This morning at around 9am Bianca was watching Spongebob. So then she said "I want a Krabby Patty for lunch". If you haven't watched Spongebob, a Krabby Patty is a hamburger that they make on Spongebob. So we said that we would go to the shop a bit later and get some stuff to make hamburgers at home. Two minutes later. "I want a Krabby Patty for lunch now". "But Bianca it is only 9am". "But I'm hungry for it now". So Terence and Bianca left to go to the shops and they walked around a bit. By the time they got back it was around 11:30 and so it was time to make lunch. Bianca ate most of her "Krabby Patty". For most of it she was quite happy and playful.
Because the Mercaptopurine is supposed to be given 2 hours after supper the kids ate around 4pm. Earlier Bianca asked to have chicken nuggets for supper. But when we gave it to her for supper, she wasn't much in the mood to eat.
After supper Terence took the kids to the park.
Because the Mercaptopurine is supposed to be given 2 hours after supper the kids ate around 4pm. Earlier Bianca asked to have chicken nuggets for supper. But when we gave it to her for supper, she wasn't much in the mood to eat.
After supper Terence took the kids to the park.
By the time they got back Bianca was pretty down. She was pretty much lying on the couch not being interested in doing anything. She still smiled a bit and still played a few games, but she wasn't quite as happy as yesterday.
And I guess the effects of Dexamethasone made its grand entrance... I'm crossing fingers the side-effects will be minimal!Bianca was going to have a play date with one of her best friends tomorrow, but we will rather postpone until next week or so when the Dexamethasone is all done for this month.
Medicines today:
- Dexamethasone - 2 tablets twice a day
- Mercaptopurine - 1 tablet a night
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2 comments:
Bianca appears to be a very BRAVE little girl. We will be praying for her and for your family as you go through the treatment for this dreadful disease. Krista was so excited to see your note and where it had come from. She said that she had people all over the world praying for her. The notes make her very happy. Today we are having a rough day with our eating and keeping things down. Hopefully tomorrow will be better. God Bless your family and thank you for dropping in on us and dropping us a note.
Krista's family
Well done on reaching maintenance, life for your daughter will be much more predictable. It looks like we are on the same maintenace treatment as you and yes I too am counting the days (Nov this year.) We get a weekly blood test done which I take and drop to the local hospital and that lets us know what the neutrophile count is. Sometimes we come off chemo if the the neuts are less than 0.5 and go on 75% if between .5 and 1. Its also handy for knowing whether to relax about infection possibilites.
As regards the dreaded dex., it is so mood altering for the children and their focus on food is unbelievable. We now skip school for the 5 days as my 5 year old is just so out of sorts its easier to leave her at home. She spends those days planning meals, preparing meals, baking and looking at cook books ! We all eat well that week.
Best wishes for this new phase, I have found the time is going very quickly from one clinic to another and I hope it is the same for you,
Rosie and Leonie
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