Amelia S

15 December 2012

Story written 2012

Amelia is 4 years old. She started developing a noticeable wobbliness, her left hand was shaky, she kept falling over and her coordination deteriorated over a fairly long time. After several trips to the doctors and a blood test proved inconclusive we were referred to a paediatric consultant at our local hospital. She was seen on the 30th January and sent for an MRI scan the next day. We were told the news a few hours afterwards that she had a brain tumour, and discovered the next day that it was a fairly large brain stem tumour. A few days later we were transferred to the John Radcliffe Hospital in Oxford who have a dedicated neurology department at the Children’s Hospital.

A second MRI of her spine showed no tumour advancement to this area, and she was then operated on. The operation had two goals – one was to biopsy the tumour, which produced 4 tissue samples during the operation. The second was to try and remove any tumour other than the samples – which they were unable to do. After several days we were told that the samples showed a grade 2 Diffuse Astrocytoma, indicating that the core of the tumour was likely grade 3 or 4. We were then told that there was no chance of survival of a tumour of this type.

Chemotherapy and radiotherapy were offered, however we were told that a median increased survival of some 4 weeks was achieved after this treatment. We declined with the reason that we would rather spend quality time with our daughter than spend more weeks in hospital for such a dismal outcome. Amelia returned home unable to walk, she had speech problems, she was half paralysed and generally in a very bad state.

But she got better. Amelia showed us all how amazingly strong and brave kids can be, and after a few weeks we decided that we couldn’t sit and watch her die. The local community fundraised and sent Amelia to the Burzynski clinic in America. Treatment helped and the tumour became stable, and Amelia even managed to start school.

Sadly things did not remain stable and Amelia has deteriorated quickly. Today Amelia went to school for the last time, she was unable to speak as her speech has now gone, she is mostly paralysed, she can not sit up, she is loosing the ability to swallow and her breathing is getting worse. Tomorrow she will be transferred to a hospice.

Amelia has touched many people, both in her local community and around the world.

Update 6th January 2013

Amelia, our beautiful little girl, left us this morning at 9.50am, holding both our hands as she took one last breath. It was peaceful, quiet and without pain or suffering. Chantal and I had told her only minutes before that it was OK for her to go, to be free. Now she is.

Although there is a huge hole left in our lives, Chan and I will be strong and support each other through this awful time. Charlotte will have all our love as our daughter, and when she is older we can tell her about the amazing big sister she once had. Our hearts are shattered into a thousand pieces.

Thank you, everyone, for your love and support. Our lives will never be the same again.

Update evening of 5th January 2013

Amelia has slept almost the whole day. She has slept peacefully, only occasionally requesting a drink which we are able to get into her. She was awake for an hour or so at about 5pm which meant she could be with us at dinner time, and Chantal established she can eat cheese sauce and she ate lots of it. This is really good news as it avoids us having to put a feeding tube in.

Amelia is calm, so much calmer without the steroids. It appears they had passed the point of being effective so their removal hasn’t been drastic. The doctor believes we might now have a few days of stability and then a continued decline until the end. We don’t know how long but it might be another week. This is good news as it allows us time to talk to her and also be together as family without Amelia being in pain or discomfort.

Update 5th January 2013

We made the decision yesterday to not continue with Amelia’s steroid dose. This has two potential effects – one being that she will no longer be so hungry (she can no longer swallow anything really, just milk and little bits of chocolate) but also this will likely accelerate the effects of the tumour pressure inside her brain. Her quality of life is so poor that we made this horrible decision.

Amelia is now barely with us. We had more friends and family visiting yesterday, mostly for the last time. We are not sure if she will last the weekend but she has always been such a fighter and always amazes us. She is still the feisty, brave little girl inside, just trapped inside her body as it shuts down.

We know we don’t have long now, but the most precious time is being able to spend a few minutes each day whispering in her ear, telling her we love her, that we are proud of her, and that she is so incredibly brave. I know she is listening.

