Why is a star (fish) like a diamond (in the sky)?

I cried a bit. I wrote a bit. I talked a bit. I am feeling a bit better and thank you to everyone who has offered their support. It means a lot to all of us.

Millie is doing well. Her head has got really red and is giving off a lot of heat - just like bad sunburn. It is reddest around her left ear and towards the back of her head. She has also started peeling - like when you get bad sunburn. It is the small flaky type of peeling rather than lumps of skin and it sort of rubs off. She has got quite itchy with it and I am having to keep her finger nails very short. I have discovered that washing her head with a bit of natural sponge helps to remove the dead skin cells and stops the itching for a bit. I can imagine that a cool sponge over a warm itchy head might be quite relieving as well. The medicated cream helps keep the itching away, however I have also discovered that the Dream Cream does as good a job, if not better. So I am now sort of alternating the creams, and washing her head often.

We had a very late treatment time today - 11:30am. I think it is the latest we have been and we aren't the last, there are 3 boys after. This morning, despite a planned late night and no alarm clock going off at 7am, she woke up somewhere round half 7. She played and muttered and lay down and played and muttered till about 9am when I finally decided we had to get up. She seemed grumpy soon after getting up and complained that she was hungry. She knows that she can't eat until we have seen Kendra so she hurried us out of the door! I had to keep delaying her by doing 'one more thing' and getting ready slowly otherwise we would have been there an hour early. As it was we were 15-20 minutes early and she was determined to go straight round to recovery. Not even the possibility of making a butterfly for Kim with Chrys could stop her, she paused briefly but only briefly! Fortunately, they were running early so we didn't have long to wait before it was time to 'get her numbers' and 'hook her up'. She knows what needs to be done before we can go and listen to music and have the milky medicine but she doesn't yet understand that the timing is dependent on other things. So she was trying to get things moving faster at every stage. When the anaethetist came in to check that everything was ok, Millie took her blanket off and said 'Ready to go!' and almost got off my lap to walk to the gantry! I had to delay her by a few minutes because they weren't actually ready! She was just hungry! The poor thing. The last couple of days she has gone to sleep laughing at Steve the porter (very important bed pusher and more). We have also spent about 4 hours in the building each day this week because Millie likes to play afterward and we don't have the energy to drag her away. It means she looks forward to coming back so we don't mind.

We have had the chance to get to know Gina and Kendra a bit more over the last few days. They have both been working there for 2 years and they work really well as a team. They also know what they are doing and are very good at it. I have watched them manage the many different kids and I have seen them manage the many worried and frustrated parents. They have a policy of letting the child sleep for 20 minutes post treatment before calling the parents. Being a parent and waiting for that call is hard and I know I wanted to be with Millie as soon as she was out. But the policy is there for a reason. They need the space to make sure that the child has come off the anaesthetic ok and is sleeping peacefully. There have been problems that have needed intervention and that really is the worst time to have a parent around. And some of the children 'fight' when they come back, even though they are still asleep, and need some gentle restraining. Apparently Millie does sometimes and I wouldn't want to be there watching them restrain her, gently but firmly, so they can monitor her and stop her hurting herself. From experience, I have learnt that Millie recovers quicker if she gets a good sleep afterwards. If she wakes up before her 20 minutes then she is so groggy and grumpy for the rest of the day it is just horrible. In the first few weeks we would be rung after 20 minutes and would go round but I would have to be quiet because Millie would wake when she heard me. These days we don't get rung until she is stirring. She is happy enough, just, that she no longer needs me to be there the instant she wakes. And all of this has been gently managed by Kendra and Gina! A big thank you to you both for making this much easier than it could have been.

Millie is very unaware that we are nearing the end of our time here. I think it is going to be quite a shock to her when we get home. This has been a large part of her short life and she has made many 'friends' amongst the people that we see most days, both in RMH and UFPTI. She has become very forward and inquisitive, if she vaguely recognises someone then she will stay and chat. A long way from how she was when we arrived a few weeks ago. However, her stubborn streak can be a real pain! It can take a long time to get her moving from somewhere once she has decided that is where she wants to be. It has been a struggle all day. She has also developed the habit of almost parroting everything we say. She doesn't quite copy as she is very good at turning the sentence round to mean something slightly different, for instance using 'you' instead of 'I'. AND she has become damn good at asking difficult questions - the subject heading being one (of many) today. She was given a dried starfish at one of the hotels and she was looking at it this afternoon when she suddenly came out with the above question. She basically put together the information she has about stars, including the song Twinkle, Twinkle and came up with 'like a diamond'. However, she knows it is a star and that it is not the same as a diamond so she asked why they are alike. I saw her thinking it through but didn't realise where she was going with it. To be honest, I am pretty impressed with her logic. I have no idea what other children do at this age but I don't believe our eldest would have thought like that, then or now. I did, of course, tell her about sparkly diamonds and stars. So she should now have a better understanding - till the next question! Oh, and I mentioned that the star was really a starfish and normally lives in the sea. Guess what she then wanted to do - yep, put it back in the sea! So then followed a whole other conversation!

I have started tackling the questions about what we do when we get home and have the beginnings of a plan. I have sent some emails to the UK medical team and have had a speedy response. We will be going to the oncology clinic on the first Wednesday we are back so that they can check her out, review her meds and review her rehabilitation. Our oncology consultant is suggesting Millie get an MRI scan 12 weeks after the proton treatment has finished and then every 3 months after that. That one is going to be tough. We have also been told that her line can be removed as it is not needed once this treatment is finished. Yippee! Unfortunately, we have just been told that they can't fit Millie in for the surgery before we leave next week which is just a real bummer. We were really hoping that we could leave here without her line and she could get back to a relatively normal life without the difficulties associated with caring for her line. I'll just have to see how quickly they can do the op at home. I feel a bit better knowing more about what happens next.

We have 8 more days here and 4 more treatments! So close ... oh, to be in my own comfy bed at home.

Stop the world - I REALLY want to get off

This has just got too hard again. I just want to go away and forget it ever happened. I had a cry this evening. I lay down next to Millie whilst she was going to sleep and I started thinking about the next stage, the future. It feels so daunting and it is all so unfair. Why her? Why our beautiful daughter who has so much to give the world? I'm crying now just writing this. It isn't a big cry - I can't let myself go yet, it will be too painful and take too long. This cry is a small one that is helping to reduce the pressure of everything. But it still feels crap.

I was lying next to Millie thinking about coming home and the bedtime routine there and then thought about our eldest and how I would love to give her a hug and how it might still be difficult to give her the attention she deserves. We have no idea what we are coming back to. We don't know what Millie's after care is going to consist of. All I know is it is going to be hard work. And then we have the permanent worry of the tumour returning or her suffering with another side effect of the treatment. It is going to be a waiting game from one month to the next for the foreseeable future. And I am not sure I can live with it.

Dr Danny saw Millie today. Millie was a star and voluntarily sat still whilst he listened to her chest. She even asked him to play! He says she is doing really well. Her head will probably go more red over the next few days and she may suffer with some peeling but he doesn't think she will get any worse than that. Which is nice to hear. However, he did say that he would talk to us next week about Millie's aftercare plans. And that was probably the last straw today.

The beach has worn us out!

Millie really enjoyed her time on the beach this morning and continued to exhibit the explorative traits that she was starting to show last may. She kept wandering off! Without a care in the world, going to see whatever she wanted to see. And she really enjoyed jumping the waves, well, with Mummy's help of course! Daddy showed her how to kick her feet in the water when she was picked up, so now she wants to do it all the time and is a really good kicker! Got me wet! It is just such a shame we have to keep her dry from the bottom up so that her wigglies don't get wet and then risk infection. Last thing we want. I am trying to find out if we can get them removed before we leave as that would be fantastic. However, we probably won;t be able to get her wet still as we will need to keep the area dry for about 10 days. We might be able to get away with a plastic patch. It would just be great if we could take her to the beach before we leave and let her get as wet as she wants in the very warm water. It is, so I have been told, as warm in the sea as it is in the hotel pool! It is definately warm -like a warm bath. Makes a difference to the enjoyment of a beach.

Millie was so tired that she fell aslepp on my whilst we were eating lunch. She had some drink and a few bites then curled up. We were eating by the hotel pool so I carried her up to the room and we finished eating on the balcony overlooking the pool and sea. We even saw some of a wedding. All the blokes dressed up in black 3 piece suits - not a great thing to wear in this heat. But they all looked smart as they wandered down to the beach. The large smile on the groom's face said it all!

Millie finally woke up at about half 3 so we headed into St Augustine. It was very hot in town. Last week we had bought tickets to go into an attraction called Ripley's Believe It or Not! So we did that. It took about an hour and a half and had some of the weirdest things from around the world. Ripley traveled and became well known for traveling to 'exotic' places. A lot of it is now in St Augustine. It was vaguely interesting! Afterwards we headed down the road to find some food. We had been recommended a place which we did find and eat in but it didn't do anything for us. The food was passable - I had a tuna salad and I now know how barely cooked tuna really tastes! It was pretty good, just the rest of the salad let it down. After tea, we wandered along the shopping street until it got dark and the bugs started annoying us. Millie is sleeping soundly, she curled up before I had finished reading her book. I shall be following very soon - it will be early tonight. I am shattered. We are all shattered.

More beach tomorrow and then a leisurely afternoon before returning back to RMH to get ready for our last full week. Nearly there - I'm sure it will drag.

