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.

Frenchay arrival

Very rapid arrangements were made for my parents to look after our eldest for however long was needed. Millie and I were taken up in an ambulance and my husband arranged to follow after throwing some stuff together. But what do you take when you don't know how long you are going to be somewhere or even what is going to happen? I still have no idea how my husband managed to get here safely.

Millie and I were taken up by an ambulance with a blue flashing light. The doctor travelling with us wouldn't let Millie go into a deep sleep because we weren't in the best environment if something happened. To this day I don't know what she was concerned about and I don't want to know. She told me to expect Millie to be operated on the next day and to be in Frenchay for weeks. After a 2 hour journey, which was very bumpy in places, we arrived and Millie was taken immediately to the High Dependency Unit on the Barbara Russell childrens ward.

She was hooked up to the various monitors and various observations taken. It all happened so quickly that I only have vague memories of those first few hours. Or maybe my brain has blocked it out. I know we had a very good nurse who looked after both of us very well. I also remember sharing the room with a young girl who was having many problems that were very obviously caused by a brain tumour. Sitting listening to the doctors and parents was very frightening. The girl was Megan and we got to know her parents well, although we still haven't met Megan as she has been unconscious for most of our stay.

At some point during the evening I was told that Millie's operation would not be until thursday. It would be a long operation and would involve a lot of people - it would take a few days to arrange everything. I remember ringing my husband and telling him not to come up until the next morning. I then somehow managed to get a few hours sleep on a reclining chair next to Millie's bed.