Back in hospital

For better or worse, depending on your view point, Joshua's bloods were good enough on Thursday for him to be admitted to hospital again for his next round of chemo. He spent all day on Thursday as an outpatient getting his pre chemo drug, Rituximab. It was made a little more bearable by family members coming in and out. We had to juggle it a bit, as there wasn't a lot of space and it wouldn't really have worked to have had 10 people standing at the end of Joshua's bed all day. 

At 7pm we got transferred up to the ward and Rituximab was followed by 3 hours of Methotrexate and the usual fluids. The good news is that we have a single room overlooking the river, ready for 'RiverFire' on Saturday night, clearly a priority!  Riverfire is Queensland’s ultimate fireworks display, with more than 20 minutes of fireworks. There will also be aerobatics from the Australian Defence Force.

During the time Joshua is out of the hospital, I forget how horrible the nights are in hospital - but it comes back quickly! The nights are very broken as Joshua has obs taken every few hours, he is given various medications, bloods are taken, fluids changed and the machines are constantly beeping about something - air in the line, pressure in the line, transfusion finished, transfusion nearly finished. Every time the machine beeps, the nurse has to be called in to sort it out. There are also a lot of flashing flights, so Daniel, Joshua and I all use eye masks. (Thanks to those long haul flights, we all have them).

This morning, Joshua had barely woken up when he was told they were ready for him in theatre. He has two lumbar punctures per cycle under general anaesthetic to inject chemo into his spine. Usually he wakes up really fast, but today, he really didn't want to wake up and was very sleepy. Not sure what was going on today as they seemed to be having the same problem with other patients and the recovery room completely filled up. They had to stop the list to allow time for the patients to wake up! Eventually, when his blood pressure was high enough, we were allowed back up to the ward. Joshua was pretty wiped and spent most of the day sleeping. He now has five days of a chemo drug called Cytarabine, run continually; one more lumbar puncture, then hopefully he can go home to recover. Cytarabine is a new drug for him this cycle, so please pray against side effects. All the drugs come with pages of details of possible side effects, which I mostly don't read. The nurse said this one often makes people feel like they have flu. 

Sadly, some of Daniel's family had to leave yesterday evening, but tomorrow we look forward to Daniel's parents and aunt arriving and watching RiverFire in the evening. Hopefully we don't have to change rooms!

Suffering - some thoughts

People sometimes ask questions like, "How can you believe in God when there is so much suffering in the world?" or "Why would a God of love allow so much suffering?" For those of us who are Christians, how do we reconcile what we know about God (that he is good, that he is good all the time, that he is all powerful and that he loves us) with the fact that he allows us and people around us to suffer, sometimes in unimaginable ways?

There are no easy answers to this. I have been listening to Jeff Vines this week and he had some good points, many of which I have used here.

For the Christian, the bottom line is this: the things I do not understand about God and life, do not change the things I do. There is a God and I know he loves me because he gave his son to die for me, and that never changes. The things I do know about God (and the God I know) help me to cope with the things I don't understand, because I trust that he has some good answers, that maybe I will understand someday. 

For the non-Christian, I think the issue is in some ways more complicated and even more disturbing. If you don’t believe in God in the first place, you can’t blame him for things that happen. If God is not real you shouldn’t be upset when bad things happen. If God is not real, life is not sacred and we are nothing but a bunch of chemicals here by accident. When someone dies or someone suffers you should understand, in the words of Tennyson, that, ‘Evolution is red in tooth and claw’. It’s all just dumb blind luck. In fact it’s the survival of the fittest. If someone suffers and dies it’s because they’re not fit, so they’re not surviving. It’s the gene pool strengthening, shedding the weak. If we are indeed the random product of evolution then aggression and domination are good things.

From the Christian point of view, all life is sacred and has value. However, that can only exist in a created scenario where God exists. The point is, you have to resolve the issue of pain and suffering in the context of God. You can’t resolve it outside of God because outside of God you can’t even ask the question.

So how do we resolve it?

In lots of ways, I really don't know. However, although easier said than done on some days, I think it helps having an eternal perspective. Again, Jeff has some good points.

=> There may be a finality to existence here but not to existence itself. The life that is lost is not lost in the hands of the one who made it. God who gave life the first time is able to give life the second time and the second life is far greater that the first life

=> There is a glimpse of God you get in pain that you never get in pleasure

=> What God accomplishes in you in the tragedy is as important as the tragedy itself

=> Somehow deep down inside you know that God has got this

=> On the cross, it appeared that evil was winning and God had lost control. When all seems lost, all is won

=> God decides what to allow into your life and what to prevent. It is your job to receive it, embrace it and allow God to do his work

=> The ocean is the world, the boat is your life, the wind is the spirit of God. In a sail boat you have a role, but it is God who sends the wind. When the wind blows you don’t know where it’s going to blow you. Are we brave enough to allow God to take us into waters, even when they are troubled?

