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• 23rd April 2008
WOW!!! ONE YEAR ON SINCE I WENT IN FOR MY BONE MARROW TRANSPLANT (STEM CELL RESCUE) .
A lot of people thought I wouldn’t be here today after the troubled time I had in transplant. One infection wasn’t enough for me so I thought I would get 5, and not just any 5.........5 serious infections.
Last year I never really went into detail about transplant so I thought since I have a few minutes before I go back and play in the garden I would tell you about it.
Day 1, I started to develop pain in my stomach. I also started to bleed through my nose and mouth this was because my platelets counts where only ONE!!!!! (normally they are above 400) I was also struggling to breath and needed to be placed on oxygen. I was that special I got to have two nurses looking after me. I was in lots of pain and the morphine wasn’t helping me.
Day 2 – I had severe Mucositis, which is a painful condition in which the lining of your mouth is sore and inflamed. I couldn’t eat, drink or talk. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. The snot was just staying at the back of my throat and it was thick like stringy glue. Mummy and daddy spent most of there time pulling it out. Not only that I also developed fluid and electrolyte imbalance. This was dangerous and very worrying.
I developed a Gut infection, that’s why I was in so much pain with my stomach. I couldn’t have anything passing through the gut so I went on TPN which can put the Liver under more stress.
I also started to show signs of VOD, which is liver failure and can also lead to death. The incidence of VOD varies from 1 to 50% between haematopoietic stem cell transplantation units. The risk of VOD is largely dependent on patient selection criteria and choice of chemotherapy used. The risk is highest when transplantation is done for malignancy, since the doses of chemotherapy are higher. Haematopoietic stem cell transplantation units that have broader eligibility criteria and that use high-dose chemotherapy and higher doses of total body irradiation will gain efficacy against malignancies and be able to treat a sicker population, but at the cost of more deaths from VOD. Am only 3 years old and I know all this already!
I also got two line infections, which made me very ill, but the lines couldn’t come out or be rested as they needed the lines for things like antibiotics, TPN, fentanyl which is a much stronger painkiller than morphine as the morphine wasn’t working.
Day 3 – was the same vomiting, sickness, sleeping, diarrhea and bleeding
By day 6 my SATS were dropping, now for a little girl off my size I should only have 2 litres of oxygen going through but I needed ten which is the highest it can go, I then needed to go on to wet oxygen, and then Mummy and Daddy were told by the nice doctors that if I carried on like this I would need to go to ICU.
I carried on getting worse and had ICU care in my transplant room poor Mummy and Daddy never slept at all.
Mummy: “After two long weeks off battling with are little girl’s life, we thought this was it, I remember the day like yesterday. Friday afternoon we closed all the blinds in transplant and turned off the phone and the internet. We sat there talking; Emma had worse infections than what the doctors liked Emma had 3 nurses by this point looking after her and a doctor on stand by, and a bed booked on ICU in case she needed to go”.
To everyone’s amazement my neutrophils started to flicker the day after and I wanted to sit up and play. I began to hold my own SATS and came off the oxygen but then I started to go blue so I needed to go back on the oxygen but that didn’t stop me playing on my bed with all of my new toys that where sent in to me in the post. After that I went from strength to strength, 3 days after that I was put into secondary transplant which meant people were allowed to visit me.
After a week and a half we were allowed home, despite the odds I survived and was home. So you see every child is different and I over come all the nasty infections that were thrown at me. Mummy and Daddy made me laugh and always had my Cinderella DVD on in the background for me to listen to.
To look at me today you would never have thought I had gone through such a troubled time, am so healthy and so full of life.
I spend most of my time playing out in the garden or playing with all of my toys. I don’t let anything get me down.
Before I go back to play in my beloved garden.
I would just like to say Sammy Hughes funeral was today, I would like to pass on my love and respect to Sammy’s family.
