Neurofibromatosis | Post Pals

Story written 2018

Before Evia’s second birthday we noticed she had started to lose her sight. We were back and forth to the hospital where Evia had numerous tests and scans. Evia was transferred to another hospital where they fitted her with a port and started to administer IV chemo. After 18 months of chemo which made Evia sick and lose her hair, she then had 9 months off. They removed her port but at her next scan they had to put the port back in and re-started chemo, which she now has weekly.

Evia had a second round of chemo which lasted for a year. She finished this at the end of January. Evia now has to have regular scans and at the moment she still has her port. Evia has NF1 which caused her to go blind but she refuses to let this stop her.

Update 8th November 2025

I would like to start by saying we appreciate every letter or gift we receive.

Evia is now in Year 8 at a school around 30 minutes away from where we live. She enjoys it and has made loads of new friends at school, but she struggles a bit outside of school as they all live too far away from us. She loves keeping in touch with them on her phone, though.

She is learning mobility skills with her cane to become more independent, which is a bit scary for her at times, but she’s smashing it and learning lots of new routes.

Her favourite thing to do at the moment is make me and her dad a cup of tea using her one-cup kettle.

She is still having regular MRI scans to make sure everything is going well. She’ll have another one before or just after Christmas. She tried her last one while awake but didn’t like it, it’s a long time for her to keep still (about an hour and a half), so she’ll be going back to being put to sleep for the scan. She also has regular hospital check-ups and blood tests.

Elliott has recently got into watching football with his dad, so they spend a lot of time at Doncaster Rovers. He also plays football on Saturday mornings.

He is currently a primary ambassador for the Junior Civic Mayor of Doncaster and is really enjoying the role.

Elliott is in Year 6 and will soon be moving up to secondary school, which will be a big next step for him.

He loves being out on his bike with his friends.

Update 15th October 2024

Evia has started secondary in September she seems to have settled in really well and made lots of new friends. She has a MRI scan coming up at the end of this month.

Evia loves horses, Harry potter, pens notebook’s, baking, Tonies.

Elliott is interested in Pokemon, pens notebook’s, crafts Roblox,

Update 28th February 2024

We would like to thank everybody for all our post recently all is very much appreciated.

Evia’s last MRI scan before Christmas came back all clear so all good news.

She is excited and nervous about starting secondary school this year. Am sure this will bring Evia lots of challenges but am sure she is up for the challenge and it will probably scare mum and dad more!

She has recently finished her first job role of being the Junior Civic Mayor of Doncaster where she got to go to lots of events including, her favourite, meeting our new King and Queen and being able to do a speech for them.

Evia interests are: she loves James Arthur, and she does like any kind of music, Harry Potter, Squishmallow toys, Tonie figures and fidgets. She loves anything girlie especially nail vanish and body sprays.

Elliott update.

Elliott is doing great. He loves playing football at weekend. Has just learned to ride his bike so he is loving the freedom of bike rides. Enjoys helping with his dog, Kenny, who is a pug.

Elliott interests are Pokémon, crafts like Diamond art, likes collecting stamps, fidgets, Squishmallows. He loves meerkats, penguins and The Grinch

Once again, thank you all so much for everything you do.

Update 4th October 2022

We would like to thank everyone for the post we have received.

Thank you to everyone that shared the social media post about Evia’s wish to meet James Arthur. She loved meeting him and listening to his concert, she has since been to another one of his concerts.

Evia has an MRI scan booked for October. This is the first time she is going to try it being awake, we don’t know how she will manage to keep still as she is a wiggler and likes to talk. She is going to listen to her favourite singers. Hopefully she will manage it, if not they can rebook it.

Evia and Elliott have both settled back into school well.

Update March 2022

Evia would like to say thank for her recent post especially her birthday cards we keep them all in a box and she goes through them every day.

Evia has been very well, at the minute everything is stable she will have another MRI scan later in the year to see how things are going.

She has recently started at Cubs which she loves, she went on her first ever sleepover away from Mum and Dad at camp. Her brother was there so am sure they both looked after each other.

Update 21st June 2021

All stable at the minute, no changes.

Update 8th April 2021

Evia would like to say thank you for all her birthday cards and gifts, she really enjoys the letters and listening to what people have been doing.

They both really enjoyed the Easter Zoom party.

Update 8th February 2021

We would like the thank everyone for both Evia and Elliott’s Christmas gifts and cards, they’ve loved every single one, putting each Christmas card up in their bedroom.

Healthwise Evia is doing well, stable at the minute.

Update 12th July 2020

Nothing much has really changed health wise we are still waiting for Evia’s next MRI date to come through. Due to the virus it has been delayed, she was due in February time, so hopefully it will be soon. We did manage to move house around 3 weeks ago, which is loads better, as we now have a bigger garden, which has helped loads.

Update 22nd April 2020

Evia and Elliott would like to thank everyone for their letters and gifts they have received. Evia has kept all her birthday cards she going to put them up in her bedroom when we move as lots of them are tactile. We were due to move house before the lockdown started which has been put on hold for now.

Evia health wise she has now had her port took out which am so pleased happened before all this virus started. She was due a MRI scan in February, we are waiting for an appointment hopefully be soon. She is getting really good at her braille and now she teaches me.

Update 9th September 2019

Evia and Elliott would like to thank everyone for the cards and parcels they have been receiving. They really enjoyed the post pals party, it was great to meet some other post pals families and everyone involved with post pals.

Evia has just started year 2 and is settling in well. She has recently had a MRI scan which showed everything had stayed the same, which is good news. We are currently waiting for an appointment to remove her port which will hopefully be soon, she will then have a MRI every 6 months unless something changes or we are worried.

Evia’s brother Elliott has just started reception, we have had a few tears at drop off, but I am sure it won’t last long, he enjoys it once he goes in.

Update 16th June 2019

We would like to say thank you for both Evia and Elliott’s monthly parcels and their fortnightly letters and everyone else who sends post.

Evia had one hospital trip this month for her ears. We were getting them checked and they needed cleaning out but she became a little anxious and wouldn’t keep still, so we had to have a trip to theatre to go to sleep so they could be cleaned. They had a good look at the left ear that was causing her problems but they said it all looked ok. So hopefully at her next scan which is in July, all should be clear and if the tumour has stayed stable we should be hopefully getting her port out soon.

Thank you once again, hopefully see lots of you at the party.

Update 28th March 2019

Evia and Elliott would like to thank everyone for their cards and gifts they have been sent. Evia received loads of cards for her birthday which she loved, she still plays with them now asking me who they are from.

Evia has recently just had a MRI scan, at which they said the optic gilomar has stayed the same as last time, which is good news. They did find something on her left ear which is new, they are not too concerned about it at the minute, but want to re-scan her in 3 months. Then she may have to have a operation on it, so they have decided to keep her port in for a while longer, we were hoping it would come out this time.

Update 28th January 2019

All of us would like to thank you for all the Christmas cards and gifts we have received. We have had lots of fun opening them all.

Evia is doing well at the minute. She had another ear test which they said has improved since last time. She has a MRI scan due in March – hopefully all will be ok and we can then talk about having her port removed soon.

Update 18th September 2018

Evia would like to thank everyone that has sent her letters and gifts, she loves feeling them all and listening to us read them to her. We will keep them all in her craft book. She can now remember what some of the letters and cards say and who they are from.

She recently had a MRI scan which was good news, they said her tumour is stable but they are keeping her port in at the minute just in case, as they took it out too early last time and she needed it put back in.

We have since learned that the tumour has damaged the nerve which tells her when she is full and this explains her obsession with food. She has just got a trike so we are hoping this will help with the exercise.

She recently had her ears tested they are concerned with her left ear, so may need grommets or a hearing aid in the future.

Please don’t send confetti/glitter, cuddly toys or sweets

Story written 2017

Tayen was diagnosed at 22 months old after a prolonged seizure at home. She has bilateral optic pathway gliomas (tumours) that have spread through her brain to the back. She started chemo straight away and although it saved her life she lost all her vision just six weeks into treatment. First line chemo lasted 18 months and we then enjoyed 18 months off, however it was plagued with lots of seizure activity and the discovery of hydrocephalus last September. Tayen rapidly went downhill and had bilateral shunts inserted in October. Tayen also had new tumour growth which meant she needed to have more chemo.

Update 30th October 2025

Tayen continues to globally decline but that doesn’t stop her smiling! She has many tests and procedures outstanding.

Update 11th October 2024

Tayen is currently trying to get over chicken pox, sepsis and a double ear infection. This has been a very difficult time for her and her great nan has also recently passed away so she is coming to terms with this as well. She is waiting for scans and tests to check the blood flow to her brain too.

Tayen is no longer interested in mermaids and flamingoes. Clothes and pyjamas woman’s size medium/large. She likes perfume and is currently trying to grow her hair, she has ears are pierced but prefers flat back/labret style earrings.

Loves smelly pens and making activities that aren’t fiddly or small.

Update 3rd February 2024

Tayen likes art supplies to make pictures, especially foam sticky shapes, but NO glitter or confetti please. Clothes (woman’s medium) and pyjamas! Tayen likes chocolate (not sweets please). Loves her Yoto audio player and listening to music. Tayen loves baking, swimming and water play. Anything pink, and jokes! No cuddly toys also please.

Tayen continues to slowly decline. Her memory is very poor since her last seizure. We are looking forward to a trip to Disneyland this year as a whole family.

Update 31st March 2022

Tayen has had a tricky start to the year suffering numerous infections, Covid and further decline caused by her brain tumours.

Update 29th October 2021

New tumour found in June 2021, biopsy in July and major surgery in September. Unfortunately they couldn’t get it all out so it’ll likely regrow. The original extensive tumour remains stable for now.

She’s declined but holding steady at the moment. She’s still unstable on her feet and unable to read Braille anymore.

