A long visit to the hospital today. Our appointment with the oncologist in the Clinic was for 11.30am. All was going great, everyone was pleased with Niamh's progress with her crawling and willingness to progress, she looks well, etc. The oncologist wanted her to have blood test done today to see whether she still needed the GCSF which she started two days ago. (The GCSF is given to help her white blood cells recover, it is an injection in the leg and it really hurts!).
At 1pm she had the last chemo of this cycle, the vincristine, had a blood test and a line dressing change. They asked us to hang around in the area for an hour so the decision could be made regarding the GCSF. Off we went to grab some lunch happy thinking that she may not need it anymore.
Disappointment when we came back an hour later, not only she still needs the GCSF and will need it for quite a few more days but also we were told that her blood counts had dropped and she needed a platelet transfusion. Haemoglobin were 9.2, Platelets 24 and White Cells less than 0.1, which means that she has no neutrophils, ie. she is neutropenic (no immune system). We were expecting this to happen but earlier in the week.
So we waited till the platelets arrived and had the transfusion done, followed by the GCSF injection. By the time we could go home around 5pm, we decided to go via ward 10 and see if the neurosurgeons could have a look at the fluid on Niamh's head where she has the scar. On Christmas day the fluid had gone down a lot and her head was near 'normal'. By Tuesday it was back up and also seemed a little firmer to the touch than usual. Also she was sick twice today which concerned us in terms of the pressure in her brain. The neurosurgeons had a look but did not seem concerned which is reassuring. They say it is hard to explain why it goes up and down but unless she gets very drowsy or the fluid under her scar is no longer soft, then we should not worry.
So we are glad to be home this evening and hoping we can stay home till next week. The community nurses will continue with the GCSF every day till further notice and also will do blood tests on Sunday and Monday. If Monday's blood results are good, then she will start Cycle Three on Tuesday. If her blood counts haven't fully recovered it may be delayed by a day or two.
Apart from all this, Niamh has been very well over the last few days, she is continuing with her progress and her desire to stand and crawl. She enjoys showing off her new skills to anyone that comes through the door. Very cute. It is hard to believe her blood counts have dropped as she looks well and doesn't seem particularly more tired than usual.
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