Love Emma 18th April 2008 Hello everyone, as I have more time on my hands today I thought I would tell you more about my holiday and things I have been up to. Before I begin I would like to share some sad news with you all, sadly one of my NB friends, Sammy Hughes past away on the 15/4/08 at 7:15pm, she was surrounded by all of her loving family and until the very end she was fighting. Mummy received a sad email of her Nanna Diane. So please go on her web site and leave a nice message www.samanthahughes.co.uk Well were do I begin about what I have been doing. My holiday was amazing, I went on my first rollercoaster but I didn’t just stop at one I went on them all at the theme park Paultons. I went on the pirate ship, and of cause Daddy took me on the slower rides!!! We went on walks well hikes down to the beach where I was chasing after Mummy and Daddy and throwing sand at them haha! We went up to the entertainment one night and I got up on stage like normal I was very funny and took over it. We went to the biggest water park in Britain it has over 18 in door rides and 3 out door water rides and it had a baby pool for me where I was swimming all by myself, well with the help of my arm bands. We went on the Bournemouth Pier, Daddy wanted to take me on a boat but Mummy wouldn’t come, lucky for her Daddy had missed the last boat trip. We went on the arcade and I won but then it started to rain so we went back to are campsite and I wanted to go on the arcade. There was a little ride that I had to go on every time we went past. I started my accutane when I was away and my skin went a bit red but nothing I can’t handle. We had to come home a day early as Mummy and Daddy had a wedding to go to. I stayed at Nanny Ang’s but not for long, as at about 1am I started being sick, I just wanted my Mummy so at 2am in the morning Nanny phoned and they got in a taxi and came for me. I had Mummy up until 5am being sick then I fell asleep. I woke up at 9am like nothing had happened tickling Mummy’s feet, well if I wasn’t asleep she wasn’t going to sleep. I was great all day but on the next day I was sick again! but it was right in the middle of the supermarket haha! I was great in myself. I was still running around and just being sick every now and then. Then it repeated for most of the week I was ok Tuesday, sick Wednesday then from Thursday on wards I was great. I can do most of my colours now RED BLUE GREEN AND YELLOW! and my speech is really coming on. It's so hard to update my site these days with out repeating myself, my day goes like this: Wake Up nice and early and then go and wake Mummy up, I have my organic breakfast I watch a bit of TV Dora, Peppa pig and Diego then I spend the rest of the day playing with my toys or if the weather is nice I go in the garden or for walks. I am always making Mummy and Daddy laugh with the things I say and do, even the faces I pull. I have to have the last word!!! Just like Mummy! I love playing football now and am getting really good so watch this space. I also love dancing and singing too and I am really good at dancing. Am always dressing up there isn’t a Disney Princess dress up dress I haven’t got. I can now get my hair in a bobble and I had my first hair cut yesterday so my hair isn’t in my eyes, I walked into the hair salon, well marched in, told Trish “I need my hair cutting” with my hands on my hips, then as soon as I sat down and I seen the scissors I started to cry, they want me to go back every 2 weeks, Mummy said yes but I have other ideas. Well I think I am running out of things to tell you now. I am still doing my organic diet and Mummy is a great cook now, I love meal times. Before I started my 7th round of accutane, the pharmacists came out to speak to Mummy and look at me, she said “I can’t believe how well she has done, with no side effects, normally we have to lower the dose, due to skin, sickness, liver problems etc” but not me, Mummy went dead red and said we have been lucky with a lot of things and gave me a big goofy smile. Oh, before I forget. Mummy went to see a clairvoyant a few days ago, and done something with my date of birth and she said I was an 8, Daddy was a 7 and Mummy was a 1, she said in the scale 1 is weak and 9 is strong, she said I was like my Daddy which we all know but she said I was strong and am going to be trouble when am older, what about now ay! Haha!! Well I can here the Wonder Pets starting and I can smell my breakfast being cooked so am of now to enjoy my day, speak to you all soon. Love Emma 15th April 2008 Hello everyone, once again sorry for not updating the website but I have been really busy having lots of fun fun fun! First of all, my friend, Samantha Hughes is really poorly at the moment and needs lots of positive thoughts sent her way so can you please go to her website and leave a message. Samantha's website was the first website my Mummy and Daddy read about Neuroblastoma and gave my Daddy the idea to do a website for me - http://www.samanthahughes.co.uk/ I had a brilliant Easter thanks to The Thomas Ball Charity - http://www.thomasball.org.uk/ They contacted us to say they had a free week at one of holiday homes by the sea so we went for Easter. It was really good and we went for lots walks and seen lots of new places. We went last year, just before transplant but this time was more fun as I could go swimming as I had no central line. Also, I don't wear nappies anymore, am a big girl now and tell Mummy and Daddy when I need to go the toilet. Am still very well and full of energy and on a full organic diet. I have just started round 8 of Accutane, I have 22 tablets everyday, 11 in the morning and 11 at night. Mummy and Daddy decided to extend it to 9 rounds (you only do 6 rounds) after talks with my doctors it was decided that as I have no side affects, I could do it for 9 rounds, think Daddy wants to do a full 12 rounds but we will see what happens. I still do cooking with Nanny Dee almost every week. I also stay at Nanny Ang's and play with Auntie Heather and Taylor as they have been off school for half term. Lots of Love Emma XXX |
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