Update 30th June 2021

The MRI results are in and have been discussed at Bristol Children’s Hospital in their MDT meeting. Tayen has a brand new tumour. It’s already been a very long week and we have many, many questions that need answering but Tayen needs some tests done first before we can formulate a plan and move forward. The new invader wasn’t seen on Tayen’s last scan in April but it’s already around 1cm in size and very clearly visible now. This may not seem large but with Boris ( the original tumour ) already being extensive throughout her brain, this is not good news. Her team have requested an urgent biopsy so they can determine what it is and how it can be treated. An urgent referral has also gone out to get a sleep induced EEG done as there’s a chance Tayen may be having silent seizures when she sleeps. As I’ve said, we have many questions and having to take a step back to get the results necessary to move forward is very difficult. It’s going to be a tough few weeks for our family and given Tayen’s already existing complexities, we are going to have to pull out all of the stops to make this manageable for her. One step at a time.

Update 14th June 2021

Tayen seems to be declining again with no answers as to why.

Update 12th February 2021

Tay’s health has declined. We are waiting for her next MRI to determine next steps. She’s awaiting assessments for Autism.

Update 20th August 2020

Tayen is currently on a chemo break but she will need more. Life is difficult as Tayen struggles to cope with severe pain and routine changes. It can be very difficult to occupy her. At the moment we’re uncertain if she’ll be returning to school. She currently has lots of appointments due to her varying, complex needs.

Update 9th February 2019

Tayen spent a week in hospital undergoing lots of tests. She has damage from all the chemo she’s had. Things are tough.

Update 1st November 2018

Tayen is currently finding things really difficult.

Update 19th July 2018

Tayen is now receiving hormone injections. She has Hypothalamic Damage which is also causing a lot of problems

Update 26th February 2018

Tayen is as complicated as ever. She suffered very severe bouts of body pain that require Oramorph and also her seizures aren’t great. Her mobility is also poor now and she spends a lot of time in her wheelchairs buggy when we are out and about.

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.

Story written 2005

Kirsty was diagnosed with Neurofibromatosis when she was just eleven weeks old, but was not diagnosed with Scoliosis until she was 8 years old. Scans of the spine showed that Kirsty had a number of tumours on and in the spine itself at the lumbar junction extending well into the sacrum. In March 2000 Kirsty’s spine had curved a further 9 degrees. Doctors decided it was time to try a Boston brace, which she had to wear 23 hours a day. The brace is made out of a very hard plastic, which goes from the top of the chest to below the hips. Doctors told her it would take her 8-10 weeks to get used to wearing the brace for 23 hours but within 3 days she was doing just that – wearing it 23 hours a day. The doctors were really pleased with her.

Kirsty has now been in a brace for 6 years. One of the tumours has started to grow and she has been in a lot of pain. After getting a second opinion doctors decided it was too dangerous to touch any of the tumours and that the risk of paralysis was too high.

Kirsty decided to build a web page to help others which is www.kirstysstory.co.uk. She is always thinking of others.

She will be going into hospital on the 10th of March 05 for a big op’ on her spine. Kirsty had 3 tumours removed last year, there is no way of stopping the tumours from coming or growing and there is no cure for the Neurofibromatosis (NF).

Update 1st March 2011

I am going to start with the good news this month.

Kirsty’s book is now live and selling well, she did a radio interview last Monday and a couple of papers have covered her story about the book. The royalties from the sale of the book are going to charity and although the book can be bought both in the shops and on line, it is much cheaper to buy it from Kirsty or the publisher. Plus Kirsty can sign copies for people who buy it from her. All you need to do if you want a copy of Kirsty’s book is go to her front page at www.kirstysstory.co.uk and click on the buy now button. Three of her doctors have written in the book along with many other people who are involved in Kirsty’s care. Kirsty also gives Post Pals a big mention in her book.

Kirsty’s sickness got really bad again this month and Kirsty ended up back in hospital for a couple of days having to have IV fluids and anti sickness injections. The hypnotherapy is not helping with the sickness.

Kirsty saw the doctor over the operation on her knees this week and after having more x-rays he thinks she may be starting with arthritis in the joints too. He is sending her for another MRI scan so he can see if any of the tumours have grown before they do the surgery. He did not mention anything about the MRSA bug that they keep saying she has.

Kirsty also received a letter to say her spinal doctor wants her to have a full spinal scan done so he can see how the tumours on her spine are progressing.

Let’s finish on some more good news. Kirsty is going to London later this month as she is in the finals for the VInspired award. I will let you know how she gets on.

Thank you for taking the time to think of Kirsty and write to her. Kirsty received a lovely teddy and a package full of gifts this month, which really put a smile on her face as she was having a bad month with her illness.

Update 12th February 2011

Kirsty has asked me to thank you all for your kind words over her book.

She is not so well at the moment with the sickness and a lot of pain in her back. We are not sure if any of the tumours have grown on the spine.

Kirsty see’s her NF doctor on Tuesday who is also bringing another doctor along to see Kirsty.

Kirsty’s book can now be bought from her web page www.kirstysstory.co.uk and Kirsty said she will sign copies for people who buy from her web site, but can’t sign the ones bought from the publisher. Every copy sold will grant wishes for other poorly children. Post Pals is mentioned as they have helped her so much over the years. I think Kirsty must be one of the longest members of Post Pals now.

Update 11th February 2011

I have some great news; Kirsty’s book is now on sale, “Kirsty’s story” living with Neurofibromatosis and scoliosis. Kirsty is hoping to raise lots of money for charity by the profits from her book at the same time as helping other people who suffer from these cruel conditions. You can buy the book at the following link
https://www.authorhouse.co.uk/Bookstore/BookDetail.aspx?BookId=SKU-000408684

Kirsty is still having a bad time with the sickness and the pain in her back. She sees the doctor who is doing surgery on both her knees so he can explain the implications involved in doing surgery while she has the MRSA bug.

She is still in a lot of pain and is having a fitting for her new back brace this week.

Post Pals is mentioned a lot in Kirsty’s book, as you will read if you buy a copy.

Update 30th January 2011

There is no real change in Kirsty this month. The operation on her knees has been put back yet again as she failed the pre op check again and they are saying she has still got MRSA. The last time I spoke with the lab they said the swab that they do up Kirsty’s nose is the one that keeps coming back positive and that she may never get rid of it. The lab are talking with the doctor next week to see if he will do surgery while she still has the MRSA bug.

The sickness was really bad at the beginning of the month and Kirsty ended up at A&E. They gave her some IV fluid and an injection to stop the sickness.

Kirsty saw her gastro’ doctor last week who decided to put Kirsty on a tablet called Colofac. Colofac is used for IBS, but because Kirsty’s tummy keeps swelling up, the doctor wants to see if these tablets will stop the swelling of her tummy. If you go on Kirsty’s web page (www.kirstysstory.co.uk) you can see how bad her tummy keeps swelling (just click on the 2010 link). The doctor wants to see Kirsty again in six weeks.

News on Kirsty’s book is that the book goes live within the next ten days and Kirsty is really excited about this. I will post details so people can buy the book as soon as we have the information. All money raised from the sale of the book will go to charity.

Staff at the university that Kirsty attended put Kirsty forward for the Vinspired award and we have just had news that not only is she a regional winner, but she is now a national award winner and is off to London in March to see if she is to be named the overall winner for the inspirit award.

Thank you to the people who took the time to write to Kirsty this month, Kirsty loves getting your mail.

Update 23rd November 2010

There is no real change in Kirsty this month. The operation on her knees has been put back yet again as she failed the pre op check again and they are saying she has still got MRSA and cannot do surgery on her while she has this bug.

The sickness was really bad this month and we had to take Kirsty into hospital. She was given an anti-sickness injection and put on iv fluid before being allowed home later in the evening.

Kirsty is now going to try hypnotherapy for the sickness. She had her first one yesterday and it’s still early days, but she was really very sick last night.

Work has started on her book this week and she is keeping fingers crossed that it is on sale in time for Christmas.

Her charity spookathon went really well and Craig Gazey who plays Graham in Coronation Street came along and supported Kirsty at the event.

Kirsty has been invited to the Lord Mayors dinner on Thursday for all the fund raising that she does. She went about two years ago to the Lord Mayors Christmas dinner when she won an award and he has now been invited back due to her continued work to help others.

Kirsty said she does not want to take anymore tablets as they are not doing anything to help with sickness or the pain, which I can understand.

I hope you all have a great Christmas and a big thank you to the Post Pals team for all your hard work over the past twelve months.

Update 2nd November 2010

Kirsty’s operation to remove five tumours went well, apart from two of the tumours that gave the surgeon some difficulty, as he did not know until he had started to operate on them that the tumours had also grown deep into the muscle and were much larger than first thought.

Kirsty’s next operation is on the 22^nd November but we have just received a call to say that she is still carrying the MRSA bug, which I can’t understand as Kirsty had two MRSA swabs done at different hospitals within 12 hours of each other, and one came back clear the other came back saying she still had the MRSA. So I have got to ring the hospital tomorrow to find out what happens next. This operation has been put back so many times now due to this MRSA.

The sickness is still very much the same but I’m pleased to say it has not got any worse after her recent surgery.

Work starts on her book on the 17^th November and we are still looking for it to be out in time for Christmas.

Kirsty’s got her charity spookathon this Saturday and will be staying in a haunted place over night. Many of her ambulance drivers and other people involved in her medical care are doing the event with her, along with some star guests and the Manchester paranormal team. Anyone wanting to support Kirsty on this event can do so by visiting her just giving link on her web page.

Kirsty’s University put her forward for an award and we have just found out that she’s won for the North West and will now go into the finals to see if she will be named the overall winner.

Thank you for thinking of Kirsty and for writing. She received a set of DVD’s from Mari and 2 games from Post Pals too. Thank you so much to both of you.

Update 24th October 2010

Kirsty is home from hospital. They managed to remove five tumours – the ones in her leg and arm had gone deep into the muscles. She is in some discomfort and has been told to rest.

Sending love and hugs to all.

Update 22nd October 2010

Just to say a big thank you to Miriam for the DVD’s that she very kindly sent to Kirsty.

Kirsty is in hospital and will be having surgery Saturday morning to have five tumours removed that have started to grow and are giving her a lot of pain. I will keep you informed on how things go.

Update 6th October 2010

There is no real news as there isn’t any change in Kirsty’s condition.

