Sunday

Another good day. Joshua and I went down to the Esplanade again this morning after breakfast (Joshua walked most of the way, pushing the wheelchair) and the other met us down there. We wandered along to Muddies playground for a bit and then wandered back to the hospital. I took the others home for lunch, and we moseyed around at home for a while (I managed to get the lawns mowed - which was my aim for the week!) and then headed back to the hospital where we had a nice dinner provided by more friends (along with the gingerbread family - see below). 

Joshua is much better, and other than low energy levels and a bit of limitation on mobility and strength, he is pretty much back to his old self. Unfortunately, he keeps making jokes that make him laugh, which is rather painful. Ruben caught onto this and started doing funny things to make Josh laugh - I don't think he quite got how much it probably hurts! 

We are very hopeful that they will parole him (sorry, discharge him) tomorrow so he can have a couple of days at home before we head down to Brizzie. Joshua keeps asking, "Why am I still here?"!

Just so you know how much Josh is slumming it, this is the bathroom of the room he has been in all week:

And this is the rest of the room (you can see my/Libby's bed in the corner):

This afternoon he obviously got knocked off the VIP spot, and was moved to a much smaller room. With a shabbier view...

And for the sake of posterity, here is our gingerbread family:

We keep finding it a little bit odd how the whole situation isn't seeming like that much of a big deal - this is Joshua's perspective, and it seems to be catching! I keep wondering whether we are in denial, or missing something! 

I was thinking about it while I was mowing, and I realised that someone who has cancer is actually quite different from someone who is dying from cancer. I suspect our feelings would probably be a bit different if the news had been worse. But I hope we would still have been hanging on to God. 

The Real Stuff

Having got all the practical and physical details out of the way, I thought I would write something about the 'real stuff'. Most people ask us, "How are you doing?" It's a fair enough question, but not that easy a one to answer.

I guess the bottom line is we are doing OK. We have questions, thought processes and emotions as you might expect, but none of them are taking us beyond breaking point.

In the past, when other people have faced hard situations a bit like this I have always wondered, 'How do they cope? I have been a believer in the fact that God gives you the resources you need to deal with any situation you face (but only when you have to face them - which is why anxiety is a bit of a killer, as you are anticipating hard situations without the resources to face them). As I said to my brother, I'm about to find out whether it's true!

And to be honest, it does seem to be. I was thinking this morning that, although this may be a hard road we have suddenly found ourselves on, we can only face it just like any other road - one foot in front of the other.

We are taking one day at a time, partly because that is all we know about - but I do think that is probably how God wants us to live all the time anyway. My children when they were young always asked, "What are we doing today, Mummy?" God says we are to live like little children, and I think that is what he meant (amongst other things). If there is one thing I have learnt in the last couple of years it is, "Don't worry about tomorrow". Although I have to confess occasionally that is only a theoretical lesson learned!

[WARNING: those allergic to possible heresy may wish to avert their gaze at this point]

The situation has also raised questions about prayer, and specifically whether there is any point to it. I completely believe in the importance and value of prayer in the sense of 'keeping talking to God', but I guess my questions are about 'supplicatory prayer'. For me my thought process goes something like this:

a) God loves me (and Joshua, and everyone) more than I can possibly conceive. (I wrote recently that if we could comprehend even a pin prick of how much God loves us, we would be overwhelmed)
b) God knows everything that was, is and is to come, he is the 'ultimate intelligence.
c) God works all  things together for the good of those who love Him

So why ask God to do particular or specific things? If these things are all true (and I believe they are), then surely praying to Him to do a particular thing is merely interfering or teaching your grandmother to suck eggs? God knows best, He loves us, and He wants the best for us - so surely His ideas about what is the best course of action are the best anyway? Surely the only prayer to pray is, "Thy will be done"?

Having said that, it does say that 'the prayer of a righteous man availeth much', so there must be something to it 👦

So, if I was wearing my normal spiritual hat, without the above thought processes, and for those who have a better understanding than me about these things, please pray:

* that Joshua continues to recover from the surgery as well as he has been
* that he is sufficiently recovered so that he can come from for a day/night before we have to travel down to Brisbane
* that the timing of further treatment is such that we are able to be back in Cairns for the second half of September when my entire immediate family is coming to visit
* for the best possible future diagnoses and that the treatment generally is bearable for Joshua
* for all the logistics and arrangements for going to Brisbane/being in Brisbane/schooling, etc.

