Little Feet - Long Walk

Hello and welcome to my blog. This blog is the journey of our family after Millie, our 2 year old daughter, was discovered to have a large brain tumour. The tumour was caused by an aggresive cancer named anaplastic ependymoma. Please feel free to read as much as you want and spread the word. If you want to know more details about the diagnosis then it is best to start at "The beginning ... " which was written in May 2011. But you are welcome to follow us from today. I have created pages that summarise the events leading up to the start of going to Florida for proton radiotherapy at the beginning of June 2011, about 8 weeks after diagnosis.

Thursday, 30 June 2011

Why I Blog

I have just spent the evening sorting lots of other stuff out - life still goes on unfortunately, even if we do feel like we are becoming more and more detached from it. I don't have time to do my normal blog but I wanted to write a little bit about why I write a blog. It has been the topic of a few conversations today and is on my mind.

I originally started blogging because we kept being asked how Millie was and what was going on. After repeating myself a few times every day I decided that I needed to be able to direct people to somewhere that had all the information for them. Writing the blog means that everyone and anyone can now get the latest and the history, with nothing missing.

Since being in Florida my blogs have become edited versions of the emails I write to my mother every night. I am very close to my mother and
would be ringing her up every day if we were at home. The emails I write are a poor substitute for those phone calls but they work. However, over the past few days I have come to realise that writing the emails and blogging has become quite therapeutic. We are going through a tough time. We haven't had much time to take in what is happening to us. There are very few people that truly understand what we are going through. Some of those people are staying here and we all support each other. But blogging (or writing to my mother) is my way of going over the days events and getting it off my chest. I then sleep better. The other day when we lost the internet connection and I didn't write it all down I had real troubles keeping it together the next day.

There is another hidden benefit to blogging. Your support. I get to see how many people are reading my blog and that, in a strange way, helps to lift my heart because I know you all care. I don't know who you all are but that doesn't matter I am just grateful that you care and want to know what is happening to Millie. However, it is also terrifying that I have such a large audience.

So, Thank You for reading my latest blog. Thank you for your thoughts and support. It does mean an awful lot to us.

Wednesday, 29 June 2011

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.

Tuesday, 28 June 2011

The Start of Week 2 of Proton

Firstly, I would like to thank everyone in our small village for all of your support and all of your fund raising efforts.

Thank you to everyone that helped with the Breakfast Club on Sunday.
Thank you to everyone that donated food and coffee and musical talents etc at the Breakfast Club.
Thank you to everyone that attended and had breakfast.

Thank you to Sandy and Jim for your cycling efforts. I hope you recover soon.

Thank you to our primary school and in particular Year 6 for organising a bring and buy cake sale.

THANK YOU everyone for your support. We really, really, really appreciate it.

A short(ish) blog tonight because it has got late and I need more sleep!
Millie was very tired this morning, after yesterday, so I woke her up as late as possible but in time to get her ready for occupational therapy (OT) at half 9. We had Diane again today, it was nice to have a familiar face. She had Millie throwing and catching a ball and then we went and built towers and things with some bricks. Millie was really not very interested and it took all three of us to encourage her. I still haven't worked out whether the therapist wants us to be involved or not. I just have to assume that if we are in the way she will say!

When we arrived for OT we were told we had physical therapy (PT) at half 10. So after OT we went for a little wander out into the hospital grounds and walked along the river for a bit. We got to see one of the huge and very slow trains come over the railway bridge. It had 2 engines and 26 carriages, and when I say carriages, each one was carrying a shipping container, some were carrying 2 containers! The railway line runs a few blocks away and we constantly hear the horn of a train as it goes, very slowly, through this highly populated area. The railway bridge is one of those that lifts up so that boats can get through. To the satisfaction of my husband we also saw how the bridge operates! It was then time for PT. Millie was so hungry and tired that I didn't think we would get anywhere. However, Gina (yep, another new one) gave Millie the chance to choose any toy she could see in the huge and well stocked walk in cupboard. Millie chose a house which came with Winnie the Pooh and friends. Gina put the house at the top of the stairs and made an obstacle course for Millie which involved a balance beam and a slope made of crash mats, as well as the stairs. She then encouraged Millie to take the small characters to their house, through the obstacle course, and play in a slightly crouched position. Millie was exhausted by the end and refused to walk the stairs anymore! She just sat on the bottom one!

We have been given a list of appointment times for OT and PT over the next few weeks. We seem to have both on a Tuesday and Thursday which I'm not sure is a good idea. I think it is going to make her very tired which will mean that getting to proton whilst happy is not going to happen. However, I'm not sure that doing something for four mornings is going to work. And I'm also not sure about doing them in the afternoon because she can be quite wobbly. I will talk to Amy tomorrow.

Proton was tough. She didn't fall asleep on the way and she would have benefited from a few minutes. We got through the wait, they were running 20 minutes late so it was a good job we were late after therapy. However, she wasn't happy when the nurse (someone different and I can't remember her name) flushed her line and attached the drip. Although we did eventually distract her but it is getting harder and I don't know whether that is because we have run out of ideas and energy. When we took her into the proton room she was fine to start with but she then saw the anaethetist pick up the drip line and start to put in the anaesthetic. She started to cry and object quite strongly until she passed out. She came round ok and was bright and chirpy once she had some food inside her but I really don't know how we are going to manage this for the next 5 weeks. It is going to get worse if we don't do something. And I will be a nervous wreck. I am pretty sure that Millie can feel the fluids going into her through the line. She certainly has when Petra flushed her line and she complains that it is cold when it is done here. Although it doesn't hurt it is obviously an unpleasant feeling for her. I spoke to Kim about it. Her job is 'Child Live Specialist', I have no idea what that means but she is employed to help kids get through their proton treatment as easily as possible. She is going to join us tomorrow and bring some things to distract Millie at the right moments. She suggested trying to distract her with something that is textured or touch associated so that she doesn't notice the fluid so much. We will see how it goes tomorrow. Hopefully it will be better but Kim is going to work with us for as long as we need her to.

We had a quite afternoon of playing inside and doing bubbles outside in the soft, warm rain. The bubbles worked really well at entertaining her and in giving her lots of practise with turning, looking up and down, reaching up, squatting and hand-eye coordination. We will be doing that one again! She was exhausted at tea time but, yet again, she had a second wind at about half 7 and despite being in bed for half 8 didn't fall asleep till 10pm. I had to rub her feet again - I think she is getting to like it!

More OT tomorrow, followed by day 9 of proton.

Monday, 27 June 2011

The Coast Road of Florida - well, some of it!

We have had quite a day. We tried to skype home today but there was no internet connection in the hotel when we first tried, so we went for breakfast at the Waffle House next to the hotel. Millie and I had blueberry waffles with maple syrup, my husband had a pecan waffle and a bacon 'biscuit' (a toasted english muffin). Our best breakfast yet and it only cost $15! We might be doing that more often. When we got back we tried to skype you again. We had an internet connection but my parents weren't there.

After breakfast we packed everything up and checked out of the hotel. We did think about going back to the Space Center but decided that it was too late to see the bits we didn't see without the crowds. One of the things we wanted to do was the tour that gets as close as possible to the shuttle on the launch pad. The tour had been sold out when we went yesterday and I looked online last night to see if we could reserve for today. Unfortunately the first available tour was at half 11 which was too late to do everything and get back to RMH at a reasonable time. So, we decided to check out the Merritt Island Wildlife Refuge which is north of the space center and on land that used to be owned by NASA. We started with the  Visitor Center which is closed on Sundays between April and October. So we followed the map to a couple of short walking trails. We got about 10metres in and decided to go back to the car. The biting bugs were far too much for us to cope with and because Millie was walking we were going at her slow pace so they just mobbed us. Millie was getting a face full. Instead we went and did a 7 mile wildlife drive! We saw a number of different types of water birds but it was obviously the wrong time of year and day because there wasn't much. We got out a couple of times but the heat (and bugs) kept those excursions short. We didn't see any alligators, and I really wanted to see one in the wild. However, we did see loads of black-headed vultures including a group devouring a wild pig at the side of the road.

