Monday, 9 October 2017

Sunday

Another day at home which is a good thing because it means another day out of hospital. The usual structure of weeks and weekends has given way to days in and days out of hospital. It can get a bit wearisome. We live a sort of weird half life in Brisbane. Everything revolves around Joshua’s treatment which places limitations on what we can do. We also know it’s temporary which means our introverted personalities are too lazy to make any real effort to make a life down here. Who needs ‘in the flesh friends’ when you have Skype! They don’t eat anything, can’t infect you and you can switch them off when you’ve had enough! ("Sorry, I have to go, I’m losing the connection...")

Yesterday we decided to go down to South Bank again for a change from staying at home. According to google, “South Bank is Brisbane’s premier lifestyle and cultural destination'. Clearly that’s exactly what we are aiming for! Actually we go there because we can’t all fit in the car we have borrowed and it’s an easy place for the remainder to get to with public transport. Still it is quite nice and there are lots of things to do.

When I say going down to the river, those of you who don’t know Australia may be imagining something like this:


which is what going to the river looked like when I was growing up. 

South Bank looks like this:



There is a sandy beach to play in and lot of different pools to swim in. Caleb and Ruben had a great time swimming in the lagoon and Bethany and I looked round the market stalls. It’s not so fun for Joshua as he can’t swim with his central line and we have to look for areas where there are fewer people to park him. However at least it gets him and us out of the house. Daniel took Joshua home early in the car as he had had enough, and the rest of us stayed and watched a magic show before coming home later on the bus.

Saturday, 7 October 2017

Feelings


What does it feel like to be a mum with a child who has cancer? I'm not saying dad's don't feel the same things, I'm just not one, so I don't know. I'm also not saying that all the things I feel are necessarily rational or helpful or true. they are feelings and therefore not always accurate. However, as human beings, when we experience things, for better or worse, we fell things. Here are mine:

I feel guilt. Is the fact that my child has cancer my fault? Did I do something wrong? Did I feed them too much, too little, too much of the right thing, too much of the wrong thing? Were they exposed to too much radiation, too much pollution? Did I use too much sun block, not enough sunblock? Should we have gone organic and used less chemicals? How could I not have known he had cancer?

I feel sadness and at time heart broken. Why does my child have to go through this? Why does he have to experience things that many people only have to deal with later in life? Why does he have to be imprisoned in a hospital room undergoing chemo while other teenagers are out there living their lives, meeting friends, getting their driving licenses. Why, when he was starting to be so independent, does he have to be back in a place of so much dependence? If I could swap places with him and go through it for him, I would do so in a heart-beat.

I feel helplessness. Normally when your children are sick you can help them. You send them to bed, given them paracetamol, stick a plaster on it, a hot pack on it, a cold pack on it, cream on it. It’s easily fixed. Now I can do nothing. I silently watch as nurses with gloves, gowns and face masks to protect themselves from the chemo, put that chemo inside my child. I want to shout, 'Stop!' and make a run for it, but I have no choice. I sign endless consent forms to allow doctors to perform procedures on my child, all of which come with risks. I always sign, again there is no real choice.

I feel numb. Most of the time all I am doing is the task that is right in front of me. The load of washing, cleaning the floor, catching the bus to the hospital, calling the nurse. I am not thinking, I’m just doing. When that task is finished, I do the next one. Occasionally I have a moment while I am waiting for the kettle to boil, or I’m by myself in the lift, and I suddenly think, 'What on earth am I doing here?' Then I remember - my son has cancer. For a moment it all floods back and feels overwhelming. And then the lift pings, or the kettle boils and I’m back to the next task.

I feel angry. Why did it have to be my child?. Not that you want it to be anyone else’s child either, but still, why did it have to be him?

I feel torn and not enough. I will do whatever it takes to help my child, but what about the other three? They need me too. How can I get it right for everyone? How can I meet everybody’s needs? How can I be fair to everybody? How can I give everybody the attention they need?

For all this I have Jesus - and sometimes, that feels enough.

One of my prayers at the beginning of all this was that God would hold on to me and not let me go. Even when I had moments of just clinging on, that he would do for me what I couldn’t do for myself. In all my doubts and questions that he would be enough.


Some more truths from 'When God doesn't Fix It', by Laura Story:

Myth: I gain by holding on
Truth: I gain by letting go

Myth: The strength of my faith is based on how strongly I believe
Truth: The strength of my faith is based on the strength of my God

Myth: When things look dark, God is gone.
Truth: When things look dark, God's light shines the brightest.


Here's another great song. Read the words as you listen to it.

Oh My Soul, by Casting Crowns

Oh, my soul
Oh, how you worry
Oh, how you're weary, from fearing you lost control
This was the one thing, you didn't see coming
And no one would blame you, though
If you cried in private
If you tried to hide it away, so no one knows
No one will see, if you stop believing

Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone

Here and now
You can be honest
I won't try to promise that someday it all works out
'Cause this is the valley
And even now, He is breathing on your dry bones
And there will be dancing
There will be beauty where beauty was ash and stone
This much I know

Oh, my soul
You are not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down

I'm not strong enough, I can't take anymore
(You can lay it down, you can lay it down)
And my shipwrecked faith will never get me to shore
(You can lay it down, you can lay it down)
Can He find me here
Can He keep me from going under

Oh, my soul
You're not alone
There's a place where fear has to face the God you know
One more day, He will make a way
Let Him show you how, you can lay this down
'Cause you're not alone
Oh, my soul, you're not alone

Friday, 6 October 2017

Home day

Brisbane seems to only have two types of weather, freezing cold and baking hot. Right now it's baking hot and we are all sweating (sorry, not a pleasant image). We should be a bit more resilient to the heat coming from Cairns, but this house has only two fans that don't work very well. Daniel went out and bought a fan yesterday. He has set up office in the bedroom and complete with fan is attempting to work. Bethany and Caleb are at the hospital school. They get picked up at 8:15am every morning and taken to the hospital and are dropped back off here at 3:30pm. The taxi picks up all the kids in the accommodation here who want to go the hospital school. That amounts to two maxi taxis every morning. 

