Sweet(ish) Sixteen

Happy Birthday, Joshua! 

Probably not the kind of birthday that any of us would have predicted a few months ago, but still pretty good as birthdays go. Joshua managed to get in pretty early for his lumbar puncture (around 10.00am), which means he didn't have to starve quite as long as last time. However, he was a bit more groggy afterwards and not so hungry - so he still has half his ham and cheese sub left in the fridge!  

The nurse kindly took a photo of us before Joshua went into theatre. There is still a vague chance that Joshua has something cold-like, so he is still on 'droplet protection'. This means he gets to wear fancy headgear when he goes out and about in the hospital. 

I am just in my normal clothes 👦

Joshua opened one present before going down for his surgery, and then was very disciplined and saved all the rest of them for when the others had finished school.

Here is the full bunch of bananas...

Below is the present that Joshua has wanted for the longest. Because we left Cairns in such a hurry he thought we hadn't been able to buy it, but fortunately I had managed to pick it up on the Saturday before we left (last one in the shop - the one on display). So it was even more enjoyable to bring it out as the, 'Oh look, there's one more' present 👦

Joshua's preferred solution to the hair loss issue

'Everybody noticed it, but no one wanted to mention the Trump in the corner'

Day out (and back in)

So yesterday being Joshua's last day of freedom, I decided we should try and get out and about. Googling the nearest and easiest to reach green places, I found the 'Mount Coot-tha Botanic Gardens' (Mount Coot-tha being the highest point in Brisbane - although at 287m it's 'mountain' label is slightly dubious).

As we only have a five-seater, I drove the boys while Libby and Bethany took the bus and train to the nearest station. Should be simple, right? 👦

Why is it that you always believe the sat nav over the evidence of your own eyes? Or is it just me? Even though I could see the sign in front of me saying to turn right to the Botanic Gardens, as the sat nav said turn right in x00 metres I, of course, waited. Unfortunately, by that time there was no right turn and I was heading South on the M5...So, of course, we added an extra 10 minutes on our journey doing the old 'exit at the next junction, go round the roundabout, go back the way you came' trick...

We eventually found where we were going, and I dropped off Joshua and Caleb at the gardens and then went looking for Libby (taking Ruben with me, much to his annoyance - our level of trust with Ruben is not that high at the moment...) Libby and Bethany had helpfully left the station and found their way to a hospital close by - the theory being that this was a better landmark to find. Which I did, but unfortunately it was rather a large hospital so it took rather a lot of mobile phone communication to actually find each other. But we did eventually, and then we trekked back to the Botanic Gardens - coming within a hair's breadth of repeating the whole 'M5' experience. Libby agreed that the signposting was not entirely clear (so I retained some self-respect...)

So about an hour and a half after leaving, we all ended up together at the Botanic Gardens. This was about ten to four, and reading through the guide we discovered that most of the exhibits closed at four... The other unfortunate thing was that by the time I got back with Libby and Bethany, Joshua was already beginning to fade. However, he gamely walked around pushing his wheelchair for a bit before sitting in it for the rest of the trip. The gardens were a bit of a let down really - although maybe in a different context we would have enjoyed them. The cafe was closed for renovations, which was a major downer - coffee and ice cream were significant drawing factors in the first place. The sun also chose to start hiding at around four, which also made us less inclined to hang around.

So what with all that, after about half an hour we decided to call it a day. I ordered an Uber for Libby and Bethany on the way back and the whole thing took about 10 minutes. Some things are just worth paying the money for...

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So it's Sunday and we're back in the hospital. Libby was slightly disconcerted to arrive at the hospital at 8.30 this morning (Uber again 👦) to find that no one appeared to be expecting them. However, I think they finally worked out that Joshua was supposed to be there, and told them to come back in an hour while they played musical beds with the very full ward so Joshua could have a room. (Very glad that Joshua is still sniffing, otherwise he would probably have ended up sharing - he has standing instructions now 👦).

This gave Joshua the opportunity to see bits of the hospital he hadn't seen, like the school and the rooftop gardens. It was a good day to do it, as Sunday is always nice and quiet.

Eventually they got into a room and we started Round 2 - which is remarkably similar to Round 1 - except that we are probably a lot more relaxed about it, as we know what to expect and know that as he is not on any new drugs he won't (God-willing) have any new side effects. Still, we are praying for each drug as it gets infused.

Thank you for your ongoing support and prayers. Please keep it up. Despite what I might have written in earlier posts, I don't claim to be a prayer expert and do believe that prayer is impacting Joshua's condition during this treatment.

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Because I may not have mentioned it before, Joshua's hair is now getting quite thin - and very soft, like a baby's 👦 The first few days of it falling out were a bit of a nightmare - a bit like having an ill-groomed dog moulting in the house. The rate of loss seems to have slowed down now though - not sure whether it will pause now until the same point in the next round, or continue to fall out. Either way, we have the beanies ready 👦

A pretty good day

Day minus two of round two today...

The doctor was very pleased with Joshua's progress this morning, and all his bloods are up on Tuesday's - his neutrophils are up to 0.87 (below 1 is 'neutropenic', which is medical speak for 'naff immune system'). His swab taken on Tuesday also came back negative for the 'RSV' (Respiratory Syncytial Virus) which he apparently had after his flu. This meant that today was not spent in total isolation with all medical staff gowned and masked! The doctor was again, very impressed that he had managed to shake it without virtually no immunity. He said Joshua was 'very lucky'. I said we thought there was a different reason - i.e. people on five continents praying for Josh!

