Waiting for news

Life is a little strange at the moment. It feels like we are getting some normality back into our life (we're home together as a family, seeing friends, etc)and yet we know that we are at a very difficult stage in the treatment of our beautiful daughter.

On Wednesday we took Niamh to Ward 10 to have some of the stitches removed. She was so happy when she got there saying hello to all the staff and blowing them all kisses. Unfortunately little did she know what was coming. Screams!!! Yet by the time it was all done, she smiled at the surgeon. She is very forgiving. Before we could go home, Niamh needed blood test done to check her phosphate level. It was frustrating when we found out that her lines were blocked and they would need to put some special product in her lines to unblock them and that takes a minimum of two hours. It did work though, lines were unblocked and her phosphate level was fine.

On Thursday we took Niamh to the Queen Elizabeth Hospital Cancer Centre for the radiotherapy preparation. She was under General Anaesthetic for a couple of hours whilst they made two masks, one for her face and one for the back of her head. They also did some very small permanent dots on her back after a CT scan. The masks and the dots are to help with the positioning when she will be having radiotherapy. It all needs to be very precise. Alex and I found the experience very difficult and quite strange. Almost all the patients were adults aged 60+ and then there was Niamh aged 2 and 9 months. Helen, the co-ordinating nurse at the centre was very kind and helpful to us and Niamh.

The last couple of days have been lovely, it has been great seeing friends. The girls really enjoyed the Princes and Princesses party they went to on Friday afternoon. They loved getting dressed up as princesses specially after spending the morning watching the wedding. It was nice to have both girls at the party (first time in 7 months). Niamh enjoyed seeing all her little friends. It was a fun day!

Niamh was a little tired yesterday (day after the party) but she still enjoyed her visitors. In fact both girls were very sad when they left last night. Emilie was still upset this morning...

In terms of what happens next, we are still very confused. Alex has had contact with a Professor at the Paul Sherrer Institute in Switzerland. The Professor has been suggesting that Proton therapy could be the best treatment for Niamh and this could be done without delay in Oklahoma. We have been waiting for the UK specialists to make contact with him to confirm this. We are very confused as it has now been 5 days and the UK specialists haven't made contact with him. We just wish someone could tell us one way or another. Is proton therapy really the best treatment for Niamh and in this case should we start raising funds? or is proton therapy not suitable?