We had a lovely holiday in Florida, apart from Kirsty’s sickness, which she coped with very well. On the flight home Kirsty was taken poorly, the flight crew had to ask if anyone on board the flight had any medical knowledge. The pilot was going to divert to a different airport but a lady came forward to see to Kirsty. She was unsure if Kirsty had developed a blood clot on her lung and asked the crew if they had any aspirin that she could take to thin her blood out. I was very unsure about Kirsty taking aspirin as she is not meant to take it due to her tummy problem, but this lady said it better for her to the aspirin than not to take it. Kirsty was also put on oxygen for the remainder of the flight home. When we arrived at the airport a paramedic boarded the flight to see to Kirsty before anyone was allowed to get off. He did some blood tests and said her blood sugar was very low and after doing some more tests he arranged for an ambulance to take Kirsty to hospital. The ambulance came right up to the plane and carried Kirsty off. John, Kirsty’s dad, had to go and get the bags and met us at the hospital later. I am pleased to say Kirsty is ok now, it was just very worrying at the time.

Kirsty is going into hospital in the next two weeks to have five tumours removed and then on the 22^nd November she is going into hospital for surgery on both her knees. She will be out of action for a good 8 to 12 weeks after the surgery so if anyone has any good DVD’s they can lend her to watch that would be great.

Thank you for all Kirsty’s post, it is really appreciated.

Update 30th August 2010

There’s no real change in Kirsty’s condition, she still continues to be sick most days, which gets her down at times as she cannot go out for a meal with her friends.

We saw Kirsty’s gastro’ doctor this week who confirmed that the last two allergy breath test were clear and that she is not allergic to milk. The doctor is still very concerned that Kirsty is still being so sick and told Kirsty that she must go to the A/E department when the sickness gets bad, but Kirsty said that she feels daft turning up at the A/E department just because she is being sick when people are attending with their fingers hanging off. The doctor explained to Kirsty that with her condition it could be very serious if she got too dehydrated and said that she will write a letter to give to Kirsty that she can take along to the A/E department, if it made her feel any better, to say that Kirsty suffers from gastroparesis and that the doctor requested that Kirsty come to A/E and that the named doctor must be informed that Kirsty is in the A/E department.

The new back brace is helping Kirsty with the back pain.

We also saw the NF doctor this week who thinks that Kirsty’s foot drop may have worsened a little. Kirsty did not have any new NF problems but the NF doctor said it was important that she saw Kirsty at least once every six months.

We should have the date for Kirsty’s book going on sale soon, so keep an eye out in the paper for that.

The operation on her knees will be done when we get back from holiday as the doctor has now said that she cannot fly for six weeks after surgery. I will try and keep you posted when her operation is.

Thanks for taking the time to write to Kirsty and for thinking of her. She received a craft set that will keep her very busy when she goes into hospital later this month.

Update 3rd August 2010

No news really. Kirsty still continues to be sick most days and both the tests that she had this month came back clear. We now see the doctor on the 27^th August to find out what happens next.

We have not had the result of her spinal scan yet, but Kirsty has been in a lot of pain with her back. We picked up her new back brace last week, which is helping a little.

We attended the UK fundraiser awards in London as Kirsty was in the final three; she did not win but still had a great time, apart from her having to keep leaving the room as she was being sick.

Kirsty is to see her NF doctor at the end of the month so hopefully she may be able to help with this sickness.

The operation on Kirsty’s knees has now been put back yet again. The doctor said that Kirsty will not be able to fly for six weeks after the surgery and we are going away in September. It looks like the operation will be done when we get back. I will keep you all posted.

Kirsty says; thank you for thinking of me and taking the time to write to me. I received a lovely teddy from a lady called Rose who lives in Co. Down this month. The teddy is about 3 inches tall and holding a mouse. It came with its own little bottle of coke and eaten apple. It really is very sweet and it made me smile when I saw it.

Update 19th July 2010

Just to let you know that Kirsty’s story is in the Weekly News at the moment. You can see a picture of her on the front cover and the date issue is 17th July. You can only buy this issue up to the 22nd July.

Kirsty is doing well but is in hospital for the day on Wednesday having tests for this sickness and again next Tuesday for the day.

Sending love to all the other brave children and a big thank you to everyone who has written to Kirsty over the past few weeks.

Update 4th July 2010

Kirsty is still not having a good time with this continued sickness and has been really poorly this month.

Kirsty is having a hydrogen breath test on the 21st July to investigate whether she has a bacterial overgrowth in her small intestines. Then on the 27th July she goes for a lactose intolerance test. These tests will hopefully help the doctors on which way to help with the sickness.

Kirsty saw the doctor over the tumour in her arm and it was decided that it should be removed along with three other tumours that are growing.

Kirsty’s been in a lot of pain with her back and when she saw the doctor (the one she sees for the pain that she is in) he felt it best if Kirsty has another spinal scan to make sure none of the tumours in her spine have started to grow.

On a good note, Kirsty and I both visited Buckingham Palace last week. The Manchester Evening News arranged for us to travel in a Bentley as it is difficult for Kirsty to travel by train. You can read how Kristy’s day went and see more pictures by going on Kirsty’s web page www.kirstysstory.co.uk. We are back in London on Monday the 5th July as Kirsty is in the final three to be named the UK Fundraiser of the year. I will let you know how Kirsty gets on.

Kirsty says thank you to everyone for the lovely cards that she received this month, which helped me with another very difficult month. I had many letters this month and I have tried to reply to them all. Also, thank you to all who sent me gifts, I have written to the ones who sent their address.

Update 31st May 2010

Kirsty is still not having a good time with this continued sickness and has been really poorly this month. We have not got the date for the gastric emptying study to be done yet, but hope to have the date soon.

We have got the date for Kirsty to see the doctor for the tumour in her arm, which is giving her a lot of pain at the moment.

Unfortunately, Kirsty’s operation on her knees has been put back yet again as she failed her pre’ op’ and is still carrying the MRSA bug. They cannot do the op’ until Kirsty is well and free of the MRSA bug.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

On a good note, Kirsty and I have been invited to the Queens Garden Party on the 22^nd June, which we hope Kirsty will be able to attend. I am just having problems getting Kirsty to London at the moment as Kirsty’s dad is working and going by train maybe a bit difficult for Kirsty if she starts to feel unwell. We will just have to see how things go.

Kirsty says: I had so many cards this month I could not possibly name them all, but I would like thank everyone for the lovely cards that I received, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you to everyone who sent me letters and gifts too, I have tried to reply to those who sent their address.

Update 30th April 2010

Kirsty is still not having a good time with this continued sickness. She was at the hospital last Wednesday due to the sickness being so bad and they are now going to do a gastric emptying study. This procedure will be done by the nuclear medicine physician using radioactive chemicals that will measure the speed with which the food empties from Kirsty’s stomach and enters the small intestines. Kirsty also needed some more blood tests doing, which never go down well for Kirsty.

While we were at a family wedding last week, Kirsty took poorly and her tummy swelled up and felt really hard and on the way back to the hostel she started being really sick again. I took a picture of her tummy to show the doctor and he was unsure what was happening. Her tummy went down after a few hours.

Kirsty’s also started having problems with her arm and about three weeks ago she developed a small pea sized tumour under the skin on her arm and now the same tumour has grown and is the size of a conker. It’s not helping that the tumour is in line with the arm hole on her crutches. Kirsty GP had a look at the tumour and said that it needed to be removed and referred Kirsty to the hospital.

Kirsty has also seen the surgeon who is going to do the surgery on her knees. The surgery will be going ahead, but the only way it can be done is by giving Kirsty a general anaesthetic and that she would not be able to have an epidural due to the mess her spine is in.

The pain in her back has been really bad recently and she had to result to wearing her back brace more. I am going to give the spinal doctor a call next week and find out what is happening.

On a good note, Kirsty has been short listed to be named the UK fund raiser of the year and you can read more info about this award on Kirsty’s web page.

It was really nice to see so many new visitors to Post Pals this month; Kirsty received so many emails from people who heard about it on the TV. It was really nice that so many people took the time to visit the Post Pals page and also take the time to write and email the children. Well done to Post Pals, I think we all needed something nice to happen after the month we have had with loosing so many of our brave children in the past few weeks.

Kirsty says: I had so many cards this month and I could not possibly name them all, but I would like thank everyone for their lovely cards which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. I had so many letters this month and I have tried to reply to them all. I received lots of birthday gifts and other gifts too, and again I have tried to write to everyone to say thank you.

Update 7th April 2010

Hi to all my friends. I just want to say a big thank you for all the lovely birthday cards that I have received along with some really lovely gifts. I had been feeling a bit down with this continued sickness and opening all these lovely cards brought a huge smile to my face, as my mum and dad will tell you. Thank you so much for being part of my day.

I hope to have news of when my book is on sale soon and Post Pals is mentioned a lot in it as they have been such a big part of my life too.

With lots of love, Kirsty xx

Update 31st March 2010

Kirsty is still being very sick after having anything to drink and was taken into hospital on Mother’s Day morning as she was really unwell and could keep nothing down. She was given an injection to stop the sickness and was put on a drip to get some much needed fluid back into her. Kirsty is back home now and she is on even more anti sickness tablets, so we will just have to see how things go.

We only saw her grastro doctor a few weeks back, who put Kirsty on another anti sickness tablet that she is to take three times a day. We were not meant to be seeing the gastro doctor until August, but have just received a letter to say that she now wants to see Kirsty in April.

This sickness is really beginning to drain Kirsty now and she is very black under the eyes.

Kirsty sees the doctor over the operation on both her knees this month, so we should be given a date or told what is happening. They are still worried about doing the operation on Kirsty due to this sickness but it needs doing and they want to talk to us both about what happens next.

On a good note, Kirsty’s book should be published and on sale in July. I will let you all know when we have a date. Kirsty’s mentioned Post Pals in her book and how much they have been a big part of her life since she joined in 2005.

