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.