Still OK/Faith

Joshua still seems to be tolerating the treatment well, with none of the expected side effects. Our liaison nurse is very pleased and said, "Keep doing what you're doing". Her mantra is that there are three aspects of a good recovery - chemo, nutrition and attitude. We know about the fourth (or possibly first 👦) so please, keep doing what you are doing.

Despite my possible scepticism/confusion about prayer, I do believe that God can intervene - so please keep praying for Joshua. I know it is early days, but I am trying to believe that Joshua's good progress is because God is actively involved, and He will continue to be.

Faith is a funny thing. I remember a couple of years back I had 'habit faith' - that is, faith that I had always had and just kind of trundled along in the way it had always done. Over the last two years, my faith transitioned through 'desperation faith' (i.e. faith because the alternative is too scary to contemplate) to what I would call 'genuine faith' (i.e. faith based in a more complete and real picture of who God is, and His attitude towards me).

During this current situation, I feel like I have had 'gritted teeth' or 'fingertips' faith. Not even having the resources to think about things, but knowing that faith is the only thing that is keeping me going.

My hope and prayer is that through what we are going through, we will all come out with a stronger faith and a stronger relationship with God.

Courage

"Courage does not always roar. Sometimes it is the small voice at the end of the day that says, I'll try again tomorrow".

Mary Anne Radmacher

This is Joshua

This is Joshua. He is my son. And I wanted to make a public declaration of how proud I am of him. He has taken everything that has been thrown at him with stoicism, courage and good humour. He has borne far more than I think I could bear, and it has not phased him.

This is Joshua. He is our son, and we love him.

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.