Personally, I am praying these following things, and you're welcome to join me:

* that this experience would be something that builds huge amounts of strength and character in Joshua, and is the beginning of a beautifully close relationship between him and God
* that Libby and I are able to learn positive things throughout the process as well, and move closer to Him despite any questions we have
* that we would remain strong and get stronger as a family unit throughout this situation

I guess the difference is that I am praying more for what God can do in us, rather than what we think He should do for us.

We love Joshua, and our Daddy loves us all 👦


(By the way, this is mostly a rhetorical 'blowing off  steam' post - so no need to let me know the answers 👦)

Saturday

Another really good day. Josh is no longer plugged into anything and is now only on the occasional oral pain medication. He is now allowed normal solid food and is much more mobile.

This afternoon we all went down to the seafront (Joshua in a wheelchair) and enjoyed a bit of sunshine. Libby brought dinner (thanks, Janine 👦) and the kids into the hospital, and we had a nice dinner along with much-appreciated quality ice cream.

Joshua is now much more his usual self and enjoyed starting on his Lego model we bought this morning. Although he is still low on energy and quite weak, it is great to see him so much better. It amazes me daily how quickly the human body (at least, a young fit human body!) can repair itself. The wonders of modern medical science also continue to amaze me. I keep thinking that every little thing that they bring out (from the electric beds to each medication, to the drip, catheter, scanners, rubber gloves, dressings and on and on) was someone's life's work. I'm glad Joshua going through this now, and not a hundred years ago!

Updates

Hi All

Joshua has had a good couple of days and nights. He has a young student physio named Will, who comes and visits him daily and has him up and about. Yesterday (Thursday, I think) he took three walks around the ward - during the second of which the much-awaited fart eventuated! This is a good sign and apparently what all doctors and nurses wait for with baited breath after bowel surgery as it indicates the bowl has woken up again after the paralysis it goes into after being handled.

Today has been an even better day with all his tubes coming out except for one cannula that remains for rehydration until he is fully getting everything he needs orally.

To be specific they removed:
* two direct lines into the wound for local anaesthetic
* the catheter
* the naso-gastric tube
* the drain from the wound site
* the left-hand cannula

He was very glad to get these out! (especially the one in his nose, which had been giving him a sore throat, and was quite uncomfortable).

He was also able to demonstrate a 'working bladder' - another sign the medics like to see after surgery. He is now on a diet that includes liquids of all colours 😀 We are just trying to encourage to keep drinking - something he is not great at at the best of times!

So all in all, a pretty good day.

The doctor also confirmed today that she hopes to be able to 'sign him off' on Monday, in preparation for travelling down to Brisbane on Wednesday. We are hoping and praying that they will allow him to come home on Tuesday, so we get at least one day of 'normal'(-ish) before heading off on our new adventures in the big smoke...

Many thanks to all of you who have been praying and supporting us in all other ways. We do appreciate it.

Now I am pretty much up to date on here, I will try and keep that way so this can be our main means of updating everyone as we go.

Pray for Josh (continued)

Sorry,  I ran out of energy to complete the previous post, so here is the rest.

On Wednesday morning one of the surgeons came to see me quite early and asked if Libby was coming in because she needed to talk to all of us together. You can imagine how excited that made me feel...Libby was due in at 9.30, and so the doctor said for the nurses to call her when Libby was in.

Unfortunately, by the time Libby arrived, the doctor had been called into theatre for an emergency surgery, so there were a few extra hours for us to sweat and imagine the worst 😒

In some ways, this was good, because by the time she arrived to tell us what was going on, we had imagined all the worst possible scenarios, which made the facts she presented not seem quite as bad.

The facts being:

* the preliminary results from the biopsy of the removed section of bowel indicated that he had an illness called Burkett's Lymphoma (apparently this is a kind of cancer of the lymphatic system that occurs in children and adolescents)

* Normal treatment would be the surgery that has already been done

* When strong enough Joshua will also require chemo

* All further treatment will be done at the Lady Cilento Hospital in Brisbane

* The timing of transfer to Brisbane and all other treatment is yet to be decided – partially based on outstanding test results, and further scans to be done in Brisbane (the specific type and stage, and I guess location, need to be identified)

* We will probably all go down as a family, and there is lots of support given by the hospital system

* It is a very treatable disease and responds well to chemotherapy (if my memory serves, the 'success rate' is between 85 and 95%)


As you can imagine, this was a bit of a shock to us. However, as I said, having thought the worst did make the actual news seem not quite so bad!

Pray for Josh

Hello all.

This is a 'fuller story' for those you have already heard about our current situation and an even fuller story for everyone else! 

