Monday, June 14, 2010

This afternoon I am home with Emma, Jasmine and Madeline. My heart feels heavy and slightly anxious every time I leave the hospital, and I feel the distance between my baby and me very keenly. It is hard to leave, but I need to, both for the other girls and myself and Adam needs time with Lucy too. I just always wonder if she will be different when I come back - will she feel ill, or have a sore mouth, or tired, or scared at what her body is doing that she doesn't understand? Will she want to breastfeed anymore? Apparently it's often about 7-10 days after the start of chemo that kids start to feel pretty bad. But, we are led to understand that some, particularly little bubba's, can just sail through with very little in the way of side effects. Praying that she will fall in the second group! We are at day 4 of chemo today (last day for this cycle), so day 7 is fast approaching. Originally I felt anxious about the prospect of the nausea and vomiting that chemo can cause, but it seems like that is able to be well controlled and Lucy hasn't shown any signs of that. The thing I'm most anxious about for her is the possibility of mouth ulcers which can be extremely painful and make eating and drinking very difficult. Please pray that she might be spared from this awful possibility.

It's really hard to know what to do about breastfeeding, and although everyone says not to stress about it, of course I am a bit. It may be that she weens herself which I suppose would be fine, but managing the juggle between the hospital and Lane Cove, it's tricky to keep doing feeds and maintain my supply. I think that the medical staff and dietitian probably feel that she will self ween soon, but I just want to be told what to do! Sadly though, there is no study or evidence about how beneficial breastmilk is to a 10 month old baby with leukemia and down syndrome. Not a very big class to sample! Anyway, will try not to stress, but it's something I feel like I can do for her, so I'm keen to try hard if it will be helpful, but expressing and all that is really hard work! I suppose after working hard at the beginning to establish feeding well, I'm loathe to give it up. Why is nothing simple???

On a happier note, just before Lucy's diagnosis we were very excited that she started sitting. We were keen to go and show off at Early Intervention, but sadly for the first time ever the week after she started this new trick her physio and early educator were off sick and so we never got to show them. Anyway, I've popped in a photo of her sitting so you know we weren't kidding!
The other photo is of all 4 girls together in March this year. I thought for those far away you might like to see the whole bunch of cheeky girls! The 3 big ones love their little Lucy very much, and Emma especially is missing her little room-mate. Please pray they will understand and be able to express how they are feeling about all this.
love Liz


Staces said...

Cheeky little monkeys all four of them!! Such a grogeous photo of all of them together - LOVE IT!! And Lucy's little "look how clever I am to be sitting up" smile just says it all!! With lots of love and constant prayers my dear friend. Karin xx

Wendy said...

Thank you from one of those who is 'far away' - photos much appreciated! They are lovely. Love to you all. Wendy

Mandy said...

Glad to be able to pray to our great God for you all ... and thankful for blogs and google reader that make it easy to know what is going on and what especially to be praying for. xM