Treatment cancelled for today - bum!

Today was supposed to be the day before our last day of treatment but it wasn't. The proton machine was down and they cancelled all of the anaesthesia patients i.e. the little kids. Including Millie. So we still have 2 more days to go and that has been very hard to deal with.

We got up and ready as normal this morning. There were signs that something was wrong but we hadn't been rung so we didn't think too much about it. We could hear Anabel outside our room and knocking on our door, she is normally treated just before Millie. The gantry waiting times on the website all said 600 minutes but because we hadn't heard anything I thought the webpage was up the spout, not the machine itself. We left the roon and found Anabel and her Mum outside in the corridor. They had bought Millie some clothes and Anabel must have been desperate to give them to Millie. I asked what time their treatment was and was told that they had been rung at 6am and told the machine was down and not to come in. I immediately rang Kim to find out what was going on. She confirmed the machine was down and the last she heard it would not be up until 2pm. I was told to feed Millie as her treatment was cancelled for the day.

I couldn't decide whether I was more annoyed at not being told or at the machine being down and ruining my nicely planned day and week. I had problems not breaking down, it was so frustrating. But I also knew that these things happen, we had been well prepared for such a possibility. I just couldn't believe it had happened at this time. So close and yet so far.

I rang Amy to see if I could find out more and complain about not being rung. She apologised and said that they had been hoping the machine would be up by 10am (our treatment time) but it now looked like not being up until 4pm. I spoke to Kim again later and she explained that the technician knew at 3am that there were problems and started notifying staff immediately. The recovery nurses were told at 5am and didn't even go in, they would normally keep the parents of the smaller kids informed. Also, Dr Danny was very hopeful that the machine would be back up soon. He was apparently very determined to treat Millie, even if she was the only child treated today, because she is so close to finishing. He is one in a million. However, they were not able to start treating patients until 5:45pm by which point they could not get any anaesthetists. They will be treating patients until midnight.

The first patient treated was Hailey - that was her last treatment. She was supposed to have her graduation party this morning at proton with everyone around. But there was noone there this evening, except Kim, so the party was moved to RMH. Hailey wanted Millie to be there and Kim arranged it! Another one in another million.

It took a long time to get over the change in the plan. I cried over it a couple of days. I was just so frustrated that we would now be finishing a day later. It effects our plans for Wednesday as well. We were planning on taking Millie to the proton lunch but I don't see that happening now. I was also counting on having Tuesday night and Wednesday to switch heads from proton to packing and leaving. I am just so fixed on getting through proton on a daily basis that I can't focus on the next stage until we are done. We fly out on Friday and will need to spend Thursday packing. I feel like we have lost a day. Good job I booked the flight for Friday afternoon and not really early Thursday morning - that would have been very stressful.

We were so thrown today that we haven't really managed to do anything. I tried to tackle some of the things that we had lined up for Wednesday. My husband thought about the packing and tried to decide whether we will need an extra case and, if so, how big. He found out that RMH have a few bags so he has had a rummage in their store and come out with two. They are both smaller than we will probably need but we don't really know what we need. One of the staff has also offered to look in their garage tonight! They are so good here, we have been lucky.

A couple of good things came out of today. Millie's head is looking considerably less red and sore than yesterday. The extra day has given her more time to heal before the next onslaught. Also, Millie and I had the chance to meet a young lady, Noel, who comes in to RMH and plays the piano every Monday lunchtime. She is willing and keen to teach anyone who wishes to learn. Millie was showing an interest in the music and got the chance to play with Noel. Whilst talking to Noel about learning piano I had a sudden thought. Playing the piano needs two coordinated hands and the ability to 'see' to the left and right. It could be an amazing occupational training thing for Millie! I will have to look into it when we get home. She loved playing the piano with Noel.

I have decided that Millie is going to be a pilot of a space plane or something. She loves moving things about and has got quite adept at 'parking' trolleys and prams and washing baskets in tight places. She also loves stars! However, I think she might have to be a piano playing, artistic astrounaut. She is forever wanting to draw or colour and even said today that she was going to be an artist! We can't complain it is all good for her.

Ho hum. Two more treatments to go (fingers crossed).