Update 3rd January 2013

We are settled in Naomi House, due to the deterioration Amelia is not expected to return home. We are exhausted but finally this evening we seem to have Amelia’s drugs at the right level. She has spent much of the day screaming with discomfort and frustration and there is only so much of that we can take.

Update 29th December 2012

Amelia is sadly losing control of her body and this has been causing a number of problems, and we had to urgently get her seen to at the hospital earlier. Fortunately, after a lot of effort, these problems are now under control. Amelia is calm, relaxed and I got a big ‘thumbs up’ from her again when I asked if she was OK. She was very tired and very spaced out, but OK.

Tomorrow morning we will go back into the hospice, how long for is largely depends on how Amelia does. It might just be for a few days and we then come home, or she might not come home at all. We just don’t know. She has definitely been getting worse over the last few days but it just depends if we can stabilise her again.

Update 26th December 2012

Christmas day went pretty well, we really tried our hardest to pace out the day so that Amelia didn’t get overwhelmed by everything. She gets easily upset and frustrated if too much is going on – but she did last the day pretty well. We had several relatives here to help and were able to relax a little during the day which was great.

By late afternoon we really noticed Amelia deteriorating, to the point where we were getting seriously concerned. We had stopped her steroid dose the day before and we were worried this was having a negative effect – so decided to give her a dose before bed and then repeat in the morning.

By late evening she was unresponsive, confused, gargling a lot and generally pretty bad. We got through the night, but by the morning she was really struggling going to the toilet so we ended up spending the morning in hospital (again!) and eventually got her to go after a lot of effort!

Sadly she does seem to have deteriorated somewhat, but we have increased the steroids again in an attempt to suppress this as much as possible. It is clear the tumour is getting to a critical point so we are just managing it as best as we can. Amelia has again become very aggressive and angry, we are unable to understand what she is trying to say most of the time, and she just gets angry when we keep asking her to repeat herself.

Update 23rd December 2012

Amelia has been pretty good – in fact probably better than we thought she would be at this point. It seems all the drugs she is on have done their job and she is comfortable, and we still get the pockets of time when she is chatty and responsive. She is definitely tired a lot of the time and this might explain why she is unresponsive at those times.

One of the really big difficulties of living with this is trying to establish what is the drugs causing a ‘temporary’ lapse in symptoms, and what are the symptoms showing themselves. It is a bit of hit and miss with this – sometimes we see things that are gone again after a short while, and some things have stayed, like the paralysis.

Amelia’s left hand side seems a lot better at the moment. She is using her hand to open presents and hold a straw, point to things and generally anything that doesn’t involve lifting things. It isn’t particularly shaky and we can only assume the steroids she has been on have worked. We actually stopped the steroid dose entirely today, so will be keeping a close eye on her.

Organising Christmas has been a tricky affair. We’ve got lots of help from family which has been brilliant, but everyone has been so nice and we just haven’t had the time or energy to do the normal card writing, present sending or all the other things you do at this time of year. Our lounge is full of literally hundreds of cards – many from people we have never met – and these have all made Amelia’s face light up each time one is opened. A big thank you goes out to everyone who sent us a card or letter via Post Pals. People truly can be so, so kind. One of them was a letter from a fairy, others had photos of Amelia or messages of support. We really do seem to have touched so many. Thank you, from the bottom of our hearts. You people are all amazing.

Update 18th December 2012

Thank you for arranging the post and the balloons (and maltesers!), Amelia and Charlotte have loved opening it all. We are going to be back home tomorrow afternoon for Christmas as they feel Amelia has stabilised. It is common with these type of tumours to have a rapid decline and then the child stabilises for a little while before the tumour grows again. We hope to have Christmas at home and then return to the hospice when needed.

