Cycle 2, Day 2

👦Realised I forgot to post yesterday - mainly because Joshua and I spent the most of the evening playing on the Xbox 👦

Yesterday and today have both gone pretty smoothly. We spent most of yesterday at Level 5C (which is the Oncology Day unit) before being transferred up to 11B (the oncology ward). We missed dinner, but were able to order three meals for Josh from the short order menu (he still has the munchies)...

We had a pretty good night, and then were woken at 7:00 to be told that we needed to get down to 5C again for Joshua's 'double intrathecal'. This is basically chemo delivered through a lumbar puncture directly into his spinal fluid. Joshua quite enjoys general anaesthetic now - he says it makes him feel peaceful. When I arrived to see him after he woke up he said, "Do we get to keep the pony when we move back to the farm?" This was his idea of a joke...(This follows an incident shortly after his original surgery where he woke up suddenly from a very deep sleep and had a morphine-assisted completely unintelligible conversation with me. I foolishly confessed to him later on that this stressed me out...)

Anyway, he seems to be responding well to the treatment (at least, he hasn't suffered any obvious side effects - although this is very early days). The current discussion topic is whether to cut his hair short now, or just let it fall out as it will. Our inclination is to cut it short (mainly for housekeeping purposes) whereas Joshua is more inclined to it fall out patchily because he thinks it will be more entertaining that way...

We are settling a bit into the routine (although are aware that the routine is unlikely to remain very long before it changes). Libby and I are taking turn and turn about at the hospital and with the other kids. It is nice to have the vehicle (and nicer to have found some free parking 👦) We also benefit from a transit minibus that runs four times a day between our accommodation and the hospital.

Our main dilemma is still keeping Ruben entertained. He frequently complains that he wants to go back to 'his world'. (In Ruben-speak a world is anywhere you have to go by aeroplane - e.g. 'granny's world'). There is not much that works for his age group, so we are going to have to work out some kind of daily/weekly routine so he doesn't spend the next 3-4 months jumping from screen to screen. Please pray for wisdom for us in this.

A friend (of a friend) has kindly set up a meal train for us, for those who want to support us in this way. Please see https://mealtrain.com/m749o3.

Thanks for your continuing prayers and support.

(By the way, Joshua is feeling a lot better flu-wise - I think that is God at work, considering how rubbish he was feeling on Tuesday).

Relatively 'light' day today

Only five appointments and three tests, two new medications, and hopefully we'll be back home in time for lunch.

We would appreciate your prayers for Joshua. They swabbed for flu yesterday, and confirmed it today (I had 'real' man flu apparently). He has been prescribed Tamiflu - which we have yet to get - but he is feeling pretty rubbish. His pain score for his headache is higher than any he reported post-surgery 😞 It seems a bit much on top of everything else.

(Brief update while waiting for an appointment...)

Backhanded encouragement for worriers...

"There's no point worrying; it's never the stuff you worry about that gets you anyway".

Cycle 2, Day minus 2

Today we got our very detailed, very specific medical education from our liaison nurse. She was off sick last week, but it is great that we have now met her. She is basically Joshua's 'case manager' and so is the one with the big picture and our primary port of call for questions.

So in short, Joshua is planned for 5 rounds of chemo. The first 'mild' one took place last week. The second round starts properly on Wednesday. However, today was spent pumping him full of the 'accompanying' drug to ensure he didn't react badly to it. The good news is that he didn't. Tomorrow will be various tests (ultrasound/x-ray/bloods) which should hopefully be a fairly relaxed and short day before we go in for the real stuff.

Each of the remaining four rounds is a 21-day cycle, with 5-7 days of chemo as an inpatient and then the remainder of each cycle being 'recovery time' while his body (and particularly his blood) recovers from the chemo. Each round will pretty much wipe out his immune system, so we have been told to expect that he will need to be admitted to deal with any infections arising in the 'off periods'.

So a major prayer point (other than his body and mind coping well with the chemo itself) is that we would be able to keep him free of infection as much as possible during this time. We have four fridge magnets with all the warning signs we have to look out for, so we are well primed. In the event of any of the signs, we either call an ambulance or go to ED/ER/A&E and get the fast-tracked gold service 👦 Hopefully we won't need to take advantage of that too often! We have also got a box stocked with all the meds, counter-meds and just-in-case meds for the coming period. I have downloaded an app...


Thanks to all those who are praying and have supported us practically. I am still trying to process and work out everything, but will (time/space/energy/headspace permitting) be in touch with people in due course.

The other thing to pray for, while I think about it, is that despite my best efforts Joshua has picked up 'the cold' (as has Libby) which is making him feel more miserable than is entirely necessary. It would be really nice if this could clear up really quickly so he has all the resources necessary to keep on the path. (The upside of the cold though, was that he had to be isolated for today's treatment, which meant we got a nice room all to ourselves 👦)


There is lots more I would like to write, but we have to be back at the hospital at 8:00 tomorrow, so I should probably make tracks. I will write more when a quieter time comes (ha!) At least now, thanks to generous former-strangers, we now have our own wheels, so we can be a bit more independent with getting to the hospital.

