Little Feet - Long Walk

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

Friday 8 July 2011

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.

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