A Quarter of the Way Through

I have just realised that we have now done 9 proton treatments which means that we are a quarter of the way through the proton treatment (ignoring rounding errors of course!). Our half way point is Friday 8th July - the same day that the shuttle is due to be launched, which seems appropriate some how. Let's hope it goes off and up without a hitch. However, as my darling husband has pointed out we are only 3 weeks into an 8 week stay. But, we will be half way through our stay on Monday 4th July which is also an appropriate date somehow. And Millie will be 2 and 8 months! All these calculations assume that we do not miss a treatment of course.

I have started saying to anyone who will listen that I want to know where I need to stand to see the launch! Millie will probably be in the middle of her treatment - we will hopefully be a little bit earlier because Ollie, who is just before us, is going to the launch. He doesn't know it yet but he is rocket mad and it has been arranged for him by the charity Make A Wish. I'm hoping that, if I keep talking about seeing the launch then a friendly proton physicist will point me in the right direction! By the sounds of it I just need to follow the physics department. Apparently they all vacated the building and watched the last one. Mind you, I think I have already spoken to one. Yesterday, Millie took in her KSC souvenir - a rubber duck in a rubber shuttle. She was proudly showing it to everyone when a man walked past and admired it and asked where we had got it from. The conversation naturally progressed to watching the launch and the very friendly man pointed in the direction I need to be looking and suggested that I find the Bank of America building and go to the top floor. I need to talk to Gina, one of the recovery nurses, about scheduling Millie at a suitable time for that day! As well as befriend some like minded people!

We might be getting through the treatments slowly but it still feels like we have a long way to go. And it is still a bit of an uphill struggle. Millie was slightly better today. She had OT beforehand so that distracted her from food. She made a bracelet for Morton (from Moorland) Bear out of pipe cleaner and small beads. She managed to do some of the beads herself which is a huge improvement on even a week ago. I still don't know if OT is really doing anything or whether Millie is naturally progressing. However, OT is useful for helping us to monitor her progression, and give us ideas of things to do with her, so we will keep going.

At proton I suggested to Millie that she show Kendra the bracelet she had made for Morton. This got her into the recovery room easily and both Gina and Kendra were suitable encouraging. We will have to try that trick again! Kim joined us for the flushing and anaesthetic. Millie Cried when she saw her drip line being picked up by the anaesthetist. Kim tried hard to distract her with flashing lights whilst I rubbed the back of her head like I did when she was younger and I still do when she needs real comforting. Millie responded slightly and calmed down briefly but her attention was drawn back to the drip line until she was out. She looked so tired on the table - the poor thing. We had a long chat with Kim afterwards about what we could be doing to help Millie feel more comfortable with her wigglies being used. Kim said that older children report that the anaesthetic can cause a slight burning sensation when it mixes with the blood. This is probably what Millie is feeling so I can understand why she gets upset. She doesn't know what it is or why it is happening. We came up with a few ideas of things we can do including distractions but also talking to her about it being a medicine that will make her better and stop her being wobbly. We also need to reassure her that the feeling is odd but that it is ok. She takes her oral medicines fine, including the one that she says is not nice. And she does that because I tell her that they will make her better. It will take a few days but hopefully it will work. I just hope she doesn't ask too many awkward questions. She has become the queen of questions recently from 'what are you doing?' (a favourite) to 'why are you holding a fork in that hand?'.

She came round very well and ate loads. We had the weekly check by Dr Danny. We were asked whether Millie had any hair loss (it should start falling out in clumps soon), any pinkness or soreness, any headaches or nausea, whether there was a loss of appetite and if she was sleeping ok. Apparently proton treatment combined with anaesthetic can cause all sorts of problems. We were able to answer no to all of the questions apart from the sleeping one. We have noticed though that Millie's speech is sometimes so slurred by late afternoon that we can no longer understand her. This might be an effect of the anaesthetic, or the proton or that she is tired. We need to monitor it and see if she slurs at weekends as well. She is better by the morning so whatever it is caused by only has a temporary effect - thankfully. Dr Danny was happy and said she is doing very well, which is nice to hear.

After proton we decided to brave another mall. We didn't have the pram with us so we forked out $5 and rented Millie a little red car to sit in that I could push. They seem to have rentable 'buggies' in many places over here. I think it is a great idea, however, it could get expensive. Millie loved her red car and she was happy for a couple of hours whilst Daddy checked out sunglasses. I wasn't having much fun though! Just before leaving the mall I took Millie to the childrens play area, inside the mall. She was quite hesitant about going in to play and wasn't happy with some of the other kids. She did eventually warm up but I noticed that she still has a wobble when walking that is not the same as any other child. It is getting less obvious but I do wander whether she will always have it. As Ollie's mum put it - she may not be a ballet dancer but there are other things to enjoy. To which I replied - Street Dance!!! I'm not sure she would be a dancer anyway, she much prefers taking things apart. We also went on the mall train (again). This one was even bigger and is driven all the way round the mall, without any tracks. It is driven round many corners in the 10 minute ride and I have to wander how many people have been knocked over by it. It was a bit wild at times. But Millie loved it, so we may get to go there again. Yippee! The best bit for me was eating some cinnamon stix - dough pastry cut into strips, coated in copious quantities of sugar and cinnamon, then baked and served with frosting (soft icing). They were a bit like doughnuts.

We got back to the house to find a notice saying that RMH had some tickets for Cirque du Soleil on Thursday evening. Ollie's mum came in to the dining room and checked whether we wanted any. There were only a few left. So I dashed down to reception, leaving my cherry pie, and was lucky to get 3 of the last 6. We have always fancied seeing a show and we now have the opportunity. I'm not sure how Millie will react but we will be with others from the house. It is also a bit late but as she doesn't sleep till 10pm anyway she might be alright. I can't believe we are getting to see Cirque du Soleil! And for free! I really can't sing the praises of RMH enough. The staff, the volunteers and the community just do so much to make a difficult time slightly easier. Just wish we could take Suzi as well.

It was 'Art with a Heart' again tonight. Millie happily went with Daddy again leaving me to chat to Ollie's mum for a bit. She has left a daughter at home as well. Ollie was originally diagnosed about 3 years ago at about Millie's age with a benign tumour but because of where it was growing it needs treatment. Chemo didn't have much effect, hence they are over here now. We talked about all sorts of things. Mainly things that very few other people will truly understand. It was good to have a long chat. Millie drew a picture of a rocket for Kendra which we will take in tomorrow. She painted for one and a half hours and was the last one to leave. I think she would have kept going if I let her. The art folks know her (it's our 4th time) and after I said that she really enjoys painting and drawing and that it is really good for her hand-eye coordination, they gave us a red bag (note the RED bit!) which contained paper, paints, crayons and oil pastels. Shelli, one of the RMH managers came by to see Millie painting and I showed her the bag and asked if we would be able to use any of it within RMH and, if so, where would be a good place. She replied that of course we could use it. Said in a way that gave me the impression that some people would not be allowed to. I get the impression that we have been watched and they have decided that we aren't going to cause any problems. Which is nice. And we wouldn't cause problems - we owe this place too much.

Millie was so chuffed with her new bag that she carried it back to the room! It is a drawstring backpack type bag which would be just right to take to nursery. She might have a choice at this rate!

Day 10 tomorrow. There is a luncheon provided at proton for all patients and families. We have also asked to be given a tour of the facilities. Not sure when that will happen but it might be tomorrow. Also, the lady that sells proton and UFPTI merchandise is in tomorrow. So we might be a bit busy.