Kirsty says; Thank you for the lovely cards that I received this month, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children. Thank you to Sarah, Claire, Becky, Natalie, Wendy, Elizabeth, granny Ruth, Julia, Lisa, Amy and Brooklyn, Maria and Libby. Thank you to Mrs Ball for the lovely letter. My mum received a lovely gift from Elizabeth, which was nice and very kind of her to think of my mum. Elizabeth sent both my mum and me some lavender that she grew in her garden and it smells lovely. I also received some make up and craft sets but I am sorry I could not make the names out to send a thank you card back to them.

This month has been such a bad month for Post Pals as we have lost three very brave children, which was very upsetting for all. I can’t begin to think how their parents must be feeling, all I can do is to let them know we are here for them and always will be.

Update 28th February 2010

Kirsty is still having a difficult time. She is still being very sick after having anything to drink. She saw her gastro’ doctor last week who now wants Kirsty to try another tablet three times a day along side what she is already taking, to see if it will help with the sickness. Kirsty said she is going to try hypnotherapy for the sickness and the doctor said that would be ok, but they want her to have it done at the hospital and not for us to get someone to do it. They are sending her to see the hypnotherapist at the hospital asap. Kirsty said she will try anything now as it is stopping her from doing a lot of things. When we go out she can’t even have a cup of tea or coffee in case she is sick after it. We will just have to see how things go and keep our fingers crossed.

Kirsty is still carrying the MRSA bug so the op’ on her knees cannot take place until she’s had three clear swabs.

Kirsty is having a very difficult time of it at the moment she could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick. I really don’t know how she is coping, if I am sick just once I feel bad, but for Kirsty this is something that happens every day and has done for the past ten months.

A big thank you to everyone who took the time to send gifts this month, I know Kirsty wrote to all who included names and addresses.

Kirsty said “Thank you for the lovely cards that I received this month, which helped me with another very difficult month. It is really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you to: Tracey, Karen, Kate Dee, Sandra, Becky, Claire, Sarah G, Arlen, Vikie. Thank you for the lovely letters – Clare, Elizabeth, Mrs Ball, Sarah. I also received a really nice craft set from Tracey, a poodle from Becky, Card making kit from Claire, Valentine gift from Poppicraft, and craft set from Arlen.”

Update 30th January 2010

This month as been no different from last month and Kirsty is still being very sick after having anything to drink. The doctor at the Warrington hospital contacted Kirsty’s gastro’ doctor to say that Kirsty had been taken into hospital with dehydration due to sickness again and would they please bring her appointment forward. Her appointment was brought forward by four weeks, which means she will now be seen this month instead of March.

Yesterday, Kirsty saw the neuro’ surgeon over the brain scan results and the good news is that there is no pressure on the brain and they will not need to do any surgery. However, she still needs to be seen by another doctor over the other tumours found on the brain scan so the scan can be compared against the one she had previously and to see if it is safe to leave the tumours found on her optic nerve.

Kirsty also went for her pre op’ check this week to make sure she was fit to have the operation on her knees. Unfortunately they found a problem with her breathing and did a trace of her heart, which showed problems. They said her heart rate was only going at 50 bpm and she was sent for an urgent lung function test, which did not come back with good results. They also spoke about the difficulty of giving a general anesthetic due to Kirsty’s gastro’ problem. They cannot give her an epidural due to how her spine is, so the anesthetist said he wants to make an appointment to see Kirsty and chat about the problems involved. They also tried to get a blood sample incase she needs a blood transfusion (can’t see one being needed) but as we know, Kirsty and needles just don’t go, and after having a few attempts they gave up and said they will try again when she next comes. Kirsty was really upset and both her arms were black and blue from where they tried to put the needles in.

Then this week Kirsty received a call to say that she is carrying the MRSA bug and surgery cannot be done until the bug has been killed. This is done by treating Kirsty’s skin every day over the next three weeks and she must have three clear swabs before surgery can be done. They think she picked the bug up when she was last in hospital. The operation on her knees will not be done until March now at the earliest. The pain in her knees is getting worse by the day and both knees keep giving way after only making a few steps. But even with all this going on Kirsty is still smiling.

Thank you for the lovely cards that I received this month from Claire, Joanne, Sophie, Suzannah, Anna, Wendy, Mrs T Welham, Louise Evens, Juno and Muffin. Thank you to Mrs Ball, Kate, Becky, Michelle, Clare, and Sarah, for the lovely letters.

Update 5th January 2010

We have had another difficult month; Kirsty is still being very sick after having anything to drink and unfortunately was unable to eat her Christmas dinner as she was just being sick all the time.

We received a letter from Kirsty’s spinal doctor to tell us what happened at the spinal scan/x-ray meeting in which her results were reviewed. The doctor told us that Kirsty now has a degree of junctional kyphosis at the top of her metalwork and the scan showed predominately dural ectasia. The doctor is going to send for Kirsty to talk to him more about the results and does not really know what to do next. Having surgery is very risky and could cause even more damage.

Kirsty is going ahead with the surgery on her knees and goes for her pre’ op check on the 19th January. They want to do surgery on both knees, which will put Kirsty out of action for about 8 weeks. They are going to try is an arthroscopic ‘lateral release’ whereby through keyhole surgery the tight lateral structures can be cut to allow the kneecap to sit more centrally. Sometimes this procedure is not enough and needs to be combined with a reinforcement or double breasting (reefing) of the weakened medial structures including some of the quadriceps muscles (VMO advancement). They are not confident that it will work due to the tumours in Kirsty’s knees, but want to give it a try before going on to do a more difficult op’ where they will have to put screws in her knees to make them stable.

We also received a letter over the brain scan that Kirsty had and she is to go see the neuro’ surgeon next week when he is back from holiday. This is very worrying as we don’t know what they plan to do over the tumours found at the back of Kirsty’s eyes, along with some others that were found on the scan.

Kirsty was also back and to the hospital with both her ears being infected and inflamed and had to keep having them vac’ out, if things don’t settle down she may have to go in hospital and go on an antibiotic drip for a few days.

On a good note, Kirsty received lots of lovely gifts from people who have read about her on her Post Pals page. One lady (Wendy) saw that Kirsty was on elbow crutches and bought some really cool blue ones. Kirsty loves them and said they are so much more comfy than the ones that she had. Kirsty would like to say a big thank you to all the following people who sent her gifts over the Christmas holiday: Post Pals, Wendy, Mrs Ball, Sue, Zoe, Lucinda, the Hughes family, Alison and to the ones who never gave their name. Kirsty will write and thank all who gave an address over the next week. You all really made her Christmas to know so many people were thinking of her. Kirsty’s had a bad few months and it does not seem to be getting any better for her at the moment.

My wish for Kirsty is to see her book published this year, it’s her dream and she’s worked so hard putting it together to help others that I would love to see her dream come true and something nice to happen for her for a change. Her book tells of her fight against NF, so if anyone knows of any publishers please let me know and help me make her dream come true.

Update 17th December 2009

We just want to wish all the brave children on Post Pals a very merry Christmas and we hope that 2010 is a much better year for you all.

To all the staff a Post Pals, thank you so much for everything you have done for Kirsty over the last four years, you have made such a big difference to her life over the years she’s been a member of Post Pals (I think Kirsty must be one of her first to join Post Pals that is still with you).

Kirsty still loves getting post and it still helps her cope with another day of pain. Kirsty recently won the Princess Diana Gold Award, if you would like to read more about it you can click on the following link here.

Kirsty is still having a bad time of it at the moment and is in and out of hospital with dehydration due to the continued sickness. I also received a call from the doctor, she was not happy with the brain scan results and Kirsty needs to see a neuro’ surgeon in the New Year when he is back from his holidays. We are going to put it behind us for now and try and enjoy Christmas.

Love and hugs to you all.

Update 29th November 2009

We have had another difficult month; Kirsty is still being sick and was so dehydrated last week that she was rushed into hospital and spent four days on a drip to try and get some fluid back into her.

We were keeping fingers crossed that she would be aloud home in time for her to go to London. Kirsty had won the Princess Diana Gold Award and had been invited to 11 Downing Street along with 9 other young people who had also won the award. The 10 young people had been chosen for the gold award out of 27,000 other young people who had all won the Princess Diana award over the past ten years. The gold award was to mark the 10^th Anniversary of the Diana awards. Kirsty won her Diana award back in 2005 and due to her continued charity work she was awarded the gold award.

Kirsty held her spookathon on Friday night where she stayed in a haunted Town Hall over night. Twenty five people involved in Kirsty’s care, nurses, ambulance drivers and physio’s did the event with her. The event was filmed for Channel M and will be on Channel M on Monday. Click the following link to watch the TV interview on the award that Kirsty won and the spook night. The event raised over £1000 with lots of money still to come in. Video here.

The pain in her back is no better and doctors are meant to be having a meeting as when they tried to scan her spine they had problems getting a needle in her arm to inject the contrast dye.Kirsty saw the doctor over her knee problems last week and they have now said to Kirsty that she really needs an operation on both her knees and have given her three weeks to make up her mind.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

Thank you for the lovely cards that I received this month, which helped me with another very difficult month. I replied to the ones who gave their address, it’s really kind of you all to take the time to write to me and the other poorly children on Post Pals. Thank you for the lovely letters from Mrs Ball, Becky and Sue. My mum received a box of chocolates that she shared with the rest of the family and my mum wants me to pass on her thanks for thinking of her too.

Update 23rd November 2009

Great news, Kirsty came out of hospital at weekend.

We are taking Kirsty to London today as she has won a big award (the Princess Dianna 10th Anniversary Gold Award). Kirsty, along with nine others, have all been invited to Downing Street (look out for her on the news).

She is also getting ready for her big spook night on Friday.

Thank you to everyone who has sent Kirsty letters, cards and gifts, you all really do help put a smile on the faces of these very brave children.

Update 18th November 2009

Kirsty was rushed back into hospital this week with dehydration due to her not being able to keep any fluid down. When we went to see her this evening she had been moved to a different ward. She is still on the drip to try and get some fluid back into her and they also think she may be trying to fight some kind of infection due to her having a high temperature. They x-rayed her tummy and they can see a blockage, which they are also trying to clear up.

Kirsty was very upset last night as they tried seven times to try and get a blood test without success.

