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.

Thursday 7 July 2011

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.

2 comments:

  1. Three wry smiles in response to this post.

    The first at the idea of M showing off her new shoes. The second at your possibly getting a new mission (saw that one coming even before you wrote it!) and the 'red' response. I am sure she will look very cute indeed in red headgear.

    Hugs to you all.

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