Out and About Again

It's been a long week. And we are back in St Augustine. I have found a slightly nicer hotel although we are still only in one room. But the beds feel better and bigger (so far) and we can just see the sea from the window. In fact, we even have a balcony! It is only big enough to get 2 chairs on but ... it's still a balcony! We have just splashed out on some flip flops so we are ready for the beach tomorrow morning. However, looking at the state of us all I'd be amazed if anyone woke before 9am. Roddy wants to go and 'do' stuff in St Augustine but I think we would all benefit from a gentle day of beach and not a lot else. We'll have to see how we feel in the morning.

This week has been tough. Not sure why. It was almost an anti-climax getting to this afternoon. Probably because I have been so eager to count the days left and getting to the end of this week is an important milestone. We only have 7 treatments left and only one whole week. We are all shattered by the end of the week and although we recoup over the weekend we never feel as good as we did the previous monday. The same seems to apply to Millie's head. It is now looking very red and we have been advised to use the medicated cream. It has been getting redder all week and has been at its reddest in the early evening and overnight. By the morning it has been looking a lot better but not quite as good as the day before. It's the same at weekends, it is very red tonight and I expect it to calm down a bit over the next couple of days but it will soon be this red again after treatment. Hence being so aware that we only have one more full week of treatments to go. Her head looks like it has been seriously sunburnt (I guess it is all radiation) but it doesn't seem to hurt her, it just gets a bit itchy. And hopefully she won't start to peel or blister. Even if she does it should heal fairly quickly after treatment has stopped. I'm just hoping the hair starts to grow back soon as well. My little(!) brother, encouraged by his young lady, sent Millie a summer buff - it is nice and soft and she has worn it for longer than any of her other hats so I think I can say that it went down well. It is also UV protective and wicks moisture away, something I think Millie needs.

Despite it being a long week, Millie has done really well again. She has gone through her proton treatments without a mutter. We have even solved the problem with the drip line. Well, Kim solved it for us. She suggested putting one of the warmed blankets on Millie's tummy so that she had the sensation of heat rather than a cold plastic tube. It also has the advantage of keeping the drip line still and hiding it. She isn't that easily fooled though. As soon as the anaesthetist comes in and says they are ready for her she throws the blanket off, checks her line is not tangled round her legs and then gets ready for me to pick her up. She is also aware of where the line is when I am carrying her to the gantry and knows that they use it to put in her milky medicine. I think she is also aware, in some form, that she goes to sleep on Mummy's shoulder when she gets the milky medicine. She has started resting her head on my shoulder ready to sleep and yesterday I tried to lie her down before she had actually gone to sleep, she had just completely relaxed. Everyone comments on how well she is doing and how different she is now.

And that difference isn't just with the proton treatment itself. She is full of confidence and beans. Yesterday she woke up before I got round to the recovery room. When I got there she was having a cuddle with Kendra and appeared to be very happy. Kendra said she was enjoying it and was happy to cuddle Millie anytime. My heartstrings tugged - part of me glad that she is finding other people to trust (something that is a very normal and vital part of growing up) but another part upset because she is beginning to move away from needing me all the time - she is MY baby. I guess I also need to relearn to trust other people to look after her. We'll get through this first though. One step at a time. She also loves playing with Kim and giving her hugs. Just today, I have had about 3 proton staff offer to take her home with them because she is currently being so 'cute'. Little do they know! And yesterday, our once shy toddler almost threw herself at Miss Paula during her fourth oncology pediatric check up! Paula didn't expect it but was very happy to receive a hug from Millie, before commenting on how she had changed in the last few weeks. And she has changed - she is more herself now than she has been for a year or more. Which is just such a long time in a toddlers life. But what is pleasing to see is that we are seeing more and more of her personality developing despite everything, and it seems to be very like the one she was beginning to exhibit a year ago. She is going to need to go back to childcare come September - she will need it and I will need it!

We are now the senior family at proton. Jacob had his last day yesterday and they fly out tomorrow. Good luck guys. When we get back from St Augustine we will be the most senior family in the house as well. That is an odd thought. It means that everyone that was here when we arrived has now gone, which is very weird and sad in some ways. But it also means that it is our turn next. It also means that we have some responsibilty to keep an eye on the newer families and make sure the tips and knowledge is handed on. Although that might be a bit difficult as 2 of the families do not speak english very well. However, that does not stop Millie who has made friends with the only other young girl going through proton - Anabel. We know nothing about her other than the fact that she has the biggest brown eyes and the most gorgeous long thick brown hair and is very friendly. I dressed Millie in her pink Got Proton t-shirt, with pink leggings, this morning and when we got down to the kitchen we discovered that Anabel was wearing the exact same thing! They looked so good together and Millie was thrilled! Anabel is probably about a year older but is only a little bit taller than Millie. Mind you, we are finding that Millie is very tall out here and I don't know whether she is tall for the UK as well or whether everyone is just a bit shorter out here. She certainly seems to tower over other children that are around her age.

Talking of being our turn to leave soon, we have booked our flights - still a tad risky for 7 treatments left. We are leaving here on the Friday 5th Aug at half 4pm and getting into Heathrow at 10am on Saturday. We still have to do the 4-5 hour taxi ride home but we should be home by tea time on Saturday. We could have left on the Thursday but we would have had to be at the airport for about 5am and would have arrived in the UK at about 10 in the evening. I decided that those times would mess us up more than the jetlag would so we are leaving on Friday instead. I am not sure how we are going to cope with our eldest because we will be so tired and have so much to do to sort ourselves out. And so much catching up to do. We'll work on that. Let's get through the next week and a bit first.

Maybe not as bad as all that

With proton being earlier we would like to take advantage of the afternoons and go somewhere. However, the temperatures are heading upwards again. We had about 33C again today and it is supposed to get hotter in the next few days. I checked out the forecast for here and the UK. The low here is still higher than the high in London. It looks positively chilly in our home town. What happened to the summer?

I have just contacted Alison, our radiotherapy consultant, to see if it would be okay to have Millie's wigglies removed whilst here. As far as we know there is no need to keep them in at home and we would have to do a special trip, probably Bristol, just to have them removed. Dr Danny says he can arrange it for us if we get the OK from the UK team. I have also asked her what the next steps are for us once we get home. It is beginning to dawn on us that we will be heading home in a couple of weeks. And although proton will be over the next phase will begin.

So, whilst thinking about heading home, I have also emailed our travel coordinator to see if we can get some firm dates and times for travelling back. That will make it more real. However, we still have to be cautious as Millie may still miss a treatment due to unforeseen circumstances. I am trying to decide what I am looking forward to most and, apart from certain people, it is sleeping in my own comfortable and large bed! Not looking forward to sorting out food again though!

Millie did ok with her treatment again. It has become routine which is good. Kendra did her numbers and attached her to the drip today and she has a different way of doing things. But Millie was still happy for it all to happen, including holding a finger out for the sats monitor, holding her arm still for the blood pressure and getting a wiggly out before being asked. Still not happy with the straw though, she says it is cold but we can't work out whether it is 'cold' when it rests on her tummy or cold when it goes in. We saw Dr Danny today and he says she is doing well. I asked about the paler patches on her head and he thinks they are areas where the skin has flaked a bit and it is new skin showing through. He expects the patches to grow in size over the next few days but not to blister badly. He is happy for me to continue whichever cream works on her. So, we are back to the Dream Cream. So, I now need to say a BIG thank you to Helen who has very kindly arranged for some more cream to be delivered to me here. Two pots arrived yesterday which meant that I could donate the last quarter of a pot to Hailey who is also losing her hair. Hailey has given Millie a couple of bandana type things so it was a nice swap.

Ahhh! Millie has just rolled over (finally) so I can now go and cream the other side of her head!
Right ... done!

This afternoon Millie had PT and OT. She worked really hard in both sessions. Both therapists are quite tough on her and concentrated on making her use her right hand by holding her left one and repeatedly telling her to use her right. I'm not entirely convinced by the way they do things, it seems a bit hard, but Millie coped (just) and it is only for a short time. I shall give them a chance, we have both of them till we leave now. I have just had to rearrange Millie's times because with proton now earlier we can't do PT and OT in the morning. But at least now we have all our the sessions we are supposed to have and they are timetabled to be one after the other. Which saves us from coming and going all the time. I asked our occupational therapist if Millie would regain full use of her right hand and she said yes, almost definately. The brain is still being impacted by the proton treatment so it is not able to recover yet. However, once the treatment has stopped it will 'repair' itself and we should see improvements in Millie's physical development for another year. I also asked about her balance and the therapist reckoned it is possible that she will regain her balance fully but that she might not. It sounds like the next year is very important for making sure that she gets all of the physical and occupational therapy that is recommended. It is the continuation of a long journey but who knows where we will be in a year's time.

Nothing much happened today. Other than offering to help make things better and easier for those that follow. A gentleman from Leeds is in Jacksonville for a few days gathering information to help improve the communication and transfer of patients out here. Others here have been subjected to some conflicting advice so he has been tasked with working out how to improve it. We had a brief chat and he has taken my email address! Anything I can do to make sure that others get to do this ... The government has recently found some extra funds to enable more people to have proton treatment. The number I heard was 400, not sure it is all going to be children. This place would not be able to take them all. They already have 100 a year and you can see that it was hard work last week. But this is widely considered to be the best place, particularly for children, so we will have to see. I would quite like to be properly involved in the project as it involves collecting information! We shall see!

I think that is all. TEN more to go. I can start the proper count down!!!

