During this Standard Interim Maintenance phase things have actually gone quite well and to date haven’t had any hospital stays. So of course we became quite comfortable and don’t have a hospital bag packed. So as I stood there with a sinking feeling in my stomach gathering clothes to stuff into a bag, all I could think about is that I desperately did not want to stay in hospital again. Those endless days in the hospital with the machines beeping non-stop are still fresh in my mind and I hoped that when we were discharged the last time, that we said goodbye to hospital stays for a long time. But of course, things don’t work like that in “our world”. And then off we went to the hospital. Got there and went straight into the treatment room (the magic room full of all sorts of noisy toys that they use for distraction). Bianca’s temperature was lower than at home, but they did a finger prick anyway just to check her levels. We have never seen results come back that quickly, but were quite pleased that everything seemed okay. They wanted us to wait a further hour to monitor her temperature to see if it was coming down or going up. Lucky for us, it wasn’t going up and they sent us home with the instruction to keep checking her temperature regularly. Phew, big sigh of relief! But once again, just a reminder that we just can’t get comfortable, we have to be prepared.
This morning Sanna and I took Bianca and Caitlyn to Junglerama. Junglerama is an indoor playing area with a big climbing structure, ball pond, jumping castle, huge inflatable slide and so on. We went really early. Even though Bianca’s neutrophils are not exceptionally low, we still have to be careful with possible crowded indoor places, so this morning went before large crowds of runny nosed kids arrived.
On the way, Bianca said she was thirsty and I said I would get something for her at Junglerama. She said “water please”. I made a joke and said “Oh I was going to get you a coffee or a beer” and she turned to me saying “No, that would make me very fat”.
Bianca had lots of fun playing and she made Sanna go on the slide, climbing structure and so on. So I think Sanna got a bit of a run for her money. Everything was new to Caitlyn and she quite enjoyed it.