Normal hospital day

Normal hospital day. Arrived promptly at 11am for our 'appointment'. I think actually it's just a random time they give you to make sure you're at the hospital on the day, but bears no resemblance to the time you actually get seen! Anyway, usual routine, we sat for an hour waiting until Joshua had his Obs done at 12:00 noon. Good news is that Joshua is still putting on weight (he's far from heavy) and I am still trying to pour calories into him. Who knew it could be as hard to put on weight as it is to lose it! The aim of this is to avoid the dreaded naso gastric tube which many of the patients have. If you lose more than 10% of your starting weight you get one of these delights to provide nutritional support. Having had one of these for two days in Cairns (but for different reasons) Joshua is keen to avoid the experience again. Hence all the feeding!

Another hour and 20 minutes later we finally got seen. Joshua had his bloods taken and the dressing changed on his central line. So close but still so far from leaving the hospital, we had to wait another 1 hour and 20 minutes for the blood results. By this time we were banging our heads against the wall (obviously not literally, that would have been weird and probably required treatment on another floor). Finally at 3:00pm we got the all clear to go home. Good job really as I had already booked our homeward transport for 3:15pm.

For those of you who like the medical details, bloods were as follows:

Tuesday: Haemoglobin: 106, Platelets: 352, White cell count: 2.7, Neutrophils: 2.24
Friday: Haemoglobin: 97, Platelets: 247, White cell count: 0.6, Neutrophils: 0.1

Rubbish for most people, but normal for Joshua under the circumstances and given the stage he is at in his chemo cycle. What it means is that his immune system isn't up to much and he is at high risk of infection. Please pray that he stays infection free.

We got back to a severe storm warning, including hail. Tomorrow the forecast is for 34 degrees C and sunny.

Update

Pretty quiet here. Daniel is in Cairns with Bethany, Caleb and Ruben and I am here in Brisbane with Joshua. It is his week for recovering from chemo ready for the start of his third cycle next Wednesday. The treatment for his type of cancer is pretty hard and fast. Hopefully that means we will be done with it relatively quickly!

So for us in Brisbane it means a quiet week at the accommodation with a few trips to hospital for check ups. They usually take most of the day so it keeps us pretty occupied. The usual routine is, arrive at the hospital, (hopefully not too early), wait for an hour and get obs done. (weight, blood pressure that sort of thing). Wait another hour to see the consultant who chats and pokes and prods Josh.

This is Joshua's consultant, Andy Moore.

Wait another hour and get bloods taken. Wait another hour for the blood results, to see whether Josh needs any transfusions. Pray that he doesn't, because obviously you don't want him to need one, but also because you can't bear waiting another 3 hours which is how long the transfusion will take! On Tuesday Josh also had a problem with one of his lines (see below) which was blocked, so that meant another hour of waiting for the pharmacy to send down the anticoagulant to unblock it! Joy of joys we also had to return in 24 hours for them to remove the anticoagulant. We arrived on time and then of course, you guessed it, we waited for an hour in the waiting room for a 30 second procedure! 

I am moaning a bit because it's hard waiting, but overall we get excellent treatment, all the staff are lovely and very professional. There are tea and coffee making facilities, food in the fridge that you can help yourself from, a toastie maker, a coffee maker, TVs, teams that come round to entertain you - it's as good as it can be. Here are a few photos from inside the hospital.

A standard single room

Inside the hospital. Oncology day unit is level 5, the ward is level 11.

The roof top garden with a nice view over Brisbane and the river.

Not sure if we mentioned about Joshua's line before. Here's some info for those of you who don't know about these things - I didn't.

A central line is a tube inserted into a vein in the chest. It is used to give chemo and other drugs and also to take blood. It stays in until the treatment is over. The exit site is cleaned once a week and flushed to stop it blocking, and the dressing is changed. Needless to say, Josh does not love this and we all have to try and remember that it's there so we don't knock it or pull it. However, it is much better than all the needles he would have to have without it.

This is roughly how Joshua's looks. Clearly this is not him, he is not that hairy!

So tomorrow it's the waiting game again, obs, bloods, line care. Hopefully then we should have 3 days out of the hospital before we do it all again on Tuesday. Then we get the added bonus of a chest x-ray and an ultrasound. Basically it's an all day job!

On Wednesday Joshua will be admitted for 7 nights for his chemo and we start the parent merry go round again of taking turns to sleep at the hospital and looking after the other 3. However next week it should be more fun because Daniel's brother and his family and his sister are coming to Brisbane to visit. Joshua is really looking forward to that, so hopefully it will be a good week.

Not much happening...

Not much going on here. Joshua is doing OK, although very much in the low energy phase. We managed to make it to the local park yesterday, with Joshua alternating between wheelchair and walking.

We had a nice lazy day today, with Ruben (who is the lie-in determining factor) sleeping in until after 8.00 after some fairly abominable behaviour last night. Please continue to pray for Ruben, who the disruption is probably affecting most. He lacks the means to positively express his emotions, so they come out in rather unhelpful ways. Pray also for patience and wisdom for us parenting him.

We have all been feeling a little low this weekend - we are theoretically about half way through the treatment, but feel like although we have come a long way, there is still a long way to go, and we wonder whether we have the stamina. No doubt God will provide 👦 For our accommodation we have to keep a chart of whether Joshua is an inpatient or outpatient each day - and looking back at September so far he has actually only spent 4 nights as an inpatient - which is quite encouraging really. Hopefully that trend will continue (although, because of the shape of the protocol for the final two rounds, he will need to be in for at least six nights).

My extended family has now all finally reached Cairns, and the other kids and I will be joining them on Tuesday - kind of a bittersweet thing.

Joshua makes a break for it in the wheelchair

Caleb discovers static electricity on the slide...

Truth and (/or) love

Home again

Joshua and Libby made it back at around 10.30 yesterday morning, which was nice. Not so nice was the four hour wait this morning between 7.30am (time told to arrive at hospital) and 11.30 (time Joshua was actually called for his lumbar puncture). We feel there must be a better system...

Anyway, a Subway, a Sprite and an hour and a half later I picked them up from the hospital again, and now, in theory, Joshua is home for the next couple of weeks (twice weekly outpatient visits excepted). Please pray that we/God can keep him infection free once again.

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...