Since Isabel was born, 16th October 2013, her head was only getting bigger. She was always a peaceful baby, never cried and was never sick. At 3 weeks old, Isabel was diagnosed with hydrocephalus (water in the brain. She has an MRI which showed she had a brain tumor, so we were transferred to great Ormond street that night. She had her first operation 2 days after being transferred to put in a drain to drain the fluid out of her brain and also for a biopsy. The biopsy results came back after a week. The biopsy was sent to 3 different labs. The results were that she had an ependymoma brain tumor, a very rare tumor, so rare that only 1 in 400 babies are born with one. Isabel had another operation to replace the drain with a shunt (an internal drain which drains fluid from the brain to just under the stomach) which would of stayed in her whole life. We were told that it would be best for Isabel to start chemotherapy, it was really scary, the thought of my baby girl going through chemotherapy. So she then had another operation to put in a hickman line for the chemotherapy treatment in December 2013. Isabel would have treatment every two weeks as she was too little and had to have it split into 4 cycles. When Isabel started chemotherapy she was quite poorly sometimes, she wouldn’t want to be touched much and other times she would always want to be cuddled. She wasn’t always poorly though. We never thought Isabel would smile, but she did. She was such a happy baby. Just seeing me smile or hearing me laugh would make her smile. After being in hospital for over 2 months, we could go home for our first Christmas and New year with Isabel, it was lovely. Everything seemed to be going well, until February, we went into great Ormond street for an appointment for Isabel to have a gfr test done (kidney test), she got really ill all of a sudden on that day so we were admitted straight away. She was also made nil by mouth (she wasn’t allowed to feed anything orally), this was because they were concerned about her brain not being able to send signals to her throat in time for her to swallow which meant it would sometimes go into her windpipe instead. We would have been due to stay the next day on Friday as she would be having chemo then. On the Sunday after, her lip began to look like it was drooping on the left side and it only got worse throughout the night. The doctors decided they needed to operate on the tumor because it was starting to affect the left side of her face. They operated on her the Wednesday after, it was a 9 hour operation, never ending. After the operation, Isabel was intubated in intensive care and kept asleep for 3 days. It was horrible sitting there, not being able to do anything for her. Finally, after 3 days, they ex-tubated her when she had woken up after weaning the sedation medicine down. It was amazing to finally get those cuddles I’d desperately wanted. She wasn’t herself, she was very fragile, even though she was dosed up on morphine to help with pain. It was heartbreaking watching her trying to cry but not being able to get a lot of sound out. We were transferred to Koala ward, the neurology ward, two days after being awake. Isabel was still nil by mouth, and also was always quite grumpy, no one was allowed to touch her or even speak to her most days. I thought those beautiful smiles would never come back again. We stayed there for longer than 2 weeks until we were able to finally go home. We were sent home with a lot of medicines, including steroids, to help with the swelling. During this time at home, I started to notice that her right eye was going in a lot, and she was also developing these twitches, mainly after bath time in the evening. I had never seen it before and thought it was due to weaning the steroids. Worrying about it, we’d been home for five days, I called Kingston hospital (our shared care hospital) to ask if I could go in with Isabel and explained the symptoms. We were there a whole day. They did a CT scan, in that scan they could see that the ventricles in her brain were larger than a previous scan they had done a while before. They had to send the scans over to Great Ormond Street hospital, as they were Isabel’s main care. Later that evening, we were transferred to Great Ormond Street hospital via ambulance. Isabel’s shunt was blocked, this meant she had to undergo another operation to replace whatever part was blocked. It was like one thing after another. She had the operation the day after in the morning, which went well. In fact, it went so well that Isabel began to smile again, not a lot, but enough! But then, 2 days later she stopped, and her right eye was still going in. She had an MRI whilst we were still in hospital, to see how the tumour was after the big operation on it. The next day, on Friday 21st March 2014, a meeting was arranged between the oncology doctor, the surgeon and myself. In my head, I thought “they’re just going to tell me that she has to carry on with chemo’’ but no, it was my worst fear, my worst nightmare, something a mother should never have to hear. I was told that nothing else could be done to save my baby girl. I was told that I was going to lose her forever. Devastated. I was so heartbroken. Mixed emotions. I couldn’t handle it. Later on, when Isabel’s dad, Jan, arrived from work, we had another meeting with the surgeon to discuss what happens next. We were given the options to either start in hospital or to be transferred to a hospice, which is more homely. Not wanting to stay in the hospital environment, we chose to be transferred to a hospice. We were transferred to shooting star chase hospice in Hampton hill on Sunday the 23rd March 2014. I had told them that one of my wishes was to take Isabel swimming because she always loved her baths, she was a water baby, and they said that it could happen. However, the next morning, we me and Jan came down to Isabel, she stopped breathing for 5 minutes, her heart was still beating, but I thought it was the end, It was horrible. I thought I’d lost her. I was begging her to come back… And she did. This happened throughout the whole day. She would stop breathing for 5 – 6 minutes and then come back. It was beginning to happen more frequently towards the end of the day. I got to give her, her last bath. I wanted to be as relaxed as possible. It was a beautiful moment. Later that evening, I asked the staff at shooting star chase if they could bring in a bigger bed so that I could have my last cuddles with Isabel. It was amazing, but so sad. I didn’t want to let go. At 3:30am on Monday 25th March 2014, my princess, Isabel, stopped breathing and her heart had also stopped. I begged them to listen to it again, but there was no heartbeat. I couldn’t believe it. I felt empty. I just wanted her back. At 3:30am on Monday 25th March 2014, Isabel Rose Correia Duzkan passed away peacefully in my arms.