On the way out of the refuge we stopped at a "Manatee viewing stop". There weren't any manatees but there were pelicans cruising overhead and occasionally crashing into the river to catch a fish. And a dolphin swam past - yeah, seen a dolphin at last. We spent about 20 minutes just watching this very different scene and listening to the thunder behind us and getting closer. As we got into the car it started to rain.

We left the refuge some time after 2pm. Millie was hungry so I kept her happy with some crisps whilst we drove north on US Route 1 which supposedly goes up the east coast between the Florida Keys and Georgia. However, you can't see the coast because (a) you aren't actually that close and (b) there are always buildings and trees between the road and the coast! About 15 minutes or so after we left the wildlife refuge we went through some form of civilisation and saw a Burger King and a Publix (supermarket chain) on the other side of the road. After a quick U-turn (we are still getting used to driving here) we pulled into the car park and decided to try the Publix for a sandwich before risking the Burger King. Fortunately for us, nestled up next to the Publix and almost invisible was an Italian Steakhouse which we ventured into instead. We had a very nice meal served by a very nice lady who will be adding Millie to her prayers. We did a quick walk round Publix, for curiosity but also to stretch our legs, before continuing our journey north and to Daytona Beach.

We arrived at Daytona Beach in the early evening. Many people were leaving the beach having been there for the day but also many people were arriving for the evening. We paid $10 to park near the pier. A rip-off we felt and we wouldn't normally pay it but a quick scout round in heavily traffic-ed roads gave us no option. We spent a couple of hours there soaking up the atmosphere. Millie wanted to walk on the beach so we walked down to the water and saw a dolphin cruising past. Then we saw numerous pelicans flying over head. It is a different world! Along the waterfront was a street full of beach shops selling the normal assortment of printed beach wear and little else. There was also a small entertainment park which had a ferris wheel. Millie watched the wheel intently and when I asked if she wanted to go on it she tentatively said yes. So we went on it and had a rather cool view of Daytona Beach. Millie wasn't overly impressed. She hung on to me with one hand and her hat with the other, and she refused to smile for the camera! Millie and I then shared a large single scoop ice cream (american portion) by which point it was about half 7. And we really did need to get back to RMH.

We left Daytona Beach on the coast road byt rejoined the Interstate route 95 shortly afterwards and were back at RMH shortly after 9pm. I fed Millie a jam sandwich whilst my husband unloaded the car. Millie wanted to play so I gave her 10 minutes which she barely managed before she decided she could barely stand! I carried her up and took her through the routine and she fell asleep fairly easily. Apart from her twitchy feet which calm down when I rub them. I had thought we didn't have anything other than proton at 11am tomorrow but we do have occupational therapy at half 9. So, looks like I will have to wake everyone in the morning. I was hoping Millie could sleep for a bit longer.

Oh well. Back to real life. It was nice to get away for a couple of days and temporarily forget why we are here. We missed our eldest and I'm sure she would have enjoyed some of the weekend as well. I hope she doesn't feel to jealous or left out.

Day 8 of proton tomorrow.

Sunday, 26 June 2011

Kennedy Space Center

We skyped home before breakfast from our hotel room. Unfortunately we lost the internet connection, I guess that is what comes of using the hotel's free wifi!

The hotel is very basic with 2 double beds (not really any better than the ones at RMH), a desk, a very uncomfortable chair, a TV which has been switched on for about 5 minutes to check the weather, and a minute bathroom. Breakfast this morning was not worth getting up for. It says it is continental but it consisted of self service toast, cereal, fake juice and coffee. I know we haven't done breakfast for a while but that was a real let down. I think we are going to try the Waffle House next to the hotel for breakfast tomorrow! After breakfast we threw stuff into the car and drove the 11 miles to the Kennedy Space Center. Yeah!!

It was quite exciting driving up the road, through the most amazing wildlife we've seen so far, and seeing the Endeavour shuttle (probably a mock up) and rockets on display. The car park was only about a quarter full so we had timed it well. We went on the bus tour around the Center first - it was recommended that we get it over and done with whilst it was quite. It has 2 stops and can take between 2 and 5 hours to complete. The first stop was at the viewing platform for the launch pad that Atlantis will be launched from on 8th July. It was there already. However, the viewing platform is probably about a mile away so you can't see much. Also, the gantry encloses the shuttle so all we coudl really see was some huge scaffolding with an orange rocket head poking over the top. But it was still pretty awesome. You could also see the Vehicle Assembly Building where all the checks take place and then the shuttle is mated to the rockets and it is then moved about 3 miles by a crawler (a huge vehicle that moves inch by inch along a gravel track). They retrieve and reuse as much as possible from every shuttle launch to save money but it means they have to check every single piece thoroughly. This being the last launch will mean that process will end. That must be a sad day for everyone involved, the shuttle program has been going for over 30 years. However, they are going to patch Atlantis up and put it on display at KSC. So if we want to see it up close we need to come back in a year or so!

The second stop was at the Saturn V/ Apollo Center. Hanging in the hall is an absolutely massive, fully restored Saturn V rocket. It is made up of bits (stages) destined for Apollo missions that got cancelled so were never used. It was, of course, the Apollo 11 mission that got Neil Armstrong and Buzz Aldrin to the moon. Only 12 men have walked on the moon - so far. The rest of the hall had various exhibits from Apollo missions including space suits, and the van that carried the suited up astronauts to the shuttle. It also had a photo stall where you could get photos done and mocked up to look like you were in freefall in a shuttle, or in a space suit etc. Yes, we did succomb. Photo of Millie attached! Even better, we were only charged for 1 photo because of human error! But don't tell anyone!

By the time we left there, via the gift shop and food, it had gone 2pm and the weather had changed. It was raining and thunder was rumbling in the distance. The rain was warm which was bit weird. We wandered round for a bit longer but we were all getting quite tired, especially Millie who had dozed off on me in the bus coming back but had woken up when I carried her off the bus. We decided to do one more thing before hitting the Space Shop. We went and checked out the Star Trek exhibition that is currently showing at KSC. It was pretty cool as well. It had bits from all the series, including costumes and fake heads showing the make up, and a couple of the sick bays and some of the captain's chairs! The shop was huge and we spent some more money!

Millie fell asleep on the drive back to the hotel and didn't stir when I took her up to the room and laid her on the bed. I poked her every 10 minutes but she slept solid for over an hour. I eventually managed to get her, and my husband, awake at half 6 and walked them to the Durango Steakhouse that is on the hotel premses. Millie was starving and screamed intermittantly until her mac 'n' cheese arrived with fries. I had fish for the first time in weeks and my husband had spare ribs! I think we have missed good/real food. Still no veggies though! Millie does remarkably well in these situations. It isn't easy being away from home (and your sister) and being hungry in a strange place where you have to wait for someone to bring you food. We all miss home. But it is good to have got out of RMH.

What are we doing tomorrow? Well, we could go back to KSC and do the bits we missed. Or we could go and check out some of the local wildlife. When NASA bought land for KSC they bought too much. Rather than sell it they gave it to a couple of environmental organisations in the area. Also, because a lot of NASA's land is closed to people the wildlife gets to roam free and is protected. There is a national wildlife refuge right next to KSC with walking trails and even a 7-mile long driving trail. It might give us another view of the shuttle. It might also give us a view of some of the extraordinary birds,  mammals and reptiles there are round here, including dolphins and manatees. We are also thinking of being brave and returning to RMH along the coast road, Route 1, instead of the boring interstate that we came down on. The coast road would take us through Daytona Beach - the home of fast cars, and should give us some views of the ocean between here and home.

