Round 2, day 4

Sorry for no post yesterday. Day 3 tends to be a bit of a tricky one - and I also had a couple of work commitments which kept me busy. I planned to blog in the evening, but around 6pm we were told we had to move rooms. Because Joshua is no longer infectious, we have had to move into a shared room on the 'high dependency' part of the ward - not because Joshua is high dependency, but because that is where the spare bed was.

I found the process of moving to a shared room surprisingly depressing - which just shows how spoiled we have been so far. I think it is the fact that when you have your own room, you can be loud when you want to be loud and quiet when you want to be quiet. In a shared room you have to think about other people. Which is not necessarily a bad thing - but Josh tends to be a late-bedder and his 'roomie' turned his lights out at 8.50. The other downside to a shared room is that parents are not allowed to use the en suites. So we have to go out the airlock* to the toilet in the parents' lounge, do what needs to be done and then come back again.

[* As it is the high dependency part of the ward where all the BMT patients are (Bone Marrow Transplant - nothing to do with sandwiches...) the infection security is a lot higher. So to get in and out you have to press a green button to open the electronic doors into the airlock; wait for it to close; wash your hands using the facilities in the middle; and then wait for the allotted four seconds before pressing next green button that opens the other door into (or out of) the ward. A bit of a hassle at any point, let alone the middle of the night. The end result was that I didn't sleep particularly well last night as I spent the first few hours lying awake trying to persuade myself I didn't need the toilet...This is why I don't like camping...]

Anyway, one upside of sharing a room is that we have seen how well off we are. Joshua's roomie has been on this journey a lot longer, and has had progressive amputations on his leg and now has it completely removed. He is also undergoing chemo at the same time. It makes Joshua's situation seem a lot less of a deal.

Speaking of Joshua, after a slightly tough day yesterday (day 3 seems to be when the steroids make Joshua antsy and give him a low appetite) today we seem to be back on track. Joshua even did some school work! The even better news is that because today is his last IV chemo for this round, he should be able to come home tomorrow and go back in on Friday as an outpatient for his LP. Hopefully we should then have three clear days at home, before the kids and I head up to Cairns for a week to spend time with my extended family who are over for a couple of weeks. We are hoping that this will be a nice time for the kids to meet up with their friends and reconnect with Cairns a bit. Of course, the risk is that it will be really hard to come back. Hopefully Libby and Joshua will be a draw! Please could you also pray for Libby who will be left holding the baby (not quite literally) for the week during which there is a reasonably high risk of infection. So, please also pray it would be an infection-free week.

A couple of pictures:

Many thanks to our friends the Giles who surprised us with these balloons for Joshua. We hope they are still inflated by the time he comes home! 

Ruben likes to dress up as a cowboy - unfortunately Bethany is the only one that has cowboy-like clothes...

The Perfect Cancer Patient

It occurred to me yesterday that Joshua has four traits that make him the perfect cancer patient.

1) Personality - Josh is generally very easy-going, takes life as it comes, and is very good at entertaining himself. Very useful when your life is turned upside down and you end up stuck in a hospital bed for days on end with not that much to entertain yourself (although probably stacks more than there was a few years ago - praise be for mobile devices...)

2) Health - up until this particular incident, Joshua has always been one of the healthiest in our family (probably tied with Bethany). I can probably count on one hand the number of times he has had an illness of any significance (by which I mean a serious stomach bug or the like). The only time he has ever previously seen the inside of a doctor's surgery was for an ingrowing toenail. So his base position for fighting cancer was and is pretty strong.

3) Eating - Joshua takes after his mother and can pretty much eat anything anytime in any context. Useful when trying to build your weight back up after bowel surgery and chemo, for example...

4) Sleep - Joshua has always managed to cope with minimal sleep. He seems to be both a night owl and an early riser (although slightly less so in his teenage years) and seems to be able to get by no problem if he loses sleep (unlike the rest of us, who tend to crumble in one way or the other if we don't get our 8, 9, 10+ hours kip). Pretty useful with nights on chemo, where he has obs every 4 hours and has to get up to get rid of his 'fluids' every 1-2 hours.

Even though this may not have been part of God's master plan, I don't think He was taken by surprise...

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...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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...