Another nice song. (This is the one that Bethany sang at my dad's funeral).

Captain

Words and Music by Benjamin Hastings & Seth Simmons

Verse 1

Through waters uncharted my soul will embark

I’ll follow Your voice straight into the dark

And if from the course You intend I depart

Speak to the sails of my wandering heart

Chorus

Like the wind You’ll guide

Clear the skies before me

And I’ll glide this open sea

Like the stars Your Word

Will align my voyage

And remind me where I’ve been

And where I am going

Verse 2

Lost in the shallows amidst fear and fog

Your truth is the compass that points me back north

Jesus, my Captain, my soul’s trusted Lord

All my allegiance is rightfully Yours

Feel free to comment, whatever your views. 

Tuesday appointment

Great day yesterday. Joshua and I arrived at the hospital at 7:30 am for his ultrasound and chest x-ray. That was done easily and on time, as it always is. After that we had rather a lot of time to kill before our next appointment at 11am, so I decided to take him out for breakfast across the road from the hospital. I ordered him the biggest breakfast on the menu - all part of the feeding regime! While we were there we were accosted by a retired MAF Mareeba engineer who spotted Joshua's MAF Bangladesh t-shirt. He also has cancer and had just had an appointment.with his oncologist, so he joined us for breakfast. 

After that it was still only 9:30am, so I decided we would just go to our appointment early. I had hardly opened my kindle when we were whisked straight in for Joshua's obs (weight up again, possibly thanks to the huge breakfast!) Then without a pause straight in to see the consultant, and then vcalled straight in for Joshua's bloods. The consultant said we didn't even need to wait for results, they would call us. We were all done before 11am! Clearly the way forward is to go really early to appointments! (or it was a treat from God!) 

Josh, of course, was thrilled, to be done so early and be able to spend more time with Daniel's family who are visiting. We spent the afternoon at South Bank, trying to keep Joshua away from germs. Even better, from Joshua's point of view, although he feels fine his bloods are still rubbish and not good enough to start chemo today. That means he gets a whole day with his relatives at home, or out and about somewhere, and we try for the chemo again tomorrow. He said that's what he prayed for, so although I would just like for him to get on with the treatment, it's nice that's he's having such a good week.

(Not sure what Joshua's oncologist would say about him sitting in the sand and feeding birds!)

Surprise

Joshua had a great surprise today. One of his school friends flew down to Brisbane just to visit him. We had managed to keep it a secret, so when his friend and mum arrived, Joshua was pretty surprised and excited. We were both really moved that they would take the time, effort and cost just to come and see us for the day. On top of that Joshua got letters from his other classmates, chocolates, photos and a new x-box game that he had been wanting.

Just to put it in perspective for those of you who don’t know Australia, it’s a 2 hour flight time here, plus all the usual airport waiting and a bus and taxi to get to the house. Pretty impressive. Two hours of non stop chat later and our guests had to leave to repeat the return journey.

(It's a 20 hour drive, 1685 km, 1047 miles, 2 hour, 10 minute flight time. Roughly the same flight time as flying from London to Barcelona).

I have been so impressed with Joshua’s school friends and their efforts to keep in touch and support him. It’s nice for him, and me. Even though Joshua is very stoic about this whole situation, I know he really misses his friends and home and can’t wait to go back. This visit really cheered him up.

One of his friends wrote in a card, “Hardships often prepare ordinary people for an extraordinary destiny”. C.S. Lewis 

(No pressure Joshua)

'My Lighthouse'

If you haven't ever listened to Rend Collective, give them a try. One of my all time favourite groups. This is a great song with great words. Also try , 'Every Giant Will Fall'.