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Tyanna P

14 December 2012

Story written 2012

Tyanna was born 3 weeks early by emergency C/Section. She seemed well at birth with no apparent problems. Everything was fine until she was about 3 weeks old when she started to bring her milk back. We were told that it was reflux. She would then scream for hours each day with terrible colic and it was a difficult time for me as I was working nights and wouldn’t get any sleep.

When it came time to ween Tyanna, she couldn’t swallow the food and would gag and vomit it back out. The health visitor and GP were useless at the time and told us to persevere, which was so hard when she was losing weight.

When Tyanna was around the age of 5-6 months my own health started to deteriorate and I was taken into hospital where a huge tumour was found. I was transfered to The Royal Marsden in London where they diagnosed me with Neurofibromatosis 1. On researching it back home things fitted into place – problems that I had as a child and problems with Tyanna’s siblings. Through genetic counseling, Courtenay and Chelsea were diagnosed, and Cameron was inconclusive. At this time they decided that Tyanna was too young to diagnose, though in my heart I knew she had it. She had some of the characteristics of it, such as a larger head and cafe-au-lait birth marks. She was also not reaching mile stones such as rolling over or crawling.

I would take her back and forth to my Health Visitor but they just wouldn’t take on my concerns even though there was a family history and visual marks.

Finally, when Tyanna reached the age of 14 months and couldn’t sit unaided or bare any weight on her legs, and would only drink milk and not eat anything, they referred me to a pediatrician as an urgent case. Within weeks she saw the pediatrician and in less than 5 minutes Tyanna was diagnosed with NF1. I felt as if the weight of the world fell off my shoulders. She was then transferred to a developmental nursery 3 days a week. At this nursery she received help with speech and language, physiotherapy, play therapy, help with feeding and occupational therapy.

The nursery was a lifeline and Tyanna came on leaps and bounds. At the time she was also diagnosed as quite badly anemic (believe it or not too much milk can cause this). As milk was all she would take we’d give her loads thinking we were helping her. We were also told that she had pica and not that you’d ever believe it, but now selective mutism. The biggest thing apart from NF was developmental delay.

Tyanna loved it at this nursery and even went on 2 holidays to Disney Land Paris with other children with special needs. We were going stir crazy after she made us go on the small world ride 12 times on the trot – even now i can’t get that song out of my head!

Tyanna did well from the physio and managed to sit unaided at around 18 months, but baring weight on her legs was still a problem so she had to wear canvas braces called gaiters for a few hours a day. This would stop her legs from bending and strengthen them up. It was one of the proudest moments of our lives when she walked 2 months after her 2nd birthday and after that there was no stopping her.

Tyanna started to school with a 1-1 school support worker, she was still in nappies full time and way behind the other children. She thrived in school and stopped wearing nappies in the day at 4 and half and in the night at 5 and a half.

Tyanna is now 9 but still around 2 years or so behind her peers, she no longer has one to one support and is in main stream school. She is such a funny little girl who says she’s a dude. She is also so sociable and a lot of you may have met her when she attended the Post Pals parties with her sister Courtenay P.

Lately though, Tyanna has been going through a really tough time, she has tumours growing under her ribs that cause her a lot of pain. She is also suffering form horrific migraines where she has occasionally been hitting out at her head as they’ve been so bad. She also has to sleep with her head under the pillow as she can’t even bare the slightest light. I took her to see Santa a few days ago and instead of toys she asked him to make her headaches go – if only it was that easy.

The pain Tyanna has been in seems to be changing her personality, she seems to be changing before our eyes and becoming aggressive and hitting other children. This is nothing like Tyanna – she’s usually so lovable, funny and caring.

Tyanna is due to go to London to see a NF specialist on December 13th and hopefully then we can get some answers and get her scanned. The clinic is in Guy’s which is a 9 hour round trip for us. I also go to this clinic but see a different doctor and it’s really good there. It’s one of the top NF clinics in the country so I will know she’s in good hands.

Update 1st May 2016

I would like to thank everybody who has taken the time to write to the children over the years it really does make a difference and has helped bring many smiles.

