Yesterday morning Bianca got her first dose of her steroids for this month and by yesterday afternoon she was a little bit on the emotional side and started becoming a bit clingy. Today was day 2 and whilst she coped fairly well with school, she was a bit on the tired side and she dropped some books on her foot which caused her to cry and tonight she is just not herself. She is sad, grumpy, not in the mood for playing or eating, complains of a sore tummy (but no fever) and she is very very clingy. Uggh! I hate steroids and I can't wait for Saturday when it will be our last dose for the month. And if this is how she is on this slightly higher dose, then we are going to have a very "interesting" Christmas.
The part that I hate the most of this whole steroid / chemo business is how it messes up Bianca's eating. Before she got sick she was a little bit fussy, but at least we had some options. Nowadays she won't eat things like spaghetti bolognaise, macaroni, two minute noodles and a range of other things. Getting her to eat a variety of vegetables and fruit is an incredibly frustrating thing and it is hard. If she wasn't sick and wasn't getting medicines that can make kids not feel 100% or take away their appetite or give them cravings or change the way things taste, then we could resort to time-out or something if we needed to, but it isn't her fault, it isn't because she is naughty.
It's not that she is not eating, but she is very very selective with what she wants to eat. At least she does eat apple slices and grapes (providing they are green seedless grapes) and she'll eat the same stuff in her lunchbox every single day and at least she does eat some breakfast cereals and toast, and if we go out she usually wants Subway, so I guess we can't complain too much. But still, it would be nice if we can just all eat the same meal every once in a while.
At the moment I do feel a bit tired. Last week was a busy week with Caitlyn and her rash (and then a GP visit and blood test), then there was a day that I had to sort out our annual warrant of fitness for our car and waiting for new tyres to be fitted, then on Monday this week was a public holiday (and whilst it is nice, it does throw your whole week out of sync) and yesterday was a long and exhausting (although good) hospital visit and then tonight seemed full on with the effects of the steroids. So right now I'm about halfway with my weekly house clean (which didn't go quite as planned last week and last week I managed the basics, but didn't do all I needed to do) and if we could drown in laundry, well then I guess we are pretty well on our way. And in between I'm trying to get going with a very special project (but can't say too much just yet). Today I managed to do some of what I need to do and no doubt tomorrow will be spent trying to do the rest. But we'll get through it.
I guess it is also this time of the year. It feels as if this year is just going so fast that I sometimes wish it would just slow down for just a little bit to clear my head and catch my breath. A funny thought though because part of me do wish that time would fly so that we can get through the next 10 months as fast as possible to get to that last day of treatment, although in some respects being on treatment does feel safe and going off treatment is a pretty scary thought - that's when the waiting will begin and the "what ifs" and the "is that really just a bruise?". But I'm rambling - we really can't complain because for most of it things really do go well, I look at my little girl and she is just such an inspiration to me and I look at her going to school and making friends and being happy about little things. And I look at Caitlyn being so cute and saying the cutest little things. We really are so blessed!
Jody discovered the latest Simple Plan single called Save You. What originally inspired Pierre (the lead singer) to write this song was his own brother's battle with cancer (which he won). It is a beautiful song and has such nice words and it is now one of my favourites:
Take a breath
I pull myself together
Just another step till I reach the door
You'll never know the way it tears me up inside to see you
I wish that I could tell you something
To take it all away
Sometime I wish I could save you
And there're so many things that I want you to know
I won't give up till it's over
If it takes you forever I want you to know
When I hear your voice
It's drowning in a whisper
It's just skin and bones
There's nothing left to take
No matter what I do I can't make you feel better
If only I could find the answer
To help me understand
Sometimes I wish I could save you
And there're so many things that I want you to know
I won't give up till it's over
If it takes you forever I want you to know
That if you fall, stumble down
I'll pick you up off the ground
If you lose faith in you
I'll give you strength to pull through
Tell me you won't give up cause I'll be waiting if you fall
Oh you know I'll be there for you
(Ahahaha)
If only I could find the answer
To take it all away
Sometimes I wish I could save y ou
And there're so many things that I want you to know
I won't give up till it's over
If it takes you forever I want you to know
(oh)
I wish I could save you
I want you to know
(ohohh)
I wish I could save you (oh)
1 comment:
Hi Lea,
Pete is the same on the steroids, the first dose starts things humming. Within half an hour of dose one he goes as white as a sheet and the screaming starts a few hours later. He didn't use to get bad till after a couple of days. So maybe they are getting more sensitive to the stuff.
I hope that steroid week flies by for you.
Take care,
Bridget
http://www.caringbridge.org/visit/peterpirie
Post a Comment