2 Cor 12v9

Monday, 30 April 2012

Calling and Falling

We had some really positive days last week with Scooby. Once the neurologists realised that the increased seizures were not to do with poor absorption of his medicines, or side effects of the bone marrow treatment, but of the actual deterioration of the brain itself, they got rid of the softly-softly approach and began hitting him with much stronger anti-seizure medications. So he had times when he was awake and not shaky, and was able to form words more easily again. The highlight, I think, was that he was able to sing ‘The Wonderful Thing About Tiggers’ to his aunt and uncle the night that they left for their missions trip for the rest of the year.

But then he had a couple more days of shaking all the time again, and three nights in a row where he could hardly sleep at all, so there’s still a lot of work to be done in getting the balance right with the meds, and keeping up with the unseen changes in his brain.

We are trying to work out if it will be possible at all to get him home, even just for a night or two, so we can all be together outside of the hospital walls. It’s been four months since he’s been outside, and that also means four months since Richard and I have spent any time together except for hospital swap-overs. We really really want the chance to be family again even if it’s just a little taster. We have no idea how this is going to be possible because Scooby is still dependant on medicines going into his central line, which we can’t do at home, and still needs his sats monitored all the time, and medicines balancing for his seizures, blood pressure, infection levels and many other things. It seems insurmountable at the moment, but Richard is determined to find a way, and once he’s on the case he inevitably finds one.

Apart from the many decisions we have to make at the moment about living arrangements and trying to work out what to do long term for our family’s future, I feel like I’m in the place I needed to be last week – having faith in God’s power to heal but trusting in His love to make the right decision. I know this is because of the many, many, MANY people who prayed for this, and I thank you so much. In the last week, I have had several moments where I felt strongly that God was saying He was going to heal him, but other moments where I felt strongly that we were being prepared to let go of him. Twice – once with Richard and once with me – Scooby began talking about heaven and what an exciting place it would be with all the singing and the fun people can have there. Neither of us had brought it up, in fact, I can’t remember the last time we talked to Scooby about heaven or death at all, but instead of scaring us, it made us feel assured that God must be working on things in Scooby’s mind as well as ours.

I think, as always, we are being reminded that the focus is not on what God will do but on God Himself, and keeping close to Him is more important than knowing the outcome.

On the drive home today I listened to an amazing compilation of songs made for me, and this one just really got me in the gut. It's by Casting Crowns and captures beautifully the amazingness of the God who hears our prayers not because of who we are but because of who He is:

Who am I, that the Lord of all the earth
Would care to know my name
Would care to feel my hurt
Who am I, that the Bright and Morning Star
Would choose to light the way
For my ever wandering heart

Who am I, that the eyes that see my sin
Would look on me with love and watch me rise again
Who am I, that the voice that calmed the sea
Would call out through the rain
And calm the storm in me

Not because of who I am
But because of what You've done
Not because of what I've done
But because of who You are

I am a flower quickly fading
Here today and gone tomorrow
A wave tossed in the ocean
Vapour in the wind
Still You hear me when I'm calling
Lord, You catch me when I'm falling
And You've told me who I am
I am Yours

Calling and falling - two things I'm getting darned good at. Thankgoodness at the moment that is all we are being asked to do. He does all the rest.

Monday, 23 April 2012


Along with so many others before me, I am experiencing that place where dreams are not yet lost but are dying, and hope is diminished but still flickering. Where you know you shouldn’t be grieving yet but neither are you allowed to be happy or at all expectant about anything in the future.

Here, in no particular order, is what has happened in quick succession every hour that I’ve been awake since hearing the news:

- Feeling like I’ve been punched in the stomach whenever I see a picture, think of a memory or remember a blissfully naive thought I had last week – and realising how different my world has become.

- Pleading over and over to keep the boy I love so much.

- Wondering why, of all the people in all the world who have pleaded for their loved ones and not been allowed to keep them, I think I should get to keep mine.

- Reflecting on how blessed we are to have had this child at all, and four more besides and realising we already have more blessings than we deserve.

- Looking at his weary shaky body and wondering why I’m being selfish enough to pray to keep him at all when his eternal destiny will look a million times better than this life here on earth.

- Remembering that he’s not gone yet and that God may intervene and that for all we know, he could be getting out of that bed one day and walking around again, seizure-free and healthy.

- Allowing myself to remember the skinny little bright-eyed boy that he used to be, with his shrill chipmunk voice and his excitement for just about everything in life.

