some of Lucy's hair :(
Wed morning, 30 JuneFeeling a bit technologically challenged - can't figure out how to get the right date/time thing on this blog. When I post a message the little time thing at the bottom of the screen is the right time, but when it's posted it comes up as having been posted about 12 hours before. Anyway, I'll try and remember to type the actual date/time in the post and you can ignore the one above the bit where I start writing. When I have a chance I'll try and figure out how to change it again....
Anyway, this morning Lucy is having a blood transfusion, and, depending on blood tests and everything else we may get to go home this afternoon! She is a bit grumpy and not quite herself this morning, so we'll have to see if that develops into anything. The oncology team nurse has been filling me in on details of the regular medications that Lucy is on (antibiotics, antifungal stuff, treatment for constipation), and how to look after Lucy's central line and what to do in the case of any problems with the line, and procedure if there are any worries about her health or she gets a temperature. Big thing to note I think is just call if you have any worries!! Thankfully there is someone available 24 hours a day so we don't ever have to wait or worry and feel on our own. Better put those phone numbers in my phone!
They also have a community nurse who can come to your home and help with doing the dressing over the central line if we need it. This is all good because yesterday when they were re-doing the dressing her poor skin under the sticky stuff was all raw and sore looking, so it's been changed to a daily gauze dressing which I'm just not feeling so confident about mucking around with myself.
Lots more hair is falling out today which is making me feel quite sad. I knew it would happen but I suppose it's just the knowledge that it really is happening to our Lucy, and that soon she will have that baldy look that marks you out as a person being treated for a form of cancer.
Talking with some other mums here on the ward I am aware of how hard it is to explain treatment and side effects and all that to children who are older. They have talked of issues their kids have had along the way like wanting to refuse chemo, absolute fear and phobia of needles (did you know there are psychologists who specialise in needle phobia?!), yelling at their parents or the staff and things like that. In those things I am grateful for the fact Lucy is a baby and we don't have to explain everything to her, and that whilst she doesn't like some procedures usually a cuddle at the end is all it takes to calm her down. Of course she's been so well, I'm not sure what it would be like if she was feeling really nauseous or something, but we'll cross that bridge when we come to it, and hope that the cuddles keep working!
Monday and Tuesday ended up busy days with a number of visitors, including a hit of tennis at Cumberland Hospital next door with lovely Lindsey F - Adam is just amazing at organsing things to give me a break and do some exercise! Most special was the chance to go out for dinner with Adam on Tuesday while Matt from church sat with sleeping Lucy and the other girls were tucked up at Nanna and Poppa's. Thank you to those kind friends who insisted on sponsoring our meal, it was wonderful! There is a very nice thai restaurant just down the road from the hospital if you're interested....
A month or so before Lucy was diagnosed with leukaemia we were enrolled in a course to learn about Down Syndrome with an organisation in the UK called DownsEd UK. Every Tuesday night at 10pm we log on and listen to a presentation about some aspect of development or intervention relating to kids with Down Syndrome (the course is particularly about children 0-5 years). It has been really interesting and informative, but in the last few weeks we haven't really felt up to it (no prizes for guessing why!).
Last night however I logged on and listened to a talk about motor development. As lots of you know kids with Down Syndrome usually develop more slowly than the general population and have some level of delay in most areas of learning. They do however have a relative strength in visual learning, and so programmes are being developed with this strength in mind. Last night was mostly about movement and developing physicial skills. It was encouraging to know that there is nothing a child with Down Syndrome can't or won't be able to do - it might just take more practice. Often about twice as much practice as other kids it would seem. But they get there! It was good to think about something other than leukaemia treatment for a bit and although I was very tired, was worth staying up for.
Well that was a bit of an all over the place update. Let's call it 'stream of consciousness'. Here's hoping my next post might be from home and that we get a couple of days together as a family before the next cycle begins....