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.

Home - But for how long?

Home! We have done the first stage of whatever we are doing. The next stage is proton radiotherapy and all that involves. We need to prepare for going over to Florida at very short notice. We also need to attend various appointments for Millie, including visits from our CLIC nurse (Petra) and our CLIC social worker (Kim). And we also need to try and live a normal life and enjoy time with both children.

We have at least 2 weeks whilst the proton panel decide but in that time we have to arrange - a passport for Millie, check ours are in date, ESTA visa waivers, travel insurance for us all taking into account Millie's condition, work out where to get some money from to cover costs (funding sources), try to clarify what costs are covered, inform work, inform banks, get my glasses straightened, get new shoes for us all, figure out how to mothball the house for 2 months, talk to friends and family .... the list goes on. It got to 3 sides of A4 and we didn't manage it all.

It was hectic for a couple of weeks. I didn't get to bed much before 2am because I needed that time to sort things out after all the day to day stuff was done. Family, friends and neighbours rallied round for which we are eternally grateful. Thanks to our neighbours (Mo and Peter) we were put in touch with a couple of local funding bodies.

Thank you Mrs Greens Medical Fund.

Thank you Foeffees.

Thank you everyone in our road for your support.

Thank you Alex.

Thank you Flo and George for helping with our eldest and feeding us.

Two weeks after Millie's LP we were rung by Alison our radiotherapy consultant (we were in the middle of buying new phones suitable for use in Florida). Millie had been accepted for proton therapy! We are definately going to Florida but we still don't know when. I was dreading being told it would be the beginning of the half term holiday. It would have been harder to leave our eldest and it was the May bank holiday. I also thought we might have to arrange flights and everything but, fortunately, most of it was arranged for us by Nathalie in Bristol.

We spoke to Alison again a couple of days later when I hadn't heard anything more. She was able to give me some contact details in Florida (our nurse, Amy, and social worker, Katie) but she also asked if we had been contacted by Frenchay with regards to putting some markers into Millie's head. This had been mentioned to us as something that had to be done but we didn't know whether it was being done here or in Florida. Apparently here, in Frenchay, in 2 days time! The really annoying thing is, that just before the phone call with Alison I had been telling our eldest that we would be there on Thursday morning to see her school show. Now it looked like we wouldn't be.

I rang Frenchay the next morning (Wed) to see if they had a time for tomorrow and point out that we are at least 2 hours travel away. We were not given a time till 2pm. And then we were told we had to be there for 9am the next day. So, we spent the next hour or so getting everything together for a trip that should only take one day but, from past experience, could last 3 days. We had already warned our eldest that we might not be there that night and that Nannie and Grandad might have to pick her up from school. Thank you for being there. And we left for hospital yet again. We took it fairly easy going up, had to feed Millie her tea on the way which always seems to take an hour. We got there just before 8pm as the nurses shifts were switching over. It was nice to see so many of the nurses that had looked after Millie and show them how much she had improved.

We were finally found a bed which Millie settled into surprisingly quickly. My husband was given a key to one of the Ronald McDonald rooms above the ward. And I was given a camp bed by Millie. Yet again, Millie was woken early with obs so I spent a goode couple of hours trying to distract her from eating. She went in to theatre and came out again within a couple of hours. They had also wanted to do a MRI while she was sleeping. I also got them to change her wiggly dressing - had to get something out of being here!

Millie woke in recovery and we were wheeled back to the ward where she immediately ate chicken casserole and then wanted to play! Her normal response. We were actually allowed to leave 2 hours after she came out of recovery, although I did push quite a bit! We were home in time for the kids tea at my parents new house at the end of the road.

We had the half term as a family but were told that we would be flying out on Monday 6th June which was the first day back at school. The flight was out of Heathrow at 7:45am which meant leaving the Sunday afternoon and staying in a hotel for a few hours. We have decided to leave our eldest here. It was a very, very difficult decision. She is a very sociable child that loves school, thrives on having her friends and needs the security of routine. It is also the last few weeks of her first year and then it is the summer holidays so she would be out of school for a very long time. We wouldn't be able to give her the attention she deserves and needs whilst hanging around hospitals for an indeterminate about of time, every day. We are so grateful that my parents have been able to buy a house at the end of our road and are prepared to look after her and give her the security she needs.