On the Wednesday after Easter my husband and I met our radiotherapy consultant, Alison, in Bristol Childrens Hospital. My parents looked after both girls so we could concentrate on the meeting. Alison went through Millie's history and asked us lots of questions about how she was and how she is now. She then talked about the tumour and the cancer and how it could be treated. We were told that ependymomas do not respond well to chemotherapy leaving radiation as the only choice. However, standard radiation can be very damaging to normal surrounding tissue particularly in children as young as Millie. The risks are so great that the NHS simply will not do it for children under the age of three. At this point Alison started talking about a new type of radiotherapy - proton radiotherapy which can be focused to a much smaller area and therefore reduces the risks of damage to surrounding tissue. However, there are still risks and side effects - the same ones that come from using any form of radiation on the body. These range from, for Millie, permanant hair loss to further brain damage to secondary cancer. The risks are smaller but still possible and there are still no gaurantees that radiotherapy will mop up all the remaining cancer cells. But what can you do? My husband and I decided to follow Alison's recommendation. We have to give Millie the best chance of life and the best care possible and this is it.
Unfortunately, proton radiotherapy is not available in the UK and we would have to go abroad for it - to Florida. Fortunately, the NHS is prepared to pay for the treatment of children who fit the very strict criteria. We were told that Millie was one of those children, although the decision still had to be made by the NHS proton panel and that could take a couple of weeks. But we would then be flown out very quickly afterwards, like 7 to 10 days! We would be out there for about 2 months in total. After a 2 week planning period Millie would go into hospital every day, 5 days a week, for a general aneasthetic and proton treatment for 6 to 7 weeks. BUT, before Millie's details could be sent to the NHS proton panel we had one more hurdle to jump. They needed to make sure that the cancer had not spread anywhere and to do that a lumber puncture was needed to test her spinal fluid. A Hickman catheter (also known as a port) would be put in at the same time. This is a tube that goes directly into a blood vessel in her chest and is used to administer drugs, including aneasthetics and antibiotics, and to take bloods. It replaces the need for canulars in her hand and the 'fairy gloves'. It will be tough but we can deal with that bit.
We managed to leave the hospital late that day, after our eldest got to sit in an air ambulance that had landed in the hospital grounds - it made her week, she deserves it. I pushed very hard to make sure we could leave. School had restarted that week and our eldest was desperate to go to the school's royal wedding party on the Thursday. We got home very late but somehow managed to get up in time to get our eldest to school on time and in her new party dress!
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.