MY LIGHTHOUSE

In my wrestling and in my doubts

In my failures You won't walk out

Your great love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

In the silence, You won't let go

In the questions, Your truth will hold

Your great love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

My lighthouse, my lighthouse

Shining in the darkness. I will follow You

My lighthouse, my lighthouse

I will trust the promise

You will carry me safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore

I won't fear what tomorrow brings

With each morning I'll rise and sing

My God's love will lead me through

You are the peace in my troubled sea

You are the peace in my troubled sea

My lighthouse, my lighthouse

Shining in the darkness, I will follow You

My lighthouse, my lighthouse

I will trust the promise

You will carry me safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore

Fire before us, You're the brightest

You will lead us through the storms

Fire before us, You're the brightest

You will lead us through the storms

Fire before us, You're the brightest

You will lead us through the storms

Fire before us, You're the brightest

You will lead us through the storms

My lighthouse, my lighthouse

Shining in the darkness, I will follow You

My lighthouse, my lighthouse

I will trust the promise

You will carry me safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore (oh-oh-oh-oh-oh)

Safe to shore

Songwriters: Gareth Gilkeson / Chris Llewellyn

My Lighthouse lyrics © Capitol Christian Music Group

Just some thoughts

I wasn't sure whether to write this blog and those of you who are not Christians reading this may think I am a nutcase! Actually you may have already thought that and this will just confirm it.

For those of you who don't know, my dad died last year. He had been suffering from Parkinson's for over 10 years and died very quickly last September. I was in Australia when I got the news. It had all happened so quickly there was no time for me to fly home and see him. After I heard, I had to go and pick up the kids from school, but arrived a little early, so decided to go and sit in the park across from the school. While I was sitting looking at the the beautiful hills in the distance I saw my dad and his good friend Derek (he had died a couple of years earlier) waving at me in the distance. I have no idea what it was, it may just have been in my imagination. For me it was a special gift from God because I was one of the few people not to see my dad before he died. What was interesting was that, it wasn't dad and Derek as I remembered them or had ever seen them. They was so young and healthy and strong and so full of energy and vitality. Where they were was a place of such joy and happiness, everything was so vibrant and  alive. The suffering of the previous years had just fallen away and was forgotten. 

Now when I think of my dad, I am sad when I think of what he suffered but I am not sad that he died. The place he is in now is so amazing I almost wish he could have gone earlier before he suffered so much. Quite a few people I know have died this year. I am always sad when I hear, especially for their families, but at the same time I am glad for them, for if they are Christians, I know where they are. I hope they are saying hi to dad and Derek. Jeff Vines says, life is not lost if it's in God's hand. It ceases to exist here on earth but it doesn't cease to exist. Every life is to be seen through the lens of eternity.

This is the context that I think of suffering in. Do I float along in a happy bubble cloud all the time? No way (ask Daniel). Do I struggle with suffering? Absolutely. Do I get angry with God for what's happened to Joshua and the other kids that I see suffering? Definitely. Do I cry, rant, shout and express my emotions? Quite often, but I do try to limit this to once a week! What I do know deep down is that whether I understand it or not, one day God will make everything right and everything beautiful again and all this suffering will fade away.

Normal home day

Nothing much to report. Normal home day. I had to take Joshua's temperature a couple of times. If he has a headache which he did today, I have to check his temperature before he is allowed paracetamol. If it's 38 degrees C I have to take it again in an hour. If it hasn't gone down he has to go straight to hospital. If it's 38.5 degrees C first time round he has to go straight to hospital without a second check. Thankfully all has been well and we haven't had to move ourselves from the couch. (We do move occasionally to stock up on food). Due to the risk of infection, when we are not at hospital we tend to stay at home and avoid other people. It turns out it is surprisingly easy to stay at home and not do much. Josh and I have enjoyed watching lots of movies and lots of episodes of 'The Middle'.

Josh has had a great week. Despite his blood results he has felt better this week than since his initial diagnosis in Cairns. He hasn't been napping or even resting in the day and goes to bed after me (actually not that hard). I think this time around he has been better than after his last cycle of chemo.
Thank you for everyone who has been praying for him and me this week.

We live in a funny cancer bubble - dealing with it every day ourselves and meeting other cancer families and cancer professionals. It's strange to think that out there in the rest of the world, there are lots of people without cancer. For some reason you tend to think that people with cancer are somehow different, even when you have become one of them, but then you realise that we are all just the same. Just people, some with cancer, some without. All just doing a day at at time and dealing with what comes our way.  Good health that we often take for granted is a real miracle. Come and sit in the lobby of the Lady Cilento and watch the children go by. You see all sorts, all ages, all races. Tiny babies with tubes coming out of everywhere and nurses following with oxygen tanks, bald heads and pale faces, small heads with huge scars, wheelchairs, crutches, bandages, smiling faces, tearful faces, angry faces.

In some ways you can get used to anything and even cancer becomes normal. The normal conversation is no longer the weather, but which cancer does your child have, how long have you been here, when were they diagnosed, how long do you expect to be here. Mostly the prognosis is good but the stories are not always happy. What do you say to a mum who says the doctors have run out of options for her 6 year old? Quite sobering. It leaves you with a lump in your throat and lots of questions.