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.
You are aware that Millie's climbing is a sign that she is taking after her father, aren't you?!? (Or perhaps not, it just occurred to me!:) )
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