Josh has also put on another 1.3kg since Tuesday (after putting on 1.3kg between last Friday and this Tuesday). All kudos to Libby's 'constant feeding' programme 👦

This day went very well - after obs and waiting for the blood test results the OK was given to start this round of chemo which kicked off around midday. It should have taken 6 hours for the chemo and another hour of 'flushing', but for reasons that are not entirely clear Joshua and I managed to escape the hospital by around four fifteen. We were not complaining!

Please do pray for this next round of chemo which starts officially on Sunday. The schedule (or 'protocol') looks this:

Probably more info than you needed and only interesting to medics! The most 'interesting' point is that the 'Double Intrathecal' is a lumbar puncture where they bung doses of chemo drugs directly into his spinal fluid - so Joshua will have the dubious present of a spinal tap on his 16th birthday on Monday...

We hope to be able to make the rest of the day a bit more enjoyable 👦

As a point of interest, the protocol that Josh is being treated with is called R-COPADM (after the initials of the chemo drugs used). The other day I told the doctor that they should try adjusting the protocol to be R-COPADM-P - with the -P being for Pringles (which Joshua has been binging on since he started treatment). Libby pointed out that the -P should be for prayer, which I have to admit probably has more impact than the Pringles 👦

V. quick update...

Doctor was very impressed with Joshua's progress, sufficiently so that (subject to further bloods, chest xray, abdominal ultrasound and heart echogram) Josh will probably start his next round of chemo on Sunday.

Three of four of his blood results have started to increase - with only the neutrophils continuing to drop - I didn't think it could go much lower than 0.27, but apparently, it can! I don't think it can go much lower than 0.06 though...

But the other numbers are sufficiently OK that the doctor is happy to go ahead. So the plan is:

* tests tomorrow and Thursday (or just Thursday, if we get really lucky)
* in at 7.15 on Friday for 'Day -2' - which will be a pretty long day
* hopefully we should then be back home for Saturday before
* going in as inpatients on Sunday for the main chemo (hopefully not quite so early in the day!)

Keep up the praying, and thanks for your support 👦

Still here...

So Joshua is still going strong. A few headaches and his mouth is still a bit sore, but no signs of infection or any of the other warning signs. Wishing we'd taken the consultants bet now 👦 We are in tomorrow for bloods and another consultation. Will be interesting to see what he says...

Joshua is delighting in grossing us out by pulling out clumps of hair - he has been waiting for this...He has been ordered to carry a plastic bag around with him, otherwise it will be like having a moulting dog in the house 😒

The other possible answer to prayer is that we have signed Ruben up for a kindy. We were completing the paperwork for the one at the Mater Hospital, and I took it to the Family Support Officer where we are staying to ask her to act as our 'emergency contact number 2'. She mentioned that several families send their kids to the kindy round the corner (literally - 3 minutes walk). So Libby popped round there and they are happy to take him for up to 4 days a week! He will start on Wednesday - please pray that he will be happy there, as this will make things a lot easier generally.

My two pocket WiFi devices arrived today (long story) so at last we are on our own internet...now just have to work out how long 10GB can last. Videos are banned...

Father's Day / Circus Quirkus

It's Father's Day here - I realised I am a chip off the old block when I got a bucket of Liquorice Allsorts - that was always the go-to present for my Dad 👦

It was a pretty good day. One advantage of being a 'cancer family' is that we get given free stuff - Caleb picked up tickets to 'Circus Quirkus' at the Brisbane Convention Centre, so me and the other kids went this afternoon.

It wasn't quite what I expected, but it was fairly entertaining - and good value for free 👦 There were only six people involved - an MC/ventriloquist/comedian, a clown, a juggler, two gymnastic type ladies and a 'generalist' lady. The last was probably the best - she did an encore which included lying on a special table on her back and juggling 5 large balls with her feet, followed by juggling a table (with her feet) and then stacking 7 suitcases (with her feet). Pretty impressive stuff. Some fairly terrible photos below...

Joshua still seems to be doing OK. He hasn't needed any anaesthetic mouthwash today and is still eating well. When we came back from the circus he and Libby met us half way from the bus station, Joshua having decided he wanted to go for a walk - which was quite an encouraging sign. Thanks for your continuing prayers. If we manage to keep him out of hospital until Tuesday, I think prayer will be a major contributing factor!

Blood

Today we went in for bloods for Joshua, and as expected they were looking fairly rough. However the doctor was impressed that Joshua was sitting on the bed munching on Pringles (he craves salty food at the moment, as it counteracts the funny taste in his mouth from the steroids). He still predicts that Joshua will have to be admitted for some infection or crisis before our next appointment on Tuesday. It would be nice to confound his expectations, but we are trying to be realistic 👦

In this kind of scenario one learns more than one ever wanted to about blood...and being the kind of person I am, there has to be a spreadsheet and a graph. For those who are interested, this is where we are today:

Still hanging above the transfusion lines, but definitely heading in that direction (which is very normal). The right hand two graphs indicate that Joshua has virtually no immune system - so please keep praying that God will keep infection at bay by other means.