We are hoping Kirsty is out for Monday as we are meant to be going to London as Kirsty has won an award. This is for how well she copes with her condition and at the same time raising so much money for other poorly children.

Kirsty could do with some TLC as she is not in one of our local hospitals which is making things hard.

Love to all Post Pals.

Update 1st November 2009

We have had another difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

The London trip was not much help really, the doctor Kirsty saw was really nice but we were under the impression that the reason for going to London was to talk about if Kirsty was suitable for treatment in USA, but the doctor had not even seen any of Kirsty’s scans so could not comment on anything. She wanted Kirsty to think about having spinal surgery at one of the London hospitals but Kirsty is happy with the spinal doctor that she see’s here and does not want anyone else to do the spinal surgery. The pain in her spine is really bad at the moment and her pain doctor has doubled her pain medication to see if they can get on top of it for her.

Kirsty is still being sick but it has been a little better, having said that she is not really drinking anything as it’s when she drinks that she is sick. I was sent a link this week from a lady who had read Kirsty’s web page and she told me about an article that she read where this woman kept being sick and doctors put a pacemaker in her stomach and it stopped her from being sick. It is pioneering treatment which involves a special pacemaker being attached to the stomach. The pacemaker is implanted under the skin, with wires going down into the muscle walls of the stomach. When the patient is eating, gastric activity prompts the pacemaker to send a small electrical impulse to the muscles and the gut contracts helping the stomach to move the foodstuff along the gut.

Kirsty was diagnosed with gatroparesis – paralysis of the stomach – which makes the stomach digest food too slowly or not at all. I am going to mention this treatment to Kirsty’s doctor. The operation costs £10,000 but we should be able to have it done on the NHS. It’s early days yet and due to other health problems that Kirsty has she may not be able to have this treatment.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. She says thank you for the lovely cards that were received this month, which helped her with another very difficult month. Thanks to Sarah, Sam, Sarah G, Mrs Ball, Viks and Zoe. Thank you for the lovely letter, Mrs Ball. She also received a paper lantern and is looking forward to lighting the fuse and sending it up to the sky.

Update 29th September 2009

We have had another difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

We have not had any news about the brain scan, which I am looking at as being good news.

Kirsty went for her spine scan last week, she came out of the scan room breaking her heart, I have never seen her so upset for a long while. Apparently the doctor doing the scan said that he needed to inject some contrast dye into her arm – Kirsty told the nurse that I had a tube of the magic cream on me and would they put it on before giving her the injection, so they came and got it from me. Unfortunately, Kirsty’s veins are very poor and tend to collapse every time they go in with a needle. After having five attempts at getting a needle in and each time the same thing happening, Kirsty asked if I could come in the room and hold her hand while they tried again. They refused to come and get me (I was only in the waiting room) saying she would be ok and that they would try in the back of her hand. Kirsty pleaded with them not go in the back of her hand but they did not listen and tried the back of her hand and again the vein just collapsed. All in all they tried eight times to get the needle in without success and her arm is black and blue. They are now going to talk with Kirsty’s spinal doctor and ask if Kirsty really needs a another scan with the contrast dye and if he says he does, then she will have to go on the ward while they try and get a needle in.

We are going to Guy’s in London tomorrow as Kirsty’s NF is so bad internally that her NF doctor over here has asked for a second opinion. There was talk of Kirsty seeing a doctor in the USA as they are doing drug trails to try and shrink the tumours. Kirsty is still being very sick, which I am going to mention to the doctor on Wednesday.

We are going to London by ambulance as it will be more comfortable for Kirsty and she can lie down for the journey.

She fulfilled one of her dreams to attend Uni’ even though the doctors wanted her to take a year out and to get herself well.

Her next dream is to see her book published, which tells of her fight against NF, so if anyone knows of any publishers please let me know.

Update 12th September 2009

We have had a difficult month; Kirsty is still being sick and has been in a lot of pain with her back.

We took Kirsty over to the USA for two weeks and I forgot to pack one of her important tablets for the pain. We tried to get them posted out to us, but due to what type of pain killer it was, the Embassy said we would not be able to get them posted out to us. So, unfortunately Kirsty was in a lot of pain and she also continued to be very sick every time she had anything to drink. I got a little cross with one of the air stewards as when she saw Kirsty being sick she told her to go to the toilet as people were watching. Kirsty was very upset by the remarks. I went and told her that my daughter was very unwell and was not able to jump up every time she was going to be sick. After I had explained she was very sorry for what she had said to Kirsty, she said she did not know and that Kirsty looked so well. She did go and say sorry to Kirsty for what she had said.

Kirsty had to go for a brain scan the day after we got home and goes for a full spine scan next week. She saw the doctor over her knees just before we went away and they wanted to do surgery on both Kirsty’s knees, but Kirsty was not happy for him to do the surgery. I think she is getting so fed up with having surgery and at the moment they are still talking about removing her stomach and doing more surgery on her spine. It is a very difficult time for her at the moment as she as got so much going on and her health is getting no better.

We have now got the date for Kirsty to see the doctor at Guy’s Hospital in London, which is at the end of September. It should have been at the beginning of September but we are away. Our GP is arranging for Kirsty to travel by ambulance so that she can lie down on the journey.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty as you have all been a big part of Kirsty’s life. Thank you for the lovely cards that she received this month, which were hand made and they were beautiful with a lot of work put into making them. Thank you for the letters and thanks to Viks (Post Pals) for the gift.

Update 13th August 2009

I just wanted to say a big thank you for the lovely pillow that I received yesterday. It came just at the right time as I had been at the hospital all morning over the sickness and it was waiting for me when I got in and really cheered me up.

My book is finished now and I have mentioned Post Pals in it and about all the good work you do. I have just got to try and find a publisher to publish it now.

Update 3rd August 2009

We have had a difficult month; Kirsty is still being sick and has been in a lot of pain with her back. I had to move Kirsty in with her gran, as John, her dad, came down with swine flu and we could not take the chance of Kirsty getting it. I have been spending as much time as I can with her, but it has made things very difficult.

Kirsty’s headaches have been getting really bad and her ear infection is not clearing up, so when she went back to our GP last Friday he took a swab of her ear, and to be on the safe side, is arranging for Kirsty to have a brain scan even though she had a brain scan in April. With NF things can change overnight and he does not want to take any chances.

Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine, knees, and now her stomach being removed. She could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick. This sickness is really beginning to tell on her now.

Thank you for the lovely cards that she received this month, which were hand made and beautiful and a lot of work had gone into making them. Thank you for the lovely letters, which helped me with very difficult month. I would like to thank the people who sent me gifts this month; sorry I could not make the names out though.

Update 30th June 2009

Kirsty is still being sick after having any fluids or anything that is sloppy. The second lot of tablets made things much worse for Kirsty so her doctor stopped them and put her back on the first lot of tablets, which did help a little. Kirsty was very unwell when she went to see her GP last week so her GP is writing to the hospital to have her appointment brought forward and is also arranging for a different doctor to see her as soon as possible.

She is still waiting on a spinal scan and has been in a lot of pain in her back.

Even though Kirsty’s missed so much of her education due to being in hospital and attending hospital weekly, I am pleased to say she passed all her exams gaining Merit, Merit, Merit, which will now allow her to study Radio and TV production.

Thank you to everyone who sent Kirsty post this month, it is much appreciated.

Update 29th June 2009

Kirsty would like to say a big thank you to Becky and Cara for the lovely gifts that she’s received. As always, the gifts and letters that Kirsty receives really make her day.

Unfortunately the second lot of tablets have not helped with Kirsty’s sickness. Our GP as put Kirsty back on the first lot of tablets and is writing to the hospital to say that Kirsty needs her appointment bringing forward urgently. She is also asking for a different doctor to look at Kirsty and if this is not possible, our GP said she will send Kirsty to a different hospital.

She is having a difficult time of it at the moment and it’s looking as though she will have to have her stomach removed. Her spinal doctor is arranging for her to have a MRI scan of the spine so that he can plan how to do the surgery on her spine, which will be a very risky operation if Kirsty decides to go ahead with the surgery.

Post Pals has made a big difference in Kirsty’s life and she is in contact with so many lovely people due to Post Pals. Thank you for helping to keep that lovely smile on Kirsty’s face.

Update 7th June 2009

Kirsty wanted me to thank Becky for the lovely Bunny that she received as it really made her day. Kirsty loves soft toys and when they make a sound it brings a big smile to her face, which is really nice to see.

Kirsty is really having a bad time of it at the moment and has not been able to eat or drink anything for weeks now without being really sick after it. The tablets that the hospital doctor gave her are not helping so can I ask if you will please pray that these next lot of tablets will help, as these tablets are her last chance before they remove her stomach. I have said that I want a second opinion if things are still the same after this next lot of tablets and our GP who is really good agreed and she will arrange for Kirsty to see another doctor.

Thanks again to everyone who takes the time to write to Kirsty, she really is very grateful.

Update 29th May 2009

Kirsty is still being very sick after having any fluids or anything that is sloppy. The gastric test showed that Kirsty has a severe gastric emptying problem. Doctors are trying her on another tablet, which they want her to take for four weeks. If it helps she is to continue taking them for another four weeks and by then she will be seeing the doctor again. If after four weeks these tablets are not helping, she is to try this other tablet for four weeks. If things are still the same after trying these other tablets, the doctor is talking about the possibility that Kirsty will have to have her stomach removed. The doctor said Kirsty has so many tumours in her tummy that it is making things worse and that they could not possibly remove all the tumous.

She is doing well in the back brace and we are now waiting for more MRI scans of her spine before Kirsty decides about another spinal operation.

Kirsty was on Channel M this week talking about her next fund raising event which all her ambulance drivers and other medical staff are getting involved with.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine, knees, and now her stomach. She could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with being so sick. Thank you for the lovely cards that she received this month, so many of them were hand made and they were beautiful. Also, thank you to everyone who very kindly sent letters and gifts this month. Kirsty has managed to write and thank everyone.