- Mourning for all that he’s lost in the last few years and how physically unrecognisable he is now.

- Thinking of all the thousands of voices interceding on our behalf, and of the amazing promises in God’s Word, and allowing expectancy to rise that God can and may choose to heal our boy.

- Wondering how on earth his siblings would cope without him – his best friend, his twin, his DNA buddy and the little sister who is becoming more like him every day.

- Trying not to think about any of the things we’d looked forward doing in the future – from going to Disneyland, to sleeping in the same bed as my husband – because they may not be celebratory coming-home things anymore but a weary second best to the ultimate prize of keeping him.

- Hearing him giggle at funny parts of a DVD even though he’s got his eyes closed because he’s imagining the familiar scene in his head, and thinking how much he is still the boy that we know and love.

- Watching him shake and grunt as another seizure hits him and wondering how much more of it his body can handle.

- Wondering if we made the decision to let him go, what that would look like and which parts of his anatomy would shut down first.

- Feeling terrified at the thought of watching him die.

- Remembering that God is able and may still choose to intervene.

- Wondering why we think we should be chosen for a miracle when so many others don’t get theirs.

And round and round and round it goes in my head, until I get distracted by something trivial, or fall asleep for a little bit, or listen to somebody talk about something else. And then the punching sensation in my stomach hits again as soon as my mind remembers where I am and what’s happening, and off I go again on the emotional rollercoaster of exhaustion.

This is where I need to be: Having faith in God’s power to heal but trusting in His love to make the right decision.

I just wish I could get there and stay there without everything else inbetween. 

Saturday, 21 April 2012

Dear Devil

Dear Devil,

I have no idea how this spiritual warfare thing works. I have heard many different teachings from many different interpretations of the bible about it. I do not know how much we ought to credit you with when it comes to pain and suffering, and whether we ought to rebuke you or ignore you or bind you or whatever.

When I think of what has happened in the last few years, I keep thinking of Job and the unseen conversation in the spiritual realm that began his trials. I do not see ourselves as righteous people, except through what Jesus has done for us, and I do not liken our struggles to the devastation thrown on Job and his family. But like Job, our plan is and always has been to serve God and trust Him, whether we are stood firmly with our feet on the ground, or with our faces down in the dust crying out for His mercy.

But this I want to say to you today.


If the death sentence that has been given to our boy comes to pass, we will be broken and devastated and our family will always feel as though it has a gaping hole in the middle of it. But God uses broken people. It will not stop us from serving God, trusting God, helping other people to find God, or teaching our children about God's goodness. And our boy will pass from the trials and pain of this life straight into the perfect goodness of life alongside his heavenly Father. At seven years old, thanks to medications that sent him into uncontrollable rages, he grasped a truth that most of us take decades to work out - that we are constantly at war with ourselves and will never always make good decisions or find internal peace unless we submit our lives to God and let Him live through us instead. So he is God's now and will remain so forever.

And if God decides to overthrow this death sentence, as Lord of life and defeater of death, and we see a miracle where no physical hope is left, the glory will all go to Him and the many many eyes that have turned to Him because of our story will see and know and spread the word that He is God.

So I will say it again.


Do you hear that sound and feel that rumbling at your gates? That is the hundreds, perhaps thousands of voices, many of them strangers to me, who are praying and interceding for our boy today. They have been driven there by the darkest of circumstances and they are now opening heaven, calling angels into action and opening their hearts to the God who loves them and only needs that one invitation to change their lives and draw them closer to Him. Some of them don't even know God, but they're about to.

And watch out. Because tomorrow's Sunday - the day when the people of the Kingdom of Heaven gather together and lift up their voices to the King all at the same time. So that rumbling's about to get a heck of a lot louder.

Friday, 20 April 2012

The Worst News Possible

After a couple of shaky weeks with Scooby's seizure activity, and then some new and unsettling symptoms this week, such as struggling to speak and being unable to keep his eyes open for more than a few seconds, we decided to give him an EEG and an MRI. We've had so many of these before, often with inconclusive results, that we didn't really think about the outcome. We hoped all his symptoms could be explained as side-effects from the many medicines he was on.

But an hour later we were in the office with several consultants being told news that turned our world upside down. Scooby's brain is riddled with disease. Where in January's scans there had been a few white lines and grey patches, now they dominated the picture. The doctors were as shocked as we were.

