Day Ten - First day of proton

It's done! First day over, 32 treatments left to go.

Millie woke up at about half 8 and I purposefully took it slowly getting her up and dressed so that she didn't have the chance to think about eating. We managed to get the medicines into her without milk, just a few slurps of water about 2 and a half hours before her aneasthetic was due. I spoke to an aneasthetist about it later on and he would prefer them to be done 3 hours before, at the latest but that might mean waking her up. At one point I did actually tell Millie that we wouldn't be having breakfast yet because we had to go out. She went "Oh! OK!". And I managed to distract her with her new trike as well. I sent my husband down to get something into him because he needs it in the morning. I didn't manage anything but I was too nervous to eat. Suddenly we had about 10 minutes before we had to leave and nothing ready! Mitch drove us again. I sent my husband to get Millie's car seat out of our car because she said she didn't want Mitch to drive us. However, when I got her to Mitch's car she was happy to try the seat that was already in it so we did and she stayed in it. The fickle mind of a toddler!

We arrived at the Proton Institute an hour before Millie's appointment as we were told. We checked in and then sat around the waiting room expecting someone to come and see us. Nobody came. About half an hour in Millie started saying she wanted a drink. Well, she started shouting it and crying. It might have had something to do with the fact that I was trying to have a sneaky drink and she saw me. A nice gentleman came over and tried to distract her. Which worked vaguely. Fortunately, Jacob and his family came in and she was totally distracted. She is getting to like Jacob but she has always been one for the boys! She even tried to give him the dolly she had picked up from the playroom! It got to minutes before our appointment time and I was just wandering if something had gone wrong when my local cell phone rang. It was Kendra, one of the nurses in recovery, to say we could go round now as they were ready for Millie.

We went into the recovery room which is were they also prep for the anaesthetic. We were shown to Millie's bed for today and I think that is when Millie started to decide she didn't want to be there. Certainly when Kendra tried to take her obs Millie put up a big fight. They decided to do the obs after Millie was asleep! Kendra then tried to put the saline drip into Millie's wiggly and Millie struggled so much it took all my strength to keep her hands out of the way. I have a nasty feeling she managed to kick Kendra in the face as well. Once she was hooked up and we had signed the obligatory form I carried Millie to the "red" room or gantry. There are 3 gantries - red, blue and yellow. As soon as we got in to the room Millie started screaming and wriggling again. I had to hold her very tight. She screamed louder as more and more people followed us in. The anaesthetists put the anaesthetic into a tap in the saline drip about 2 feet from Millie's wigglies and behind her so, in theory, she has no idea what is going on. She screamed until she fell asleep in my arms. At which point it is important to hold her head and she is then layed down on the bed and we leave, with a goodbye kiss.

To give her her due, I was nervous for her and it was a damn scary place. A bit like walking into a sci-fi set. I'll try and get a better look tomorrow so that I can explain it better. All I really remember is it being a tight squeeze with all the people and the bed and seeing her "beanbag" that she would be put on to be 'loaded' into the machine. She also has to wear a specially made mask. Talking to a couple of other people, including a very brave 12 year old that stays awake during the procedure, the mask is pulled on and is very tight fitting, it is then securely attached to the board that they lie on so that they can't move at all. I guess as they are firing fast moving protons at you very accurately then you really don't want the subject moving. The whole point of being here is the accuracy of the treatment. But I am so glad she is asleep when it happens.

We still hadn't spoken to Dr Danny about the final details of Millie's treatment so I asked the recovery nurses. Gina phoned him for us and said he would be with us in about 5 minutes. Whilst we were waiting Jacob came into recovery to get ready for his proton. And I realised that Ollie was asleep in one of the beds and the Shevan woke up. Looks like they have all the RMH brits close together! Dr Danny turned up about 15 minutes later, which isn't bad for doctors! He came in with a very scary bit of paper showing 3 CT images of Millie's head. A large amount of it was coloured green which turned out to be the bit that no longer contains any brain. Admittedly, some of that was also missing ventricles but it was pretty sobering. He took us through how they are going to treat her, what bits of brain will be at danger of radiation damage and the number of treatments she will receive. She will need 33 treatments in two phases - 30 plus 3 higher dose treatments. They will use 3 beams each from a different direction and one at a time. I thing it takes about 15 minutes per beam. And they have to check each time that the next one is lined up accurately. I am a little vague on the areas at risk because I wasn't able to take it all in - I shall be asking questions in a few days when we have sussed this bit. But she will probably have problems with some neuro cognitive stuff and her growth hormones will have to be monitored closely. The hearing on the right may be affected and the area of the brain that deals with processing vision from her right eye. She will also lose her hair from a large part of the left side of her head and it may not all grow back. It was a pretty scary meeting that took about 3 minutes. The phone rang whilst he was talking and he dashed off to a computer. He then came back and said that they had finished the first field (beam) and were just starting the second. Talking to some other parents later we discovered that his dash to the computer was to check the alignment for the second field.
My husband and I went and got some food from the hospital next door and then joined Jacob's family in the computer room which is a small quiet room off the waiting area. There was another Mum in there who's child is further through than we are. It was good to meet someone else going through it as well. After about an hour since Millie went in an anaesthetist, I think, (she was in a green like the others but I didn't recognise her) came in and said that Millie has done well and that she was still sleeping in recovery. It was really nice to be sought out and told like that. All though I did think that it was an odd thing to say - Millie slept through it all! About 20 minutes later I was rung to be told that Millie was awake and we could come down. She had been woken by Jacob crying in the bed next to her! We could near her cries from down the corridor. I think she was more upset by the fact that she wasn't wearing her top or one sock. She is quite weird about her clothes, she does not like to take them off for any length of time. Changing her is hard work and getting her to take her socks off - well, that just doesn't happen for days at a time! We had a pink drink, and a straw, ready for her which she readily drank. I then offered her blueberries, yogurt or mini sausages - she went for the blueberries. She calmed down eventually, especially when she noticed Jacob next to her. I think seeing Jacob go through this as well will help her.

Mitch drove us back to RMH and I took her straight to the kitchen to get more food into her. She had some mini sausages and a bread roll and more to drink. She was pretty grumpy until she had finished eating. Then she wanted to go and play. She was a little wobbly on her feet for a bit but it had worn off within the hour and she was in the play room as if nothing had happened. She had a huge amount to eat at tea almost as if she knows she won't get breakfast again tomorrow. After tea we played bingo and won 4 prizes between us. Roddy and I got bingo at the same time! The rules of the prize receiving was that every child in the room or in the hospital but represented by a parent was to get a prize first. So if you won 2 prizes you could choose for your child and then had to nominate another child to get a prize. They were nice prizes - Millie got some playdough and we got our eldest a bag for packed lunch. For the other 2 prizes we nominated Hailey and Jake because we have got to know them and their families over the last few days.

Millie was shattered after all that (so were Roddy and I) and she finally settled to sleep. We do it all again tomorrow. One down - 32 to go. Just looking at the calender - we should be finished (assuming we don't miss more than a couple) by the end of the first week in August. We will hopefully be flying home that weekend (6th/7th Aug)  if not a couple of days before. However, we have a long journey ahead of us. One step at a time.