Thursday, 27 June 2013

It's only a tombola …

It was the Junior School Summer Fair last weekend, the school attended by Jessica and at which Adam remains, notionally at least, a member of Year 4. I had no desire to attend, of course. I seldom have much desire to do anything these days. Content to watch Jake play football or cricket, because (a) the primary activity is watching, and (b) any secondary activity such as talking tends to revolve around what’s being watched. Beyond these simple pursuits I am, at present, not much of a willing participant in social interaction, save for perfunctory acknowledgments.

On Friday Jessica asked if she'd still be able to go even if Alison and I didn't, and of course we said yes. We had a conversation on the landing about whether we could drop her off at school at 12:30 to meet a friend. Meanwhile, along the corridor  in our bedroom where Adam has taken up residence, little ears were flapping; attention briefly stolen away from the iPad he spends most of his waking hours watching.

"What were you and Jessica just talking about?" he asked as I entered the room. I duly explained.

"I want to go to my school fair too."

"You can go if you want to Adam, that's no problem."

"Well I do want to go, but you know, only if I'm well enough to go, and I know I'm not going to feel up to it, so I won't go. It's okay, Dad, I won't go."

"It's entirely up to you Adam. It's not until Sunday so you don't need to decide now."

"But I know I won't be up for going. Ok, Dad? Ok?"

"Ok Adam."

There is a familiarity in this. Things that Adam wants to do, things that Adam thinks about doing, things that Adam's body simply won't allow him to do. One minute he's going to do something, a few minutes later he cannot muster sufficient energy or enthusiasm to actually do it. The moment has passed and we move on. We have come to accept it for what it is, and will give silent thanks for as long as he retains the capacity to even think in such terms.

At his last full blood count (after which we stopped bothering to even do them any more) Adam's haemoglobin (the main component of red blood cells, responsible for carrying oxygen away from the lungs to the rest of the body) was 2.8. Normal level would be above 12, and for a child on active treatment below 7 represents the lower threshold for transfusing blood. Our expectations regarding what he might be both willing and able to do nowadays are limited, to say the least.

On Saturday Adam woke late. His hours are varied these days. He may sleep until midday or beyond, and might then remain wide awake into the hours approaching midnight. We don't try and enforce any particular structure upon him, but instead allow ourselves to be guided by how he feels and behaves on any particular day. Except for the need to stir him in the early hours for essential medications on days where he has woken exceptionally late, it doesn't present any great burden. He mostly drinks alright considering, and eats little amounts as and when he feels like it; his appearance has become painfully gaunt and pallid. Most importantly though, he remains without pain, and in no distress.

After having a little breakfast he announced that it was time for him to have a bath.

"I need to be clean and fresh for my school fair tomorrow," he said.

I looked at him through sceptical eyes. He'd been in the bath once since we last returned from America, and lasted about fifteen minutes before he was asking to get out again. But he seemed pretty determined, so away I went. For bathing we cushion the bottom of the tub with the biggest towel we’ve got, and use further towels to provide head and neck support. I filled the tub with water, and then as carefully and as gently as I could, lifted Adam up and into position.

And there he lay. Relaxed and content, enjoying the warm soapy water. When the water was no longer warm, but Adam wasn’t yet ready to come out, I refilled the tub with him still in it. After 40 or 50 minutes I lifted his fragile little frame out of the water and onto a chair, wrapped him towels until he was completely covered up, and left him to dry in the warmth of the bathroom.

“Dad, look at my hands, they’re like prawns,” he said, opening his palms towards me.

“I think you mean prunes, son. And yes, they do.”

Clean pyjamas, clean bed sheet, I returned him to our bedroom where he settled back down to his iPad. Normal service resumed.

On Sunday our plans for the day comprised dropping Jessica off at school at 12.30, driving Jake to friends at 1.15 so he could get a lift to his football tournament, and me possibly driving over later to watch him play. The only ‘plans’ we ever have regarding Adam revolve around transfusions on Mondays and Thursdays.

He woke sometime after midday. “Dad, where is Jessica?” he asked.

“She’s gone to the school fair.”

“What time did it start?”

“It started at 12.30, Adam.”

“Dad, I need to get there as soon as possible.”

This was even more unexpected than his request for a bath the previous day. We were not at all prepared. He’d had nothing to drink, no food, no medications, he wasn’t dressed; Jake still needing dropping off.

"I want to get there for the sweetie tombola," he said, struggling with my help to sit himself up into a position from which I could get him dressed. The last time he wore clothes other than pyjamas? I can't remember. Days tend to blend into each other, to be honest, and I don't remember very much of anything.

By the time we were ready to leave the clock had ticked round to 1.30. In the car as we approached school I told Adam not to get upset if there were was nothing left on the on the tombola stalls as they were always the most popular. "I'm sorry Dad, but I will get upset," he said, "That's the only reason I wanted to come." I got Adam out of the car, transferred him into his pushchair, covered him with a blanket, and off we went.