Another Monday

Today was the beginning of 6th week here. Only two more Mondays to go and the one after that we will, hopefully, be home (and shattered). Today was Millie's 22nd proton treatment - she has 11 more to go. Today was a mixed bag of good and bad.

The good stuff.
We started earlier than we have done previously which meant we had more time in the afternoon. We just took it easy this afternoon and stayed in RMH whilst Millie played and got to know the other proton children a bit better. They are more her age than some have been over the last few weeks. Unfortunately, most of them are Hispanic so there is a little bit of a language barrier but it doesn't seem to stop the children playing with each other. It is hard to talk to the parents who don't seem to know much english and I have even less knowledge of their language. But we all smile and nod heads at each other. One of the Hispanic children is a little girl called Anabel. She is probably a year older than Millie and she seems quite sweet and as willing to play with another child as they are at that age. Millie has become more accepting of the fact that the play areas are not just for her to play in and I have discovered that if I ask her to choose what the other child can play with she doesn't get so worked up. It does of course depend on how the other child reacts but I think Millie has discovered the joys of having others around so she is a but more forgiving than a couple of weeks ago. She was quite happy to push Emmanuel round in the little car despite the fact that he jumped in whilst she was pushing it empty.

Millie is getting better and better at climbing. Which is nice to see but is also very alarming at times. This place is not very child friendly with regards to 'safe' areas. All the surfaces are hard so that they are easy to clean, understandable in a building like this but it means that we have to watch her all the time. It is made worse by her reduced balancing capabilities and the fact that she looks so vulnerable without any hair. The other day she managed to climb onto a chair that is about chest height on her. It happened so quickly and easily that she was up before either of us twigged what she was doing. It is amazing to see how the natural instincts are still kicking in. Climbing is a new skill that she just can't get enough of! She climbs anything and everything in sight. And because she is gaining in physical confidence, today, she went down the slide by herself. Not just once but many times. She really enjoyed being outside tonight and I think her balance is getting better. She had a lot of practice yesterday what with sand, waves and boats!

The not so good stuff.
The change in routine knocked us all out of sync somehow. We didn't know whether we were coming or going and matters got worse when we got to the hospital cafeteria to discover that they had stopped serving breakfast and hadn't started serving lunch. We ended up having a doughnut for breakfast as that is what is available on Monday mornings at proton. We have always missed it previously, which is probably a good thing because the doughnuts are out on low tables in places that Millie can see before she has her anaesthetic. She now understands that she can't eat beforehand but a couple of weeks ago that would have been very difficult. We have also changed gantry - she is now being treated in the blue one which is down the corridor. The red one is directly opposite the recovery room and we have got used to simply walking across the corridor. The blue one is right next door to the red one, just turn right out of recovery and go about 20 yards down the corridor. Millie wasn't sure about the different place, however it looks exactly the same inside and we had our favorite anaesthetist who likes to sing along with the music and make Millie laugh. She was ok though.

Her head is now looking quite red and today it has small paler patches within the red. The skin gets burnt by the radiation, like sunburn but sunburn that gets burnt every day for a prolonged period of time. She has been doing ok so far with some redness in the afternoon but by morning it is more pink. The paler patches look like the beginning of blisters which would be heart breaking. I have applied the medicated cream tonight instead of the Dream Cream in the hope that it will help the skin to heal and prevent the blistering, if that is what it is. We are due to see Dr Danny tomorrow so I will ask him about it. Jacob's ear is suffering with the treatment. Some skin came off during cleaning and it bleeds so it now looks black with dried blood. I don't think I can bear for Millie's whole head to do that. It might not but ... we have to be prepared for it.

Ollie and his family left to day. It was good to see them go now that he has finished his treatment but we will miss them. Millie will miss Ollie. Although I told her this morning before we left for proton and she said goodbye to Ollie and gave him a hug, it didn't sink in. As soon as we got home this afternoon she wanted to play with Ollie. I had to explain again that he had finished his treatment and that he had gone home. She sort of took it onboard but was distracted again. We'll see if she remembers tomorrow. I am sort of expecting her to get upset at some point when she works it out. Jacob goes on Saturday.

The weird stuff.
My husband got his hair cut! It has all gone. No more ponytail. He has had long hair for more than 20 years. He will be donating his hair to Locks for Love who make hairpieces for children with hair loss. The hair dresser who restyled him is called Michelle and she comes in to RMH once a month to cut our hair for free.
My husband looks a different man, younger. It will be very strange in the morning. If you know him and want to see the pictures send me a message.

A Bit Better Today

Today was a bit better. we got up and packed whilst Millie slept this morning. We then managed to get her up and drove to the cafe next door to have breakfast. Back to the room, changed into beach gear, threw everything in the car and checkout .... then we went to the beach!!!!

The beach is massive. It stretches a long the coast for as far as the eye can see - in both directions. Some people drive onto the beach which was a bit weird for us. But the important thing is that Millie had a really fun time digging holes, making sandcastles, jumping waves and collecting shells. We managed to wrap her wigglies up in a purple plastic surgical glove and tape the glove across her chest. We spent about an hour and a half there. It was hard work getting everyone changed out of beach gear, apart from the reluctant toddler causing problems we all had to share the gents loos next to the hotel pool. We had no access to our room because we had checked out.

We tried to go back to the cafe next door for lunch but it and the car park were full. So we drove and drove and drove looking for somewhere that looked decent to eat in. Hard work from a moving car. Millie ha a cry about leaving the house and then fell asleep. She must have had a good hour of sleep whilst we looked around for food. Eventually we drove in to the centre of St Augustine and ended up having hot dogs! We then pottered about the shopping streets for a bit before going on a cruise down the intracoastal waterway. The cruise was just over an hour and a nice way to relax. Millie kept active throughout the cruise! There weren't very many people so it didn't bother anyone, especially as they were all outside and we stayed inside. The windows were open, we could see very well and it was in the shade. Why be outside? We saw some dolphins!!!! They didn't come very close but we saw some - finally!

After the boat ride we went back to the place we had eaten in last night. Unfortunately, the food wasn't quite as good as last night so I asked if there was a different chef. No. But the waiter apologized and took my comments back to whoever is in charge and came back with a piece of key lime pie in a box to take away! I've just eaten it - it was very nice! We came back to RMH after eating and arrived here at about 9pm. I managed to get Millie bathed (another glove) to remove the sand and snuggled up in bed within the hour. Gotta be a record for us. She is currently wearing her Po hat because she was cold when she came out of the bath. She does get cold quite easily so I have started keeping a warmer hat to hand. She hasn't moved since she fell asleep 2 hours ago! I have managed to cream one side of her head but I can't get to the other side until she rolls over! She has lost even more hair. The patch on the top of her head is slower creeping down the right hand side as well. The poor thing has very little hair now. But she still has her smile and she charms anyone she meets.

We start our new schedule tomorrow. We have to be up an hour earlier than we are used to. This week is going to be tough. But only 2 more full weeks to go plus 2 days. Only 2 more weekends to get through. And a list, as long as my arm, of things we still want to buy!

Terror Toddler in Florida

Well, we made it away from RMH but I wouldn't say we are having a "good time". We have spent the day at each others throats, and that includes Millie. It has to be the combination of many things but it is probably a miracle that we are all still in the same room and no one got injured. I finally had to get everyone up this morning at 9am otherwise we wouldn't have done anything and we have to get our day back to more normal times for next week. Millie woke up grumpy, my husband woke up grumpy (something to do with the air conditioning unit keeping him awake all night) and within 20 minutes I was fed up with them both and decidedly grumpy myself. We had very little idea where we were going for breakfast despite being given a recommendation (no food outlet onsite). We finally found the place which is about 4 miles away and was only average in food and serving etc. We won't be going back. Millie got really hungry and started having a loud strop, which I understand, but was just extra hard to handle today. Once she had food she calmed down, a bit.

After breakfast we decided to go on the train/trolley tour around the town. There are 2 tour companies - one had a red 'train' whilst the other does a green 'trolley'.You basically sit on it and go round the town and get off and on as many times as you want at any of over 20 stops. We went on the red train because that what Millie decided and, today, there was no reasoning with her. We would probably have done the green one, if we'd had the choice, as it seems to have more buses and therefore you only have to wait a few minutes for the next train. We managed a few stops, including the old jail which had a very good tour guide, before we needed to eat again and then get on the "last" train round to get us back to our car. It is an hour and half tour if you stay on. We had managed the first 20 - 30 minutes so had to sit on the uncomfortable bench seats for an hour. Millie actually fell asleep next to me so I hauled her onto me and she slept for about 45 mins.

After we eventually got back to the car and purchased a few more souvenirs we walked along the road towards the 'fort' and along the front. There are lots of things to see and do in St Augustine. The town claims to be the oldest european settlement in northern america, about 500 years old. It was settled by the spanish and attacked by pirates because the spanish were taking boat loads of treasure back home. It was also burned to the ground by Sir Francis Drake in 1586! So there is a lot of spanish influence (e.g. fake houses standing where the originals were but are no longer because they fell into disrepair and were knocked down), lots of pirates and 'old' american history. We found a nice seafood place to eat that had shrimp on the kids menu. Millie had shrimp and fries and ate all her 6 shrimp followed by some bread. I had crab cakes this time which were ok. The best bit was the drinks - 'frozen' non alcoholic cocktails. I had a pineapple and coconut one - yummy!