Update 22nd September 2015

Tyanna has been a busy girl. On her last update I said she was going to see One Direction in Cardiff… She went on both nights and cried on both occasions! She is very disappointed that they are taking a break from singing for a few months. She bought the tour t-shirt and wears it all the time.

In Bulgaria she stayed in the pool constantly, from the time she got up until the time we went out. She did some karaoke, all One Direction tracks of course and she sings really well. I think she’s following her sister, Courtenay.

She looked very grown up on her first day back to school and she enjoys school.

The tumours on her ribs have stabilised although they are still painful.

Thank you to everyone who sends cards, letters and gifts.

Update 13th May 2015

Tyanna is doing really well in school and is on both an I.E.P and I.B.P. Sharon has to go to the school tomorrow to do an assessment with Tyanna’s head of year.

Tyanna has a busy time in in June as it’s her birthday, the Post Pals party, and then she’s going to see One Direction at the millennium stadium in Cardiff twice. Sharon and I bought Tyanna a set of tickets for Christmas and then a couple of months later she won another set for the Friday night. Tyanna is One Direction mad, she collects everything from sweet wrappers to pieces of paper with the name One Direcrion on it.

Tyanna went to the hospital in London and her tumors have stabilised which is good news.

We are going to Bulgaria in July and we are looking forward to it. Then in October the kids are going to a neurofibromatosis camp at Marchants Hill PGL camp. The children will have the opportunity to mix and do activities with kids with the same condition.

Thank you to everyone for the children’s post.

Update 2nd August 2014

Tyanna’s tumours haven’t caused any more trouble (apart from the pain she has as they’re on the nerves so it really hurts if she’s accidentally knocked). She’s also sleeping a little better, but as with a lot of children with ADHD, she still has sleepless nights. We’ve also been told she’s on the autistic spectrum but we need the final appointment with the specialist before it can be made official. She has a lot of the characteristics and obsessions – her latest one is One Direction. Understandably, a lot of kids love 1D, but it’s not a normal kind of fan obsession, it’s the hours of researching and taking about them etc. I’m yet to take her to a concert as when they were in London last time I was a little afraid to travel alone and the train costs, hotel cost, ticket prices, were too expensive. I’m definitely taking her next tour though.

This school year was the last year in primary for Tyanna and she was devastated to hear that she won’t be in the same classes as her friends that she’s been all the way through school with. She’s being placed in the special needs department. She broke her heart over this because her best friend always stood up for Tyanna when she was bullied and had her back. She hates change as it is, but going to a totally new school is scary enough, but without people she doesn’t know it is even worse. Everyone apart from one boy will be strangers. On the good side, there’s only 12 people in the class with a teacher and 2-3 assistants, so she’ll be getting extra help.

It’s been a tough year as she’s been stopped from doing everything she loved due to her NF, such as rugby and boxing and she doesn’t understand why. Sports such as ballet and dance would never appeal to her as she’s a tomboy at heart.

She had a lovely time on holidays and made a friend within 5 minutes of being in the pool who she spent the whole holiday with.

Thank you to everyone who has posted to Tyanna, it really means a lot. All the children love their post, but Tyanna the most. She always runs to the door when she hears the postman.

Update 10th March 2014

Firstly, I’d like to thank everyone for sending cards, letters and parcels, to Tyanna, Cameron and also Courtenay.

Tyanna is growing up fast. She’s coming along brilliantly in school although she’s still on her IEP. Her teacher is a SENCO so that helps. Tyanna doesn’t like teaching assistants.

Tyanna has to attend the hospital in london on Thursday just for a check up. We will tell you of any news regarding the hospital in due time.

In April, Tyanna, and Courtenay are attending a week long PGL camp with me as one of the helpers. There’s a lot to organise and we are all looking forward to it. We will be abseiling etc.

We hope everyone is ok and keep smiling.