Update (Sunday 20th)

Here is a picture that warms our cockles 👦

After completing his first (short, gentle) round of chemo, Joshua was released from hospital this afternoon, so we have spent a nice evening as a family in our new home (from home). He has to go back at 8.30 tomorrow morning as an outpatient to start his next cycle, but we are enjoying the time we have together for now. 

He is doing very well all things considered. Some of the drugs have impacted his moods a bit, and his appetite (in both directions) but overall he is doing pretty well. 

Thank you for all the responses to my slightly desperate previous post - I may have to set up a database to catalogue them all and make sure we don't drown under the volume of generously provided food 👦To update:

i) we have a car and car seat from tomorrow for 5 weeks, and the expectation of a further vehicle after that time (in passing, I have been very impressed with the Brisbane public transport system, which includes 'busways' - which for those who don't have them are like railways for buses, so there is no congestion. Children also travel free on all public transport (i.e. trains, buses, ferries, trams) at weekends. This afternoon the three kids and I travelled from where we are staying to the hospital in a bus on which we were the only passengers for the princely sum of $2.56 👦)

ii) we have received several offers to come and sit with Josh to give us a break. As things currently stand (i.e. for now and tomorrow) we are OK but will get in touch with those that have offered when we feel like we need the support

iii) my cold is much better (I ran a pyjama-soaking fever in the night which probably burnt off the worst of it...) Unfortunately, Joshua and Libby are both now sniffling - please pray it doesn't hit either of them as badly

iv) we have had some offers for people to help out with Ruben. Again, we will need to assess the shape of the days and weeks to come but will be in touch with those who have offered in due course. Apologies if it takes a bit of time - it doesn't mean we don't appreciate your offers! 

v) We have had lots of offers of meals, including food this evening from the friend of a friend of a friend who owns a Texas BBQ food truck. We laid out about a quarter of what they brought and barely made a dent in it - so some of that has gone in the freezer. I will try and coordinate with everyone who has offered, as we have limited freezer space! 

Following my 'Help!' post, I would also like to recognise the support we have received from Cassy, my Brisbane-based colleague, who has been invaluable in helping us land almost on our feet (even two days ahead of schedule). Thanks Cassy 👦

In case you were wondering about the blankets in the photo, we have discovered that Brisbane is COLD! We had obviously arrived in the middle of a bit of a warm spell - we were a bit shocked to discover a 'real feel' of 10 degrees when we woke up this morning. To us Cairns-ites, who get the woolly clothing at when the temperature drops below 20, it feels like the Arctic. I texted Libby that I wasn't getting out of bed until it warmed up...

Help!

Apologies if this post sounds brusque, I am writing it for the second time. grrrrrrr

My Britishness is having to be laid aside - we could do with some help (survival beats pride).

We have got some much better accommodation, but it is 15 minutes from the hospital. Also I have the worst cold in the history of mankind, so cannot really be on the ward - which means Libby is having to do all the heavy lifting and is getting run rather ragged.

If anyone has any contacts in Brisbane who might be able to help out with any of the following, please could they let us know?

* the short term loan of a car (ideally a 6+ seater, but we can make a 5 seater work)
* maybe a few meals while we are still finding our feet
* a car seat suitable for a 5 year old
* someone who could possibly sit with Josh for while during the day, to give us a break (especially while I can't)
* any knowledge of a good (preferably Christian) kindy in the vicinity of 11 Bramston Terrace, Herston
* anything else that might help us survive that I might not have thought of...

You can email on Daniel dot Simkins (and the usual) at gmail dot com. Or text me if you have my number.

Thanks.

PS. Josh is doing relatively OK - but not clear whether he will get to come home so we can all be together as a family. It would be nice 😞

Thursday

Very quick update before crashing...

Today was a bit up and down. Joshua started the day quite perky, but his central line is still quite uncomfortable, which got him down a bit and made him a bit like a cat on a hot tin roof trying to find a comfortable position. His mood was a bit catching, and everything just kind of caught up at once. It brought home all of a sudden how much you would usually rely on friends in this kind of situation (like we did last week).

However the social worker was quite helpful, and there is lots of support out there. However, finding some local (Christian) friends is high on the agenda...

The good news is that most of the tests done this week have come back reasonably positive. From our quick chat with the consultant it looks like things are on track. He will be on fairly mild chemo this week, before they start with the heavier stuff.

There is also the possibility of some more suitable accommodation becoming available, which would be a huge blessing (although it is likely to be further away, which could bring a different set if problems).

Biggest prayer points are:

* Daily logistics, particularly what to do with Ruben
* Accommodation and transport/travel
* Joshua's physical, mental and emotional well being
* Local support
* Getting to grips with Brisbane