I think we all felt a bit better after eating. Today had been very stressful. We didn't know where we were going, where to eat etc etc. Being in a strange place is hard in normal circumstances. But on top of everything Millie has decided that she needs to exert her own preferences. I have lost count of the number of times I have had to tell her not to do something. I have been developing my own 'discipline' method that has been working with her. If she doesn't listen to me and stop doing something then I tell her I will count to 5 and then she has to do whatever or I will do something. For example, she regularly gets distracted climbing the stairs at RMH and I have to encourage her to keep moving. I give her the choice of walking up herself or me picking her up. Because she is so determined to do everything herself my normal threat is to do something for her. Up till now it has worked 95% of the time (it is a matter of coming up with the right consequences!) but today I must have used it over 20 times and had to follow through 2 or 3 times. She is obviously pushing her limits as all normal toddlers do. I know it is a development phase and I know it won't last long and I know she has to do it. And a part of me is pleased that she is doing it. However, a large part of me is wishing she wouldn't so it for another 4 weeks. She has also discovered the art of screaming and crying loudly in an attempt to get her way. It hasn't worked yet and gets ignored which is funny when she works out it isn't working but still a badly times annoyance. She has also started to be more physical, so hitting, kicking, pushing away, throwing things etc. Again - normal but please, not now Millie.

The next couple of weeks are going to be hard. Having a terror toddler on our hands is going to make it very hard. We are nearing the end, although we still have 2 weeks and 2 days to go. I have seen others reach this stage and start getting really stressed and fed up. I think it is because we are so close and yet a very long way still to go. Also, we are beginning to think about what happens next and we currently have no answers, and may not for a long time. That is definately beginning to take its toll. Not quite sure how we will survive yet. Will work on it though.

In the meantime we ARE going to the beach tomorrow very early, breakfast will be next door as soon a s they open at 7.30am. Yeah! Right! We also have to check out of the room. Then I want to do a boat cruise, we have to do the pirate museum and we have tickets to another museum  that we were going to use today but didn't. Then there are the different shops that we would like to window shop in, preferably without Millie but that won't happen. Ho hum!

Nearly there. One step at a time.

Another Weekend Away

We didn't get the chance to skype or talk to our eldest today. We try every day but it is just really difficult with Millie's treatment time. However, we are changing times next week and we will be earlier. I still haven't worked out whether we will be able to skype but it will give us more time in the afternoon. There have been a lot of children finishing their treatment over the last couple of weeks, including Ollie and Brycen today, and not many starting. Next week there are only six children that will need an anaesthetic instead of the 14 who did two weeks ago. We will also be moving to the blue gantry which will be a shame as Millie has got really used to the whole thing. I am worried that she will take a dislike to the change and things will be hard again. She was so good today. She even said, as we were walking to Kendra's room, "Milk medicine go in wiggly and in my tummy". I talked to her the other day about the fact that the medicines that go into the wigglies then go into her which is why she can feel it. I have only just realised that since talking to her about it she has been ok with the anaesthetic. Wow! I hadn't twigged that until just now. She's a bright cookie - taking that onboard and accepting it. All the proton staff are impressed at how well she is doing now and how different it was 3 weeks ago. We are impressed and slightly unbelieving. All we have to do now is crack the drip line phobia. She is absolutely fine with everything except for the drip. She has a real bad wobble when it is attached and we really don't know why. We think that it pulls on her line and that it feels uncomfortable. But I'm not totally convinced. When it is attached the line has to be moved so that she can't see it. She covers it with her top and tries to hide it. She is slightly better if we give her the job of holding it, especially when we go into the gantry. I think we will have to talk to Kim about it.

Back to our times for next week! On Monday we have to be there are 10:15 which is an hour earlier. But Sarah finishes then so on Tuesday we move an hour earlier again. On Wednesday we are back to about 10am because they have a meeting first thing and treatment starts after that. On Thursday we are back to 9am ish but it is Jacob's last day so we then move to 8:15am!!! Our whole day is going to have to shift forward by about 3 hours in the next few days. The whole process normally takes about 4 hours from leaving RMH to getting back. On Friday we will have to get up between half 6 and 7 - a time we have not seen for a few weeks. But we should be done by midday so we will have a good 3 hours extra in the afternoon. Not sure what we are going to do with ourselves. As far as anyone has been able to say we will be keeping that time for the rest of our treatment, although it does depend on new arrivals starting treatment and what position they need to be slotted in. We are going to have to make loads of changes to our routine. We won't be able to go over to Shands hospital and have our daily salad for lunch, although I think we might have to check out their breakfasts! We are going to have to move all of Millie's therapy sessions which are all early in the day. They will have to be done in the afternoon now which means that Millie may still be wobbly from the anaesthetic but at least she won't be hungry! We are goign to have to go to bed earlier - all of us. That routine might be hard work as currently Millie gets to play outside with the other kids after tea. She won't be able to play for as long which would be hard if Ollie was still here but as he isn't it might be easier. Humm - change!

We haven't spent much time at RMH this week. On wednesday night we decided to go out for tea, spurred on by discovering that RMH was having problems with its water supply because a nearby workman had dug through the mains water pipe. The local hospitals were also affected so not a good move. We were told not to use the water for drinking, cooking or brushing teeth as it could be contaminated. It was also recommended not to wash the ill kids with it, although it was fine for the adults. Bottled water has been provided but it's not easy brushing your teeth with a cup of water. Tests were done on the water and this afternoon the all clear was given. We were quite glad not to be around much. As I said, on wednesday we went out and ended up at The Cheesecake Factory which has been highly recommended by many people. It does do 10's of different cheesecakes but it also does some very good main courses and other normal stuff. However, there is nothing normal about the menu - it is huge. They must have over 100 different dishes available. The menu is about 20 pages long! It took ages to choose. I had shrimp and fries and got some pasta for Millie working on the assumption that she would have a couple of my shrimp. The shrimp were massive - I have never seen shrimps that big. They came in a breaded batter of some sort and were so huge I assumed that there were 2 shrimp in each parcel but no ... just a single huge one. And there were about a dozen of them. Millie ate 4 as well as loads of my fries!! But no pasta! We went with Ollie and his mum and sister. It made a difference having company. We will miss them when they go.

Last night was Family Fun Night at the Proton Institute. Chrys, the artist in residence, has been asked to do something and she came up with a fantastic project. She put down 3 very very large sheets of paper next to each other and got the kids to done aprons (with "got proton? on) and plastic shoe covers. They then wheeled huge rollers around the paper. Each roller had been covered with foam shapes and dunked in paint. There were also poles with round flat ends that foam pieces could be stuck to and turned into giant stampers. Millie had a fantastic time (with Daddy!) and lots of photos were taken of her. We have said that we are happy for them to use the photos in any way they need to so that they can get more funding for pediatric support. Photos attached.

Tonight, we are in a Hotel Lodge (whatever that means) in St Augustine which is only an hour down the road but it gets us out of RMH for a couple of days. A change is as good as a break. We are right next to the beach!!! We can't see it from our cheap 2 bed small suite with a built in 'kitchen' but we have been to see it and it is definately there. We have to walk past all the other rooms and the pool and then down a wooden walkway that goes over the dunes and then down some steps and wahey - the beach. And a beach for nesting turtles at this time of the year. We went down to have a look after we had got everything out of the car and before gettign Millie in to bed. It was dark but we could just about see by the light of the few dim lights around. Because it is a turtle nesting beach they are not allowed to put up lots of bright lights at this time of year as it confuses the mother and baby turtles who, if I remember correctly from my turtle conservation days, use the reflection of the moon on the water to get to the sea after hatching. Tomorrow we hope to get up early, find breakfast from somewhere and be down on the beach before it warms up for a bit and then go and check out the rest of St Augustine. We still have to jump the biggest hurdle of protecting Millie's wigglies from sand. We have come armed with plastic bags, surgical gloves, tape and plastic patches. We are not sure which combination will work best for Millie but we will have to make sure she has lots of fun so that we can do it again.

It'll be nice to have a weekend doing something else. Then when we get back to RMH we will only have 12 treatments left - that is 2 weeks and 2 days. But first, the weekend.


PS - For those interested, I have managed to get a donate button working for Millie's Future Fund, see Donations page on the right. It is clunky and uses paypal. It does take cards but I have to pay for the privilege. It also takes you away from the site. I will try to improve things over the next few days when I have some time. In the meantime - Thank you.


PPS - Thanks you to Millie's nursery who held a fund raising event on Thursday. We are very grateful. Millie needs to come back and play!!! I'm sure she will love the place now that she is her old self again. And you won't know what hit you! But I will get some much needed peace. Thank you.

Donations to Millie

Thank you to everyone that is fundraising for us or wishes to donate directly towards Millie's treatment. We didn't plan for this blog to become a way to raise funds, it is simply a way to keep everyone informed. We didn't even consider it until people asked how they could help. I have spent this evening writing a 'Donations' page that you will see listed on the left hand side. Don't all rush there yet - none of the links are working as I have run out of time tonight to figure it all out. I will hopefully work it out over the next couple of days. All help and suggestions welcome though. I shall keep you informed.

Thank you.

New worries, old worries

It has been a few days since my last blog so I apologise. I only have a couple of hours in the evening to do the sorty out stuff and the last few evenings have been busy so I have been too tired to blog. The last few days have been a mix of good and bad. It's funny how new worries replace old worries that are starting to fade. There are always worries though.

