Well we managed to get home Thursday night after a bit of a battle with the blood tests - we were all packed and waiting for the results of Sarahs 12 noon blood test at 5.30pm, which was the time they come through - Wednesdays was 0.25, and we only had to clear another 0.05 to be allowed home, so nurses were on standby to disconnect the dreaded fluid, and send us on our way.5.30 came and all blood results were on the computer EXCEPT the Methotrexate levels!! Nurse Jenny called the biochemists and asked where they were, and they said the bloods were received at 4.15pm and the Methotrexate levels were done at 4pm, so the bloods were late, so no levels measured. They refused to retest for the levels without the OK from a consultant! Jenny called the consultant, who called the biochemist to authorise the re-test, then we had to wait while they did it - UNBELIEVABLE!!! The doctors refused to allow us to leave or be disconnected from fluids INCASE Sarah hadn't cleared - she had probably cleared about 2 hours after yesterdays blood was taken as it was so close, but it was more than their job was worth........so we played endless games of Uno while we were waiting. Eventually, Sarah was given the all clear and we made our escape! Friday she managed to go to school, although she was a bit tired - it always does her good to get away from me, and into the company of friends rather than doctors, physios and nurses.
Today Sarah had a day of rest while Katie and I went to hockey ,with a chinese takeaway for tea - not sure if its the steroids or just boredom, but she hasn't stopped eating for weeks now - the sickness has been non-existant, and nothing fills her up - she has grown 4 cms since the end of April, and is looking tall and slim. Now she is up and walking a bit, everyone is commenting how tall she looks - the nurses only usually see her sitting or laying down!! She has only lost 3 kilos since the start of treatment, and I am really surprised she isn't the size of a house considering what she eats every day!
We are going back into hospital tomorrow by hospital transport so could arrive at any time knowing their track record for timings - we are supposed to be there by 6pm, but have to be ready for collection by 3.30pm!!! Dave has to take Katie to Somerset for 2 hockey matches, then back to school - quite glad I'm not going......
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2 comments:
Hello only us again! Sounds like a drama getting out the door last week what a pain! They do quite a meth level at Marsden, 48 hrs and then 60 so if you nearly cleared you can still go sooner than another day. And apparently if you still don't clear at 60 they do a 66! Whatever they can do to get your bed I think! Back Thursday again for the next one and think that is the end of fourth cycle but am losing count all rolling into one! Rose really hoping you will come and do some physio at Stanmore with her next time but I'm sure you would rather be at home and school than in the gym with us! Hope your week going well keep eating and not being sick sounds brilliant all our love xxxxx
Keep up the good work "tall, slim" Sarah! Be up to see you soon. Lots of love, Auntie Jan xxxx
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