Cycle 4 - Day 3

Niamh had a good night and woke up relatively happy. We went up to Ward 10 late morning for the stitches in her head to be removed. One the neurosurgeons had a look at her bump. He was not too worried about it but said he would check with Mr Kay, the consultant.

In the afternoon Niamh complained of lower back pain again. Amazingly she showed the doctor exactly where it hurt. The doctor said it may either be related to her passing stools or she may have pulled a muscle. She was not concerned.

On the whole Niamh was okay, she enjoyed going around the ward in her pushchair and seeing everyone. She did not want to do much playing today, she seemed to struggle with her concentration once again. She also struggled to stand straight.

Mr Kay, the neuro consultant, came to see us at the end of the day. He was very kind and reassuring. I explained that the week after the second shunt Niamh had made fantastic progress, her alertness and concentration were almost the same as pre diagnosis. However over the last couple of days things seem to be regressing again, possibly suggesting more pressure in her brain.

Mr Kay explained that it was very reassuring to hear that Niamh had made so much progress after the second shunt and that it showed that once all is over, we can hopefully get our little girl back to how she used to be. He said that the most important thing now is for her to complete her treatment. It may be that the shunt is malfunctioning, or partially blocked or simply may need a different setting. He said that we know that Niamh can cope with a large amount of pressure in her brain. This has helped her a lot through the last few months and should help over the next few months. He said they would change the setting of the shunt with a magnetic device from 1.5 to 0.5. The extra fluid should hopefully drain. He says they have no reason to intervene surgically at this stage as she is clinically well.

Mr Kay is happy for Niamh to continue with Cycle 4. He has asked us however to be vigilant and bring her back to Ward 10 if we have any concerns.

Mr Kay added that Niamh is a very resilient little girl and that she is coping amazingly well with everything she has been through.

Niamh may be able to go home tomorrow. If all goes well, she will be back in hospital next Friday for three days for the Cyclophosphamide, one of the chemo drugs that needs to be given intravenously with a lot of fluids.