Saturday, 25 June 2011

Day Eighteen - First full week of proton completed

It has been an odd day. It started off ok with us getting up at 9am and going though the normal routine but it seemed to be quite hard work for some reason. By the time we were in the recovery room waiting for Millie's turn I was having a hard time holding back tears. Millie had been feeling hungry all morning and I felt bad that I couldn't help. She was grumpy because she hadn't eaten. And the prospect of doing this for another 5 weeks was getting to me. If her time could be moved forward by an hour it would be slightly easier. But they can't. It is to do with the size of beam that she needs. When Ollie leaves in a few weeks we might be moved earlier but it depends on who else needs treatment. My mood wasn't improved by not having had breakfast myself and by Millie not settling to sleep till half 10. It is known that the daily anaesthetic has an effect on thier sleep patterns. I think it is starting to take effect. She was looking exhausted at 7pm but by the time I had got her through her bed time routine she had revived a bit and spent 2 hours sat in her bed playing with her cuddlies. She was perfectly happy but I couldn't leave the room, or go to sleep, until she had passed out herself.
She should have been exhausted after yesterday's events. We started the day at 9am doing occupational therapy for half an hour. That was immediately followed by half an hour of physical therapy. I think the therapist was called Liz and she worked Millie very hard. Lots of up and down slopes, picking things off the floor, stretching up, crounching down, walking on squashy mats ... It was endless. I was shattered just being an inactive participant. Liz is a bit of a whirlwind, I'm not sure how she gets through a day at that speed but it worked for Mille who didn't get the chance to ge bored or even think about the fact that she might not be happy with changing activity. She was working to the last minute. Liz put her on a bike and taped her feet to the pedals so they didn't slip off. She then had to cycle to the sticker station (they get stickers as rewards all the time here) and then to the exit! Mind you, it worked, she managed to move the pedals round and seemed to be getting the hang of it. We now have some tape to try it at RMH!!!
Millie fell asleep in the car within minutes of leaving therapy so we left her there for the half hour we had before going to proton. We had to park her in the shade at RMH and leave the car running to make sure she didn't overheat and we played tag getting a quick coffee. But it was better than waking her up. When we got to proton she was still sleeping so I went to let Kendra know and see how long we had. Still about 45 minutes so I let her sleep for a bit longer till she naturally stirred. After proton she woke up almost immediately by herself before we got there. Kendra put her sock on and she was fine! We went back to RMH (to find that the internet was down) and later that afternoon we went over to Nemours for Millie's general pediatric check up. We saw Nurse Linda again and then Dr Bradfield and Nurse Paula. Millie has been constipated so we have now something extra to help with that. Whilst there a thunder storm came in and the view from the 8th floor looking over the river was spectacular. It took a lot of effort to get my husband out of there!
So after all that you can probably see why she was exhausted by 7pm! We all were. Which brings me back to this morning and it being a hard day. I am really not sure what made it so hard. Maybe it was the full-on day we had yesterday, maybe it was just the end of the week, maybe it was a lack of food. Maybe it was all of those and more. Interestingly, once she was awake again after her treatment I felt fine, despite still being teary when sitting next her when she was sleeping. However, she had also given me a fright when she was having the anaesthetic. She started crying slightly when her drip line was picked up (I think she knows what is going to happen) and she then had a sudden uncontrollable shake that took our normal anaethetist by surprise. The look on his face said it all and is one I won't forget for a while. He looked surprised and concerned and said quite abruptly "Lie her down now." We were then encouraged to leave quite quickly. I spent the next hour worrying and when we went back into recovery I asked Kendra if I could speak to one of the anaethetists so they could explain what had happened. Apparently, it happens some times when the anaesthetic goes in too quickly. I asked if they could make sure went in slowly from now on because I really can't cope with her doing that again. Kendra said that she came out of it ok and Ollie's mum confirmed that there were no problems. We all look out for each other particularly after we found out that a 14 month old is having problems when she comes off the anaesthetic. Her airway is prone to collapsing (a risk of doing so many anaesthetics) and they have to keep her breathing until she wakes up properly. She has about 8 more treatments to go. It must be terrifying each day.
Anyway, once out of UFPTI we decided we needed to get away for the weekend. I have been looking at watching the launch of the last space shuttle on 8th July but that is never going to happen with Millie. All the tickets have sold out and to watch it from the road or beach you have to be there at least 6 hours before. The launch is at half 11 so we'd have to be there at some unearthly hour and then not be able to move. It is estimated that over a million people will watch the launch! So, we won't be doing that BUT I have read that the shuttle is on its launch pad from a month before the launch date. So, we have currently in a hotel room about 4 miles from Kennedy Space Center! I booked the room at 4pm this afternoon and we left after tea. It took just over 2 hours to get here. Millie stayed awake all the way and was no trouble at all. I expected her to fall asleep and then not sleep tonight. She did however have trouble getting to sleep tonight and I think that is something to do with the anaesthetic. She had very restless legs - I ended up stroking them to relax them, which worked. But she didn't settle till 11pm. The room is ok (2 double beds again) apart from teh number of flying insects I have squashed. It must be over a dozen by now and there are still a couple on the ceiling. Not sure I will get much sleep tonight.
BUT .... No Proton tomorrow! And we are going to see some real rockets! Even Millie is quite keen! And we are away from RMH for the weekend. Back on Sunday afternoon.

Thursday, 23 June 2011

Day Sixteen - I think!

I would say that the day has been the same as yesterday because it feels that proton is becoming routine but it hasn't! To start with proton was scheduled for half an hour later than yesterday because they start later on Wednesdays. I think they have a meeting in the morning. They run the 3 proton machines from about half 6 in the morning all the way through to 10 at night, and fit in about 100 people every day. It is very, very efficiently run. Today, whilst waiting for Millie to finish I was struck by how much of a buzz there is. Which is very strange in a room full of ill people waiting to be treated. I remembered my Mother's comment from a few days ago about how it can be quite depressing being in a room of ill people. It really doesn't feel like a room full of ill people. The place does not feel like a hospital at all. It is more like an office or the front of a leisure centre or something but definately not a hospital. There is a lot of light, a lot of space, comfy chairs, tea and coffee, newspapers, a very friendly receptionist who knows everyone and has lollies for the kids, various support staff talking to people ... It is an environment that patients get to relax in before treatment. Everyone is very friendly and talkative but then we all spend some time there everyday so you get to know the faces. It is all very different and I really don't see it transferring to the NHS well. Maybe a private facility but not the NHS as it is. Although I think both countries could, and should, learn a lot from each other.

Millie woke later than normal this morning but still about the same time before we had to leave. I think she knew! She was ok before we left but was not happy with being there to start with. We were a bit late leaving so she probably picked up on our nerves again. Also, with it being half an hour later she seemed to get hungry and that caused some grumpiness. However, once she was hooked up to the drip (after the normal battle to get a wiggly out) she was fine and we did our normal thing of going to the red room for a dance and some sleep on Mummy's shoulder. She is absolutely fine when she wakes up, well, as soon as she has her sock on! She was woken by Shevan crying today so she didn't sleep for long. Today she had some blueberries, some tuna mayo and 3 yogurts!! I'm not sure what she remembers about going to sleep. Part of me thinks she doesn't remember a short time before it because she is unusually happy to wake up in a different place. But she must remember some of it otherwise she wouldn't be happy to go back in to, what would be for her, a strange room. Oh well! I'll probably never know. And as long as she is happy I won't worry about it. But it would be interesting to know. We are back to the normal time tomorrow but have been allowed to come in a little bit later. Shhh! Don't tell anyone!

We hung around the place afterwards for quite a while sorting some things out. I wanted to see Amy, our nurse, to check whether we still had a hearing test at 8am in the morning. That has been cancelled and will be resheduled at a time more suitable and to fit around our therapy and proton sessions. Imagine that happening at home? We really are in the best place for now. Whilst waiting for Amy, another little girl came in. I only know her from seeing her briefly on Tuesday and from the Proton Therapy Support facebook page. She is called Mia and is 3, she finished her proton on Tuesday and was given the obligatory cake by the nurses. She was wearing a pink t-shirt that said "Got Proton" on it and she did a dance in the foyer when she left! I commented to her mum on facebook that I thought our Millie would love to dance with Mia. We all met very briefly this morning and, I think, they are flying home tomorrow. It's a shame Millie and Mia couldn't spend time dancing together. But it was good to see Mia finishing and looking so good.

Millie got her pink t-shirt today.  All the kids get given one that says "Got Proton". You can also buy them and various other things with the University of Florida on them. There was a lady in the waiting room selling clothes and bags today. She is thinking of getting some drawstring bags which would be perfect for Millie to use at nursery. We have said we would love a red one!

