems to be the less nasty of the two, the only issues stemming from it are the ones we have already observed – small in stature and some language/speech delays. So it looks very likely that Jenny will be joining Alex on the growth hormone train and the NDIS rollercoaster, and Phil and I will be along for the ride.

 

Share this:

  • Facebook
  • Twitter
  • Google
  • Reddit
  • LinkedIn
└ Tags: ENT, MFS SRS, MRI
Comments Off on School Holidays? When?

Same Rollercoaster, Different Theme Park

Jun04
by Jo Tann on June 4, 2018 at 7:30 am
Posted In: Personal

On Thursday Alex had an appointment at the hospital, but it was the start of a new chapter in our journey, we were starting with our fourth department at WCH – endocrinology.

It’s a somewhat blurred starting line, since technically we have been visiting the endocrine department for a year or two, it’s just been for Jenny. This time it was Alex’s turn to meet Dr Jan, a very lovely doctor, who in fact brought forward Alex’s appointment (it was scheduled for October) after a chat I had with her during Jenny’s last appointment!
A quick exam and a slightly longer chat about Alex’s history brought forth a few conclusions. The little pot belly Alex has gained after he finally started to put on some weight is apparently a classic physical symptom of growth hormone defficiency, his lack of growth since radiation therapy was a definite clue too 🙂

Long story short, he’s pretty much a slam dunk for being growth hormone deficient but there are still some tests to run before we can make a start on treatment. Thyroid and cortisol levels need to be checked as well as the growth hormone levels, as the pituitary gland in the brain is responsible for their production too, and the pituitary gland is what the radiation therapy has apparently done some significant damage to. Thyroid and cortisol are checked by blood tests but checking growth hormone levels mean a day in hospital with a line in. Drugs are given to stimulate the body’s normal production of growth hormone (this usually happens overnight so to see it during they day they have to artificially trigger it) and then periodically more blood samples are taken to see what the levels of growth hormone are.
The good news is that thyroid and cortisol balancing drugs are tablets – no worries there.  The bad news is that the growth hormone treatment is a daily injection, which Phil or myself get to administer.

There is an increased risk of cancer with growth hormone therapy, however if you are growth hormone deficient and the treatment is just to bring you up to ‘normal’ levels then apparently that risk doesn’t necessarily apply, it’s when you go past your normal levels that you have to worry.

Before we can start on the treatment a few baseline levels need to be checked, so we left Dr Jan with forms for bone growth x-rays and blood tests.
Getting the x-ray of Alex’s hand was fairly straightforward, no big dramas, but Alex was a little on edge because we had to leave Dr Jan’s office before he’d finished doing all the puzzles. One of the quirks of Alex’s behaviour is that generally speaking he’s pretty calm and happy but he’s very procedure driven. He sets out a list of things he wants to do, and in what order, and if that list is disrupted he can have a bit of a melt down. We have learned how to talk him down off the ledge as it were, but he’s usually pretty emotionally fragile for a time afterwards, and if subsequent events upset him, what in other circumstances would be a bit of a fuss but nothing major, results in another meltdown.
Interestingly when I mentioned this to Dr Jan she said that it’s quite common to see behaviours like this in growth hormone deficient kids and that sometimes the application of treatment can have significant positive effect on behaviour.
Fingers crossed.

From x-ray it was on to the blood test. I had a form for both Alex and myself to have blood drawn, since there was a test we needed to have run to answer a question with regards to Jenny. There’s only one more disorder to rule out before the experts can say ‘we don’t know why, she’s just little’, it’s called Silver-Russell syndrome. Jenny had a blood test a while ago which didn’t show evidence of it, but there’s a rare (5-10% of cases) version of it, and to test for it you need a sample of the patient’s parent’s blood. As far as I understand it, they are checking to see if, instead of getting one version of a chromosome 7 from each of us, Jenny got both of hers from me.
<https://www.healthline.com/health/russell-silver-syndrome>

Alex decided I could go first and he would help me be brave. When it came to his turn however things didn’t go quite so smoothly, being a little fragile already didn’t help and he really didn’t like the tourniquet – that bothered him more than the needle I think. In the end the first needle was moved to much by his jumping around to get a blood draw and they had to do a second one. Thankfully that one went smoothly and the tests were done for the day.

It was not however the end of our adventures at the hospital. As you may know Alex has two perforated eardrums as a result of the grommets he had a while back. Unfortunately the damage done to his tissues by the radiation treatment mean that they simply won’t heal on their own, and at this point, nothing much can be done about it. The big problem for us, as well as not being able to hear, is that the perforations allow bacteria in, and Alex is living with more or less constant ear infections. We keep them at bay as best we can with antibiotic drops, but we were literally down to the last few drops and we had run out of repeat prescriptions.