Saturday was a fairly good day. We ate breakfast at a Waffle House, their blueberry buttermilk waffles with butter and maple syrup beat anything at RMH. Unfortunately, we were sat in the spot where the cold air from the air conditioning was coming down the wall and we all got cold. Millie was shivering. I think she gets cold without her hair although she was wearing a hat. In the afternoon we went to the Hands-on Children's museum. Which is less of a museum and more of a collection of themed areas for kids to do pretend play. There was a shop, a post office, a train area, a puppet area and a dressing up area with a stage to name a few. We also found a room for the three and unders which had loads of toys. Millie enjoyed that room. It was fun for her and a break for us but it was quite small with loads of people and pretty hot and stuffy. We will go again and have recommended it to others but we will ring beforehand to see if it is quiet. It is quite a good idea for an indoor play area but not sure how it would work in the UK. The effort required to keep it all clean and tidy most be enormous. However we weren't sure it was kept as clean as it would have to be in the UK to abide by h&s rules. The building looked a bit run down.

It was hot dogs again for tea so we decided to be brave and venture out for another meal. We chose the River City Brewing Company restaurant which is on the river near MOSH and Friendship Fountain. It was nice to be out and 'normal'. We sat at a table with a nice view of the river and boats, Millie was quite taken by the view and spent a lot of time looking out of the window. Which was good as it meant we could eat. Millie had some of my shrimps again - I will have to remember to get her some to herself next time! Millie took her hat off after a few minutes of being there. I found myself checking to see who was looking and what their reaction was. I spent most of the meal with half an eye on everyone else checking out our daughter. I felt self conscious about it, I am just glad she isn't aware of the stares. After the meal we went to watch the sound and light show at the fountain. It is a huge fountain and the view over the city, through the lit up water, was beautiful. We have nicknamed one of the many bridges here the blue bridge because it is. The blue bridge was behind the fountain and it had been lit up in blue lights. It was pretty cool. Just a shame that everyone stared at Millie. It was our first time out in real public since she has lost most of her hair - it was hard but I'm sure it will get easier as we get used to it, the hair loss and the stares.

Sunday was not a good day. It had it's moments, like eating fresh corn on the cob for lunch. They cost 20c each and I cooked them myself! But that was probably the only moment of the whole day. Millie started a different medication in the morning and appeared to react badly. One of the anti-epileptic medicines that she is on is not available out here so the doctor here has given her something that is similar. Within 30 minutes of having her first dose she was wobbly, drowsy, spaced out and moody. Oh boy, was she moody - all day. We had the biggest tantrums we have ever had. It was hard enough trying to manage her behaviour for the day, it was harder thinking that it might be the medicine and she was supposed to have 3 doses in the day. It was scary. That night I emailed our radiotherapy consultant and asked if she could get one of the neuro consultants to check her medication. This particular drug was only supposed to be used in the short term whilst they sorted out the other main anti-epileptic drug. However, we were sent out here so quickly that it was decided not to change anything whilst we were here. I got a response within 24 hours suggesting that the dose could be reduced over time and Millie could come off the drug completely. That would be good.

I also emailed our local oncology pediatric nurse and explained the situation. The response from them was also very quick. By 11am they had all had a chat and decided to reduce the dose drastically, hoping that her reaction was due to an overdose. Her behaviour returned on the Monday morning within half on hour of having her first dose. And that was after being happy to play with her cuddlies in bed for an hour whilst we dozed. Fortunately, the smalled dose seems to have helped however she is still less balanced than she was a few days ago and that is causing us some concern still. I have contacted our nurse again and am hoping we can see them this week to discuss everything.

Just thought of another good moment from Sunday. We went over to Riverside Park, just across the river from here, to feed the ducks in the only pond we have found. The ducks weren't interested but the very green murky water suddenly came alive with turtles/terrapins and tiny fish. All wanting to eat the bread that Millie was throwing in! That was a fun experience that we will do again when we have an hour to spare and just need to get out.

Back to the proton routine on Monday. Number 17 of 33, 16 to go - over half way now - yeah!!! I have found myself saying how many are left rather than how many we have done. And, best of all despite everything with her medicines, Millie went through the whole process without a single complaint other than when the drip line was attached. Not sure why she doesn't like it but she doesn't. We will have to work on that. She was even calm when they put in the anaesthetic, she looked a little worried but did not cry. It was amazing. She was even better today, she got her wiggly out before Gina was even ready for it! Bless Gina she took advantage and hooked her up. She'll moan at everything tomorrow you watch!

We had a full day today - physical therapy in the morning, then proton, then occupational therapy in the afternoon. She was shattered especially as both therapists worked her hard. Despite not being able to balance as well as normal she is better at doing more and more things like sitting in a squat, climbing everything, climbing stairs without putting both feet on each step. However she is also taking more risks and getting herself into scrapes, not really something you want with a child with no hair. Somehow she looks more vulnerable. Yesterday she was swiffering our bathroom floor and enjoying doing it. Unfortunately, she walked backwards towards the bath which is quite low and fell backwards into it. I couldn't decide whether to laugh or cry! She was ok - just very shocked. Not sure she learnt though! Later on in the day she was having a tantrum in the room and managed to bang her head on the table. It came up as a bump which was very visible. I did wander whether they did proton with lumps. It had gone down by this morning although she now has a nice bruise - and they do do proton with lumps! This morning at physical therapy she decided she wanted to get a ball from the ball pool. She reached over the wall, which is about chest height for her, and almost in slow motion slid over the wall and went head first into the ball pool. The poor thing was not happy, suddenly finding yourself under lots of balls and unable to stand must be scary. But she recovered quickly. It will be interesting to see if she still likes ball pools. And I still don't know whether to laugh or cry. In normal circumstances I would be laughing, so I think I will allow myself a few smiles and consider her risk taking a positive development.

A quiet day tomorrow. Just proton and maybe some shoe shopping. Only 14 more to go. We should be done in 3 weeks and getting ready to fly home. Our thoughts are already heading in that direction - how on earth are we going to get everything home?!?

Half way!!!

We were up slightly earlier than normal this morning as we were due into proton about 45 minutes early. Millie was up at 8am so we didn't really need any alarm clock! However, she then spent the next hour or so sat in her bed playing tea parties and other imaginary games with her cuddlies. She was happy in her own world and needed very little interaction. This independent play is a new thing for us, Suzi never did it and still needs a lot of interaction but that is who she is, and we love her for it. Millie has always been pretty independent and happy to play by herself for a short time before finding something else to occupy her. The two are like chalk and cheese still. And it is good to see considering the past few months. Someone mentioned to me that they have to do this stage of independent play before they can play with others (and share). I can see that it is one of many toddler stages but not sure it is a necessity to learning how to share. However, it is nice to know that we are going through normal toddler stages! All at the same time!

She might have been happy in bed but as soon as she was up and aware of what the day held she was grumpy as anything. She started by saying she wanted to stay at 'ronald donalds house' and have breakfast and play. Then when I explained that we had to see Kendra again so her wigglies could have her medicine she decided we had to leave for Kendra's house immediately. I was still in my pyjamas and she was only half dressed! We got there eventually, with a grizzly Millie who never really settled enough to deal with the daily procedure. I put it down to being the end of the week. It is affecting us all. It has also been a grey and damp day so maybe we are missing our daily dose of sunshine.

The last space shuttle was launched today at 11:26am. Guess where we were?!? Yep, taking Millie into the gantry, as I had predicted. Well, it wasn't quite that bad, we got out 2 minutes before the launch and then couldn't figure out where to stand to see anything. The cloud cover was like at home - complete, and rain clouds were coming in from the south, where the shuttle was being launched. After a few minutes of waiting in hope, we went down to one of the computers and, with help from Bryson's mum, tried to find some information. We had missed the launch but at least it happened. I still need to look for some footage of the launch as I haven't seen it yet. Ollie's family came back this evening. They had managed to find a quiet spot 12 miles from the launch pad where they could see everything and were able to get back to the house they were staying in within 40 minutes. Ollie and his sister were pretty excited, understandably. I am very jealous!

Millie woke up ok - she slept for over an hour this time. She kept kicking her probe off and going back to sleep so one of the recovery nurses would try and put it back on again only for it to be kicked off a few minutes later! Obviously getting used to the place. As soon as she was awake, and whilst still fighting to get the blanket off her head she said "I want to eat now!". She seems very aware of what is going on. And, as always, ate well. As she was getting ready to go I slathered some more of my cream over her head. She wasn't all that impressed to be honest but the cream seems to be helping so it is going on regularly. I just hope I have enough we are getting through it at some rate. The tub I am using was an unexpected bonus gift from Lush. I went in before coming out here to pick up some necessities and was talking to the shop assistant about what I use most and how and why I was there now. I also asked where the nearest store to Jacksonville was. When I got home and put the shopping away I discovered a large pot of Dream Cream in the bag. So, Thank You Lush - it has another use.

I slathered more cream on when Millie had gone to sleep. I ummed and erred about it for a while, trying to decide whether to use the recommended chemical one or the nice gentle one. I plumped for the nice one having read everything on the small tube of the other one. It mentioned washing your hands and not eating it and contacting the Poison Control Centre if you do. It also reckons it is a healing cream for dry, cracked or irritated skin. My nice one can deal with all that and I don't have to wash my hands afterwards (except to remove the hairs that have come out whilst applying it). The hair loss is still going on. It isn't anywhere near as dramatic as it was a few days ago but there are still a brushful of hairs coming out in the morning and more during the day. Washing her hair this evening (yes, she let me - just, but with much distraction from Daddy) produced more loose hairs. I just have to hope that most of it will grow back sooner rather than later. Hailey as starting to loose her hair as well. They are the only girls going through this at the moment so her mum and I are going to put our heads together to see if we can find any good headwear. It will also be good for Millie to see someone else lose their hair. She likes Hailey, even though Hailey is 12. And Hailey thinks Millie is cute so they have a mutual like for each other. Hailey has very limited sight and she can't always see Millie but I'm sure she can hear her laughter! Hailey is very sweet and has offered Millie some of her hairbands. They finish treatment at about the same time.