Although his original brain disease had never been identified, it had been narrowed down to an immune system dysfunction because every other avenue had been explored and it was the only possibility left. Immuno-suppressants had been used to try and keep it under control, but then he developed the blood disease HLH, which meant we immediately had to go to chemo and bone marrow transplant because there was no choice - HLH is a terminal disease and that is the treatment for it. And we all presumed that destroying his immune system altogether and replacing it with a new one would solve the problem of the mysterious brain disease too.

Nobody expected that it would continue on its path of destruction, untouched by the biggest possible medical intervention we could have thrown at it.

The last physical hope we have is that some virus has entered his brain which looks like the original disease but is actually something else. If that were found and identified, it could be treated and hopefully leave little damage. But the chance of this is practically nil. We know this is a formality rather than a probability and will get those test results on Monday.

There are no other options. In the second meeting, after the news had sunk in and we'd asked about every possible medical option we could think of, the only thing left to talk about was palliative care. That at some point we will have to make a decision about whether to continue treating infections that arise and giving transfusions when he needs them, or whether we choose to let him be and shorten the process of what could be a long degenerative decline.

When I was in labour with my babies, I had to keep my mouth closed all the time because once I opened it I couldn't stop the noise that came out. That is what has happened today, back in the four walls of our hospital room. I have had to cry silently and with discipline because the feral groans that try and escape from deep within my gut would have shaken the whole hospital.

God, I want to keep him. Please. We need a miracle.

Wednesday, 18 April 2012

Plodding On

I really REALLY wanted to be able to write a GOOD update this week but it’s not happening yet. Scooby’s seizures are the worst they’ve ever been, so he is either awake and shaking or drugged up and asleep. Our amazing neurologist is working every day, even when she’s not supposed to be working, at finding the right combination of drugs to stabilise him but with every drug change comes more drowsiness and so far we haven’t seen anything other than the rescue medicine (which knocks him out even further) work to stop his shaking for very short periods of time.

Today, he couldn’t even keep his eyes open as the muscles in his eyes were going crazy and he couldn’t focus on anything visually. The only thing Richard could do with him was read to him because he couldn’t watch a DVD or see someone doing his magazines or sticker books. I’m grateful that he’s far too drowsy to really think about what’s happening at the moment.

(Scooby sleeping and the things that keep me going inbetween)

Home is an amazing place to be and I’m so glad that we split our week into half because what gets drained out of us at hospital gets revitalised from being at home (housework, paperwork and the laundry mountain not included). Here’s some of the uplifting beauty I get to engage with three and a half days a week.

Now you don't know whether to feel sorry for us or jealous of us, do you? ;)

God is good.

Monday, 9 April 2012

100 Days

Somewhere along this Easter weekend I lost it a little bit. I don’t generally make a fuss when it comes to significant dates, like birthdays and festivals – we normally do enough to make it memorable and special without having high expectations that make the day stressful or raise an unobtainable bar for the next year. So I wasn’t really bothered beforehand about missing yet another annual celebration where we should have been at home together, but somehow when the weekend arrived, the reality of our situation just hit me all over again.

This time last year we were celebrating getting a new building to meet in as a church, and hanging out together as a family doing all the usual bank holiday lazy family things. We went up to our friend’s parents’ farm in the Lakes and had a great time helping with the lambing and riding quadbikes up around the fields (see Good Friday Fun on the Farm ). As Easter presents, I got the kids CDs from the USA that I’d had on record as a kid (Psalty’s Kids’ Praise for anyone who remembers that) and I remember writing little messages on them for each of them that were really significant. We may have done a little Easter egg hunt around the house as well – I can’t remember if that was last year, or the year before, or both. And even though were already in and out of hospital with Scooby at that point, and he was already having seizures (I think he even had one while he was on the quadbike because he got so excited!), he was still walking around as usual and there was no way we could’ve imagined what was going to happen in the next twelve months and where he’d be this Easter weekend.

What he and I were doing this Easter weekend was mainly sitting curled up on his bed together and trying to stop seizures from coming. For the last ten days his seizures have been ridiculous again and they only stop when he’s asleep or drugged up with rescue medicine, which makes him sleep a lot anyway. There’s been no chance of building up his muscles to get him moving again because he was either shaky or sleepy and although (hallelujah!) the bone marrow transplant still seems to be a great success, he still can’t do anything other than lie or sit in his bed motionless. He can’t eat much because that uses a lot of muscles and he can’t talk much because he’s very sleepy. We tend to watch movies or he listens to me read or watches me make stuff under his instruction, but he can’t really take any of it in because he’s drifting in and out while he does it.