Update 20th November 2013

Tyanna had her results today. On the good side, the brain ones were normal, thank goodness. The tumours under her ribs have grown a little but are of no major concern apart from the horrible pain she has as they’re not interfering with any organs. What I didn’t know about was that there are clusters of tumours going down her back that explains the back pain she’d complained about. They’re not interfering with any major nerves, only minor ones, which is good news.

On the really upsetting side though they told me last week that she isn’t allowed to play rugby anymore which really upset her as she’s restricted enough already and it was something she really took to. The team has been good though and given her the job of being the raffle ticket seller on home games.

Also, thank you to everyone who has written and posted cards etc. As soon as Tyanna comes in from school she runs to the desk to see if she has a letter.

Update 15th August 2013

Tyanna has had a difficult few months. Her headaches and migraines are still there and slowly becoming worse. Her mood swings are also becoming worse. Her behaviour has declined badly in school and we think there is a pattern to it. It seems to become a lot worse the day after a particularly bad migraine or headache. She’s complaining more about back pain and pain from the tumours under her ribs.

We have had a hell of a lot of trouble trying to get her scans that her doctor in London marked down as urgent. They were turned down for funding by the trust in London because she’s Welsh and turned down for funding by the Welsh trust because of the scans having to be in London. We felt that we were banging our heads against a brick wall and had nowhere to turn to. It wasn’t Tyanna’s fault that she goes to London in the first place because there isn’t a NF specialist in Wales that she could see. I insisted on an appeal which at first was turned down. I looked into going private but was told that they don’t deal with private patients of Tyanna’s age. That made me want to scream in frustration. My next step was going to go to my MP and the press and media due to my disgust of her treatment. Just before this I had appealed again and last week to my delight I found out that it was successful and the funding was there for Tyanna. It’s a massive weight off my shoulders, we just have to wait for a date.

She recently had an appointment with her paediatrician here in Wales. The paediatrician noticed that the tumours under Tyanna’s ribs looked bigger. She also thinks that Tyanna may be on the autistic spectrum along with her Global Developmental Delay and ADHD. We just have to wait for appointments with the specialists on these fields.

Tyanna had a lovely time at the Post Pals party and made some lovely new friends and was so pleased to see her old ones, especially Dan G.

Tyanna also loved the holiday in Clacton and behaved beautifully the whole time. She also learned a new trick that made me want to die of embarrassment! She found out that if she cried by the grabbing machines in the arcades people took pity on her and gave her the toys that they had won. I didn’t leave her out of my sight after that one! She was also thrilled to meet Peter Andre’s brother and asked him to tell Peter that she loved him!

A massive thank you to everyone that have sent post to the children. It brightens their day and we really appreciate it.

Update 9th May 2013

Tyanna has had a few problems since her last update. She has had a couple of hospital appointments in London. Due to a large area on her back covered by a cafe-au-lait, it was recommended by her paeditrician that there was the possibility of scoliosis but this was out ruled by an MRI scan. We have been told there is a small tumour there but at the moment it isn’t causing any problems, and needs to be kept an eye on. She needs another scan under GA at a later date.

For the last couple of months, due to Dr Ross Ferna’s instructions, has been put on tablets to help her sleep because of her hyperactivity. We are waiting at present for an educational psychologist to attend her school, because it is under the belief by her doctor in London that Tyanna has ADHD and this is associated with her condition NF1. Tyanna has also been prescribed migraine medication when needed. Due to the migraine headaches Tyanna gets very frustrated and irritable, and at times has tantrums which we are trying to manage, my wife better than me. Sometimes I have to pick her up from school.

Tyanna has been praised by her teachers recently because of her brilliant imagination at story telling and we have had brilliant news on her IEP (individual Education Plan) where her reading, writing and mathematics are concerned.

I’d like to thank everyone for your kindness with the gifts and cards that you send Tyanna, it is very kind of you.

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