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Emma's story It all
started when Emma turned 1 years old. Emma developed a cough, the doctors said
it was normal as she had started teething, then the cough never went away and the doctors said
it was a just a nose cold, I wasn’t sure it was either of them so I took her to
see another doctor, he used to be a paediatrician and he was sure it was not a
nose cold or a teething problem. He put her on antibiotics and also inhalers as
he thought it might have been asthma but doctors do not diagnose asthma in young
babies, he also sent her for chest x-rays but these came back all clear. On the 13th November at 6pm we were transferred to Alder Hey Children's Hospital by ambulance. We where put on a surgical ward and lots of doctors kept coming in to visit us, just to introduce themselves. Emma was put back onto a drip as her intake of fluids were so low. Emma's pain also started again that night, however we had to wait until the doctor came around to see her before she could have any stronger pain killers. The nurses on the K3 ward were amazing and really helped us through the tough time. At 12am, when the doctor got out off theatre he came straight up took one look at Emma and put her straight on morphine infusion. Finally my little angel had a better nights sleep. Tuesday morning me and Stephen were up early as the doctors were in and out. We was told she would have a CT scan at 2pm. The time soon came and we were took down, Emma screamed the place down as it was so big and scary to her. It was to much for me to watch, so the nurse took me outside and calmed me down, Stephen stayed in with Emma and had to pin her down. After 20 minutes it was done. That's when things began to hit us a bit more. They asked for a urine sample to be done to see if there was a certain type of steroid being produced. At 6pm on Monday night we got a phone call to tell us we had a room in the Ronald McDonald house, Stephen went over to pick up the keys and I stayed with Emma. Another oncology doctor came to see me and told me that they had found a tumour 15cm X 11cm on her right kidney, and they thought it was one of two types, either a Wilms tumour or a Neuroblastoma. I didn't have a clue what either of these were, just because someone has a tumour it doesn't mean its cancer. Then the doctor told me a form of treatment would be chemotherapy, well what else does that treat, so right there and then I new what she was telling me my little girl had cancer. I was all by myself and just been told the worst news any parent could be told, then Stephen came back into the room, he than sat down and got told the news. The doctor said more to me but that night went by in a blar blar blar and I had to get Stephen to remind me what the doctor had said. I just remember going to phone my Mum to tell her. Wednesday came Emma's 2nd birthday, me and Stephen were up at 5am and got over to Emma at 6am to start setting up her presents. Emma woke up at 7:30am and opened some of her present's then fell back asleep leaving half of her presents unopened. she woke back up at about 12pm and started again. She didn't last long again and went back a sleep until 3pm when the family came in. The Doctors left us alone as it was her birthday and because of the morphine she was a happier person as she wasn't in that much pain. However she still couldn't walk as the pain in her legs was so bad. The nurses got Emma a lovely teddy bear and a pair of "Ice Age" PJ's. They made Emma's day really comfortable and special, a buffet was even sent up from the kitchen for the whole ward and everyone had a party. On Thursday we were told Emma would be having a "Central Line" fitted, as it would be easier to access, for bloods etc etc. All she had in was a Cannula which kept collapsing. We were also told Emma would have a biopsy on the tumour and two tests done on the bone morrow called Aspirate and Trephine. These were all scheduled for Monday morning. The few days leading up to that just went by in a blair. At night I would cry myself to sleep and relied on Stephen to tell me everything was going to be ok. Stephen was finding it hard to take it all in, but as a men does he kept it all inside and stayed strong for me, Emma and all the family. On Friday we met Emma's consulted Dr Pizer, he told us that the urine sample wasn't much help so we would just have to wait until after the biopsy. Monday soon came and Emma was put under general anaesthetic. It took 2 hours in all, then Emma just slept for the rest of the day. On Tuesday we had the choice to go home until the results were in, we had packed Emma's room and the McDonald house within 2 hours. We got home at 7:30pm that night. It was great being home, and Emma really came out of herself. Emma still just wanted to be cuddled by me, you could tell she was more comfortable than last time we where home as a family. On Friday we got a phone call from the hospital to say the results were back, and we were to come in at 12pm on Monday. Emma was ill again over the weekend, so we had to make two trips to the hospital. We were allowed home after both times which was good. Sunday night came me and Stephen couldn't sleep, I had a gut feeling we wasn't going to get the news we wanted. Something was telling me to pack an overnight bag. Monday morning went so slow, 12pm soon arrived and we were took into a side room, with Dr Simone, Dr Pizer and Helen who is a McMillan nurse. Simone told us that Emma had Neuroblastoma stage 4 N-MYC Positive, What the hell is all this I asked myself. She told us that it was on Emma's right kidney and they were unsure weather it was pushing against or it had grown into the kidney, they also told us it had spread to Emma's bone marrow and her bones, we were then told an MIBG scan needed to be done to see how far it had spread in the bones, but she told us to be prepared for it to be spread all over them. Simone also told us Emma would need an CT scan to see if there was any other tumours in Emma's little body. Simone said she would come back to us later as she did not want to fill are heads with too much as we would forget. Dr Pizer told us that there was only a slim chance Emma would make it though. They then left us alone and then that's when the tears came. I have never cried so loud in my life. Emma wouldn't let me go or anyone come and