As we entered the playground and saw the two empty tables it was apparent this was not going to be the happy outing for Adam that I so desperately wanted it to be. The only thing he really wanted to do and it wasn't going to happen. Sure we wandered around, he spent a little money elsewhere, but he didn't enjoy it very much. At one point he even pulled the blanket up over his head and had a little cry because he'd missed out. At that point I just felt utterly useless, and completely full of hate about everything.

For those people who came and said hello during the brief time we were there, I say two things. Firstly, thank you. I don't like conversation, but neither is it nice to be avoided (not that anybody obviously did that). Kind of makes things awkward, doesn't it? I know how we must have looked, and making a point of coming and speaking to us wasn't the easy option. Secondly, my ignorance and general demeanour wasn't a result of us being there, it wasn't a consequence of seeing Adam's schoolmates running around having fun whilst he no longer retains the ability to walk, it wasn't heartbreak over the situation we find ourselves in. No, it was none of these things. Instead, it was all down to the bloody tombola having finished before we got there.

For his part Adam didn't dwell on things. We didn't stay long before he wanted to return home, and he hasn't mentioned it more than once or twice since. For my own part I was in an awful mood for the rest of the day, and most of the next. Something that Adam had wanted to do, something that Adam had attempted to do, something that Adam had failed to do — but not because of a lack of anything on his part, but simply through circumstances. That was all I was consumed with, and I was so full of anger and hatred about it.

But I've gotten over it now. It's not so much that I've let the anger go, more that I've put it back in the box along with everything else.

Because after all, it's only a tombola … right?

Thursday, 6 June 2013

Another update ...

It occurred to me this morning that it's been quite a while since I updated. And whilst I did say I'd only update when I have something to say, and even though I have very little 'new' information to impart, I'm updating anyway because I feel like it.

Most of the previous post was written on our immediate return to England, with some subsequent updates to take care of developments in the intervening period before I pushed it out as a public post. The time in-between was spent informing those whom I didn't want learning the devastating news by reading about it on here. I also had to choose my moment to talk to Jake and Jess. Being completely frank, when I wrote that post I was utterly convinced that the next would be the last.

Whilst Adam has a growing list of issues, and it's clear to see that his disease continues on it's relentless path, the progression has been slower, and the deterioration less dramatic, than we had feared it would be. He is comfortable and has been, for the most part, without pain. For this we are ever thankful. The chest drain was removed, and we've since had no further issues with fluid accumulation in his lungs. Again this was not something that was envisaged when we transitioned to palliative care, either by ourselves or any or Adam's doctors.

Although Adam is really not up to doing a great deal now he did manage a few days out some weeks ago, including a very special trip to the Harry Potter Studio Tour arranged for us by Rays of Sunshine Children's Charity. We all went along as a family, and had a lovely time. And as an extra special treat we got to hang out with Mr Draco Malfoy himself!

When we flew back from the US we did so with a 28-day supply of the drug combination that Adam had been on, minus the dasatinib that we thought might be contributing to his pleural effusions. Which left a decision to be made when the supply was exhausted. In the end we came to the conclusion that whilst Adam was comfortable, and not in pain, we wanted to continue things just as they were. Whilst withdrawing one or more of the drugs may have made no difference whatsoever, if we did so and Adam's condition changed dramatically we'd always be left wondering whether it was precipitated by our actions. Any actual cause-and-effect could never be known of course, but that wasn't a position I wanted to find myself in.

Having left it late to come to such a conclusion the only option was for me to make the 8,000 mile round-trip to Michigan to collect another 28-day supply, leaving home at 8am on Saturday and returning at 9.30am on Monday. And even then, it was only down to the tremendous support from the staff at Helen DeVos, and Julie and Craig in particular, that enabled it all to work out on a weekend when the pharmacy wasn't even open.

Because of our prevaricating about whether or not to continue, Adam was off two of his drugs for a week, and last Monday and Tuesday experienced worsening, debilitating, pain. We increased his pain-relief patch, but that only brought other problems. A week later, and back on all three drugs, he is now comfortable once more. His pain receded and we backed off his pain relief to the level it was before, and where it has been ever since we returned from the U.S.

And so that's where we're at, continuing to live day-by-day. Adam has a platelet transfusion on Mondays, blood and platelet transfusions on Thursdays, and we manage symptoms as best we are able in the meantime. We have a fantastic community team supporting us, and the out-reach team from the Marsden are available at all times, day and night. So far we have not spent any time under hospice care, preferring instead to look after Adam at home. Which is what we will continue to do for as long as it remains possible ... please continue to keep him in your thoughts and in your prayers.