I also wanted to catch Katie, our social worker, and thank her for the information she had given me regarding places to take a toddler to avoid the smoke and heat. I had also asked her whether there was anywhere to skype from and she had wandered whether we could do it from the computers in the library/reading room. We don't think you can because there aren't cameras but I'm sure if you could then all the british families would be doing it! Katie said that she would talk to the tech guys to see if they can install it, although it won't be a quick job. It would be really good if they could.

We eventually managed to leave UFPTI about an hour after Millie woke up. I think it was good for her to spend some time there after her treatment. It shows her that it is a good place to be. She was quite relaxed and was playing hide and seek behind pillars with Daddy! We then went to Walmart. The first time we have gone somewhere other than RMH after proton. We must be getting brave, that and Millie is recovering from the anaesthetic really well. She was barely wobbly today and in Walmart she was walking next to me and I didn't even think about her possibly being wobbly. We picked up a few more toys for her - some playdoh accessories, something a bit like stacking cups but with more flexibility and a ball, and some bath squirters. I am forever hopeful that I will get her in the bath before we leave here! It's a small bath and it would be a good one to try getting her into bathing again. However, I suspect she now thinks she is frightened of water, despite loving washing her hands. We also picked up some blueberries, yogurt and full fat milk.

After tea (pizza for the second time this week - I think they have had a few problems with volunteers not turning up) we went for a walk down to the little 'park' area to see if we could see dolphins in the river. Apparently they like to play when it gets cooler and before the sun goes down. We didn't see any so we will have to try again. We did see, and feel, lots of little biting flies. The bites that we have been getting are not very nice. They itch for days afterwards and mine feel worse when they get hot, i.e. when I go outside. I don't normally get bitten but I have 3 or 4 bites on each arm at the moment. Millie hasn't been bitten yet - touch wood. Whilst in Walmart we also got her some new pyjamas - they are red(!) with dogs on. It made it really easy to get her changed into pyjamas tonight, shame she still fought going to sleep!

We have to be up early tomorrow as we have occupational therapy at 9am at the Aetna building. We could probably walk but the traffic will be heavy, it'll be hot and the smoke has been really heavy in the mornings these last couple of days. So we will probably drive. I hate thinking like that. We also have a pedeatric check up at 4:15pm at Nemours, which is across the road from here so we can at least walk to that! I might not even take the pram!!! I am hoping that Millie will fall asleep between therapy and proton which will give me the chance to sit down and have a much needed coffee, and probably breakfast.

5 down - 28 to go!

Wednesday, 22 June 2011

Day Fifteen - Doesn't time fly?

It's late again but this time I have been sorting stuff out. I have just emailed Katie, our social worker here, to ask if she can help us get to Kennedy Space Center! It is the last ever shuttle launch on 8th July which I would dearly love to go to but we would never make it with Millie and all the tickets have sold out. You can view it from various other places but you have to be there at least 6 hours before the launch which is just not practical with a small child. The next best thing would be to view the shuttle on its launch pad which is possible from a month before launch. But I have no idea how to go about arranging a visit, or booking a suitable hotel, etc etc etc. So I have asked Katie if she has any information that would help. However, whilst looking at the dates I realised that we would only have this weekend and next weekend. And next weekend is the July 4th bank holiday. We will see!

Millie did her proton with out too much trouble. We are sussing the small routines that make life more manageable for all of us, including Millie. If she knows what is coming she accepts it better. Today she wanted to play with puzzles so we got some from the boxes in the recovery room, including one that is similar to the dress-up bears one she has at home. She let Kendra do the obs but kicked up a fuss when Kendra wanted to give her wiggly a drink. It wasn't quite as big a fuss as normal but she still resisted! However, she settled down really quickly and when I asked her if she wanted a cuddle so we could find some music for her to go to sleep to she said "Yeah, OK."! And that was it. I picked her up, we went into the red "space rocket" room where the music was being played loudly. I held her till she coughed then laid her down, kissed her and left. We are literally in the room for about 3 minutes. It was a bit more relaxed today so I got a bit of a chance to look around. When she had her CT simulation they made a mask for her. I wasn't quite sure what I was expecting it to look like but I saw it today. I had been warned that it is set on a stand next to the board/bed that she will lie on. But I hadn't spotted it before. It is a mesh mask that had all her features in it - nose, mouth, eyes. It was also quite long behind her head, this is presumably to pin them down. Apparently you get given the mask when you leave, and you can even decorate it. I'm not sure I would want to keep it. I was talking to Jake who stays awake during treatment and it felt right for him to keep it as it has been a large part of his life. And he can take it home to show friends and family and tell them about what he has been through. I'm not sure the same is true for Millie. We'll see how I feel when we get there. We still have 29 treatments to go.

Millie woke up pretty quickly. And after I had taken the monitor lead off her toe and put her sock back on she was wanting up and smiling. She had a yogurt followed by some tuna mayo. She was talkative and giggly. She walked out of the room, saying bye bye to Kendra, within 15 minutes of waking up. We were back at RMH by twenty to two, a good hour and half earlier than yesterday. I am not quite sure where the time came from but it was a pleasant surprise. She also didn't feel the need to eat so we were back and playing and wandering what to do with our afternoon. The smoke outside was really bad today so we wanted to find somewhere to go that was away from the smoke and heat. So, somewhere air conditioned basically - a shop! We had the choice of doing some food shopping at a Publix or going and checking out a mall. I had recently worked out what malls were nearby so we chose the nearest and headed there.

The car park was huge and had very few cars in it. I would hate to be there when it was busy. The mall we chose was large, although it was split into different sections and was only single story so it didn't feel massive. But it did stretch a fair way. Although I'm sure there are bigger 'malls' in the UK these days. We don't have any near us and we don't shop for fun so we wouldn't know. Millie and I checked out the train in the middle of the mall - yes, a train - one for kids to ride on, while my husband checked out the shops, in particular any that sold sunglasses. He left his at home and is squinting in the sunshine here. We then had a look in a kids clothes shop and picked up a few nice bits for Millie to supplement her wardrobe of red stuff. Red is her favourite colour, so she keeps telling me. Shame it doesn't go with the pastel colours she inherited from her sister! We also got a couple of pretty t-shirts for her big sister. Then Millie and I went on the train, at the cost of 2 dollars, before heading back to RMH.

It was Art with a Heart again tonight. The chance for Millie to do some more painting. Tonight she painted with Daddy, giving me a bit of a break. She painted an apple tree, a dolphin and a purple people eater!!! I got the chance to talk to some of the other mums which was nice. The rest is now routine!

More proton tomorrow. This time we need to be there at half 11 which is half an hour later than today and yesterday. Might make it easier to ring home. Shame we can't skype. We did ask Amy yesterday if we would be moving earlier at any point and she checked the list and said not for a few weeks. So looks like we will have to keep to this "late morning, late night" routine. It works for now. Might be scuppered by therapy but we will have to see. One step at a time!

Tuesday, 21 June 2011

Week Two - Day three of proton.

It is getting later and later as I start to write these emails but our days are starting later and Millie is going to bed later to fit in with proton.  However, this is probably too late as I could so with some more sleep (on the dodgy bed). It will also make it difficult at the weekend because we are not able to get up early enough to go anywhere in the cooler hours. It heats up so much here that, unlike at home when it starts to cool again in the late afternoon, it just gets hotter till the sun goes down. And even then it takes all night to cool down. Everyone is hoping for cooler weather soon. The forecast is reckoning there is a chance of thunderstorms from Thursday onwards and the temperature will drop. The official recorded temp today was 99 degrees F - hot! It really is too hot to be outside, we are grateful for air conditioning in all the buildings and the car. Just getting to the car is hard work, then when you open the door you get a blast of very hot air. I send my husband out first to turn the air conditioning (and engine) on first before I get Millie in. As she sits in the back the cold air doesn't get to her so well so we do have to be careful she doesn't overheat. She has occasionally fallen asleep in the car. At home we would leave her there for 20 minutes to get some sleep. Here you have to leave the car engine running to keep the car cool enough after parking in the limited shade. So much for being green. It really is quite difficult here. But more on that at another time!

