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27th January 2008 HAPPY BIRTHDAY MUMMY My Mummy is 22 years old today so me and Daddy are going to treat her all day. Mummy's 21st birthday was spent in hospital with me last year and this year she is stuck in New York, away from family and friends so please leave a message in my guestbook for her :D The man on the TV said it is going to snow today so hopefully I will be able to go and have a snowball fight with Mummy and Daddy today. Happy Birthday again Mummy and I love you loads xxxxx Love Emma 24th January 2008 What a busy few weeks it has been for me, we have been waiting for a copy of the medical records to send to America, well we received them on 14th January and sent them to America on the same day on next day delivery! We got told on the 15th that we could come to the hospital in the USA the following Monday (21st) as long as all the deposit was paid. So we had a lot of rushing around to do, we paid the deposit and booked flights and hotel and we where flying on Wednesday (16th) in the morning time.......I was very tired in the morning but very excited about going on the plane. I sat next to Mummy all the way, almost 8 hours!!! I was very good girl and Mummy doesn't like flying so I helped her through it! Well most of the time I was running around and jumping up and down on my seat. Mummy said I had ants in my pants! So after a long day of flying, we arrived in New York and we where soon at the hotel. Mummy and Daddy looked very tired and me. well...I got my toys out and started to play with them. Me and Dora explored the hotel room and ended up jumping up and down on the bed. Mummy wants to know where I get all my energy from. Daddy checked his emails and he had one off MSKCC, the hospital, and they where sorry but Dr Kushner was on holiday on 21st January but we could see the doctor on the following Monday. Daddy talked to a few people on the phone and we ended up getting an appointment for the next day, Thursday 17th January! So we didn't have much time to settle in as we got to the hotel in the night time and had to be up in the morning to go the hospital. We arrived at the hospital nice and early, they have a massive toy room so that is where we spent our time until it was time to see the doctor. We where called in to see Dr Kushner and spent almost 2 hours talking to him. He was very impressed with Daddy, he had lots of questions for him and lots of information and the doctor wanted to know where he got all the information from. The doctor was impressed with how well I am and he has a very positive attitude. The main thing to come out of the meeting was that if I was cancer free, then he would not recommend treatment now and would use the special treatment as a relapse treatment. Back in October 2007 when I had my last scans, My MIBG scan showed something in my belly and they thought it was the nasty cancer so I needed a CT scan to compare the scans and the CT was clear so the conclusion was that am cancer free. Not as straight forward as I would of liked it to be but am Happy! At MSKCC they do scans every 3 months so they recommended that we have tests done while we where here as they have a track record of finding the nasty cancer where other hospital fail and as my last scans where not straight forward, we agreed. One thing is, they test the bone marrow in 4 different places, in the UK it's only 2. So we arranged to have CT and MIBG scans and Bone Marrow test done. Yesterday (23rd) I had my CT and Bone Marrow tests done, my MIBG scan will be next week. We got to the hospital very early as I needed to drink some contrast before the scan. I then had some magic milk and then feel asleep. I woke up and all was done, Once I had done a wee I could go home, I didn't want a wee............for the next 4 hours I didn't want a wee! but then it came, after a very long wait for Mummy and Daddy I had a wee! So we went off back to the hotel. I need to be back at the hospital next Tuesday (29th) for the MIBG injection then the scan the following morning. Now that's all the medical part done, here is the best bit's I met Jack Brown yesterday ( http://www.jackbrownappeal.org ) when we where at MSKCC. It was like a superstar neuroblastoma meeting! Jack looked very well and we played together with his brother Connor and sister Rhian. In the 4 hours of waiting for me to wee, I watched The Little Mermaid twice and maid a nice necklace with my name on. Since being in New York, we have spent a lot of time walking around Central Park, it's very nice but it has been very cold! I mean very cold like -10! We went to Strawberry Fields and we went on a horse ride around Central Park. There is a big Ice Skating ring in the middle of the park, Mummy and Daddy said I can go on it if we have time over the weekend. I have never been Ice Skating before, I watched lots of people fall over so it looks really hard. We have 5 days to go until I need to be at the hospital again so we are going to try and do as much as possible and see all the great sites of New York. I need everyone to pray and send positive thoughts that all my scans are going to be clear. Love Emma PS When you have a second can you please have a look at Samantha Hughes website at http://www.samanthahughes.co.uk/ For a few weeks Sammy had a pain in her arm and a MRI scan confirmed a large mass in her shoulder. Sammy is having other tests done this week, MIBG scan etc to see were else it might be, fingers crossed it is no were else. Please pass on all the positive thoughts that you have shown me, you have no idea how much they help.
6th January 2008 Happy New Year
Everyone! Mr Pete Price gave us the grand tour of backstage and I got to ride in Cinderella's carriage and I got to go on stage before the show started but all I wanted to do was meet Cinderella. Every time someone asked me a question all I said was "Cinderella, Where is Cinderella" this must of made a great interview for radio hehehe. The nice stage manager even turned the snow machine on, just for little old me! Just before the show was about to start, Jane took us to our seats, we have an amazing view and I had lots of room to dance about. At the interval the stage manager came to us and asked if I would like to meet the real ponies before they went on stage, I jumped at the chance so we went backstage again and there where 2 amazing white ponies, I stroked them and asked Daddy if we could take them home, he said he will see.....am not holding my breath. I even asked if the ponies could come and sit next to me and watch the rest of the show but I think I was pushing my luck and they needed to be on stage anyway. We went back to our seats to watch the 2nd half, Pete came on stage to say a few Hello's and Happy Birthdays but first of all he shouted my name out and asked me to wave to him and told everyone I was a very brave girl and that I was his guest for the day. This made me feel very special :D . When the show had finished, Jane came and asked if we enjoyed ourselves and invited us backstage. Pete was there waiting for us and asked if we had a good time, he then said I could meet Cinderella and have my picture taken. I was lost for words when Cinderella asked if I enjoyed the show, first time for everything! We said thank you and then our goodbyes and left with smiles as big as the River Mersey. That was a truly magical day and meeting Cinderella was the best, sorry Pete :P but thank you to everyone who made the day so brilliant. Today I went to see Aladdin at Southport Theatre, this was made possible by CHICKS, who provided us with some tickets so thank you to everyone at CHICKS. So apart from going to see panto, I have been playing with all my toys, the best toy is my baby monkey which I take everywhere with me and I feed it when I eat and I give it some of my bottle, when I have some. Am really healthy, full of energy, enjoying life and am being a good girl for Mummy and Daddy, am back in hospital next week for a check up. I have finished round 4 so now I have 2 weeks off and am planning on enjoying it as much as I can. Love Emma
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