We’re only 31 days post-transplant but we’ve been struggling with seizures like this since September and not only does it feel like we’ve gone backwards a huge amount, it also feels like we are getting further and further away from a date to get him home - he’s just too unstable. He needs so much monitoring and tweaking of medication and specialist interventions that I can’t imagine him ever getting to the point where he could come home for a few hours, never mind permanently.

Now that it’s April, and another yearly milestone has gone by, and we’re coming up to important family events like my cousin’s wedding, and the birth of my nephew, and my sister and her husband leaving for a year-long missions trip, I just don’t want to do this anymore. I want us to be back together, all at the same time, in our house and hanging out with people we love, instead of snatched visits in one room all the time. I feel like having a toddler-style tantrum if only that would work to get what I want.

And then today has really compounded it. After nearly two weeks of his bowels seeming to get better, he’s had several significant bleeds today, meaning that something is still very wrong, and also sending that beautiful new blood his body is working so hard to produce out of his body too quickly. His red blood cells can be replaced through transfusion, but the white blood cells – the all-important reason for the transplant in the first place – can’t be replaced, and so if he can’t fight infection, he may need to go back on the anti-virals and anti-biotic medicines, all of which make his seizures worse.

And then I worked out that today is the hundredth day of 2012, which means it’s the hundredth consecutive day of him being in hospital. And that sucks too.

So I had a little paddy, and a pity party, and a chocolate fest, and watched too much TV, and kept hiding in the bathroom to cry and feel sorry for myself and for my boy, who I hoped wouldn’t remember this time last year in case that made him feel sad too.

And then today I pulled myself up by my bootstraps and got it back. 

Here’s how I do that. I stop looking at what-we-were-doing-this-time-last-year and what-we-should-be-doing-at-the-moment-instead-of-this, and I look at those who’ve got it worse off than us. It’s not hard to do, especially after so long in hospital. I think of parents I met in Lancaster, Manchester and Great Ormond Street, who had children sick from birth while mine was still running around not looking ill at all, and they knew there was no chance their child was going to get better from what they were born with – they just had to turn their lives upside down and get on with it. I think of the parents on the oncology ward next to ours whose little children are on their third dose of chemo for the same thing and how their chances are far more depleted than ours because so far we’ve only had to do this once. I think of the family on this ward who swapped twice a week like we do except they weren’t driving two hours up the motorway each way to do it – they were flying from Jersey. Most of the time, they didn’t even get to see each other as their flights crossed in the air. And I think of the family who have raised a fortune to come here from Nigeria, leaving some children behind in order to get a BMT for their son so he doesn’t die of the same condition that killed their toddler last year.

And then life doesn’t seem so bad. We’re doing this – the whole separation from each other thing – because we still have everything to fight for, even if it’s going to take a long time to get there. A hundred days in means we’ve got a hundred days under our belt, and hopefully less than another hundred to go. We may not be seeing a lot of each other, but we were getting some time every week, especially now that his infection risk has been lowered and his siblings are allowed to visit him again. There’s every chance that next Easter we’ll be back up at that farm terrorizing  helping with the sheep again, and Scooby may be able to sit upright long enough to be taken on the quadbike again. Or maybe we could fit his wheelchair with some kind of jetpack and he can overtake us all. 

Yes, the present is extremely restricting but the future is still wide open, so I need to stop mooching about the past or worrying about the future and rest in the well-worn cliché of taking it all one day at a time. Even if it will be day one hundred and one of the same darned thing....

Wednesday, 4 April 2012

Why We Do Not Fear Death

I had an amazing encounter a few weeks ago with Ace. Although we’ve talked about all these topics before, Ace has his own special filters when it comes to life. He can be completely absorbed in one topic and blissfully ignorant of many others until one day things just connect in his brain and he gets it. (For instance, after years of living with a dinosaur-obsessed older brother and watching and reading lots of things on pre-historic life, Richard found him a few weeks ago in floods of tears having just understood the concept that ‘extinction’ actually meant there wasn’t a single dinosaur left in the whole world....)

Ace: What happens when you get to infinity?

Me: What do you mean?

Ace: Like when you are infinity years old and you just keep going and going and going.

Me: Nobody gets to infinity years old buddy, we all die before then.

Ace: (stops and stares at me). What, everyone dies?