Right, week two, day 3 of proton. Millie woke up after 9am this morning. We are definately getting later. I managed to get the meds into her without any problems. She decided last night that she wants the "not nice" one (Clobazam) in a spoon rather than the syringe. That's ok, other than the fact I still have to measure it out and then have to put it into a spoon. It is only 1ml but it is really thick and our syringes keep sticking in this heat or something and I keep squirting the stuff out by accident and it can go a long way! I can understand why she prefers a spoon cos I keep squirting it into her mouth! The spoon is working, for now, so it will continue to be used. Could just do with a better/quicker way of accurately measuring out 1ml, twice a day. We have almost run out of syringes so I asked Amy (our nurse at proton) where I can get some more. She is going to order a box and it will be delivered directly to the house!

Anyway, once the meds were it, I managed a quick shower whilst Millie was distracted with rolling coins on the floor. We gently went downstairs, took it in turns to grab a quick sneaky couple of bites to eat, and then headed out to proton. Millie wasn't keen again. Possibly because we had decided to do the drive ourselves and we were a bit nervous about that and about starting a week of proton. Fortunately, when we got there the 'artist in residence' was just setting up so Millie was able to do some painting and drawing. Unfortunately, Chrys, only does a few hours a week but it might be a distraction sometimes. We had to read Winnie the Pooh books again and just as it was getting quite difficult to keep Millie happy we were told we could go round to recovery. Kendra suggested that in future we go into the recovery room when we arrive so that Millie can play with their toys and begin to feel more comfortable. I'm not sure they really want us there for the full hour but we will probably move after about half an hour in the waiting room. Hopefully the change of scene (and toys) will keep her amused and relaxed. We found Jacobs favourite toy and put it on her bed so she could play with it whilst the obs were done. She was fine with them but still put up a fight when Kendra wanted to attach the saline drip to a wiggly. The anaethetists then turned up in force (about 3 each time). I think they want to make the patient feel more at ease when in the gantry by all getting to know her and walking in with us. I asked if there was any music playing so one of the anaethetists went to check for me. We walked in, I danced, Millie fell asleep without a struggle. I've still not had the chance to look around the room though, I seem to always have my back to it!

We were called back after about an hour and 15 minutes. She had already slept for 20 minutes and she slept for another 40. When she woke she complained about the toe monitor on but once that had been taken off and I had put her sock on she was fine. Our daughter has the strangest concerns - she sleeps with her socks on because she doesn't like to have bare feet. I have no idea where this came from but it is a small issue that I'm sure she will grow out of - eventually. She had some blueberries to eat and 2 yogurts (normal coloured ones). We saw Dr Danny who asked whether Millie had had any headaches, and how she was after Friday's proton. He mentioned that hair loss would start to happen in a week or so. He also saw Shevan and pointed out that his skin was starting to peel and then signed the notes to get him some cream. We aren't sure yet when peeling will start - it sounds horrific. Losing hair is quite localised and happens where the beams pass through. It can take months before any hair will start to grow again and it may never do so.

We left and came home. I remembered that there was supposed to be a hairdresser coming in today. However, nobody had signed up before 3pm so she wasn't coming in. I had been told half 3 and it was only 10 past. My hair desperately needed some attention so the manager on duty rang her and she came out just for the two of us. However, once here a queue started forming and she had to turn people away because she had made other plans. We are going to make sure that there is a big notice up before she comes in next month. And the list is available to sign the day before. But, yes, I did have my hair cut and it is quite a bit shorter than it was. It should be much easier to manage. People have commented on how nice it looks and I told them about the hairdresser that comes to RMH and nobody knew. So we definately have to make sure that families are told. Oh, and she doesn't charge by the way! She has recommended using Moroccan Oil whilst out here, to protect the hair from the heat. It would also be good for Millie who still won't let me bath her let alone wash her hair! Millie's scalp is looking quite dry and itchy at the moment - a good wash would do it some good. But if not then I will try the Moroccan Oil, assuming she is allowed it during proton treatment.

After the haircut we had to go over to the Aetna building (the one that is within walking distance but we have to drive to) for Millie's first occupational therapy session. My husband lost the car keys under a book on the bed (!) so we were 10 minutes late. But we still got the half hour. To start with Millie got to sit on a big swing with the therapist. Not quite sure what that was about but Millie seemed to enjoy it. Maybe it was a 'bonding' thing or a relaxation thing. I think Millie just wanted to play! Eventually Millie got to do a puzzle, some bead threading and some drawing. Haven't quite worked out how this is all going to help but she was better at the beads this time round. I suspect the therapist was working out what Millie can do, which is a shame because that was what the evaluation was about and we are probably going to see a number of different therapists. Oh well, Millie enjoyed it and I'm sure it will help somehow.

Pizza for tea and tonight it was too hot to play outside afterwards. So we played inside. I had troubles getting her up stairs but she eventually passed out!

Day four tomorrow. Same time as today. Not sure we will be able to skype home again but we are thinking of trying to ring on the local cell and using the international dialling code that makes it cheaper. We will have to do it from the waiting room at proton.

Only 30 days left!

Monday, 20 June 2011

Day Thirteen - Father's Day

This will be a very quick one as it has gone half past midnight already. We have both just been putting our numerous appointments into our respective phones. Tomorrow we have proton at 11am and occupational therapy at 5:30pm. On Thursday we have a hearing test at 8am at Nemours Hospital which is just across the road from here. Then occupational therapy at 9am at the Aetna building which is at the top of the road. Then proton at 11:30am and then finally a pediatric check up at 4:15pm back at Nemours! Not sure we will have any spare time between appointments. Actually, we might be able to fit in a distracting skype between OT and proton. However, I am hoping that Millie will fall asleep for a bit after OT and we can get breakfast and a large dose of caffeine. I think we will all be shattered by the end of Thursday.

Today has been a bit of a washout. Mainly cos none of us had the energy to do much but also because of the heat. We did think about going to see the dolphins this afternoon but Millie was adamant that she doesn't like dolphins and kept doing a runner so that I never got the chance to pack anything up! It was also very warm outside. Someone said their car was saying 100 degrees F but the official reports say 96 F, which is about 36 degrees C. Even now it is 83 F which is about 28 C - higher than the average mid summer temperature at home! This evening after tea Millie wanted to go outside as normal. It was just so hot and humid you felt wet as soon as you stepped outside, and the play area doesn't get any sun at that time of the day. The adults just sat. The kids ran around as if they didn't notice but Millie went bright pink with the heat. She cooled down pretty quickly once we got her back in to the air conditioned building. She had quite a bit to drink before bed though.

This afternoon we went up the road, a 5 minute drive and something that we would be able to walk in about 15-20 minutes in normal temperatures, to see Friendship Fountain. It has been closed for renovations but was re-opened yesterday. The park it was in opened in 1965 and the fountain was the "worlds largest and tallest" at the time. It was 200 ft wide and could shoot water 120ft high through 63 nozzles at a rate of 17,000 gallons (presumably US gallons) a minute. The park area was reduced by half when a restaurant and museum were built there some time ago. The museum is MOSH which we went to last week. As far as I can work out the renovations where to improve the whole general area and park bit. It certainly looks good, and the fountain is huge. We followed the river for a bit but there was very little shade and very little breeze so we stopped wherever we found either and took it really slowly. Eventually we had to give up and head back to RMH. Millie was looking very pink and hot. We will have to go down one night because they have a coloured light show every night. Although we may wait until it is cooler.

The temperatures may drop in a few days. The forecast I was looking at had them dropping by 10 degrees by Friday. However, the risk of thunderstorms increases. Not that we would mind that at the moment. We are all looking forward to getting back to a normal british summer and the rain!

It was really nice to watch the girls interacting through skype today. It's amazing what technology can do! However, being reminded of home is causing some problems with Millie. She keeps saying she wants to go to her old house. And at bed time tonight she was practically out of the bed saying she wanted her old small bed. The poor thing is desperate to get home. It's a difficult age for her to be here - she is too young to understand why but is old enough to have a memory of home and want to be back there. However, in a few months time she won't remember this (much) and I think it is still easier than having to bring an 8 year old or a 12 year old out here and dealing with all the emotions of having cancer and being treated away from home must bring.