We went in search of nurse Lorraine in the ENT department and were exceedingly lucky and found her. I need to say at this point that there aren’t enough ways to describe how amazing, wonderful, fantastic and increadible nurse Lorraine is. She knew that the ENT doctors wouldn’t be in until 2pm (it was currently 12.45) so she rung and paged until she found one of the registrars, and rung and paged until she arranged for the delivery of Alex’s notes, managed to get both of them to the ENT outpatients desk where we were, and then gave the lovely doctor who arrived enough information that he was happy to write us a script.
We then lodged the script at the pharmacy, had a half hour wait for it to be filled, which we spent in the cafe, and then finally made it back to the car with 5 minutes left before the time on our park expired.

Thinking we were done until the test results had been returned and assessed I was a bit surprised to get a call from the oncology registrar on Friday afternoon. Since Alex is still an oncology patient, his blood results had been sent to them as well as the endocrine department, and they had a concern about his haemoglobin levels. Alex’s last blood test in January had shown levels of around 120 (normal levels for kids his age are around 140 – 160) but Thursdays test had come back with his level currently sitting at 88. To put this in perspective, when Alex was having chemo if his levels hit 60 he’d be given a blood transfusion.
Obviously a level of 88 was a concern and the doctor asked if we could bring him back in for another test, just to see if the haemoglobin level was still low and to see if any other parts of his blood spectrum were low as well. He said there was no rush, as long as it was done by Monday or Tuesday it would be fine. :/
So Phil took Alex in on Saturday before taking him on to his restless dance lesson, and since Dr Jan had given me a form for Phil’s blood test for Jenny, Alex was able to help daddy be brave too before having to have his blood taken again.

So now we wait, hopefully not to long, for the results of 3 blood tests and one x-ray.

While we are waiting we get to experience one of the little joys which came from Alex’s day as a firefighter, we are taking Alex to an Adelaide Symphony Orchestra rehearsal where he will get to meet some of the musicians and the conductor!
Alex is looking forward to it, and has already been practicing his conducting skills.

We’ll let you know what happens on this ride, hopefully there won’t be any loop-de-loops on this one!

Share this:

  • Facebook
  • Twitter
  • Google
  • Reddit
  • LinkedIn
└ Tags: #bestfirefighterever, endocrine, growth hormone
Comments Off on Same Rollercoaster, Different Theme Park

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.

Catch Up: Fireman Alex says thank you – thousands turn out in the city to see a brave boy’s wish come true. #TTAdelaide #BestFirefighterEver @RosannaMangiare @Mix1023 pic.twitter.com/LaWkHGcsld

— TodayTonightAdelaide (@TodayTonightSA) February 23, 2018

Thank you, Adelaide. Thank you for your generosity, your cheers, and most of all thank you for saying yes when we asked for your help to make a little boy's dream come true.

Please continue to support the great work @childhoodcancr do for over 400 families just like Alex's. 2/2 pic.twitter.com/Z2nZbrMuFw

— Mix102.3 Adelaide (@Mix1023) February 24, 2018

When life throws a massive curveball your way, what do you do? Shut down the city of Adelaide and take over the fire department, of course! #MakeAlexsDay #BestFirefighterEver #TheProjectTV

To help kids like Alex and their families, head to https://t.co/5s1AjiYzsh pic.twitter.com/2MRgF20hll

— The Project (@theprojecttv) February 23, 2018

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!

Share this:

  • Facebook
  • Twitter
  • Google
  • Reddit
  • LinkedIn
└ Tags: Alex, Best Firefighter Ever, Make Alex's Day
Comments Off on The Best Firefighter Ever!!
  • Page 4 of 24
  • « First
  • «
  • 2
  • 3
  • 4
  • 5
  • 6
  • »
  • Last »

Tags

Alex is awesome Alex Update ambulance ride Awesome wife Blood tests Cancer Sucks! Check EVERYTHING Chemo round 4 christmas Depression Easy config for SSH ENT Ethernet Even dumb switches can kill your routing Fundraising GH good results Grommets learning new things Lifehacker Recommended This! Little Heroes Foundation Mens Health Movember MRI MRI results MRI Scan network New toys overcoming minor issues Password-Less ssh passwordless ssh Personal but important Prostate Cancer Radiation Therapy Raising Money Raspberry Pi ssh config files Steep learning curve Surgery Terminator Thank you Update Useful Tool vnstat Vomiting

©2012-2021 Phil Talks Tech | Powered by WordPress with Easel | Subscribe: RSS | Back to Top ↑