hi woodhj! sorry didn't reply for a while there, was a bit busy once chemo started, plus am in the midst of sorting out work and stuff! hope you and your dd are doing ok, when's your due date again?
we had the second bone marrow on tue, along with vincristine and the spine injection. it took the whole day though because we had to be in around 9am to register, but the doc comes in around 12pm by that time, dd is already starving and crying for food, we started fasting at 5am because the silly nurses at the ward told us to. but the nurses at chemo said next time, we can start at 7am she slept til about 3pm, and the nurses had to monitor her til about 5. we got started on dexa, we have to take it twice daily. we asked for syrup instead of tablets, because i'm not sure if we have the energy to start her taking tablets which she's never ever taken before. nearly a week on, she's still struggling with taking the dex, but hopefully it will get better. she wasn't that weak after the vincristine etc, she could walk, but she was super hungry and ate 4 slices of bread, 2 servings of french fries n ribena. and promptly threw it all up in the car. her lips got really cracked and red/black tho over the next 2-3 days. due to the chemo. we also had a minor scare, when she had blood in her stools yesterday but the doc said not to worry unless she was bleeding continuously, had a fever and/or was vomiting. other than that she seems fine, she's having a pretty good day today, and not complaining about anything! the drugs certainly make her very irritable and she does misbehave a lot.....!
she had the asparaginase injection in her thigh on friday, and didn't seem to have any side-effects either, except she complained she found it a bit painful to swallow but that improved the next day. the nurses said to let her gargle some salt water n we did that.
our routine will be bone marrow/vincristine and intrathecal on tuesdays, and aspa on fridays, for the year. after 36 days, she will go in 4 days a week for 4 weeks for an injection. i'm getting a bit exhausted now, because the chemo centre is an hour away (not as bad as 2 hrs away, i suppose). today i woke up with my head spinning and i was sick for a bit in the toilet. had a short nap and i felt a bit better after.
the leaflets they hand out here say that patients undergoing chemo shouldn't come into contact with animals and their excreta! so we've farmed out all our cats to mum's place. i'm still a bit anal with the sanitising but what you say has certainly reassured me somewhat. the doc has told us to try and lead as normal a life as possible, and she can go to school etc but i won't risk it yet i think. none of the other mums here are risking it. i might want to send her to school after 3 months maybe if she is up to it, and her neutrophils are ok. they're about 7 at the last count dad is a bit concerned that she's not getting any fresh air but i'd rather not take the risk of any infections. doc has said that they don't die of leukaemia but from infections. dh had an uncle in his 40s who passed away 2 or 3 years ago, he had leukaemia and was due to have a bone marrow transplant but he died of a lung infection which proved resistant to antibiotics
i've just noticed that we've not been given the clotrimax drug that your dd's taking. what's it for btw? wondering if i shd ask our doc. oh, after the second bone marrow, he said that dd's bone marrow was improving, and that he expected her to be in remission in 2 more weeks! but that she still needs to continue the treatment for a year, i guess to make sure they kill off all the cancer cells for good...
have been on emergency leave since xmas, but will go back to work monday. have decided to try and work from home, and take tuesdays off, and friday halfday (since the injections only take an hour or so to wait for the doc). if it doesn't work out, i may have to cut more days...or take no-pay leave...
anyway, hang in there and hope your dd is responding well to the chemo and that you're taking care of yourself too. i know, easier said than done eh. x