My Dad came up with an interesting question. What would happen to a local child of the the same age as Millie with the same symptoms but without health insurance? From talking to people and reading an article in yesterday's paper we have an idea but ... if anyone does know we would love to hear from you.

Must go. Proton tomorrow at 11am. Hopefully Millie will sleep till 9am like she did this morning.

Sunday, 19 June 2011

Day Twelve - A Weekend

Firstly some thank you's.

Thank you to everyone who has contacted me having read this blog. It is a bit weird knowing that I have an audience but I'm trying not to let that put me off. I would love to reply to all of your comments but I, unfortunately, have little time to do so at the moment. Hence the blog. But please don't let that stop you contacting us. We really do appreciate all of your comments and support.

And talking of support. We have recently heard of the efforts that our village community is putting in to raising funds for Millie. It really is beyond all our expectations. You are all amazing. THANK YOU!!! We will be back in a few weeks to thank you all in person (somehow!). I would also like to thank you for making my parents feel welcome and helping our eldest lead a normal life whilst we are here. That means so much to us.

It's Saturday. No Proton. Breakfast! Brunch provided today - muffins and a large amount of fresh fruit, strawberries, melon, water melon and pineapple. Lovely! Millie dined on strawberries and melon before going to play with Daddy again. I tidied up and then snuck upstairs for some peace and quiet. And to check my emails and see who was about for skyping. Turned out my sister and father-in-law were on! So we decided that we would spent some time skyping anyone we could! No answer from my father-in-law but that was ok because we tried Lizbeth andIt's Saturday. No Proton. Breakfast! Brunch provided today - muffins and a large amount of fresh fruit, strawberries, melon, water melon and pineapple. Lovely! Millie dined on strawberries and melon before going to play with Daddy again. I tidied up and then snuck upstairs for some peace and quiet. And to check my emails and see who was about for skyping. Turned out Lizbeth and Roddy's Dad were on, as well as you! I went back down to let Roddy know and we decided that we would spent some time skyping anyone we could! We started with Tony but there was no answer, so we tried you but there was no answer from you either but we did have a very nice chat with my sister and got to see Millie's cousin.

Millie was hungry again so we took her down and gave her some yogurt and half my blueberry muffin whilst we had coffee and a sit down. However, she was so tired that half way through my coffee she really looked like she was going to fall off her booster seat. I picked her up and gently bounced her on my shoulder round the corridors of RMH. I haven't bounced her for months. It worked a treat when she was very small. It worked a treat today - she was out within a few minutes. So I put her in the pram, finished my coffee and came and skyped home!!!

After talking to my parents for ages we went and found more food! Then we decided to go to the zoo as it was a little cloudier today than it has been for a while. And yesterday's rain seems to have washed the smoke away, for now. We get free passes as residents of RMH and it is only about a 15 minute drive away. However, it was swelteringly hot. We sought out shade and breezy spots wherever possible and really didn't manage to see very much. There is a train which goes round the zoo (it isn't huge but seems to have a nice selection of animals) and stops at the other end. So we did that, sat on a pier in the shade overlooking the river for a bit then decided to get the train back to the beginning. I was a bit concerned about Millie over heating, she was looking very flushed. She really wanted to see the giraffes so we did that. They have 9 giraffes including some young ones. They also have a raised walkway so you get a good view of them from giraffe height. Also, you can feed them (for $2 of course!). When we were there the keeper was calling them by name to try and get one to eat but it was too hot for them and they all stayed in their own shady spot. Millie was still happy but happier still when Duke eventually ambled over for a quick feed. Some people were quick of the mark and went and paid to get the chance to feed him. But Duke only stayed for 2 people before deciding to go and stand back in his shady spot. Not sure if the others got their money back. We'll have to come back when it is cooler and the giraffes are hungry! We then stopped in an air conditioned gift shop to cool Millie down before doing the monkeys. We bought Millie a little battery operated fan which kept her amused for the next hour. The sun had disappeared again when we came out of the shop so it was a little bit cooler and having seen the monkeys it was time to head back to RMH.

Millie wasn't too keen on the tea options tonight (sort of tacos with flour tortillas) but she didn't seem all that keen on food at all, except more yogurt! She was probably too hot. Once she had cooled down though she was so full of beans it was like another child. She is obviously feeling more settled here and is definately recognising the other families. She has a special smile for Jacob! It took us till gone 8pm before we managed to get her up to the room. She was just so hyper. Getting her changed took an age as she decided to play hide and seek (well, she told me where to hide whilst she counted!) and then she decided to inspect her shadow. At one point she was standing staring at her shadow on the wall and was almost shadow boxing. She was fascinated to see how it moved when she did - that's the investigating Millie we know and love and almost lost. More toddler traits, not only is she bossing us about but she is calling us by our names! How many more can we get through in these few weeks! In the end, once she was in bed she passed out within minutes instead of the normal hour long fidget that we have been getting lately. I think I must have her pattern wrong, so in future she will get an extra half hour of play after tea. Well, we will have to see how she is in the morning.

Father's day tomorrow. Ahh! Better write the card from Millie before going to bed.

Saturday, 18 June 2011

Day Eleven - Second day of proton

The second day of proton. Millie was better today, probably because my husband and I were calmer than yesterday. We now know more about what we are doing and we have had the scary chat with Dr Danny. Millie woke up at the normal time and again I slowly got her and myself dressed. Because we were scheduled a bit later today I was able to get the meds and some water into her before her 3 hour nil-by-mouth period started. I mentioned again that we would be having breakfast after we had been to the hospital and she seemed to take it in her stride. She was just as bouncy and toddler-like as normal when trying to get her dressed. It can take an age sometimes, which is fine if we are trying to waste time but can be a real pain when we want to go out. She loves to get her own nappies from the drawer in the bathroom, she loves to put her dirty one in the bathroom. However, she is very easily distracted! At the moment, the bathroom has become the "shed" after we have been reading a Thomas the Tank Engine story about a monster in the shed. The monster is actually a hedgehog (don't ask!) and she loves pretending that a hair brush is the hedgehog/monster. Toddler imagination in full flow. It is really nice to witness it, especially considering the circumstances.

We got the chance to skype home briefly before we left. It was a great distraction for the last 20 minutes. Mitch phoned during the call to say he was ready to take us and I said it was time for us to go, Millie then started saying the same thing "Time to go!". She has really started copying everything we say and seems to hear everything and understand everything. I think we may be going through every toddler phase possible at the moment - I suspect she is in catch-up. We have the "Why" phase as well. However, she is asking real questions. And clever ones. Yesterday she asked why it was getting dark! The other day I had a dozen why questions before I could get her to breakfast! She may just be getting to the level where she can understand a bit more about what is going on, which might make it easier when trying to explain to her why we are here and not at home with her sister.

By the time we got to UFPTI the red gantry was running 20 minutes behind so I was expecting to have to wait a lot longer than yesterday. However, Kendra called us in at the expected time. This time I had worked out where the toys were and grabbed the toy that Jacob had been playing with yesterday. Millie had seemed interested in it when she saw Jacob with it. It kept her distracted while her obs were taken although she still didn't like Kendra giving her wiggly a drink (attaching the saline drip) although did accept it a bit more when I said it was a straw for her wiggly! We were quickly and efficiently moved into the proton room. I carried Millie again and this time pointed out the red walls. Shevan thinks it is a space ship and gets excited everytime so I tried it out on Millie. Telling her that is what Shevan thinks and asking her if she wanted a go. I then realised there was music coming from inside the room and used that to dance to with her. We got all the way in without her realising and positioned ourselves in the appropriate corner so they can access the drip. As I danced the anaesthetic was given and she coughed and was out. It happened so quickly and smoothly that it was only her coughing that let me know she was going under. The soothing effect was noted by the anaethetists so I think I might be embarrasing myself each time now!

We went and got some food and chatted to Jacob's parents (he went in as we left Millie). And about an hour and twenty minutes later Kendra called to say we could go to recovery. Millie was sleeping soundly. Kendra had flushed the lines and put Millie's top back on already - bless her. She slept for about 20 more minutes and woke up when Jacob cried! She was slightly happier this time, especially once Kendra had taken off the heart rate monitor from her toe and I had put her sock back on. Making sure she had her top on was definately a good move. She had all the blueberries and lots to drink. Before we left she had to be checked over by Dr Danny's assistant doctor, Curtis. She fought him! Then Dr Danny swung by (he looks like he never sits down for longer than 5 minutes at a time) and gave us the all clear to leave. We were back by about half two - same time as yesterday despite the later start.

