Sunday, 20 April 2014

A year has almost passed.

On Friday the 25th April it will be a whole year since Joel's initial CT scan at Treliske, when we found out that he had severe obstructive hydrocephalus with a mass legion, likely to be a brain tumour. I remember that day well. We had arrived at Treliske with no appointment letter, just a telephone message about where to go. When we arrived there, they were not expecting us - turned out we should have been at the hospital in Penzance. However, we were found a bed and waited for an unscheduled slot for a CT scan. Earlier in the week when we saw the paediatrician we had been insistent that Joel needed an MRI scan, however this didn't happen.

I remember how I attended the hospital on my own. I didn't know how long we'd have to wait and Martin needed to be at work. I don't think he really accepted at the time what might have been wrong with Joel. I thought he had a brain tumour but we didn't talk about it. Martin just knew that Joel wasn't right.

Joel's school performance had been declining rapidly since the December. He would stare into space, not hearing when you spoke to him. He would jump at loud noises. He would dribble and his food needed to be cut into small pieces. His arms would tremble and he would spill his food and his drinks. He could no longer dress himself. He had become incontinent, in fact he had been for months - though the doctors thought this not unusual. He had a cold that had lasted months. By the end he could hardly walk - he would stumble and fall. He would always wake with a tummy ache and would occasionally vomit - though he had been prone to this since birth, so we hadn't taken great notice of this.

Each time we went to the doctors, Joel would be Joel and he would charm everyone, putting on a show, trying his very best to walk in a straight line when asked, squeezing fingers as hard as he could, touching his nose as the doctor instructed - he passed a lot of the tests, much to my frustration. It took a lot of insistence and evidence to get his case noticed. I took along a video of him tripping as he walked, and a range of school work which showed his skills decline. This was all suggested by the Brain Tumour Trust's 'HeadSmart' campaign.

Martin had called on his way home from work to see if he should be coming to the hospital. I told him to go straight home as the paediatrician had just told me that the scans were so blurred that they were useless, they couldn't see anything from them. We'd have to come back the next day to have a scan with sedation. After putting down the phone the consultant then came back to say that someone else had looked at them.

I remember the nurses taking Joel away to play. I remember desperately not wanting to be told anything without Martin there with me. I asked if I could call Martin, get him to come. The consultant wouldn't wait. He told me that it was likely that Joel had a brain tumour and that he had to be taken to Bristol urgently.

I remember how calm I was. So cold. So unemotional. I remember calmly phoning school to say that I wouldn't be in work for a while.

I remember thinking how the hell was I meant to tell Martin over the phone. He was currently driving home. I phoned my mum instead who was looking after Thomas. Thomas would have to go home with her. I read out a list of what I'd need for Joel and what Thomas would need. My mum is a rock, at least she is on the outside. I can never read what's actually going on under the surface, but she deals with all that is thrown at her. She has a positive answer to everything. She always makes sense. I don't know where I'd be without her.

Martin's world was shattered.

Joel and I were taken up to Bristol by ambulance that night. I persuaded Martin not to follow until the morning. I can't imagine how he endured that night at home on his own.

My neighbour, who is now a close friend, is a nurse at Treliske and I remember her coming to the ward to see us at the end of her shift. She waited with me and Joel and helped us into the ambulance. I won't forget that. It meant so much.

We arrived at Frenchay around 1am. I had spent the entire journey in the ambulance writing in my notepad - working out my cover lessons for work. Seems crazy now when I look back on it all. I've still got that notepad. Adrenalin. It kept me going from that day until his Proton Therapy, when I crashed.
Joel was taken into theatre at 9am. Martin didn't manage to get to Bristol before he was put under. That scared me. Not knowing whether Martin would see him alive again.

I remember Mr Edwards, the neurosurgeon sitting down with Martin and I, rapidly talking through the surgery that was necessary to relieve the hydrocephalus. The tumour couldn't be removed but he thought they could get a biopsy. The risks were horrendous and we weren't sure of the outcomes.

I remember us both in tears, sat at a table outside the cafe. We had hours to pass. Hours to contemplate our sons life. It was surreal. For me, I didn't feel like I was actually there.

Joel was in the High Dependency Unit where I slept by his bedside. When I think back, I can still remember how he smelt. Iodine or something similar.

Everynight I still trace the line of his scar and cup his forehead in my hand. Wishing that my hands could heal.

The MRI preparations

Just over a week to go now until Joel has his first MRI scan since his treatment. He has always had a general anaesthetic for his MRI's, but since he now needs to have them every three months for the next three years, I thought he should try to do them without anaesthesia. In the States it is common to train young kids up so that they are able to cope with the scan without sedation. I've been looking at their sites and have picked up some tricks along the way...

I ordered a toddlers play tunnel and Joel has been practising laying still in that to get used to the claustrophobia of the scanner. He's been listening to an awful 30 minute long track of the horrible noise of the scanner, some of which sounds like a woodpecker, a pneumatic drill and a persistent fire alarm. He will be able to listen to an audio CD. He's chosen 'The Further Tales of Peter Rabbit' by Emma Thompson. He listened to 'The White Cat' read by Emma Thompson during his Proton Therapy, but can no longer bear to listen to it!

On Friday we visited the MRI department at Treliske. We took photos from the front door of the Tower Block, down to the basement and the reception and waiting areas, as well as a couple of photos of the staff, before seeing la piece de la resistance - the MRI scanner. I thought that with the photos I can put a little photo book together to remind him of what to expect on the day. So far so good. Fairly confident that he can cope with laying still again - I think the radiotherapy is still in his not so distant memory and he knows the importance of laying still and has the visualisation techniques to stay calm.

Our biggy at the moment is him coping with the canula. Typically he needs to have contrast dye. If he didn't need it then we'd only be dealing with the scanner. He hates canulas - with a passion. I only have to mention them and he's in floods of tears, like hysterical.

I am armed with a number of tubes of magic cream and dressings so he can practise just having the cream on his arm. He's managed to allow me to tape a canula on top of his skin whilst playing doctors with Doctor Bear and Monkey. We squirted water through it for a bit of fun. We are closer than we were, though a lot more conversations are needed.

We discussed it tonight and a little bit of bribery (actually quite a lot) ended with him saying that he would give it a go. He would accept the canula without running off down the corridor, like he had previously said he would do.

It's so hard. Trying to prepare him for what's to come. I don't want to do it. I don't enjoy it. I know though how important it is to get him prepared. It will be such an achievement if he can do his scans without anaesthesia, as over the next few years he would be clocking up quite a number of general anaesthetics, which can't be good for such a young boy.