comfort me. I went and phoned my mum while Stephen phoned his parents to tell them that there little granddaughter was very ill. We were then taken on to the ward so further tests could begin, straight after being told the worst news ever, we had no time to rest, Our little girl was really ill and needed treatment ASAP. If Emma did not have treatment now, she would only be with us for the next few weeks, that's how bad she had got! The nurses were great and made Emma feel at home. We were told Emma would need a blood transfusion as her HB was 5.5. This shocked us but it became a common thing. Monday afternoon Emma had the CT scan we had to pin her down for that one, which was fun. Later that evening Dr Simone came and explained Emma's treatment protocol. We were told Emma would need 8 rounds off chemo over a period of 80 days and would be over 10 days for each round. Day one would be the first dose of treatment, as some people count the ten days from the day they finish the treatment. It often worked out we were in for four/five days and home for two - three days then back in. This stage of chemo was called rapid coject, it was high doses of chemo, Emma would need GCFS, which people often refer to as a bone marrow boost which would help her counts come up before her next lot of chemo. We were told half way through Emma's chemo she would have another series of tests to see if the chemo was working on the Neuroblastoma. Emma would then be harvest for her own stem cells, as she would need a stem cell rescue. We were then told if everything went to plan she would have her operation to remove the tumour. Then about two weeks after this she would then need very high doses of chemo 24 hours aday for 5 days to wipe out any cancer in Emma's body but it will also kill off her bone marrow. After this Emma would have to go into strict isolation within a transplant room as she would be of high risk of infections of which could lead to death. When Emma's counts recover we were then told she would undergo 14 days of radiotherapy on the tumour sighting. Then once Emma had under gone all this she would have to take Roaccutane for 6 months. All this was mind blowing, the Dr gave us a print out of the treatment plan and our own file so we could keep a daily record of her blood counts and chemo. That evening the doctor told us Emma only had a 20-30% chance of surviving. We used this as a positive, we had a chance! Up until Christmas Emma was really ill on her chemo. We gave her anything she wanted to eat as the doctors told us that anything she eats is a bonus. Stephen wouldn't just rest knowing Emma only had 20-30% off beating this even after all the treatment. Not in this day and age. Stephen started to research and spoke to other families who are going through the same. Through researching he found out people were opting to an Organic diet and changing life styles. He researched more into food and what we could do around the house. At Christmas we changed Emma's diet to a strict Organic diet and she started coping better with the chemo, stopped the sickness and had so much more energy. We changed our lifestyle completely but we will talk about this another time. Emma responded well to all the chemo she was given and the tumour shrunk by more than half it's size in just 4 rounds of chemo, her bones and bone marrow where all clear, which was amazing. She had her operation on time, as me and Stephen have read that some children with Neuroblastoma need a few more rounds off chemo before the operation. Emma's surgeon Prof Lofty came to see me and Stephen the night before. He was amazing and sat and spoke with us for about half an hour. After the talk I felt so much better and I felt really confident to who I was letting operate on my little girl. He had amazing people skills and told us he had a personal vendetta against cancer. He said he is a father himself and is going to do on Emma what he would want doing on his own little girl. He told us both how he hated Neuroblastoma and he was going to get everything he could out. I can't explain how that made us feel, he is an amazing person and surgeon. Emma went down at 10 o'clock the next day, it was hard for both me and Stephen sending are little girl to sleep. We were told we could phone are nurses at any time and they would be able to phone down for updates. We phoned at 12pm to make sure they got started ok and we were told everything was going to plan. At 3pm we got a phone call to say Emma was awake and in recovery. We thought the operation was going to take at least 8 hours after what we have read this seemed to be the average time scale. We raced over to the recovery but due to my slippers, Stephen won and was the first one into see her, only one person was allowed in the recovery room. He must have been in there for 20 minutes and then Prof lofty came to see me outside, my heart jumped to my month and I thought what's up? He came to tell me everything went like a dream, it couldn't have gone better and it looks like a large majority of the tumour was dead and he got everything out! All the tumour was out!!! I wanted to jump all over him but I thought know, other are people around. I just wanted to hear them words over and over again. Emma woke up while Stephen was in with her and told him she wanted Mummy. She looked really well and the nurses in there were amazing. Emma started being sick, nothing to worry about, but I always got a bit worried, I started going all hot and horrible so Stephen came back in to sit with Emma. Emma had a bed booked on ICU but we where told she didn't need the bed and she was going on HDU, she was well looked after in HDU and we met some really amazing children on that ward as well. Prof lofty came to see us that night and to check Emma was still doing ok. Stephen asked again about the operation and Prof Lofty said "does my face look happy" and said it couldn't have gone better. After he walked away I said to Stephen "you know all this anyway, why did you ask him again?" he said "I just wanted to hear those words again". We were back on ward K3, not even 24 hours after her operation! She slept all day Thursday. On Friday she was sat up, then on Saturday she was up and about wanting to go to the toy room, we could not believe it. Sunday and Monday there was no stopping her and Prof Lofty was pleased so we were allowed home Tuesday. I