As soon as we got back to RMH I fed Millie. She had a large plateful of last nights macaroni cheese followed by a yogurt. She then wanted to go and play with Daddy so I tidied up. The wobbliness from the anaesthetic seemed to wear off quicker this time. She played all afternoon! She is getting to know Jacob and Shevan, and is even prepared to share some of the toys. She and Shevan play with the train track together. She has the red engine and Shevan has the blue engine and they both push their respective engines around the track which is set on a table at just the right height for them. They have been known to play this game for quite a while. Mind you, Millie has played it by herself for many, many minutes if not hours! That and 'shopping' in the play area right next to our room. And 'tea parties'!

It started raining just before tea. Absolutely 'down pouring' as a local said! Tea was good - large roast chicken pieces. Millie ate well again. And afterwards decided she wanted to play with Daddy again! So I had to do the cleaning again. Nice to have the change actually! It has stopped raining and was already drying out so my husband went and got the new trike to use outside. She sat on it for a bit then decided she would much rather play with the little ball. She loves chasing it about the play area. The outdoor play area is not completely level so the ball keeps going away from her. And sometimes the wind can blow it even further and quicker. It is quite funny watching her chase the ball. All good practice for her balance and coordination! When she wasn't chasing the ball she was playing with Jacob's Dad who kept throwing and rolling the ball for her. It was lovely to see her happy and interacting with other people, not just kids. She must be settling in. Good! Makes things a bit easier for us.

It's the weekend now and we haven't really worked out what we are going to do. It probably depends on the smoke and heat. I think we also need to take it a bit easy still. But also need to get out for a bit. Maybe we'll check out the market under the interstate(!) that is across the river. And maybe the beach or the zoo, or just another supermarket. Who knows! No Proton for 2 days so we can have our brunch tomorrow and on Sunday (Father's Day)!

Two down - 31 to go!

Friday, 17 June 2011

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.

Thursday, 16 June 2011

Day Nine

We were up early this morning so we could get to our Occupational Therapy Assessment appointment at 9am. It was in the same building as the physical therapy but we decided that we would drive this time! I had to wake everyone at 7am just to make sure we all got breakfast. It did not go down well and very little breakfast was actually eaten by any of us. Confirms my thoughts about letting sleeping children (and husbands) lie when it comes to proton. It turned out to be a good job we drove - the smoke was very heavy this morning. It took all of 5 minutes to get there and park and be in the lobby! We were 10 minutes early.

We met Janet today. I hate to comment on people's weight but she was an extreme pear shape. There are unfortunately, an awful lot of very overweight people here. I can see why there are concerns. Americans do it large in a number of ways! Anyway, Janet was very sweet and explained that occupational therapy is about helping people to improve or adapt their methods for doing everyday jobs. She got some toys out for Millie and assessed her without Millie even knowing it. It was an interesting session. Millie got to build a tower with bricks (she got to 6), thread some beads (she couldn't do the smaller ones and got frustrated so Janet got some larger ones and Millie didn't want to play with anything else!), cut some paper (umm, sort of), draw some lines and circles (not great), do a very simple puzzle, and fold some paper to make a "book". When Millie was copying Janet to fold the paper Janet commented that she was a bright child. Good to know it still comes through even with everything.

The result? Millie is working at a level consistent with a 2 year old, and in some cases higher. So she is about 6 months off in all respects. We will be doing 2 occupational sessions a week on top of the 2 physical. Millie is going to be tired and we are never going to have a moments peace. Janet had some interesting comments. She pointed out that up till now Millie has been relearning all the skills she had before she was ill. The next stage is going to be tougher because she has to learn them from scratch. It sounds like we have therapy at just the right time. However, Janet reckoned that by the time we leave here Millie will be up to her expected level for her age! How amazing is that? I can't wait to see the faces of the staff at Moorland who were so concerned about her regression and who know her so well.

We don't know when all of our therapy appointments are yet. Janet recommended getting them in before Millie has proton and a general aneasthetic. Which is going to make mornings a fun and hectic time for the next few weeks. For now we have one on Monday at 9am and Tuesday at 5.30pm. They are going to try and schedule them at similar times in the week so we aren't in and out all the time. Can you imagine the NHS doing that? It will also depend upon Millie's proton time.

We are in tomorrow for our first proton treatment. It is, in theory, at 11:40am. We have to be there an hour beforehand each time. So tomorrow we have to get there for 10:40am. Mitch is picking us up at 10:30am. Depending on how long she sleeps for we may only have to distract her for an hour before leaving. However, I suspect she will kick up a fuss about going in Mitch's car. If we are doing therapy as well then we may end up using our own car. We meet Dr Danny tomorrow to find out more about Millie's treatment, for example, how many, how long and more specific details about what the risks are. I suspect we may then have to sign on the dotted line.

I have already packed some food up for her to take with us. Some lil' weenies (small hot dog sausages) from tea tonight, with some mash, and I have also got her some blueberries and a couple of yogurts (not the bright pink ones though!). I have no idea what she is going to want to eat but she will probably be so hungry that she will eat anything. I spoke to Jabob's Dad today. The proton machine broke down whilst Jacob was having his treatment so he was in for 3 times longer than he should have been. I think it was better that he was in rather than waiting for an extra hour without being able to feed him. Shavan is now halfway through his treatments and was given a CT scan at the same time.  I just hope that it is all plain sailing tomorrow and for the next few days.

I have no idea whether we will be able to skype home tomorrow. I suspect it will take a while for the first proton session. That is certainly what I have heard. We'll see. One step at a time.

Day Eight (Tuesday 14th June 2011)

This will be a short one because it is late and we are up early tomorrow and cos we didn't do much today. It has got so late tonight because Millie didn't pass out till 10pm tonight and I needed to shower (can't do it in the morning cos she won't let me) plus all the other things that we do in the evening, like have a (non-alcoholic) drink together and catch up with life.

We skyped home and it sounds like our eldest is settling in to life with my parents. I feel jealous and grateful all at the same time. We were talking to Shavan's mother today. She has left her 5 year old daughter at home as well. They are nearly half way through their 28 treatments and hoping to be flying home later on the day they are done. It is Shavan's sister's birthday on the Saturday after they get home. We also found out that Shavan turned 3 last month. He had a tumour behind his right eye that has made him blind in that eye. They couldn't remove it with surgery so proton is being used with chemo to kill the whole tumour. Millie is getting used to the other british children, all of whom were still here at the weekend. The more local families go home for the weekend. When she found out that Shavan is her age and also has a sister the same age as hers she seemed happy to interact with him, in her own shy, up and under, sideways glancing way! Shavan has wigglies which he is quite happy to show and have used etc. Millie initially refused to show her wiggly bag but I did manage to get it out briefly to show Shavan. Shavan also has a feeding tube in his nose. And he is quite at home with that as well.

We had a slow morning, although as we were up late again it went by very quickly. Millie was tired again and grumpy and refusing to share anything that she now considers to be hers. So that is the playrooms and all the toys! She has a strop if she even sees anyone else in the playroom. I'm hoping she will settle soon when she feels a bit more secure and knows more of the faces and realises she can't have it all to herself. We walked her round for about 30 minutes today in the hope she would fall asleep before we skyped home but she didn't. However, after skyping she was miserable, tired and hungry. Which is a really tough combination when it takes time and 2 hands to sort some food out for her. She has taken to having just yogurt for breakfast so she is starving by the time we get to lunch but won't have a snack or anything (well unless it is a little cake with red, white and blue stars and accompanied with a red drink!).

