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!!!