After proton we went off on a very odd route to St John's Town Centre which is an outside mall. It is a very large mall with 100's of shops. It is so large you have to drive from one part to another but 'inside' it looks like an old traditional american high street (apart from the numerous cars). It is a bit weird to be honest. We reluctantly went to find the ToysRUs store. We haven't been able tot find any suitable threading beads for Millie so this was our next option. Fortunately, we found some suitable ones. We also bought a few other bits and pieces for her. We did some threading this evening and she was doing really well. She was putting the thread in her right hand (the weaker one) and putting it through the chunky beads. It was interesting to see her use her right hand without thinking about it. She is doing it more and more which is a very good sign. We may have to come up with some more things that will get her using both hands.

Well, as the subject heading says we are half way through the treatment (or as close as you can get). We have now done 16 of 33. We have another 3 weeks and 2 days to go, so hopefully in 4 weeks time we will be home. The weeks are slowly being ticked off. I was hoping to get away this weekend but haven't been able to sort something out. We will definately have to do something fun though. We are all feeling a bit fed up with being here and with each other. We just don't get the opportunity to spend any decent time alone and the routine of proton is quite wearing.
Breakfast tomorrow - I think I will suggest we find a Waffle House!

More hats needed and a wonderful eldest

Our eldest is reaching the end of her first school year and my parents have just received the first school report. My Dad took photos of each page and has emailed them to me. She has done very very well, reaching competant in everything and getting very good scores on the various achievements that they are marked on. She comes out above average for everything except for an average in shape, space and measures. In 5 of the 12 areas she is considered to be working at the next level up. I knew she was good and we are very proud of her. Her teacher has commented on how well she is coping with Millie's illness, which is just so good to hear.

Thank you Mrs Webster for teaching our daughter so well this last year. It's a shame we won't see you before the term finishes. But we will see you next year. And thank you to the school for giving her the opportunity to grow and learn as she has.

Millie was grizzly this morning and it was slightly difficult getting through the process of going to proton but she was fine really. Just having an off day. She slept for an hour afterwards and was looking really quite relaxed and comfortable in the bed. She must be getting used to it all - finally. She ate loads again! We go over to the cafe at the Shands hospital next to Proton and get ourselves a nice "pick it yourself" salad. There is always a large selection of fruit and veg to put in, then you get to choose a topping of seeds, nuts or croutons and then you get to choose your 'protein' which is freshly cooked and flavoured chicken, shrimp, salmon etc, and then you get to choose from a large selection of salad dressing. It is always fresh and nice food. The guys serving recognise us these days and know that we are here because of Millie. We would normally try and pick something up for Millie from the house or get her a ready prepared expensive parfait (salad or yogurt or fruit in a plastic cup) from the cafe. Today, I decided to get her a mini salad of sweetcorn, snow peas, cheese and salmon. It cost $1.43 (we get a good discount for being at UFPTI, especially when we go to the same till lady!) and Millie loved it. Even though she'd had 2 yogurts before and 1 after! We will be doing that one again.

We got back to RMH in time for Millie to have her photo taken as part of a publicity photo shoot and then had to dash over to Nemours for the pediatric check-up. She is doing well, including putting on some weight and probably growing in height, although she kept hunching up when Miss Linda was trying to measure her. We saw Annie today who is a nurse over at Proton and she checked everything out, including ears, eyes and mouth. Some people get mouth blisters. We had a chat about Millie's hair loss and her dry scalp. She lost a bit more today after proton - I think the mask probably pulls it out. We were given some cream yesterday to use on her head, I used it last night and it is so thick and greasy it made her hair very icky. I asked whether it would be ok if I used the same cream that I use on her legs as that works better than anything that has been prescribed. It's ok but I do have to be careful to make sure that her scalp does not dry out and become itchy. I also need to regularly wash her scalp which is not an easy task when she doesn't like water anywhere near her face. Unfortunately, her scalp will probably soon become red and start to suffer radiation burns. If the scalp is dry then it can be worse. I shall try my cream for a couple of days and see what happens. My cream is from Lush and called Dream Cream - although I think it is approaching miracle cream. I use it on my cracked knees (too much time playing with the kids) and I used it during both pregnancies and have no stretch marks. It also did wanders on Millie's eczema a few months ago, in fact, she doesn't have that on her back anymore, ummm... I wish I had bought out the rest of my Lush stuff, in particular the shampoo that is good for dry, flaky scalps. Our nearest store is at Orlando airport which is a good 2 hours away.

She has lost a bit more hair. Her fringe is still there so I keep combing that one across her forehead so she doesn't look so lopsided. And she currently has a lock of hair coming out from the left side of her head, just above her scar, that hasn't fallen out yet. It is looking like it might stay there. It looks a little odd but gives her head some personality somehow. We have thought about putting beads in it! She said her head was itchy at teatime so I put some of my cream on. I think she was a bit shocked at the size of area that I covered. But it stopped itching. I think it is a bit sensitive, probably more from not being protected as normal rather than any radiation side effect. When she was trying to go to sleep she didn't seem comfortable with me stroking her head and face like I normally do. For some reason I pulled the soft fleece blanket up so that it was covering her head and stroked through that. She was asleep within 2 minutes. The nurses in the recovery room cover the kids heads with warm blankets when they come back from treatment. I always wandered why, now I think I know. I waited for Millie to sleep for 20 minutes then put some more cream on. She is still wrapped up with the blanket over her head. We need to get her some more hats. She keeps taking her red sunhat off and I think it is because it is scratchy on her sensitive head. We are going to look for a variety of head gear for her this weekend. We might also get her a bed hat to keep her head warm.

We are in to proton early tomorrow because Ollie, who is before us, has been taken down to Kennedy Space Centre to see the launch of the last space shuttle. I am so jealous but hopefully I will see something from here, if it doesn't get delayed. I have a nasty feeling that we will be busy taking Millie into the gantry when the shuttle is launched. I'm just hoping that they will also be interested and they will all be happy to wait for a few minutes. I'll always remember where I was when the last shuttle was launched.

A Busy Day at Proton

Today was little different at proton.  It's a wednesday which means loads of people come in for the proton patient lunch. Which means there is no parking for us when we arrive. We have started taking advantage of Mitch the driver and he drives us on Wednesday so that we don't have to worry about parking. Millie wasn't too happy when she realised we were going with Mitch but it was only an initial reaction and she didn't actually bother about it once we got to his van and I strapped her in. Instead of going direct to proton we stopped via the Jacksonville Arena (American) Football stadium to pick up Shevan who was spending some more time with the Sharks on his last day of proton. They have taken him to his heart and done a lot for him.

We were a bit late getting there but not overly. I was going to suggest to Millie that we play for a bit before going round but she wasn't interested. She toddled straight off through the doors to recovery intent on showing Gina and Kendra her new shoes! We had to wait for her bed which doesn't bother Millie as she would rather play and isn't even aware that she needs a bed! When it was her turn Gina worked with her again and she did pretty well. I let Gina do all the work with Millie as I feel it is important for Millie to trust her and for me not to keep stepping in, even when she is very reluctant to let anyone near her wigglies, like today. Gina is damn good and got there with a lot of persuasion. Millie kicked off when her 'straw' was connected but settled when distracted by Shevan's mum taking photos of her. Going into the proton room was mostly ok, they didn't have the music on so we had to ask. Millie had a slightly bigger cry than yesterday when the anaesthetic went in and her face looked quite concerned. The poor thing, I just want to hold her tight but as soon as she is out I have to put her on the table so they can wire her up and do whatever they need to do. There are some things I don't want to know - which is very unlike me but I can just about cope with what I know now. I'll add small bits to my knowledge when I am capable of taking it onboard.

We went up to the proton patient lunch again. It is on every Wednesday. We were a bit late so missed the beginning and they were already hearing from follow-up patients. The food was really good - chicken kebabs with rice. I didn't get quite so emotional this time but hearing some of the stories (all positive) did bring tears to my eyes. There was one guy who had just started his treatment for prostate treatment and he became very emotional when he was telling us about his brother who'd had prostate cancer 17 years ago and had to have the operation and is now going through chemo because it has returned and is very aggressive this time round. I think everyone in the room wanted to give him a hug. For the guys out there - get your PSA checked regularly. We heard quite a few jokes about the balloon today and B.O.B (Brotherhood of the Balloon), some of it was a bit too much for my sensitive ears but it is great that they all feel they can share their experiences. And we are part of that support group (no balloons though!). A number of people asked how Millie was doing. The idea of having such a group is fantastic and the support provided by UFPTI Patient Services is invaluable. There are regular organised trips, there is a folder containing loads of information about things to do, everyone is so friendly and will do anything to help. No wander patients feel positive during their experience and are happy to tell anyone that will listen. The UK is hoping to set up a couple of proton centres (or were planning to last year, things might change with current funding issues) but I really hope they visit UFPTI and learn a lot from it. It makes a big difference to our lives here and to everyone else that has had to relocate for 6-8 weeks. I think I'll have to see what I can do about it when we get back - that might be my next mission.