Update 25th May 2009

Kirsty is on the Channel M news on Tuesday talking about her next fund raising event which is a spookathon (staying in a haunted house over night). Many of her ambulance drivers who take her to hospital every week and other medical staff involved in her care are doing it with her.

Kirsty is still being sick everytime she has a drink. We are just hoping that these new tablets will help and that she does not have to have her stomach removed. Her NF doctor is phoning us on Wednesday to have a chat over the tumours that were found in her tummy. Kirsty is not letting any of this last lot of news get her down and is trying to cope the best way she can.

Update 20th May 2009

Well, we are back from the hospital after seeing the doctor for the results of Kirsty’s gastric emptying study. Unfortunately we did not get the news we hopped for.

The doctor said that Kirsty has a severe form of gastric emptying and that the food is not moving as fast as it should, which is why she is being so sick. On top of that they said she has so many tumours in her tummy that they are not sure if any of them are on a particular nerve that is making things worse. They are putting her on Erythromycin for four weeks and if they help she will have to get some more for another four weeks. If things are still the same after four weeks, she is to stop taking them and try this other tablet for another four weeks (can’t remember what it was called). She goes back in 8 weeks and if things are still the same they will try hypnotherapy. If that does not help she may have to have her stomach removed.

They are running out of medication to try, which is why they think the tumours may be making things worse. The NF doctor said that Kirsty has a very severe form of NF internally and that she may be a one off case with her NF being so bad.

So I am a little upset by it all at the moment. I just wish we could get some good news for a change.

Update 30th April 2009

Kirsty is still poorly and spent over four weeks in hospital being very sick. The sickness is no better so she is having a gastric emptying study done tomorrow. The doctors did a scan on her tummy while she was in hospital and found some new tumours in there. Another doctor is going to look to see if any of the new tumours are pressing on a nerve that is making her so sick.

She is now in her new back brace and will continue to wear the brace until it’s decided if surgery on her spine should go ahead.

We also saw the doctor over the tumours in her knees last week and he told us that Kirsty has so many tumours in her knees it would be impossible to try and remove them all. He wants her to have another PET scan done so that he can see the tumours in more detail.

On a good note, Kirsty was nominated for the Young Citizen award by the Rotary club and was one of the five winners. She received her award last Saturday in Edinburgh, which was filmed live on BBC 24. This can be seen again over the Bank Holiday weekend on BBC 24. Kirsty is also in the Woman’s Own Magazine on Tuesday.

I would like to say a big thank you to everyone who has taken the time to write and send gifts to Kirsty. You have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Kirsty is having a very difficult time of it at the moment and must face the prospects of further surgery on her spine and knees so she could do with lots of continued TLC at the moment. She is in a lot of pain and feels worn out with keep being so sick.

From Kirsty: Thank you for the lovely cards that I received this month as they really do help. I received so many get well, Easter and birthday cards that the postman said his bag was full of my post. Thank you to everyone who took the time to write to me as these letters really helped me over some very difficult times this month. I’d also like to thank everyone who very kindly sent me gifts this month. I received some really nice soft toys, card making sets, cup, Mr egg growing kit, friendship bracelet and other gifts. A big thank you to Post Pals, Becky, Mrs Ball and whoever it was that sent me the other gifts.

Update 23rd April 2009

Kirsty just wanted to say a big thank you for the growing egg which she received. She is going to take a picture when it starts to grow.

Look out for Kirsty on the BBC News tomorrow (Friday) as they came to film her while she was in hospital last week and you may see the birthday or get well card that you sent her. She is also on BBC News at 11.30am on Saturday which goes out live (young citizen awards).

Kirsty is still being very sick so we are just hoping she will be ok.

Update 16th April 2009

Just a quick note to let you all know that Kirsty is now home. She is still being very sick after eating and drinking but has been sent home with more tests to follow in the next week. If things continue she will have to go back in next week.

Look out for Kirsty on the BBC News one day next week as they came into hospital to film her. You may even see one of the cards you have sent her while she’s been in hospital. She is also in the Woman’s Own magazine on the 28th April.

Update 14th April 2009

Kirsty is still in hospital and continues to be very sick after eating and drinking. She is now feeling very worn out by it all and in pain in her tummy and very tired. I have contacted the NF doctor to ask if she can come up with any suggestions as to what is wrong with her, but Kirsty really does not look very well at the moment.

Update 8th April 2009

Kirsty is still in hospital and things are no better. She is still vomiting over a 1000ml a day back.

The MRI scan of the tummy that she had showed more tumours in the tummy than the ultrasound scan showed. We are seeing the doctor tomorrow to talk about what steps to take next. They are also in talks with Kirsty’s NF doctor to see if one of these new tumours may be growing on a nerve that is making her sick.

Kirsty asked me to thank everyone who very kindly sent her birthday cards, birthday gifts and get well cards. You have made her stay in hospital so much easer.

Update 4th April 2009

Kirsty is no better and still being very sick, which means she will be spending her birthday in hospital yet again. She had a brain scan Thursday which was good news as they said nothing found to worry about. The next plan is to do an MRI scan of her tummy on Monday and see if any tumours are growing in the tummy.

It’s Kirsty’s birthday tomorrow. She’s received lots of cards to open from Post Pals and I would like to say thank you to everyone who took the time to send Kirsty a card.

Update 2nd April 2009

Kirsty is no better and is still being very sick after having anything to eat or drink. Kirsty’s consultant came round this afternoon while I was with Kirsty and after seeing how sick Kirsty was still being, she arranged for Kirsty to have a brain scan, which was done within minutes of seeing the doctor. The doctor also wants Kirsty to have an MRI scan of her tummy, which should be tomorrow or early next week. We have not had the results of the brain scan given to us yet.

By the time I had left Kirsty this evening Kirsty had vomited over 1000ml, so this will give you an idea how sick Kirsty is being.

Update 1st April 2009

Kirsty had the ultrasound scan today and the result showed that she had new tumours in the stomach muscle which were 21.1mm, some at 14mm and some at 6mm that were not in the muscle. Her other organs look to be working ok. They don’t think these new tumours are the cause for her being sick.

They will talk about more tests tomorrow. She is still being very sick after eating and drinking. So no change really.

Update 31st March 2009

Kirsty’s having a bad time of it at the moment and is in hospital and not very well. She’s been in hospital two weeks now and there’s no improvement in her condition. She is not keeping any food or fluids down and keeps being sick whatever she has. Doctors did a camera into her tummy yesterday which showed inflammation, so they took a biopsy and are now waiting results. Tomorrow she is having a scan of the tummy and depending on the results the next step is for her to have a brain scan. So it looks like Kirsty will be spending another birthday in hospital.

We saw Kirsty’s spinal doctor at the beginning of the month and unfortunately things have got worse with her spine. She is to go back in the back brace, which we get next week, and her spinal doctor wants Kirsty to think about having further spinal surgery where he will take the rods all the way to the top. This operation comes with many risks as Kirsty’s spine is covered in tumours. He would have to operate from the back and then turn her over and operate from the chest, which would mean moving many of her organs. He wants Kirsty to let him know in May if she will have the surgery.

She also saw a doctor over the tumours in her knee and he feels he can’t do anything to help so wants her to see this other doctor. We go to see them next month.

The doctor in London wants to see Kirsty in person (we hoped she would do a video link) so we’re just waiting on the appointment at the moment.

Kirsty really has had a bad month and could do with lots of hugs.

On a good note, Kirsty was in the Daily Mirror https://www.mirror.co.uk/life-style/2009/03/17/years-of-pain-but-neurofibromatosis-sufferer-kirsty-ashton-just-wants-to-help-our-kids-115875-21203662/. She had a great time having her make-up done and trying on all the different clothes.

Kirsty says thank you for the lovely cards that she received this month and thank you to everyone that who took the time to write to her as it really does help. Thank you to fellow Post Pal Aisha for the lovely card that she sent. Kirsty also received a lovely cushion made by the stitch of love and kindness, a lovely teddy, some finger puppets and a craft set. These items have really helped to cheer Kirsty up while she’s been in hospital and she would like to thank everyone who thought of her.

Update 28th March 2009

Things are no better for Kirsty. She is still in hospital and looks like she will be spending another birthday in there.

Thank you to whoever sent Kirsty the teddy. We all know how much Kirsty likes her soft toys and even more so when they do something. The teddy really cheered her up.

We took her to the hospital shop in her chair to see if she wanted anything and she picked a small cake, but yet again it just came back up.

I will update when we have more news.

Update 24th March 2009

I’m just back from the hospital and things are still the same with Kirsty. She is still being sick and is having a scan of her tummy done tomorrow. They did a scan on her heart today as her BP is really low but that came back ok. They injected a strong anti sickness drug via her drip but even that’s not stopping the sickness.

I will keep you informed of what is going on with Kirsty. Thank you to all who have sent Kirsty good wishes.

Update 22nd March 2009

Kirsty was taken into hospital today. They are running tests and talking about doing a brain scan and camera into the tummy. They have put her on a drip to try and get some fluid into her. She is not very well at the moment and is upset because it’s Mother’s Day.

Update 17th March 2008

Kirsty was in the Daily Mirror today and they did a full page spread centre page. The link is https://www.mirror.co.uk/life-style/2009/03/17/years-of-pain-but-neurofibromatosis-sufferer-kirsty-ashton-just-wants-to-help-our-kids-115875-21203662/

Update 7th March 2009

Kirsty saw her spinal doctor on Monday and NF doctor on Thursday due to her having some worrying symptoms.

I am sorry to say they did not go our way. The doctor told Kirsty she needs more surgery on her spine, she is back in the back brace to help with the pain and he wants to take the rods all the way up to the top of her spine. There are lots of risks involved due to the amount of tumours on her spine; she has at least one tumour on every nerve on her spine. If Kirsty agrees to have the operation he will have to go in from both her back and turn her over and go in again from the chest, which would mean moving many of her organs. He asked her to think about it and to let him know in May.

On seeing her NF doctor, things were very much the same and she was having a meeting with the doctor in London to talk about Kirsty’s situation. Her NF doctor said in her 25 years of working with NF she’s only seen one other person with so many tumours on their spine and that person was much older.