Me: Yes, one day. Some people live to over a hundred but most people die before then.

Ace: So when you get to a hundred, you die?

Me: Well, it’s different for all of us. Most people die when they’re old but some people die when they’re young.

Ace: But I don’t want to die!

Me: Everybody dies in the end, buddy, it’s nothing to be afraid of.

(pause for thought)

Ace: Do some people come back to life after they die?

Me: Well, Jesus did. And a few other people have done too, because of Jesus, but most people stay dead.

Ace: And what happens when you’re dead?

Me: People who are friends with God go to heaven.

Ace: Oh. (sadly) I don’t want to go to heaven.

Me: Why not?

Ace: Because in heaven there’s only clouds and angels and NO computer games. (following a discussion we had a long time ago about the end of the world where he asked me to make sure I kept my iPhone with me at all times)

Me: Hmm. It’s true we can’t take stuff with us to heaven. But we do get new bodies. We don’t know what our new bodies will be like, but they might be able to do anything we want them to, so it would be better than playing computer games.

Ace: What do you mean?

Me: Well, our new bodies might be able to change shape. And they might be able to fly or go through walls or something.

Ace: So it would be like being IN a computer game!

Me: Maybe, I’m not sure...

Ace: TURTLE! TURTLE! Guess what? When we die, we get new bodies that are like being in a computer game and we can fly and change shape and stuff.

Turtle: Wow, awesome!

Me: Well, I said we might be able to – the bible doesn’t say exactly. But it does say that in heaven there is no more sadness, and no more being scared, and no pain and no tears.

Ace: (stares at me completely astounded, then is suddenly overwhelmed with excitement and starts giggling with actual tears in his eyes) REALLY?! No being scared of monsters, ever? No crying? And no hurting yourself, ever? (starts jumping up and down)

Me: Yep. Nobody will be sad or in pain or poorly ever again.

Turtle: No poorliness? Alright! No more hospital!

Me: Yep. Nobody will need a hospital because our bodies will never get ill or broken.

Turtle: So like, you could crash into walls and be like ‘I’m fine!’

Ace: And you could jump off a cliff and smash at the bottom and shout ‘I’m okay!!’

(Cue five minutes of hilarity where they act out mock accidents and jump back up unscathed.)

Turtle: This is amazing! I wanna die now – let’s shoot ourselves!

Me: Woah! NO NO NO, we’ve got stuff to do in this life first, let’s not think about killing ourselves....

Ace: I gotta tell Rocky!

And then this boy, who hardly said a word till his extensive speech therapy started when he was four, and has always struggled to understand anything he cannot see, smell and get his hands on, ran upstairs shouting to his little brother:

Ace: Hey Rocky, guess what??? What we die, we get to go to heaven and we get new bodies, and there will be NO more crying, and NO more poorliness, and NO more hurting ourselves, and NO more sadness and NO more being scared of ANYTHING ever again!

Rocky: Awesome!

Preach it, son.


I wrote this last night then today heard the sad news of Piper Jean Needham who died yesterday after a long illness. Piper’s family has a mutual friend of ours and so together Scooby and Piper have been mentioned on many prayer lists and I and several other friends have been following her family’s blog at needhamcrew.blogspot.com . A few weeks after Piper’s birth she was found to have an aggressive form of leukaemia and so, like us, they have spent a huge amount of the last two and a half years in hospital, going through rough treatments and seeing huge changes in their child, and experiencing extreme highs and lows depending on test results and physical symptoms. She had a bone marrow transplant a few months before Scooby did, but hers wasn’t successful in getting rid of her disease. Like Scooby, she is the second-born in her family but where we had six more years to expand and complete our family before illness reared its head, her parents have had to put their dreams of a big family aside straight away while they invested everything they had into getting her better. Her disease came with a name and a known treatment which brought so much hope, but ultimately it took her life; Scooby’s disease still has no name and no known treatment, but at the moment we still have that hope that he will get better.

All of which makes it seem so completely and utterly unfair.

But, like us, they trust in God and placed her life into His hands a long time ago. They are mourning and rejoicing all at once that their child is out of their physical hands now and has gone into the hands of the One who loves her even more than they do. Her very short life on earth caused many many people to spend time crying out and interceding with our God, and what better purpose can any of us have in life than to draw people to God?

To Piper Jean Needham – although this earthly life makes no sense, God does, and He is the reason we Do. Not. Fear. Death. 

Hope you're having fun in your new body.