We had more smoke this afternoon. This time from the north of us, coming from massive wildfires in southeast Georgia, probably about 50 miles away. It was so thick it was like fog, the river disappeared in the haze. We decided to risk a trip to Walmart to get Millie a little trike. The smoke stung my eyes but the heat and humidity combined with the smoke just made it very uncomfortable outside. Apparently the temp has been in the high 90's and the humidity in the high 80s. When we came out of Walmart we saw little bits floating about and wandered whether it was ash. When we got back to RMH there was more of it and I have since found out that it was ash. Hence the warnings to stay inside. I think they are expecting smoke for a few more days cos of the wind direction. We don't get to see the news as we don't have a TV in our room and don't have the chance to sit down and watch any of the communal ones. In fact, I have just checked out the BBC news website and realised that life is still going on!

Running out of energy to keep going on this! We are currently due for proton treatment at 11:40am on Thursday. The time could change again, we will be told tomorrow. Looks like they are having a complete shuffle following a number of patients reaching the end of their treatment. I have emailed Amy and let her know that we skype our eldest at 1pm and it would be good to be able to do that still and she said she would see what they could do but no gaurantees. We'll see. Even if we do start at a bad time it might move. We'll think of something. It is really beginning to sink in that this is going to be hard, particularly the no eating bit. I have been talking to other parents about it now that we are getting closer we have become part of the 'group'. Not that is was "clique-y" but we weren't doing it yet and we are still new here. A mother whose daughter is also called Milly but is 5, has recently set up a facebook support group which I have just joined. She started it for exactly the same reasons that I was thinking of doing one. I haven't met her yet, I think they moved to an apartment but I believe they are still doing proton so we will see them soon I'm sure. Just been reading her facebook page - she is a nurse, and Milly has had problems since birth and at 18 months they discovered a tumour wrapped round her optic nerves which can not be removed by surgery.  We really have been lucky - so far.

One week in

One week in! And oh boy, what a week. Something else new today and more coming this week. We won't have any rest soon. Glad we took some time out at the weekend.

We were late getting up this morning - 8:45am. To still be in bed at such a time is unknown at home. And we are getting later each day, not quite sure why. Our routine has been moved by an hour anyway because tea is not dished up till 6pm at the earliest. Millie would normally eat at 5pm at home so we are an hour later getting her to bed as well. Tends to be about 9pm when she is finally asleep, instead of 8pm. This means that she is naturally an hour later waking up and with no eldest to disturb us we all sleep for longer anyway!

By the time we had got Millie dressed, had a leisurely breakfast, had a chat with Doris, a old lady volunteer who originally comes from Scotland (came over as a child) and chose some kids sunglasses from the box of them that had been given to RMH, it was gone eleven! The next hour seemed to disappear (oh yes, my husband cleaned the room floor!) and before we were aware of it we only had 20 minutes to get ready before leaving for Millie's physical therapy appointment. The hospital is supposedly only a 10 minute walk away, so we walked. Little did we know that it was very, very hot outside and that the road we were walking along was very busy and went across the ramps to get on and off the interstate. So, in the end I think it took about 20 minutes to get there and we were baked. Millie fell asleep! We can see the building from RMH but we couldn't find the entrance and we couldn't find any "ped xing"s (pedestrian crossing) nearby. I think we will be going american and driving next time even if it will take more time to get in and out of the car. To give you an idea, it is as far to walk as it is to the school from home! But walking in that heat is just something else. Nobody else was out!

For every appointment we have had so far I have had to register Millie's details as a new patient. This involves being early and spending 15 minutes filling in the same questions that ask about why we are here, what her medical history is etc etc etc. Today was no exception. Only once those forms were completed and signed by me were we allowed to meet Debbie who evaluated Millie's physical abilities over an hour or so. Millie, who had to be woken, was a bit slow to want to do anything but she eventually got into the spirit and took part. We found a toy that amused her (chickens racing down 2 spirals) and Debbie moved it to various places in the very large and well equipped therapy room. It was put on different height tables, up ramps, down ramps, up stairs, down stairs etc etc. She did really well throughout the whole session and by the end of it was asking to find another toy! She was given the chance to use a trike that was just right for her size and she was actually able to pedal it a bit. She really enjoyed that and was not impressed when Debbie lifted her off to try her on something else.

Debbie reckons that she is doing amazingly well considering where the tumour was. She sees patients who have had a stroke in that part of the brain who shake and never fully recover. The preference for the left side seems to have almost gone, Millie was using both hands to pick the chickens up (good squatting technique!) and transferring them from hand to hand. Her feet are close together when standing which is a sign of good balance. Interestingly, they were further apart only last week at home. And her odd gait that I was a bit concerned about last week has gone. Debbie reckons she is currently at the level of a child about 6 months younger than her and will very quickly catch up and not have any lasting problems. Her operation was 8 weeks ago and she has come such a long way since. I find it pretty incredible.

She will have two half hour sessions of physical therapy a week whilst she is here. The next things to work on with her are improving her balance. To do this we need to be finding different environments for her to be walking in - for example the beach or a dimly lit room. There are 3 physical factors that determine the ability to balance - feet, vision and inner ear. We can't do anything with the inner ear but we can alter what she is walking on and how much she can see. We also need to be encouraging her to stand on her toes (a favourite past time anyway), jump (she is beginning to want to do that as well) and ride a bike (we are going to buy a suitable one whilst here and probably donate it to RMH - not sure we can ship it).

We have an appointment for occupational therapy on Wed morning (we're driving!). Occupational therapy is to do with using your hands so it will help her learn how to dress herself, how to use utensils for eating etc. With this level of help she will be up to speed and surpassing other children of her age when we get home! Coming here really is the best thing for her and not just for the proton therapy. She would not get this level of support at home. I hate to say it but it is true. I am so grateful to the NHS for paying for ALL of her treatment over here. However, it looks like we are not going to have any spare time.

I had an email from Amy, our proton nurse, this morning. Millie starts her proton on Thursday. She is currently scheduled for 12pm and we have to be there an hour before that. As yet we don't know how long it will take to treat her and for her to recover. It could take 2 hours. And it might all be running late, which we won't know until we get there. Her time might change, they are doing some rearranging as some people are finishing this week. Amy will confirm tomorrow. BUT, it currently looks like we will be in hospital each day when we would normally be skyping home. Not sure what to do about this yet. It is going to be hard work - and it is just dawning on me how hard. Now we are nearly there my mind is starting to work out how we are going to manage everything. She can't eat for 6 hours beforehand (from 6am in this case) and can only drink clear fluids upto 3 hours beforehand (9am). So, do we all wake up early and have an early breakfast at half 5, or do we hope she sleeps and try to keep her distracted for 3 hours? I do not have the answers yet.

Jacob started his therapy this morning. They all got up at half 4 to give him breakfast and then hoped he would go back to sleep. I don't think he did and he didn't fancy breakfast. His therapy went ok. He was very tired this afternoon - probably because his sleep pattern was disturbed - and went to sleep during tea. So he then didn't eat. But he was up again when I was putting Millie to bed. They let him sleep for 5 hours during the day a couple of days ago because he was tired from the chemo. But he didn't settle at night. It must be hard, but I would try to keep him in some sort of routine and I guess that answers my question (sort of). Whatever we do it has to be consistent, well as consistent as we usually are and as consistent as we can be. But I think sticking to our normal small routines and sleeping when we are supposed to is probably the way to go. So, no waking up at 5am! I think I might have to secrete some cereal bars about the place and sneak off to the loo to eat them!

The weather changed today. One of the reasons it was too hot to walk is because it was! It reached 95 degrees F (35 degrees C) today and is expected to go over 100 F (38 C) on Wednesday. And because of the heat and being near the coast (it's a half hour drive away but for america we are near the coast!) we get a lot of humidity which leads to ...... thunder storms in the afternoon. It RAINED!!!!! The temperature didn't really drop but it got wet, very wet. When it rains, it pours down. Just like one of our really heavy winter showers. There was water everywhere. The lightening was very impressive - we could see quite a bit over the river. The rumbles weren't somehow too loud despite coming over head. Not sure why but do wander whether it is to do with the space. We didn't get the load crack of thunder when it was directly overhead. Millie actually fell asleep when it was overhead! I told her it was the clouds bumping, she didn't seem at all bothered. But we had been listening to the rumbles and watching the flashes since about 4pm. They did go on for hours, stoping at about 10pm. This is the normal weather for this time of year. We will be so used to it by the time we leave.