You can imagine Kirsty could do with lots of Tender Loving Care at the moment. She would like to say thank you to Mrs Ball, Becky Butler and Post Pals for being there for her.

Update 1st February 2009

Kirsty is still attending hospital weekly and we have a busy month ahead with other hospital appointments.

Kirsty’s operation went well and they managed to remove all five of the tumours, but she is still in some pain from the surgery.

I had to take her to the children’s hospital this week to see the doctor over the tumour that is growing behind her knee. It is getting bigger and making it impossible for Kirsty to wear her knee braces without a lot of pain. He said that it was important that she wore them to keep her knees stable and that on the last scan one of the tumours in her knee was over 3.5 cm with lots of small tumours going round it. He’s now decided to send her to see this other doctor as he does not know how best to remove this type of tumour. I just wish he would have done this 16 months ago if he knew then he was not able to do the operation.

Kirsty’s trip to London to film Noel’s HQ went well and if anyone missed it they can still watch it by visiting kirsty’s web page www.kirstysstory.co.uk and clicking on the picture of Kirsty with Ricky Whittle. A small clip of Kirsty was also on Noel’s HQ again this week.

Kirsty still needs some TLC as she has got surgery ahead of her and she is worried about her Gran who is also just out of hospital.

I have to take her to see the spinal doctor in a few weeks when we will find out if more surgery will be needed.

Thank you for the lovely cards that I received this month as they really do help. Thanks also to Mrs Ball for her letter. Thank you for the lovely biscuits and large balloon that I received when I came out of hospital, they really cheered me up as I had been in some pain and these made me smile.

I would like to say a big thank you to every one who has taken the time to write and send gifts to Kirsty, you have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 13th January 2009

Kirsty is going to be on Noel’s HQ on Sky1 on Saturday night at 7.30pm (virgin 121, Sky 106 and HD 170). We are going to London on Friday until Sunday so that we can take it easy with Kirsty, as she’s been in a lot of pain with her back, so much so that it’s resulted in having to wear her back brace to try and help with the pain.

She is also in the Sun morning paper either tomorrow, Thursday, Friday or Saturday (they have not given me a date yet, just that it will be one of those days). She is also in the Daily Mail on Saturday i think.

Kirsty goes in to hospital next week for more surgery, but fingers crossed she will only be in overnight. Kirsty could really do with some TLC at the moment.

Update 31st December 2008

Kirsty is still attending hospital weekly, and will be going into hospital on the 20^th January for more surgery. She needs to have four tumours removed from her tummy, groin and leg, so she could do with some TLC. We are yet to see the doctor in London and find out if going to the USA will be of any help to Kirsty. NF can be a very cruel condition, as we are finding out with Kirsty, and the older she gets the more she knows about the test, which makes things more difficult. When she was younger she did not really understand what was going on, only that she was in hospital, which she loved at the time.

On a good note, Kirsty won the Community Award and was named the Young Citizen of the Year. She also won an overall runner up award and was given a special Commendation Award. You can see some pictures from the awards night on her web site www.kirstysstory.co.uk and for any Hollyoak fans, Kirsty just had a part in Hollyoaks, which will be on screen the end of January. I will try and let you all know when we get the date. You can also see Kirsty on Noel’s HQ, which is on Sky1 on the 17^th or 24^th January.

Kirsty received some lovely hand made Christmas cards this month and would like to say a big thank you to everyone for taking the time to think of her. You are really kind. Thanks to Mrs Ball and Becky for the letters too. Thank you to Tara her Elf, Mrs Ball, Kate Dee, Becky Butler and Susanna Wild for the lovely gifts that you very kindly sent – Kirsty loved each and every one of them. She has not been well the past few weeks and these gifts really cheered her up, thank you. I hope you all have a great 2009!

I would like to say a big thank you to every one who has taken the time to write and send gifts to Kirsty in 2008. You have all been a big part of Kirsty’s life and have helped put a smile back on her face during some very difficult times.

Update 28th November 2008

Kirsty is still attending hospital weekly and they have now found another problem with her feet which is due to the tumours pressing on the nerves.

Kirsty should be having an operation in December to remove four tumours, but we are hoping they will leave it until after Christmas now.

Kirsty will see our family doctor next week, when she will get the results of the echo scan and the blood test she had last week to see if she is still anemic.

On a good note, Kirsty is in the finals for the Manchester Community Award to be named Manchester’s fund raiser of the year. Please keep your fingers crossed. We find out the result on the 10^th December when we attend the awards.

I received some lovely cards from abroad this month and would like to say a big thank you to everyone for taking the time to think of me, you are really kind. Thank you to Becky Butler, all the children at St Matthews Sunday school, and Kate Dee. Thanks also to Viks for the lovely purse.

Hope you all have a great Christmas and a big thank you to the team at Post Pals and to everyone you has kindly taken the time to write or send gifts to Kirsty this year – you really have helped during some very difficult times.

Update 1st November 2008

Kirsty is still attending hospital weekly and on a recent visit to the hospital to see one of her doctors they said she would benefit from having the tumors removed from her tummy, chest wall and top of her leg. This will be done before Christmas.

Kirsty was also getting very tired and more breathless and after seeing our family doctor who ordered blood tests, Kirsty was found to be very anemic and is now on iron tablets. The doctor also wants her to have an echo scan done as her breathing was very fast when the doctor listened to her chest.

At the moment she is looking forward to Christmas and I’m sure santa will be good to her this year as she’s been really good about all her hospital visits and tests that she keeps having.

Thank you for all my post. I received some great DVD’s and CD’s with some other bits and bobs which really cheered me up, but there was no name, so if the person who sent them is reading this, thank you very much as I really loved them.

Update 28th September 2008

Things are still very much the same with Kirsty and September was another very busy month for her with hospital visits. We find out next week if Kirsty will need to have some more tumours removed that are giving her some pain in her tummy.

Thank you to Becky Butler and Mrs Ball for her post.

Update 16th September 2008

Things have got worse for Kirsty. We saw her NF doctor this week and she said that Kirsty’s foot drop had worsened and that every time they scan parts of Kirsty’s body they find more tumours. She also said that in her 20 years of dealing with NF, she has never seen anyone affected so badly internally by it. We now have to take her to see a doctor in London and depending what this doctor says we may have to take her over to the USA to see a doctor. So it is a very worrying time at the moment. Hospital visits are still weekly and she could do with some TLC at the moment.

On a good note, her face is up in lights along Blackpool front as part of the Blackpool lights.

Update 31st July 2008

I’d like to say a big thank you to Becky for the lovely gift and to all who took the time to write and send me cards this month.

I am still attending the hospital weekly as the pain in my back has been really bad. I did do a six week pain treatment course but it did not really help. The doctor thinks one of the screws may have split and moved away from the spine at the top slightly.

On a good note, mum and I spent three days in Washington DC where I was representing the UK in the Huggable Bear Hero Award. I did a photo shoot and will be in the 2009 build a bear calendar in November.

I was also nominated for the Manchester Hero Award by people that had read about me in the press and was one of the 25 winners. This week I also won the Charles Austin Vocational Service Award after I was nominated by the Rotary Club. So it’s been a busy month!

Update 1st July 2008

Things are still very much the same with Kirsty and June was another very busy month for her with hospital visits. The new pain treatment is to continue for a few more weeks but she is still getting a lot of pain in her back.

Kirsty took her driving test last week and passed, so the following day she took her pass plus test and passed that too! She cannot afford a car yet so will not be on the road just yet.

Kirsty and I are going to Washington DC on Tuesday as Kirsty was voted the Huggable Bear Hero Award for the UK. We now have to go to Washington DC for four days in order for her to receive her award and meet the other 11 winners from around the Globe. Kirsty will be doing a photo shoot whilst she is there for the 2009 calendar.

Update 29th May 2008

Things are still very much the same with Kirsty and May was another very busy month for her with hospital visits.

Kirsty’s also had a few falls and had to be taken to the A/E department due to the pain in her back.

Kirsty has now got to start going to the hospital at least twice every week for some new treatment that they want to try for the pain and her physio’ will continue every week too.

She is still enjoying her driving lessons and is taking her test very soon.

Thank you to Becky Butler, Mrs Ball, and also Kate Dee for your lovely letter. Thank you to Post Pals for the recent gifts that I have received – I love my teddy and I will take him with me when I go for my PET scan next week.

Update 30th April 2008

Things are still very much the same with Kirsty and April was a very busy month for her with hospital visits and the surgery that she needed. The operation went well and after spending a couple of days in hospital and two weeks at home recovering, she is now back at college.

Kirsty’s spinal doctor is not sure if one of the screws has split at the top of her spine and this is to be looked into. More tumours have been found in both her knees and she must continue to wear braces on both knees now. Having surgery at this point will only make things worse for her. The doctor wants Kirsty to have her PET scan repeated in June and if there is any change to the tumours we are looking at more surgery.

She still has to attend the hospital weekly and the doctor said that this will continue for a long time yet.

Kirsty was nominated for an award by a member of the public and was recently in the press. She finds out in June if she is one of the winners. She is also up for another award and if she wins she is going to Washington DC for four days to represent the UK.

Thank you to Becky Butler, Kate Dee, Mrs Ball, Julie Barrett, Susanna Wild, Kyle & Erin, Crafting cards forum, Kathleen Brewer and Artist Trading Cards. I received some lovely teddies from Susanna, I love my teddies and even more so when they do something. I also received three lovely balloons from Kate Dee, which incidentally are still going strong. I received so many lovely gifts for my birthday and I would like to thank each and every one of you for taking the time to think of me. It’s been a difficult month with hospital and you have all made the days so much more fun.

Update 31st March 2008

Things are still very much the same with Kirsty. We have got a busy time with hospital visits these next two weeks as Kirsty is going in to hospital on the 8^th April for surgery on her foot. She could do with some TLC over the next few weeks as we find out tomorrow if Kirsty will need surgery on both her knees and on Friday we find out if Kirsty will need more surgery on her spine. Kirsty went for her Pre’ Op’ check this morning and they said they are not sure how long she will be in hospital for yet but they are looking at a few days.