Ruben is out possum hunting. The last few nights we have seen possums in the early evening and he would like to have one as a pet. He is currently in negotiations with his parents trying to persuade them to get him a dog! Joshua is just pottering around, enjoying being out of hospital, eating a lot of icy poles (ice lollies in English) and catching up on day time TV. His next appointment is on Tuesday so he has a few days off from being poked and prodded.




Tonight is light the night in Australia. Light the Night walk is The Leukemia & Lymphoma Society's walk to build awareness of blood cancers. Walkers carry illuminated lanterns of different colours. White balloons are carried by survivors, blue by supporters, and gold balloons are carried by those walking in memory of a loved one they lost. It's held in over 100 different places around Australia. Seems like a nice idea, not sure whether we will go or not. Really depends on whether Joshua feels up to it.




Thursday, 5 October 2017

Blessings


I have just finished reading, 'When God Doesn't Fix It' by Laura Story.

In the early stages of this journey, it didn't feel like God was 'fixing it' for Joshua: 

I prayed that Joshua's stomach problem would go away - it didn't
I prayed he wouldn't need surgery - he did
I prayed the surgery would be quick and simple - it wasn't
I prayed there would be no cancer - there was
I was so grateful we initially didn't have to go to Brisbane, if I'd thought of it I would have prayed to stay in Cairns - we didn't.

For those of you who haven't read the book, Laura Story's husband was diagnosed with a brain tumour. He survived, but there is no cure for his short-term memory loss, vision loss and other complications.

She asks the question, "What if there are blessings that God offers that are greater than just a pain free life?" These are hard things to grapple with. I know there is truth in it, but it is not an easy one to accept. It's the kind of thing you are happy for other people to experience but not sure if you want to go through it yourself! She wrote the song 'Blessings', which you may or may not have heard. I think it's very powerful. You can find it on YouTube.


Blessings

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we have faith to believe

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You're near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not, this is not our home
It's not our home

'Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You're near
What if my greatest disappointments
Or the achings of this life
Is the revealing of a greater thirst this world can't satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Home again

Joshua came home from hospital yesterday having finished his 3rd round of chemo. He had a lumbar puncture in the morning, then they disconnected his chemo, heparin locked his lines and we were free to go. Quite strange for Joshua leaving hospital after 7 days, most of it spent in one room. His lumbar puncture went well and he woke up quickly from the anaesthetic, unlike last time. The only hitch was that Daniel had his phone on silent so didn't get the call to say Joshua was in recovery. In the event, they just wheeled him back to his room with the nurse. He was quite relaxed about it all, I think he is so used to general anaesthetics that he doesn't need a parent there when he wakes up. Now we have some recovery days and then on the 16th October Joshua has a PET scan. (google it, if you want the details) This is quite a big deal as it is a full body scan to check whether there is any cancer left. The consultant seems quite optimistic that it will be gone. If that's the case, Joshua will just need one more round of chemo, his central line removed and we should be able to go home. Of course he will have a lot of check ups and will probably need to come to Brisbane once a month for the next year and at increasing intervals after that. If the PET scan is not clear, there will be more rounds of chemo and a new plan. Please pray that it will be! 

Whatever the outcome, we have decided that I will fly back to Cairns with the other 3 kids on the 19th October. This is so that Bethany can go to her Informal (like a prom), that she has been looking forward to all year, and so that the kids can have a few weeks back at school before it finishes at the end of November. Daniel will stay in Brisbane with Joshua for now and if necessary the rest of us can always come back again at a later date.

For those of you who are interested, bloods as of yesterday were:

Hb: 110
P: 352
Wcc:4
N: 3.39

Yesterday was day 7. The results normally keep dropping until around day 14 when they start to recover again.The good news is that 24 hours off the chemo, Joshua's appetite is starting to come back, so the feeding program can commence again. We have a few kilos to put on before the next weigh in on Tuesday!

Tuesday, 3 October 2017

Photos

Some photos from over the weekend, Joshua had some unexpected visitors after the fireworks!















Monday, 2 October 2017

Round 3, Day 5

Still here 👦

Brief update:

We enjoyed RiverFire, and will post some photos and more detail of that at a later date - there was a big party on two levels of the hospital with all sorts of good free stuff and activities. Caleb and Ruben even managed to get on TV 👦 (again...)

Chemo continues. It is slightly frustrating as Josh is now only receiving a very small amount of a single drug (Cytarabine) but it has to be given very slowly, so it takes a few days to get it all done. Wednesday will be his next LP and will once that is done hopefully we can go home.

Please pray for Joshua as the current drug has sapped his appetite. Pray that he would be able to eat enough to keep his weight up sufficiently until he finishes this round and gets his appetite back - he would still very much like to avoid the nasogastric tube...