thought we would be in for over 2 weeks but I underestimated Emma's recovery ability and so did everyone else. Transplant was the hardest time of our lives. Emma got 3 infections all in one day. She had a line infection, a gut infection and a lung infection as well as mucositis! this which meant she had to go on to oxygen as her oxygen sats were dropping below 80, we were told if Emma couldn't hold her own she would have to go to ICU, we wasn't ready for that. Emma was platelet dependant, they dropped to 1!!!!! When she was sick we had to hold her head as she was too tried to hold her own head up, she had diarrhoea and we found our self's changing her bed 10 times aday. Emma slept mostly throughout transplant. She was on fentanyl for her pain as morphine was not working anymore. She was on TPN as she wasn't eating, her electorates were up and down and she had constant potassium infusions. Emma started to gain weight, it was feared it could be VOD (the liver shutting down!) she was having x-rays everyday on her chest and she also had an ultrasound scan which showed a shadow by her liver, more about that later. On day 17 Emma's counts started to come up and then on Saturday she was up and playing as if the last 3 weeks never happened. On Sunday we had our first visitors in over 3 weeks. After that Emma's counts kept coming up and we were allowed home for a few hours each day. We had to wean Emma off the TPN and fentanyl and soon as she was off them we were allowed home. 19 days in transplant and hell but it could of been a lot worst. One of the doctors summed it up when he was talking to Stephen when we where going home, he said "well she survived it!" Me and Stephen were asked to go in for a meeting with Emma's surgeon and Dr Pizer. They explained Emma had a 4cm X 4cm tumour on her liver, this is the shadow on her liver, found when in transplant. They were unsure weather it was worth the risk of operating and they also got a second opinion. Which just swayed the voting over the line to operate. We got told it was another major operation, it was on liver but they wasn't sure if it was in the liver and it was on all the clock work to and from the heart. We had to cancel are holiday to Cornwall we had booked and Emma was booked in for surgery the following Wednesday, this gave us 4 days before we had to be in hospital. Prof Lofty and Dr Pizer wanted us involved in the decision making about this surgery but with Prof Lofty doing it again it wasn't a hard decision to make, we thought it would be best to go ahead with the operation. So once again our poor little girl was going under the knife..... Emma went down to surgery at 9am on Wednesday morning and again we were told it would be another long day. In all it took 5 1/2 hours, now for what they done in this operation, that was very quick and Emma went straight back onto K3. No ICU or HDU. She recovered quicker this time around and it should have took her longer as this was a bigger operation that her first one. Prof Lofty came to see us after the operation, just to say it went well and they removed a lump the size of a golf ball out, and that it was all crumbling in his hand (meaning it was dead). I was amazed yet again. Dr Jezz (another surgeon at Alder Hey) came up on the Sunday to see Emma and gave us more of an insight about the operation. The tumour was on liver and on all the clock work to and from the heart and also on the four main blood vessels going into the gut. He told us that they were very lucky because if they had touched just one of the blood vessels, it would have shut down Emma's gut and she would have needed a gut transplant, which is a none starter! He told me it was on the aorta and the superior vena cava coming off the heart and he also told me it was on the main vain coming off the liver. He said that if they had cut the vein that they could see it would be easily repaired but if they had damaged where they couldn't see it, it would have been a lot harder to repair. We were told we were very lucky to get away with that operation and with positive results. The tumour came back 99% dead and under 1% was mature Neuroblastoma. Two weeks after the 2nd operation, Emma started Radiotherapy at Clatterbridge Hospital, we had to be up, dressed and out by 7:30am......every morning......for 14 mornings......out of 18 mornings! Emma soon got used to the early morning start and loved all the people who were involved with the radiotherapy. Every morning she was so hyperactive with them making them play hide and seek and run around with her. She had to under go general antistatic every single morning but soon enough she would come around and be up and out within 10 minutes. The two and a half weeks soon flew over and we said are sad good byes. Emma even got a present on the last day of radiotherapy. Now Emma is on her Roaccutane for 6 months, I can't even begin to tell you how fast this year has been. I thought this year would go really slow and have so many downs, but I have met some amazing people on the Oncology ward, who to this day I have kept in touch with. I do have some upsetting memories but I have so many good ones too, the friends I have made there. I thought the oncology ward would be sad and heart breaking, yes it is sometimes, it's sad seeing the kids go through this but they teach you a thing about life! They have so much fun and they do not let cancer get them down. The nurses are great and I have had such a laugh with them, Emma has got really attached to nearly all the nurses and all off the doctors. The play specialists are amazing, they always make sure the kids have something to do. Even though you never picture yourself being in this position with your child, you soon get over the "why me? what have I done?" You start to enjoy it and make the most out of life and your time in hospital. I can't thank the staff at Alder Hey and the parents I have met enough for being there and showing me a different side to life. Your child may get diagnosed with cancer, but your life doesn't end there. People will start to say to you "I don't no how you cope! I wouldn't" It's the children that make you cope. No matter what gets thrown at them they still have a smile on their face. I really do have some amazing memories off the past year. Please read Emma’s Diary for updates.
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