After the lunch we went back to the foyer and checked out the Proton clothing, another good idea, and got talking to various other patients. As I said, everyone is so friendly. In the middle of a conversation about where to find the best seafood restaurants(!) I was rung by Recovery to say I could go round. This normally means that Millie is starting to wake up but when I got there she had gone back to sleep again. I had noticed that the board in the foyer was saying that the red gantry was running late but I didn't take much notice. It turned out that Millie had been in there for a while because there had been problems with the proton machine. It sounds a bit scary but we know that there are thousands of check made and if any one of them shows the slightest problem the beam is stopped completely. Millie is in no danger she is just anaesthetised for longer. She only got about 15 minutes sleep so hadn't had the chance to sleep the effects off. She was definately more groggy for a while, and more wobbly and more tired for the rest of the day. However, she did not go to sleep till 11pm which I think is a side effect of the aneasthetic. She just couldn't settle. She was absolutely fine and I left her playing with her cuddlies whilst I got on with other stuff in the room. I even hid in the bathroom for 20 minutes and that didn't help, she just lost her little rabbit and kept saying so till I came out and found it for her!

It was Shevan's last day today. He was up and awake before Millie so we joined the party a little late. Some of the Sharks turned up. Shevan got a cake and a present from UFPTI. Every child does. They fly home tomorrow. They will be missed in the house - it will be quieter! I'm not sure how much Millie will realise. I'm hoping she won't pick up on the fact he has gone home because she will start wanting to go home as well. And that is hard to deal with. We have enough to manage with her hair loss which has increased. No longer at the rate it was falling out but there have been a few clumps. She is now mostly bald on the top and left hand side of her head. I have no idea what to do to make it look less, well odd, scary, vulnerable etc. I think we will have to investigate what head gear is available and get her loads. She was having a slight wobble about it today. This afternoon she was standing next to a full length mirror and spotted her head. She turned round to me and asked what was on her head. We had a little chat about it being the skin under her hair and I mentioned the other children that she knows who have lost their hair. She took that all ok. Then this evening whilst in bed she started to have a wobble about her hair falling out and I found myself reassuring her and saying that it would grow back. Which was not really the best thing to say when there is no gaurantee that it will. She then asked a few times when her hair would grow back. I deflected by pointing out that (thankfully) Ella, her baby doll with wigglies, had no hair and that Duckie (also with a wiggly) was wearing a headscarf because he also had no hair. I said we could get her loads of hats and scarfs in all sorts of colours and she said "Red!". Bless her. We are fortunately in a place with people who do not blink an eye at such things. A I know that when we get home she will be in a place where people are not going to be worried about it. So she will hopefully be ok with it. I do believe that her attitude is determined by ours so although we are quite upset by it we do not let her know that we think it is a bad thing. It is just one of those things that happen because of the medicine that is stopping her from being wobbly.

More proton tomorrow, followed by a pediatric check up (can't believe it is 2 weeks since the last one) and more OT.

More hair loss and new shoes

My poor baby has lost a lot of hair. And Dr Danny says that it will probably not regrow on the top of her head, the rest he advices waiting a good 18 months before giving up hope. As my husband put it, it looks like someone has cut a motorway through the forest of her hair. She has a good 5cm wide strip that starts at the back of her head, fairly central and at the bottom of her skull, it goes up to the top of her head where it gently curves towards the left and comes back down in front of her ear. It comes further forward than we had imagined. We also thought that the area would include the area of her scar, which is already thinned,  but it seems to snake around that leaving her with very little hair on the left side of her head. I have attached a couple of photos to give you an idea- she was sleeping when I took them! At her eye level and in front or from her right she looks ok. I think the hair is still falling out slightly so we really don't know how it is going to end up. The hairdresser is coming in to RMH on the 18th so I am going to see if she has any ideas. Millie will be like this for a long time - it isn't really like other patients that lose it through chemo, theirs grows back fairly quickly. And it is going to take me a while to get used to it. She doesn't seem bothered yet, she does seem to know that her hair is falling out and has been heard saying so. We haven't talked to her about it but she must have picked up on the conversations we have been having over her head. It probably feels strange as well. She has dry skin on her scalp, she always has had and what can be seen now is nothing to do with proton. Amy has given us some thick cream to use twice a day but not for 4 hours before her treatment because it can have an effect on the passage of the beams. The last thing we want.

Despite the hair loss she is doing amazingly well. She had OT this morning at 9am which involved some interesting new things. Previously the sessions have been pretty mundane and not overly challenging. They have all involved threading, bricks, jigsaws and colouring. Today, Grace our therapist had Millie doing her threading on the swing, then she did colouring on a soft mat, then colouring on the wall whilst standing on the soft mat and finally Millie did a jigsaw whilst lying on a large red ball! She did really well at all of it and was ready to leave when we were told that there was a PT cancellation slot available now with Paul. She was worked hard in PT as well, up and down ramps and stairs, kicking balls, lots of bending. At the very end she was so tired she had a meltdown and refused to do any more. Fair enough. She is getting stronger and I noticed yesterday that she was able to bend down and pick things up from between her feet without wobbling. She is also more stable when 'running', she fell over last night for the first time in a few days. And even that was more of a bad trip when over tired. She loves running around outside after tea, just a shame it is still so hot and the biting insects attack so much.

I had hoped, and assumed, that she would fall asleep either on the way back to RMH after therapy or on the way to proton. I had made myself a coffee and put it in an insulated cup to drink when she was asleep - she didn't so the coffee went undrunk! She was wide awake when we got to proton so we played in the waiting area playroom for a while before going round to see Kendra and Gina to see if they had a red train. The posted gantry times said that the red gantry was running 20 minutes late but when we got round to recovery they still hadn't taken Ollie in. Gina was putting his line back in (he has a port which is under the skin and means the line can be removed for the weekends) and she and Ollie's mum suggested that Millie watch. Millie did and then got upset when they took Ollie off so we distracted her by trying to find a red train (fortunately they had 2!). We were in there for a good half hour and Millie was really calm and happy to play - so unlike her. When it came to her turn she let Gina 'take her numbers' which involves ear temperature, blood pressure and 'magic finger' heart rate and sats. She was a star and let Gina do everything without a single complaint. Gina gets a lot of credit because she got right down to Millie's level and took it at her pace. When it came time to get a wiggly out for its drink Millie started being a bit reluctant but I let Gina work with her and Millie 'helped' to push the water. She then got Millie to hold her wiggly whilst she got the syringes ready for taking blood samples, or "Let's see if your wiggly has any raspberry juice". Millie didn't flinch. She had a wobble when Gina fitted the 'straw' or drip line but we were able to distract her from that fairly easily. When it came time to going into the gantry Millie again had a little wobble but was easily distracted and although aware that the anaesthetic was going in only gave a quiet whimper before passing out very gently on my shoulder. The whole thing was so much more relaxed than it has been previously. It is such a relief. And she woke up really well after 45 minutes sleeping post anaesthetic. She ate loads and was off the bed within minutes!

We saw Dr Danny and answered the various questions about her health. She hasn't lost her appetite, her energy levels are normal, she hasn't had any pain or discomfort, she doesn't have any red patches on her head. She is doing well. I guess it is good when the doctor whisks away after a very brief consultation. We did manage to get him to contact one of the nurses who knows about protecting wigglies from water and sand. He is very supportive of taking Millie to the beach as suggested by the physiotherapists. The nurse has ordered some AquaGuards (or something) that are plastic patches that you stick over the wiggly to keep them sealed in a clean and dry environment. We can pick them up from Nemours pharmacy tomorrow. Beach soon then! Assuming Millie lets us anywhere near her with them but I'm sure she will once we explain that she needs them for the beach.

After a long time at proton we decided to go and get Millie some shoes. When she was in the bath the other night I noticed that her big toes were looking red at the tips. I had been wandering for a few days but that confirmed that she had grown!!!! We only bought those shoes 6 weeks ago. I asked one of the staff if they could recommend somewhere to get real proper fitted shoes. So we went this afternoon. We spent an hour in the shop - the shop assistant was really good. I explained that I wanted shoes that gave her good support whilst she is learning how to walk and run. We have come away with 2 pairs of good shoes. Oh yes, she has grown, at least one size. Her shoes say size 6, her new shoes are a size 8. I think there is a slight difference in the sizing but she has definately grown - typical child! We left with her wearing one of the pairs and she seemed almost more stable already. Here's hoping they will help her to learn how to run!

There is another little boy here from the UK - 15 month old Jan who has a very rare cancer in his abdomen. His mum has come over on her own with him and they were preparing for the CT simulation when we were waiting for Millie to go in. Jan was possibly exposed to chicken pox just before getting here and he is not allowed in RMH until he is no longer at risk of giving it to other kids, particularly those on chemo. They are staying in a hotel and are effectively isolated. We had a long chat with his mum who was, understandably, having a hard time. I can't imagine getting through the last few weeks without the support from my husband, even now it needs 2 of us to do the caring and the support. I would be worn out and on the verge of a nervous breakdown if I was by myself.

Millie had her CT simulation 4 weeks ago today. We arrived here 4 weeks ago yesterday. Hopefully we will be finishing treatment in 4 weeks exactly. We are half way through our stay. It feels like a lifetime. One step at a time.

July 4th and Hair Loss

It was a holiday today (something to do with beating the brits up!) so we got the chance to do some catching up with family through skype. At one point the girls were drawing 'together' and I briefly felt like we were all in the same room having a chat as normal. Just could have done with a cup of tea! I love the way the girls interact with each other. Technology is amazing - it would be so much harder without skype. I think Millie is missing her big sister. She has become so attached to Ollie that she gets very upset when she can't find him to play with or if he has to go away when they are playing. She is almost inconsolable at times, it is heart breaking. It is almost as if Ollie has become a substitute sibling. I'm not quite sure what we are going to do when they leave in 2 weeks, but we will only have 2 weeks left ourselves then. Ollie's real sister arrives on Wednesday and they are going down to Kennedy Space Centre to see the launch so won't be around this weekend. Maybe Millie will find someone else.

