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.

Easter Weekend

The days in hospital continue. Starting with the doctors coming round enmass. Sometimes we are both up and dressed and Millie is breakfasted. Sometimes we are both still sleeping, me on the camp bed next to her. The doctors don't seem to have any set time for doing their rounds. In fact, everything happens on 'hospital time'.

Millie improves daily and getting pretty used to being inside the hospital and the ward. She has become quite protective of her bed area! However, my husband and I are going stir crazy and need to get out. We have been given permission to take Millie out of the ward and wander around the hospital in the amazingly hot sunshine. Which we have done at least once a day.

When the doctors came to see us on Good Friday we were told that we could take her out of the hospital for a few hours. This was quite a shock but a very good sign so we didn't lose anytime in trying to arrange to get out. However, we didn't have the foggiest where to go with an ill child on a bank holiday. The staff helped out with suggestions and we were told of a nice river walk with ducks (Millie loves ducks) a 5 minute drive away. We were ready but still had to wait for the rest of the hospital to catch up - we needed to take a sedative  with us in case Millie had a seizure whilst we were out. We also needed to be told how to use it. This almost made the whole trip too scary to contemplate, but the nurses were very supportive and we eventually got out in some fresh air for a few hours after lunch. Two weeks after being admitted to Derriford. Eight days after the operation.

The next day the doctors doing the rounds agreed we could go home for a few days, if we wanted. I almost fell over in shock and terror. Could we really cope? It took a bit to get our head round the idea but decided that we would. Unfortunately, it took a frustrating 24 hours before we left due to an administrative error (the doctors who made the decision forgot to tell the doctor on duty) and hospital time (we needed drugs from a pharmacy that only opens for a few hours a day at the weekend). We finally got to leave, after lunch, on Easter Sunday with 3 easter eggs given to Millie (and her sister) by the nurses.

There have been times over the last couple of weeks when I wandered about going home. At best, I thought Millie would be transferred to our local hospital by ambulance. To be taking her home in her own car seat without any medical personnel around was very surreal and damn scary. Millie slept all the way home and we drove without stopping so we were home within 2 hours. My parents bought our eldest over and we tried to get on with life as a family again knowing that we only had 2 days. I think we all found it very difficult so it was a relief on Monday to be invited to a friend's house for an easter egg hunt. Our eldest played with her friend, Millie loved being outside walking round looking for eggs and then playing with the sand pit, and my husband and I relaxed for the first time in ages. We stayed all afternoon and reluctantly left at about 5pm in time to get home for tea which was being cooked and delivered by our friends! Thank you!

We had to return to Bristol the next day. This time with the whole family and to meet our consultant radiotherapist to discuss treatment.