Today had been one of our longest days ever, we left home at 7.40am and returned at 8.15pm. Paige was scheduled for a lumbar puncture (LP) and at our review with Dr Morgan, it was decided that a bone marrow biopsy (BM) would definitely be done so that a decision could be taken by midday on whether her chemo could be resumed. By midday Mary had reviewed the results and was satisfied that Paige's bone marrow was clear and regenerating. Mary wanted to press on as much as I did.
Having only made the decision to go ahead just after midday, I was not sure what time the chemo would arrive on the ward. Today's chemotherapy consisted of Cytarabine and Cyclophosphamide. Cyclo requires hydration for 1/2 hour prior to the infusion, which takes another 1/2 hr, then more hydration for 3 1/2 hrs. So in total 4 1/2 hours!
I still continue to be absolutely in awe of our daughter, after having a LP and BM she was awake, smiling and so happy to walk around; normally she would cry for at least 1/2 hr after she woke up. 4 1/2 hours is a really long time for her to be hooked up to a drip on a trolley with the shortest line ever! But she played with her stickers and read books for 2 hours, of course by then she was bored. Lo and behold I set her on the ground and she started walking about and pushing her trolley all by herself! We were all dumfounded watching her walking around, I so wished that I had a video!! Her chemo will continue at home for the next three days.
There's always the risk of receiving sad news when on the ward for such a long time and today was particularly bad. One of the little boys that we met this year with a very rare type of tumor has now had two rounds of chemo with no success and is on his third round, if this doesn't work his parents will have to prepare for the worst. He turned 1 earlier this month, so tonight please offer up a special prayer for him, his name is Orlando, and also pray for strength for his parents so that they can cope with whatever comes their way....
What an amazing little girl you have! I am sure that her incredible spirit helps to keep your spirits up as well.
ReplyDeleteI have offered a special prayer for little Orlando and his parents, in addition to my regular prayers for all of you. God bless.
Auntie Nancy