The last two weeks have been incredibly tough. Scooby has been extremely sleepy – even during the few moments that he’s been awake, he’s been so lethargic and heavy eyed that he can hardly interact at all. He can’t hold his head up when the back of the bed is raised, so it lolls to one side and the only movement he makes is to roll over a quarter turn, but sometimes he can’t manage that unaided either. He hasn’t been using his hands at all, and he can only chew three mouthfuls of a meal slowly before giving up. He’s not his usual sparky self at all and seems very confused at times.
This is partly to be expected – apart from the fact he already had minimal movement because of the disease, he is also on more than twenty different medications ranging from twice a week to four-hourly, and he is completely neutropenic, which means he has no immune system whatsoever. His blood is tested every day for traces of infection and each time they find one they have to give him a different type of antibiotic to control it. His blood platelets keep dropping so he’s had about four infusions now to bring them back up. He is also suffering severely from diarrhoea so he is loosing his natural salts and phosphates. He was being fed by a nose tube, but they have now switched his nutrition to IV intakes through his line, and are giving him phosphate infusions too. Even so, the doctors have been surprised at just how much sleeping he is doing.
He’s also had other unexpected symptoms – high temperature for almost a full week, dips in his blood pressure, high and low pulse rates – almost as soon as one thing gets under control, another thing arises. While he’s slept away the rest of us have been on our toes, desperately trying to keep things balanced on his behalf!
The one thing that has remained calm during all this is his seizures, which has been unexpected - he’s only had about three in this two weeks. It may be because he’s hardly moving at all, but we are all glad that even when he wakes and is distressed, he’s not having to deal with that. The other good thing is that he hasn’t been sick from the chemo even once, and considering he struggled with reflux until he was about four years old, this has been a pleasant surprise.
This weekend things have been calmer. His temperature has stayed down, his other sats have been normal, and he has been awake slightly more. Unfortunately most of his wakeful times are dominated by the constant nappy changes he needs, which are extremely painful due to all the toxins that are coming through his body, combined with the diarrhoea. As well as causing him distress, the raw skin is difficult to keep clean (and can’t heal quickly due to his low platelets) and so we’re worried about infection there too.
Things at home have been ticking over okay. Me and Richard divide the week into two, so I am home Monday to Thursday to keep the homeschooling going while Richard can be at the hospital for the Big Decision Days which we now know seem to happen at the beginning of the week. On Thursday afternoons the kids get to see their brother for a couple of hours then Richard brings them back so he can be around for the weekend for church (although he’s currently having a few weeks’ leave) and I can do the Waiting Around Days in hospital, which I don’t mind. We swap again late on Sunday night, and since Daniel’s been less able to interact we’ve started dropping the other kids off with family so me and Richard get a couple of hours together to see each other face to face. Coffee in the parents’ room and eating a Chinese between cleaning up soiled bedsheets doesn’t make the romantic of date nights, but it’ll keep us going for now!
The other kids are thankfully pretty oblivious to the severity of the situation, because they are so used to the hospital split weeks by now. I’m more glad than ever for the homeschooling because we can base the weeks’ activities on our capacity, and it’s so good being able to throw myself into something else instead of being overwhelmed with one thing all the time. There are no alarms set for the morning or deadlines to rush them into the car for – I get up when Baby does and we slide into our pattern of warm-ups and workbooks, followed by our Arctic and Antarctic topic which involves making paper snowflakes, learning survival techniques, watching internet videos on precipitation, freezing and melting different liquids, learning about the earth’s different climates and its angles to the sun, etc. And if it’s a tough day and I’m running on empty I wait till Baby has her nap then I take one too while the boys watch episodes of Frozen Planet. I have a different person for each day that I’m home to come and help for a couple of hours so we can get more done between us or I can retreat with the laundry for a bit if needed. On Richard’s days at home he takes them out and about, to historical sites or to the zoo to see the creatures they’re learning about, and this makes sure he keeps up his favourite parent status.
So this is how we are coping for now – we are plodding, focusing on each day at a time and trying to keep things as smooth as possible. If things get worse for Scooby and we both need to be closer, we will take the others to Preston to be with family, but while things are uncertain, we are going with the flow and keeping them protected from the worst.
And in the theme of being protected and carried in the worst of times, I wanted to share this song which I must have listened to about a hundred times this week. It sums up our journey so far (you have to use a cliché before you play a heart-wrenching song – it’s the rule) and exactly what our Father has been doing for us, written by another parent of five kids who has suffered loss. Definitely worth buying the album for.