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.

The Operation and Recovery

The next few days were a blur. My husband made it up on the Monday. Millie was moved out of HDU. At some point they decided that Millie needed a CT scan and to do this they would probably need to sedate her. It had already become obvious that Millie was going to fight everyone and anyone that came anywhere near her! Understandable, they kept poking her every few hours.

Our nurse for the day felt that we could try to get her into the CT scan whilst she was sleeping (I had my doubts but was still learning so didn't voice them). After lunch I walked her about in the pram for an hour or so, we were even allowed out of the ward. She finally fell asleep so off we dashed only for her to wake up at the reception desk of the CT scan ward! Back to our ward we went and Millie was given a sedation. Our nurse left us for a bit in the hope that Millie would settle, calm and hopefully go back to sleep. No chance! Everytime Millie saw a nurse she would sit bolt upright and shout 'Go way'! Eventually she had to have a general anaesthetic, which is not as easy as it sounds because she is not allowed to eat anything for 6 hours beforehand, and only water upto 2 hours beforehand. Try explaining that to a very hungry toddler who only drinks milk.

We had a couple of days settling in to the ward and its ways before the operation. I slept on a fold out camp bed next to Millie's bed and my husband camped out in the playroom. We were waiting for a parent room. Thursday dawned and Millie was on nil by mouth (again). She was eventually taken in at half ten. Seeing your two year old falling asleep and then being whisked off you and a breathing mask put on is very unsettling. Knowing that she was about to undergo lengthy brain surgery was almost unbearable. We felt we had to leave the hospital and decided to walk off our nervous energy at Ikea. We spent more time looking at our watches and checking mobile phone reception than looking at anything in the store. Apart from food we left without spending any money. How could we buy anything when we didn't know what the future held? We didn't even know if she would be coming home with us.

We returned to the hospital at about half four and were shown to the parent's quiet room. It was another two hours before we were told she was in recovery and the operation had gone well. We rushed down to get her and she immediately rolled herself over and pushed herself up for a cuddle. Bless the medical staff who very calmly tried to keep her from wrapping herself up in the various tubes and wires that were attached to her. She also managed to remove her head bandage within the first 5 minutes! The staff quickly gave up trying to keep her still and calm in the bed and let me pick her up for a cuddle. I was asked to try and keep her semi-prone but the worst that would happen to her would be a headache. We were wheeled to ITU in a wheel chair!

Millie didn't need to be in ITU but another child who was also being operated on did. The nurses in HDU also cover ITU so whenever a child needs to be in ITU everyone in HDU is shipped enmass. The other child turned out to be Megan and the nurses worked on her ALL night long. I have never seen anything like it. The last thing they needed was us. Millie has gone down in Frenchays history book. She talked non stop for 14 hours following the operation! They even dosed her up on morphine in an attempt to keep her calm but even that didn't shut her up. She lay still for most of the night but just kept talking about anything that came into her head. I got a couple of hours sleep next to her.

It was good to see the doctors smiling over her and the next morning we were moved out of ITU (to the relief of the nurses and us) and onto a normal ward.

After moving to the ward Millie fell asleep. I left my husband to sit by her whilst I got some breakfast and showered. Typically, she didn't sleep for long - only a couple of hours. She became quite agitated and I had to go back to her bedside. Shortly after this she had a seizure. It was the most terrifying thing ever and something I really, really don't want to happen again. It started with her talking and looking a bit odd. She said her right arm hurt and kept saying "Stop it".  Her right arm started twitching, her sats dropped rapidly and I hit the nurses call button. The rest happened very quickly but was almost in slow motion. Millie started twitching down the whole of her right side and the nurse got a doctor. Millie then started a full seizure and suddenly there were loads of nurses and another doctor around her bed side. I had to leave I couldn't watch Millie like that.

The seizure lasted 25 minutes and she needed 2 lots of sedation. They immediately took her for a CT scan (there was some bulging on the side of her head) and returned her to HDU. Fortunately the scan came back clear - no fluids, swellings or blood clots. The bulge was the collection of fluid between the skin and skull which would have been kept under control if she had kept her bandage on! They did need to keep an eye on the bulge but it got smaller over the next few days. She had had what was called a focal seizure - a risk of any brain damage, and her brain is damaged on the left hand side. The seizures take place on the other side of the body. We were warned that she would be drowsy for a while and would have quite a hangover, not just from the seizure but also from the drugs. Another night in HDU.

Two days after the operation Millie was taken for an MRI to determine how much tumour had been removed. We couldn't believe it when they came back and said that it had all been removed. It meant we could start to concentrate on getting Millie fit and strong again. We still needed to wait for the histology results which would take 4-5 days. Again, the next few days are very vague. Millie was very weak to start with and unable even to sit herself up. But within a couple of days she was sitting in a highchair and feeding herself. A few days later and she was crawling, then she was up on her feet and walking with support. Her physical progress was incredible - nothing was going to hold her back.