Cycle 3 - Day 4

Niamh was woken up very early this morning (6am) because of the drip machines bing bonging forever. By 8.30am she was so tired that she went back to sleep and slept till 12. So she had a good peaceful morning.

She woke up happy and smiley and had the best wash this week listening to nursery rhymes. She even let me do her teeth without too much fuss. The music is helping greatly as the isolation room is still as dull as before. We are in the same room as the first cycle with just a tiny window at the top.

Niamh had a good afternoon, doing lots of standing, reaching for stars, crawling, etc. She had a good session with the physios, was in fact a bit cheeky. She seems to have more energy than the last couple of days. When the cleaning lady came (the lady always pulls her tongue out when she sees Niamh), Niamh pre-empted it and tried to pull her tongue out first. Niamh can't actually get her tongue past her teeth since her second surgery but it is great that she's trying.

She enjoyed having big sister over after school and making decorations for the bare walls. I think they have done a good job, it now feels more homely.

Niamh is in isolation because of a loose nappy last night. She hasn't had anymore since.

This evening Niamh is having a high dose methotrexate chemotherapy. It started at 5.30pm and goes on for 4 hours. Methotrexate is a very toxic and very yellow drug. She should be weeing bright yellow very soon. In 24hrs they will start giving her folinic acid which is antidote to the methotrexate. She will have folinic acid till she is 'rescued' meaning the level of methotrexate in her blood is safe.

All the drugs she has had this week are pretty nasty but the methotrexate is particularly tough. The last time she had rashes behing her ears, on her belly button and bottom, she also got a very sore mouth. She may need strong painkillers, possibly morphine. During the first cycle she only needed paracetamol. We'll have to wait and see.

High Dose Methotrexate is also very effective at killing cancer cells.

The neurosurgeons came this morning to check Niamh's bump. They pushed the fluid on her head down using their fingers. They said that it is likely that the holes in her scalp are smaller than they were and some of the fluid may be trapped on top. They said they don't want to do anything about it now as they don't think it is causing any problem and they don't want to interfere with her chemotherapy. They did say though that if the MRI shows that the fluid is just trapped, then they may be able to aspirate it with a needle and hope it doesn't come back. Obviously she would need to have good blood counts. We are pleased to hear that a shunt is not the only solution.