In the five days since I was last in hospital, Scooby has been through some tough stuff. Last week’s chemo effects kicked in with a vengeance and his skin started erupting with blisters. Like his asthmatic activity, it was unexpected and although the staff weren’t really sure what to do, there are so many weird individual reactions to chemo cocktails that apparently there isn’t a ‘normal’ expected outcome so we have been told not to worry too much. One of the few remaining departments of RMCH that hadn’t been a part of Scooby’s case have now joined in – the burns and plastic specialists came up to have a look. Their plan is to break open all the blisters, clean them out, medicate and wrap them for three days at a time so that there is no risk of infection to them. This was done last night, and although they turned Scooby’s morphine up to the max for it, I admit that I was so very grateful not to be the parent there to witness it. Richard’s stomach is definitely stronger when it comes to things like that. After two years, I am only just into the being-able-to-watch-a-blood-test phase, which unfortunately we are back into as Scooby’s central line can’t be used at the moment for having some of his blood tests taken, so he has to have needles again which creates another point of possible infection....
The sores also include ulcers in his mouth and throat, so he is being fed IV nutrients again, and he’s back to sleeping a lot because of the huge amounts of pain medication. Oh, and they couldn’t completely wrap the skin around his groin and bottom obviously, so that part is extremely sore again and has open wounds which are at risk of infection.... And he is still retaining all that fluid which means his beautiful face is stretched and distorted and takes my breath away every time I come back after my turn at home. He has no neck whatsoever – just a huge bloated mass that starts under his temples and rolls over to his collar bone. Some days when he wakes up, extra fluid has settled onto his eyelids, turning the bottom ones over so they fold into his eye and the lashes are touching his eyeball and he can hardly see for them watering so much.
So this week pretty much sucks. We know this is progress, even if it looks like going backwards in time, but it’s hard to see him going through all this knowing we let it deliberately happen to him after he was starting to feel better. We are on day 5 of a 180 day process which sounds like nothing really, but apparently the first two weeks are the hardest, and we’re already a good way into them, so we just have to grit our teeth, have the occasional weep, and keep going till we see it through.
So to balance it out this week I have been thinking of lots of other things that remind us in the sucky times that things really are, and have been, working together for good, long before we realised they would. There are too many to mention, but here’s some I’ve been focusing on this week:
1. The fact that although we’ve been staying at hospital almost every week since the end of the August, the break came from mid-November to the end of December when we had six weeks with only regular outpatient visits to hospital. Scooby had been so upset at the thought of having seizures or being in hospital at Christmas, but it didn’t happen. We were able to enjoy the run-up to Christmas and all the church and family events we wanted to be at, and we had an absolutely fantastic Christmas and Boxing Day, before spiralling into the next phase on January 1st.
2. The fact that the other four children seem to be so very very secure and happy despite what’s going on. Last autumn we had a few tricky behaviour issues, but they seemed to have worked out and they find the situation so normal now that there is no distress or worry involved in me and Richard swapping over. They have spent loads of extra time with our wider families and this has given them lots of changes of scenery and plenty of opportunity to talk to different people about how they are feeling if they want to. Scooby is frequently talked about – in fact, Turtle always assigns him a role when they play games: ‘I’ll be the cavalry/expedition leader/iguanodon, you’ll be the infantry/scout/allosaurus and Scooby’ll be the archer/cook/pterosaur....’ – even though he’s not there. He is prayed for, asked about and talked to on the phone, but they rarely get upset about the situation. Although their scattiness and ability to zone off into other worlds drives me mad sometimes, I am never more grateful for it than now.
3. The fact that Scooby got an infection in his hand on New Year’s Day which meant he was taken into hospital and had his bloods done daily which gave them a record of unusual activity. The fact that although he was sent home, Richard’s instincts told him to get him down to Manchester straight away (despite his tearful wife saying ‘But we’ve just got him home from hospital – I don’t want to take him back!’). The fact that although there was nothing urgently wrong, the doctors decided to repeat all the tests just in case, even though they’d been done many times before without showing anything conclusive. The fact that our amazing immunologist knew to look for HLH because his haematology buddy was a leading specialist on it, which is such a fast-acting and rare disease that every week makes a difference when it comes to diagnosis and treatment. I still can’t get over all this.
4. The fact that we decided to home educate them all this year before we had a clue what was going to happen. We made the decision when Scooby was still mainly at home and running around, and so we pictured it very differently, but it has turned out to be the right thing for lots of different reasons! We couldn’t have smoothly managed the two weekly swap-overs, including all the times we were stuck in traffic, if we had to factor in school pick up and drop off times as well as two pre-schoolers. This way they’ve been able to see their brother once or twice a week until the isolation regulations kicked in, and we’ve been able to use our support network in Preston to look after them when we haven’t been able to take them down. I have loved that being at home means being absorbed in whatever topic we are doing instead of the stresses of getting them in and out of the house and having to face lots of people on the worst days when I (and the kids probably) just wanted to think about anything other than what might happen.
There are more, but those are the ones I have been dwelling on this week. Tomorrow I will drop the kids off with my auntie and go and have dinner with my husband before he heads back up for a well-earned rest, and I have a day and a half to gather my courage before it will be time to change those bandages and I have to face what my boy is facing.
So glad we are never alone in this.
So glad there is always a way through all circumstances.
So glad He has gone before us.
So glad all things work out for good, even if it takes us a long time before we understand it.