A few weeks ago, we all had a brief but unpleasant stomach bug. We all recovered, but a couple of weeks later Josh was ill again. He recovered but was subsequently plagued with periodic stomach pains. This went on for a couple of weeks, and then last week he spent the whole week off school because the cramps were sufficiently bad. He also mostly lost his appetite. Libby took him to the doctor's two weeks ago and last week. He was given a couple of different kinds of medication and had blood tests taken done didn't seem to show anything untoward. 

On Friday evening he felt a bit better (we were all out watching Caleb being the lead in the school play - somewhat of a triumph, but a different story...) However on Saturday morning he still didn't have any appetite, and then had diarrhoea which was predominantly blood. 

This freaked us out a bit as you can imagine, but we were grateful to be able to get an appointment with the first doctor within half an hour. He suggested a few other possibilities of what could be wrong and recommended a stool sample and some more blood tests for those conditions. However, when Joshua continued to bleed while trying to obtain a sample, we pushed a bit (as we didn't want to have to go to A&E/ED/ER in the middle of the night) and the doctor agreed to give us some notes to take to the hospital.

I subsequently spent the rest of Saturday with Joshua in Accident & Emergency (the Emergency Department/Emergency Room, depending on where you are) while they ran multiple tests to try and determine the cause. To be specific:

* stool sample

* urine sample

* multiple blood tests

* x-ray

* ultrasound

* haemorrhoid check

* CT scan

Eventually, just before Libby and the kids came to visit, they diagnosed an 'intussusception'. If you haven't heard of that, don't be surprised. Although it apparently affects 56/100 children under 18 months, it is much rarer in people older than that. It is basically where a portion of the intestine telescopes in on itself. Something like this: 

After the doctor consulted with some paediatric colleagues, and they consulted with the surgeon, and the surgeon consulted with the Consultant Surgeon, and the consulted with his colleagues in Townsville and Brisbane (larger towns in the State) it was decided that they would need to do surgery to see the extent of the problem, sort what needed sorting if necessary and remove what needed removing (if anything). 

Libby stayed with him overnight in a room on the paediatric ward, and the next morning while waiting for an opening in the surgery schedule.

After going to church and feeding the kids, I was able to drop them off with friends and then join Libby. I managed to get there just before Josh went into surgery, and we were both able to go into theatre and I held his hand while they put him to sleep (around 14:45).

We were told the surgery should take between one and a half and two hours, and we probably wouldn't get any updates until he was in recovery and ready to be moved to the ward. 

We waited in the room he was expected to come to in the 'adolescent ward'. The plan was for Libby to stay with me until Joshua came out, but unfortunately, the surgery went on and on, and Libby had to go and collect the kids. Fortunately (at about the three and a quarter hour mark) I got an update saying that things were going well, but it had turned out more complex than they had first thought, but they expected to be done in a further 45 minutes. They also said he would be going to the surgical ward as they were better set up for post-op care. In the event, the surgery took four and half hours. 

Joshua has since done pretty well, getting up (with much assistance) for a shower on his first morning. However it is quite an uphill struggle to do anything, but he is keeping on with physio exercises he has been given.

On Tuesday he was able to move to 'clear liquids' (i.e. broth and jelly).

However, on Tuesday evening he started to feel nauseous, and despite the anti-emetics put through his canula started vomiting. The nurses had to get the surgical and 'pain team' registrars up, and around midnight we were sent down to radiography for an x-ray to confirm their suspicion that he had an ileus - basically his intestines had gone to sleep as a result of their treatment during the surgery and so everything that had gone in was just sitting fermenting in his stomach. Apparently this happens in 30-50% of such cases. 

The best solution to this problem was to insert a naso-gastric tube (i.e. a small tube inserted up the nose and down the throat into the stomach to drain everything out). This was done. It was a very unpleasant experience for Joshua, but he was as stoic as ever. However, the assurance that 'he would hardly notice it once it was in' didn't really come to pass, and he has found it fairly unpleasant. However, it did reduce the nausea and we managed to get 4-5 hours sleep. 

We have been rotating on and off with one of us staying with Joshua and one of us looking after the kids. 

Big steel lizard

We've visited the Mareeba Wetlands recently for a friend's birthday. This hosts one of the world's few remaining areas of wild rice. The Japanese have decided this is sufficiently important to mark with a large steel lizard (presumably so they know where to find it when all existing rices have been genetically modified out of existence).

Good for climbing on and taking photos of - especially in it's shiny eyes...