End of the second week - wahey!

Feels like it has been an age since I last wrote a real update. Various things have got in the way of finding the time to do a full update.

It has been a busy couple of days. We have now done 12 proton treatments and are feeling more practised with them. Millie is still not enjoying the bits where the wigglies are involved but she is getting into the routine with the rest of it. She knows she can not eat until she has seen Kendra and the wigglies have had their 'medicine'. We have got into the routine of playing in the waiting room play area for 20 to 30 minutes and then going round to Kendra's room. I have started making sure we have something to show Kendra and Gina because Millie is then happy to go there. Sometimes I suggest we go and see if there are more puzzles/toys/pens in Kendra's room and that also works. She has got really into doing puzzles recently which is good for using her hands. Kim has joined us for the last couple of days to try to distract Millie, although she wasn't with is today.

Yesterday Millie had a sort of panic attack when Kendra flushed her line. She was breathing fast and crying and was inconsolable for a few minutes. I gave her a big hug and stroked her neck which calmed her down a bit and then we distracted her which actually worked! Going into the proton room she started panicing again but Kim managed to get her attention and distract her until the anaesthetic went in. Immediately Millie felt that she kicked off again, however it was for long as she was soon 'asleep'. I had another chat with Kim about how we can make it easier for Millie. The night before I had been talking to Millie about taking her medicines and mentioned, very briefly, that her wigglies have medicine when she sees Kendra (poor Kendra is going to be blamed for everything!). Millie turned round and very clearly said that she wanted me to give her wigglies the medicine next time. I was pretty shocked for a couple of reasons - discovering that my small child was now able to understand what was going on and express her feelings so eloquently and the thought of being responsible for flushing her line and maybe doing the anaesthetic. Some of the older children, like Ollie, get to 'push' their own anaesthetic (with supervision of course). I mentioned it to Kim and she suggested I talk to Kendra and Gina about the flushing but thought it unlikely for the anaesthetic. We also talked about letting Millie have some control over it and involving her with the line flushing in particular. We also talked about ways we could help her to be more comfortable with her wigglies. There is a lot to be working on and I'm so grateful for the help.

Today Kim wasn't around but when we walked into Recovery another little boy, Bryson (5 years old and from the US) was having his line flushed. Gina was very quick thinking and asked Bryson if Millie could watch. Bryson and Millie are in recovery together before and after treatment so Millie has started to recognise him. (We need more girls!). Bryson pushed his own water with help from Kendra. Millie was definately taking it onboard. When it came to her turn Gina got her to help give her wigglies a drink and, amazingly, Millie did help and it was all a little bit calmer. ALthough she still felt it go in and said it was cold. Yesterday Kim gave Millie a 'Chemo Duck' which has it's own wiggly. It's yet another cuddly but it has so far gone everywhere with us and she likes to show everyone Duckie's wiggly and say that she has one as well. Gina has suggested that we practise giving Duckie his wiggly medicine and we have been given a couple of syringes that fit on the end. This evening Millie successfully pushed the syringe in and kept repeating the play action. So this tactic might work. Let's hope it does because the crying is pretty hard to bear each day.

On Wednesday UFPTI held a luncheon for all their Proton Patients. Millie was having her treatment but we went along to have some of the food and see what was going on. There were well over 100 people there, however about 97% of them were male prostrate patients and their wives! They treat prostrate cancer very successfully, about 65-70% of their patients have prostrate cancer. We found out about the balloon club - don't ask but you might be able to guess! The guy running the event talked a little bit about the place but his main point was about supporting the kids that are here for treatment. We were the only parents in the room. He was asking for money to support the pediatric services they provide e.g. Kim and Katie and the play areas etc. He then moved on to what I assume is a main part of each lunch - getting patients up and talking about themselves and their experiences. So he started with those who had finished their treatment and were back for a check up, then moved to those about to finish (or graduate) and then to those who were doing their first lunch. I had been feeling all along that I needed to stand up and say a bit about Millie and help get some money for UFPTI and I got my chance. The words did not come out very well because I was also fighting back tears but I think they got the idea. I think I just kept thanking everyone. As soon as I sat down the guy next to us started asking questions and a few minutes later the luncheon was wrapped up. Before I knew it we were surrounded by people - staff and patients. The staff wanted to thank me and Katie and Kim both came to check I was ok. I said that I would be happy to stand up and talk anytime if it helped to raise the awareness of proton for kids. The patients all came to wish us luck and say they would add Millie to their prayers. We now get recognised by many of the other patients and there are a few men that like to stop and chat with us and find out how Millie is doing. Many of them have moved here, from all over, for the two months of their treatment so are probably quite lonely, which I guess is one of the reasons for the luncheon. Millie has no idea why she is the centre of attention but deals with it well by fluttering her eyelashes at them! The number of times we hear the word 'cute' as people pass us by .... they adore her red hat!

This afternoon Millie had a hearing test. It is supposed to be test to get a baseline so that we (the doctors really) know if her hearing is affected by the proton treatment. The beams are going very close to her left ear so there is a slight risk that it could be damaged. I have to be honest, I am not sure whether the damage will be occur during or after treatment. She passed with flying colours which is great news. She has got better hearing than me! One of the tests is to sit on a sound proofed room with speakers on each side but slightly forward. Millie sat on my lap. Whenever a sound was played and Millie looked toward that sound a cartoon snippet was played as a reward. I had to keep real still and quiet so that I didn't influence the test. Towards the end I couldn't hear anything but Millie was reacting and the TV's kept coming on! She apparently has very good hearing, the doctor took the sounds down even lower than normal and Millie still heard them. It is good to know that the tumour and surgery have damaged anything. We will see what happens with proton.

It is July 4th, Independence Day, on Monday so proton (and everything else) is closed for the holiday which means we have a long weekend. We could do with the break. We aren't planning on doing much - just taking it easy and wandering around to see various things. The house is quiet again. Many of the more local families go home for the weekend leaving the "Brit Pack" and a couple of others, including Hailey and her family. Hailey is 12 and doing proton as well. Shevan is unfortunately feeling very well following chemo last week. He is also getting a higher dose of radiotherapy for his last few treatments and his Mum thinks that is what has knocked him sideways. He went into hospital with a very high temperature on Wednesday and they have been transferring him to proton by ambulance. He is due to finish on Wednesday and their flights home are booked for the Thursday. We are all hoping they can make it. This evening, after tea, the rest of us from the UK went and found an ice cream parlour and we all had some very nice ice cream. Shevan and Mum were missed. It was a nice trip out and we had some music (from an ipod) when we got back!

Second full week finished. 12 days done - 21 to go. This time next week we (hopefully) will be half way. When I look back it feels like it has flown by but we still have a long way to go. And seeing Shevan so ill at the end of his treatment has made us all think about what can happen. We just can't plan a definate date to come home until the very last treatment.