Another family has arrived from the UK. A little 4 year old boy called Harry. He was diagnosed about 2 weeks before Millie with a large aggressive tumour behind his nose. He is having chemo and that has shrunk the tumour considerably. Surgery is not an option because of where it is. Proton is the most suitable treatment.

I am having a bit of a wobble about Millie's treatment this weekend. After washing her hair on Saturday night it has started to fall out and it isn't just a few hairs. It is coming out in clumps. It did start slowly, wherever she put her head she left some hair, a bit like a dog moulting in spring. This morning her pillow had a good covering of hair and the hair on her head had some odd tangles in it. I gently got a brush to those tangles and clumps of hair came away. I haven't said anything to her yet because I don't quite know how to start or what to say but I am going to have to tell her. At some point today she put her hand to her head and it came away with a clump of hair attached. The hair on her head is definately thinning. It should only fall out where the beams are actually entering the skull but she is having 3 beams and I get the impression that they are large. I spent most of the day just gently running my hands through her hair and pulling the loose stuff out. It is going everywhere. She will have a bald patch on the top of her head that is about 5cm in diameter - quite a large spot for a small head. I also suspect that she will have a bald spot around her scar on the left hand side and another one low down on the back of her head towards the left.  Whether these will be distinct patches or will join up I don't know. There is still hair to fall out but I am hoping that I have got most of it today. I couldn't resist having another gentle finger comb just now as she is sleeping. I got some more.

I am finding this quite hard and not sure why. Possibly because this is the first real public sign that she is ill. People will look, people will stare and wander. Also, there is no guarantee that it will grow back - ever. The radiation is damaging the hair follicles, they may not recover. If they do it could be months before we know. Some of her hair could grow back so she would have a thin covering but it is unlikely that she will ever have a full head of (her own) hair. I know it is a small price to pay for treatment that has the best chance of giving her life but it still hurts. It's her beautiful (unwashed) hair. It will be hard to forget this July 4th. The date will always have another meaning.

We didn't do much today - no proton as it is a holiday. Millie didn't go to sleep until gone midnight last night and we didn't wake up till about half 9. Lunch was good - tater dogs! A unique hot dog made using rolls made from potato and, in theory, 'dogs' with real pork (yeah - right!). They cut the end of the roll then make a hole in it length ways, squeeze in whatever condiment you want and then add the steamed sausage. They were pretty good although I still can't get over the fact that they squeeze 'cheese' out of a bottle like mayo or ketchup. The guys came in specially to give us all lunch on July 4th. They don't have any premises as they just sell the tater dogs wherever they can get a pitch. We thought today was a prime day to be out but apparently the cost of pitches is a lot and many people take their own food with them. You should see the size of the cool boxes out here - they make our suitcases look small! They put food in for the day, sometimes already plated, put in loads of ice from the fridge size ice maker and then wheel it out to the car. I haven't worked out how they get it in the car but I assume it needs at least 2 people. My husband would love one - I just have to keep pointing out the impracticalities of getting it home and storing it. He'd have to get rid of all the computers and accessories - ummmm ...! We are very grateful to everyone who brings us food and helps here.

The afternoon was spent playing, starting with a Thomas the Tank Engine game on the PC. We 'played' for about an hour. My legs went numb from her sitting on them and I had a large handful of hair. The day just gently went by. Millie was tired having missed out on a full nights sleep but I refused to give her the opportunity to nap. Our days are out of kilter enough, if she had slept today she would not have gone to bed till very late and would be tired again tomorrow. Instead she was in bed and asleep by 9:40pm. How do I know the time so precisely? Because the Jacksonville fireworks started at 9:45pm! The fireworks were pretty cool. We had a good view from the top floor living room. There are only 2 floors, we would say we are on the second floor, here it is called the third floor. It has taken quite a while to get used to not having a ground floor. There were about 20 people in the room and quite a few young children. The display went on for about 20 minutes and was over the river, although we couldn't see the river so it looked like they were over the buildings. But they were pretty high so we saw most of it. Millie would probably have enjoyed it but what she doesn't know she won't miss.

Day 13 of proton tomorrow. We start with occupational therapy at 9am so we will have a tired and hungry child to entertain for 2-3 hours before her treatment. Only four treatments this week and the launch on friday so we are taking Ollie's slot and will be an hour early. We will have to think about going somewhere for the weekend again.

Breakfast, boys and bathtime

We had breakfast in the house this morning for the first time in what feels like a very long time. It's about 2 weeks because we weren't here last weekend. That feels like a lifetime ago. This morning I had completely forgotten where to get the breakfast stuff from and was flummoxed by a new toaster! Millie has her rice crispies and some of my hard-gained toast. Millie realised at some point that Ollie was in the playroom and that was it, she wanted to go and play with Ollie. She really is quite taken with him, and he seems happy to play with her. They hug each other and really do play with each other - it is so sweet! It is interesting that Ollie is the same age as our eldest and I think Millie is used to relating to someone of that age. Ollie does have a sister but she is a year older than him so I am very impressed with how he interacts with Millie and comes down to her level. Millie gets quite excited when he is around and then pretty upset when he goes! She, Ollie, Shevan and Jacob are the only children here for any length of time and they have all got used to each other. And the parents all have a lot in common of course. When Millie wanted to go and play with Ollie this morning we were still eating breakfast so we told Millie she had to wait. Ollie's mum offered to look after Millie for us and Millie actually went with her to the play room. It's a huge step for her and was really nice for us. We only got 5 minutes before my elastic pulled me towards her but it's a start - for all of us.

Ollie and his mum went to the beach for the day. We will have to check it out before we leave but I really need to work out the best way to protect Millie from the sun and how to protect the wigglies from the sand and sea. Millie will be in the sand and enjoying herself so I need to figure something out. We wandered over to the other side of the river (the Riverside area) to check out the Jacksonville Farmers Market. Not a farmer in sight! It is all live music and art and craft stalls. A little different to our definition but a nice way to spend a couple of hours. The market takes place under the interstate bridge and the locals keep telling us it is a nice shady place to be. Well, yes it is shady but it is also damn noisy. Mind you, it is noisy over here full stop. Even in this room with 2 sleeping bodies there is the noise of the air conditioning, the fridge in the bathroom, the trains outside, the occasional helicopter and motorbikes going over the interstate bridge nearby etc etc. I don't think I have heard silence since we arrived. With the live band this morning as well as the crowds and road noise we had to shout to hear each other when stood next to each other. Millie did alright, she walked round with me most of the time. She impressed me for lunch. There was a big range of food stalls selling lots of different stuff. I went for coconut shrimp with a marmalade dip and fries. Millie had 2 of my shrimp! I offered them to her and she took it, tried it and then munched it. And they aren't small things here. In the UK they would be considered large shrimp, here they are medium sized and fresh from the nearby coast! It is the beginning of the shrimp season so I will be making the most of that for the next few weeks.

We walked back along the river to where we had parked the car, a pleasant enough amble despite the heat. I was looking in the newspaper today and checked the weather forecast for here and London. I noticed that our low here is the same as the high there! The temperatures have dropped a bit here and they are only 32C during the day at the moment! After the market we went and checked out another shopping area on that side of the river. It is called The Landing and is right on the river edge. It was ok. No special shops or anything but pleasant enough to pass another couple of hours.

It was tea time when we got back to RMH. Millie didn't eat anything, might have been the heat might have been the choc chip cookies she'd had an hour earlier! I bet you can guess what she wanted to do instead - yep, play with Ollie! Outside this time! She did quite a bit of running around chasing Ollie and playing with the balls. I was watching her and have been thinking over the last couple of days that she is looking more stable than she was 2 weeks ago. She seems to be falling over less and is getting up more speed when 'running'. She still has quite an unsteady gait with arms out to steady her when going above walking speed and is perfecting the art of careering round corners to our horror. But she was having a great time with the boys.

I eventually managed to get her upstairs and was just sorting the stuff out to do bedtime when she came in the bathroom and announced she wanted a bath. I have been mentioning it regularly to her in the hope she would get the hit. However I wasn't expecting it tonight. She also announced that I had to put her wigglies in another bag (a plastic one to keep them dry) and that I had to hold her when she got in and sat down. I didn't think it was going to happen because it took a little while to find a suitable bag and the tape to tack it to her shoulder and to get her undressed etc. But it did and she enjoyed it. I only gave her a quick body wash and then made her hair wet with the flannel. Whilst Daddy was entertaining her with her new bath toys I brushed her hair. There were a couple of tangles that had to be cut out! There was also a fair amount of hair that came away from all over the scalp - this is probably because I don't get to brush it often. I also managed to have a very gently go at her flaky scalp which is looking very flaky. I kept expecting the hair around her scar to fall out in clumps but it didn't. This is apparently what happens, normally over night and then you find the hair on the pillow. It hasn't happened yet for Millie but now that I have removed the tangles and old loose hair I'm expecting it all to fall out!

We may have to encourage more baths. She was more relaxed when I put her into bed and her legs didn't twitch. But that could also come from chasing the boys and balls!

Hopefully we'll make it to the zoo tomorrow. If not we will go back over to Riverside and find the large park with swings and ducks!