Niamh meets Mr Tumble

This weekend has been very special. Thanks to a very kind friend, Matt, Niamh and Emilie were able to meet Mr Tumble on Saturday morning down in Bagshot in Sussex. The charity that Matt contacted were very kind and they offered to put us up in a hotel nearby on Friday night. We set off just after school finished. The drive was long but the girls were very good. By the time we arrived at the hotel they were hyper. Niamh was shouting excitedly to Emilie 'WAIT' as her little legs couldn't walk as fast as Emilie's in the long corridor to our room. Full of giggles. They loved sharing a bed too. Despite being sick first thing in the morning on Saturday and needing a new NG tube, she was quickly back in form for Mr Tumble. We arrived at the hotel where the meeting was to take place just before 9am (the hotel was beautiful). There were about 6 or 7 families. Mr Tumble arrived, some of the kids went quiet, some shouted 'Mr Tumble'. He spent an hour with them, singing, doing impressions of some of his characters, teaching them some Makathon signs, and just being funny. At the end it was picture time and hug time too. We were quite impressed that both Niamh and Emilie felt so comfortable with him that they were happy to sit on his knees and have a hug. In fact they asked for it.
Today we took the girls to Peppa Pig World near Southampton. It seems to make sense to go as we were not too far. Once again the girls had a lovely time. Niamh was quite bunged up with a nasty cold but it did not stop her from going on all the rides. They both had a long sleep in the car on the way home. They were very happy to look at the pictures of their weekend away before bedtime. Emilie can't wait to go back to school to show her photos of Mr Tumble.


Niamh has been doing better this last week compared to the previous one. The previous one she was very tired, she was back on needing to hold two hands to walk, she kept waking up with one very swollen eye which was worrying us. This last week has been a lot better. She has had a lot more energy, her walking has been better and she is back on needing just one hand to walk. Her eye has also been behaving better. We have had a few isolated cases of sickness, which we try not to read too much into.

She is now on weekly blood test. Her platelets last Monday were 94!! Still low but a lot better. She will have another blood test tomorrow morning, really hoping her platelets are up in the 100s now....

Two weeks till the scan.....

A few pictures (more on facebook):

A few pictures since finishing radiotherapy

A Week Post Radiotherapy

Niamh has had a lovely week since finishing radiotherapy.

She has been making it clear to us, well to me at least, that she wants to socialise and see other children. She is enjoying the after school trip to the playground with Emilie and her friends. We also had a mini party on Sunday to celebrate the end of radiotherapy. Both girls loved it and would love to have a party at home every day. Hmm. We also enjoyed Severine's visit for a couple of days. Severine is 8 months pregnant and the girls were fascinated by her baby bump. Niamh spent a good amount of time sitting next to the bump with her hand on it, waiting to be kicked. Niamh also went to her first ever playgroup this week. She was amazed when she saw the number of children and all the toys. She loved it.

Niamh's old nursery closed last January which is a real shame. I think she would have loved to go back for regular visits (It was a fantastic nursery with very caring staff and lovely children). Even though she hasn't been since last September she still seems to remember the children on the pictures and she loves it when some of the nursery teachers come to visit.

Niamh is continuing to improve with her communication. She seems able to say the end of words quite well, but misses out the first letter. So a snowman becomes a 'noman', a balloon becomes 'alloon'. She can clearly say 'work', 'bye', most words beginning with N and M and 'yeah' and 'no'. We are getting somewhere.

Food wise, we are not progressing much. She did ask for a barbecued sausage during her party on Sunday. We all went a bit quiet when she put a piece in her mouth. She seemed to really enjoy it. Since nothing. We are trying various types of food but nope, she doesn't want to try.

On a positive side she is back to the normal feed through the NG Tube (not the partly digested one anymore). We have now decreased the anti sickness dose and she is coping very well. I hope that by next week she will be weaned off the anti sickness.

Niamh is still doing well with her standing and walking. She wants to be able to walk by herself but she is not quite there yet. She is getting more confident though and keeps getting out of bed or off the sofa by herself. It is kind of great but also a bit scary as once she is off her bed or sofa she can't really go anywhere.

We had a meeting with the Consultant Neurosurgeon this morning. He was pleased to see that her scars have healed so well and that she looked well too. We are concerned that Niamh is still touching her head quite a lot, especially in the evenings when going to bed. She doesn't cry though. He said that the scars can cause shooting pains (nerve) for a very long time, possibly made worse by the radiation. Niamh has also been very very sensitive to the light over the last two weeks. He agreed that this was most likely caused by the radiation.

Niamh had a platelet transfusion last Friday and since her platelets have been behaving.

Blood counts on Wednesday:
HB: 11.5.
WCC: 2.3.
Plats: 65.
Neutr: 1.5.

Blood counts today:
HB: 11.3.
WCC: 2.0.
Plats: 66.
Neutr: 1.3.

Her white cells and neutrophils (ie. immune system) are still low. We are not sure why that is. We hope to address this with the Consultant Oncologist on Tuesday.

We have received today Niamh's MRI scan date. It will take place in the afternoon of Monday 8th August. We probably won't get the results immediately this time, we may have to wait a week or two.

I almost forgot a very important bit: Niamh has now had two consecutive full night sleep till past 7am. Hoping for a third one!