Sunday, 15 July 2012

That was the week that was ...

The first round of the new chemo combination is done and dusted, and we now wait for the inevitable downturn as Adam's blood counts drop. Almost certainly he'll become neutropenic over the next few days, meaning he has no natural immunity to fight bacterial infections, and will have to be admitted for a minimum of 48 hours intravenous antibiotics should he develop a fever. It's also highly likely that he'll require blood and platelet transfusions later in the week. He hasn't received any transfusion since March last year; it's obviously not great to be back in this situation again, but we knew before we started on this course of action what it would entail. Due to the significant amount of bone marrow disease Adam has his body's ability to produce blood cells is already weakened. The additive effect of the chemotherapy is almost certain to drive them below the thresholds at which transfusions are required.

Adam tolerated the chemo itself quite well. He had a reduced appetite and was noticeably more tired than usual, but he was never nauseous or feeling sick. He did have constipation earlier in the week, but that was rectified with the help of some docusate sodium. It was a long week though, long and tedious. Thirty minutes of cyclophosphamide, followed by thirty minutes of topotecan, followed by six hours of hydration. With the wait to get started, flushes, change overs, etc. it was eight hours at the hospital each day, leaving after breakfast and not arriving back home again until after 6pm. By the time he did get home Adam was really tired and washed out … literally I think from all that fluid.

The combination of chemotherapy drugs Adam's had has been well used previously in the US, and forms the backbone of several ongoing trials there where it's administered in combination with a novel third agent. However, it's not often given in the UK to neuroblastoma patients, though I don't know why. I have a suspicion that Adam might even be the first child with neuroblastoma to receive it at the Royal Marsden. Adam's had both of the drugs before, so unfortunately his disease is not being attacked by anything it hasn't seen before. However, he's not had them as a direct combination, so we hope they will succeed in arresting the progression in his bones and bone marrow.

Whilst there isn't anything too dramatic to report, the week was not without it's ups and downs. Monday is always a pain no matter what because it's the first day of treatment. Consent forms to sign, blood counts to do, assessment by a doctor required, Adam's port needing to be accessed. It was a long day, and set the pattern for the rest of the week; daycare bustling with patients, nurses and doctors when Adam went in, and empty except for two or three nurses by the time he left.

Having got Monday out of the way it was all supposed to be plain sailing from Tuesday. Straight in, chemo straight up, clock ticking, out in time to get home and cook tea (so I didn't have to). Err, no. From the minute the nurse first accessed Adam's port on Tuesday morning it was clear a problem had developed overnight.

Adam's port is a central venous access device that is installed beneath his skin and runs into a main vein providing a route via which IV medications can be administered. There is an access point on Adam's ribcage, - it juts out like he's got half a table tennis ball stuffed under there. This is the 'docking station' into which a needle is inserted to provide an external line on to which chemotherapy etc. can be connected. Ordinarily there is no external line (which is why Adam can bath and swim freely with a port, which he couldn't with a hickman line). When he's having a week of treatment we put emla cream over the access point on Monday morning and about an hour later a needle with external line attached is inserted by a nurse, and it remains there until treatment finishes on Friday when it's removed and Adam goes back to just carrying this lump around in his ribcage.

Unfortunately on Tuesday, the line wasn't behaving as it should, and when the first chemo infusion was started pressure in the line built up and triggered the pump's automatic cut-off. Repeatedly. To the point where the only option was to remove the line and needle from the access point on Adam's chest, and replace it with a new one. Immediately, so the infusion could continue. Without time for emla cream to be applied and an hours wait for it to numb the area. I wasn't there, but it wasn't pleasant for Alison to stand helplessly by and watch Adam cry out as the old needle came out and a new one went straight back in again. What should have been a less stressful and quicker day had become quite the opposite.

If Tuesday was a low point in the week, Wednesday turned out to be the high point. Although I did get rather annoyed at being threatened with a ticket for waiting outside the children's unit for a parking space. I have a child inside being poisoned (yet again) with toxic drugs at my own request, Alison is parked in the main car park using an annual parking ticket that cost us £100, and I've got this muppet telling me 'you can't wait there, you will get a ticket' in his softly-softly-I-am-only-doing-my-job voice. I didn't swear. I didn't even raise my voice (well not much). I just told him that I didn't want to hear another word come out of his mouth. And when he proceeded to tell me 'I am telling you how you can … ', I cut him off and reminded him of what I'd just said. Being in a situation like ours is incredible stressful and sometimes, just sometimes, you snap. I think it's disgraceful that parking in hospitals is so expensive in the first place, but taking it to this extreme is crazy … and asking for trouble. I'm sure there'll be other incidents if he keeps on like that.

Anyway, what Wednesday was really about was a visit by Allan Pickett, head chef at Plateau restaurant in London, who came into the hospital and showed the children in the school room how to make their own pizzas, which were then cooked in the children's ward kitchen and served for lunch. I don't know about the others, but I can tell you Adam's pizza was pretty good. All of us had some, apart from Jake who doesn't eat pizza at all. Visits like this really do brighten up everybody's day, children and parents alike. Adam has something positive to do, we all have something positive to talk about, and the day is about something other than cancer and chemotherapy.

By Friday Adam had just about had enough of the monotony of the daily routine. Even the afternoon arts and crafts session in the school room had become too familiar. Home-time couldn't come soon enough. Which made it all the more surprising to see him more active on Friday evening than he had been at any other time during the week. Whether having the port de-accessed and being line free made a difference I don't know. Or perhaps knowing he was finished for this round gave him a fillip.

He's carried those good spirits, and general wellness into the weekend. Yesterday we went into town and got those haircuts I talked about. In the end Adam opted for a short look for himself, and a sensible trim for his Dad. His reasoning, he said, was that he didn't want to be embarrassed by being seen out with me sporting a ridiculous hairdo. All week coming home in the car, and again over the weekend, he's been tugging his hair to see if it's starting coming out. So far he's come away empty handed each time. I fear it may be too much to hope for it to stay that way until at least after the next round …

1 comment:

  1. Keep er lit Adam! And tell ur da not to be headbutting any parking attendants! :-)
    From wee Oscar's da.