Can I ask if you will all keep your fingers crossed as Kirsty? She is taking her driving test on the 5^th April, which just happens to be her 18^th Birthday too. She wanted to take the test before she had the operation on her foot.

Thank you to all who took the time to send me a card, some of which had been hand made. They really made my day. Thank you to Becky for your lovely letter and thank you to Becky Butler, Kate Dee. Mrs Ball, Julie Barrett, and Susanna wild, I love hearing from you all.

Update 27th February 2008

Things are still very much the same with Kirsty, but she’s been very busy getting ready for her charity Ball, which was on the 16^th February. Kirsty had a lot of Television coverage, doing two live TV interviews and one pre recorded television interview along with lots of press coverage to do with the Ball that she had. Kirsty was pleased with how it went and managed to raise over £23,000 on the night. Over 200 guest attended, including boy band Eton Road, Julie (who plays Hayley in corrie’), Rowetta, Mersey beetles and Vince Miller.

Kirsty was really tired by the end of the night and it took her a few days to get over it. Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

Thank you to all who took the time to send me a card, some of which had been hand made. They really made my day. Thank you to Mrs Ball, Becky Butler and Nicole D for your lovely letters and thank you to Becky Butler for the tights that she sent, you were very kind to think of me.

Update 29th January 2008

Kirsty had to see the orthopaedic doctor last week as both her knee’s kept giving way. After the doctor had a good look at both Kirsty’s knees, he was concerned how loose both her kneecaps were and also about some swelling to the back of her knees. He wants Kirsty to have an MRI scan, which she having next week to see what is going on.

Kirsty has also had a lot of pain in her back and this has been getting worse over the past few days, but she will not let me do anything about it as she has got a big charity Valentine Ball in February that she is busy with. She is hoping to raise £65,000 so that she can pay for 100 terminally ill children to visit Santa in Lapland. Kirsty spent the afternoon with a TV crew on Sunday talking about her condition and charity work, which was on the local TV news last night.

Update 3rd January 2008

I received a call on my mobile the Friday after Christmas, it was 7pm and we were on our way to a party and had people in the car so I could not really talk. The doctor asked how Kirsty had been and she then said that she had received a call from the doctor who did the P.E.T scan on Kirsty and that he wanted to do it again. He thinks it may have given some false readings as the day Kirsty had the scan was a cold day and he thinks Kirsty should have it done again so that he can compare the two scans. I mentioned that Kirsty had been for a ultra sound scan of her tummy due to getting pain in her tummy and that they noticed Kirsty had lots of small tumours in her tummy. The doctor then said she knew about the tumours in the tummy as they had been seen on the P.E.T scan too. The doctor wants to see both Kirsty and me when she gets back in February to have a chat about things, so I will know more then.

In the meantime, Kirsty attends the children’s hospital this month over the problem with both her knees giving way on her. Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

Thank you to everyone who took the time to send me such nice gifts, they really helped make my day and reading your letters helped take my mind off some difficult times.

A big thank you to Nicole D (post Pal member), Becky Butler, Mrs Ball, Susanna Wild, Julie Barret and Santa Posty.

Update 29th November 2007

Kirsty had her PET scan and is now awaiting the results. I received a call from Kirsty’s doctor today who asked if I could bring Kirsty in to see her later in the day. When we arrived the doctor called us in and told us that she had received a letter from Kirsty’s physio’ who had been concerned at the amount of falls that Kirsty had been having. On looking at her knee, he felt that there was damage to the ligaments and a lot of swelling to the back of Kirsty’s knee which may be fluid. The physio’ wants her to have a MRI scan done of her knee so the doctor is asking for an orthopedic doctor to have a look and for now she must also wear a brace on both her knees.

Kirsty is to have a scan of her kidney in December to make sure she does not have any tumours on her kidney. They are also worried that she is losing weight.

We received a call asking for Kirsty to come in to hospital for the operation on her foot this week but Kirsty told them she did not want anymore operations before Christmas, as she is taking her driving test in December.

Even though Kirsty’s still got a lot going on and we still attend hospital every week, it’s not stopped her from smiling and getting on with life to the full.

From Kirsty: The team from Post Pals work so hard to put smiles on poorly children’s faces, it’s nice to see Post Pals growing each month with such brave kids. A big thank you to Nicole D (another Post Pal), Kate Dee, Becky Butler, Mrs Ball, Susanna Wild, and the wonderful people who sent me the beautiful quilt, which I have on my bed.

Update 30th October 2007

Kirsty’s not been so well recently and in a lot of pain. Doctors looked at Kirsty and think she may have a tumour on her kidney, so are arranging for her to have an ultrasound scan of her tummy.

The results of the tumours that were removed a few weeks back were not nasty, but the doctor looked at Kirsty’s foot and found a new tumour, which looks to be deep into the bone. She is to have more surgery in the New Year to have this removed as Kirsty is hoping to take her driving test before Christmas and they have said they will leave it until after her driving test.

Thank you to everyone who took the time to send me letters and postcards they really helped make my day and reading your letters helped take my mind off the many hospital visits that I have had. I have made lots of new friends due to Post Pals and it’s nice to see it growing each month. The team from Post Pals work so hard to put a smile on a poorly child’s face, it’s amazing what a knock on the door from the postman can do.

Update 29th September 2007

Kirsty is waiting for a PET scan after doctors found out from her last MRI scan that she now has a number of tumours in her pelvis. If the tumour show to be a grade 3 or above, she will have to see doctor in London and may need further surgery.

From Kirsty: Thank you to everyone who took the time to send me letters, gifts and postcards. They really helped make my day and reading your letters helped take my mind off the many hospital visits that I have had. I have made lots of new friends all over the world due to Post Pals and it has made a big difference to my life.

Update 12th September 2007

Kirsty went for her nerve conduction test and pelvic scan results today. Unfortunately, the nerve conduction test showed that she does have damage to the major nerves that work her legs and feet. This is why she developed the foot drop in both feet and the pelvic scan showed that Kirsty has tumours all around and on the major nerves in the pelvis, so it’s been decided that Kirsty should have a PET scan done. If any of the tumours show up as a grade 3 then it may mean a trip to a hospital in London. Kirsty took the news well, but could do with some TLC over the next few weeks.

The doctor was going to contact a doctor in the USA to tell them about Kirsty and see if she would be ok to take part in the drug trails, but she decided Kirsty should enjoy her time at college at the moment and see how things go with the PET scan.

Update 31st August 2007

Kirsty has just got out of hospital after having four tumours removed and she is doing well with pain control. Kirsty still has to attend hospital at least once a week, but this can be as much as four times in a week. Kirsty is still having problems with her breathing and after seeing the physio’ who commented on her breathing being very fast and there being a problem with her diaphragm not being used correctly, she is going to use a Mediflo Duo, which may help with her breathing. A Mediflo Duo is a dual use incentive spiro meter that can be used for both Sustained Maximal Inspiration (SMI) and Positive Expiratory Pressure (PEP). She has got to try and use this three times a day. Kirsty must also now wear a splint on both her legs/feet, which she’s just been measured for and they should be ready on the 26^th September. We will be going for the results of the recent scan she had on the 12^th September to find out if she will need more surgery or not.

Post Pals is a great website and has made a difference to my life and made my hospital stays much easier. I’d like to say thank you to Susanna, Becky, Ryan (post pal), Kate, Mrs Ball and any one else who takes the time to write to me and send me kind gifts. They have really helped to cheer me up. I do try and write back to everyone and I’m sorry if I have not got to you. Sometimes people don’t put their name and address on the letters or packages though.

Update 23rd August 2007

Just to let you know that we received a call this morning to say they are bringing Kirsty into hospital on Tuesday 28th August ready for her operation on Wednesday 29th August. We’re not sure how long she will be in for yet, but she could do with some extra TLC.

Update 12th August 2007

A big thank you for the teddies that Susanna form the USA sent to Kirsty. She had not been so well and in a lot of pain when she received this package and they really brightened up her day. Susanna, you are a star!

Update 30th July 2007

Things with Kirsty are very much the same – we still have to go to the hospital up to 3 times a week and tomorrow we find out if Kirsty will need surgery on her lung. We are also waiting on the date for her next surgery, which should be any day.

Thank you to everyone who took the time to send Kirsty letters, gifts and postcards. They really help make her day and reading your letters helps her take her mind off hospital visits.

Update 29th July 2007

Kirsty is doing ok at the moment. We find out on Tuesday if she will need surgery on her lung. We haven’t got the date for her other surgery yet, but we should be hearing very soon.

Update 27th June 2007

Things are no better for Kirsty health wise and she will be going into hospital for more surgery at the end of July or beginning of August. She now has foot drop in both feet and needs to wear a brace on both feet/legs. After having an urgent MRI scan of her spine she was found to have a new cluster of tumours at the bottom of her spine. The doctor then arranged for Kirsty to have a nerve conduction test and after the doctor got the results back from this test, he phoned and said that Kirsty needed an urgent MRI of her pelvic. We go for this tomorrow. Kirsty will also have her lung re x-rayed in July and if the tumour in her lung has grown any bigger, she will need to have part of her lung removed.

On a good note, Kirsty was named the student of the year at her college, won the wellchild award for bravery and is going to have lunch with Prince Harry and Prince William at the weekend.

She now also has her new electric bed after a long delay.

Post Pals has played a big part in Kirsty’s life. She loves receiving post and has made lots of new friends due to post pals. Thanks this month go to Becky, Mrs Ball, Susanna, Kate Dee and Julie.

We tell everyone about post pals and have got many pals interested, so keep up the good work.

Update 27th March 2007

We got the results of Kirsty’s scan and unfortunately she now has a cluster of new tumours on the bottom of her spine, one of which is bigger than what they call the cut off point. The tumour in her neck is growing and causing some concern as is the tumour in her lung. The tumours that are on the bottom of her spine are what have caused the foot to drop. Kirsty’s doctor phoned another doctor to tell her about kirsty and we have got to take Kirsty to see her sometime this week when the doctor is back in the hospital.

Update 1st March 2007

I had the urgent scan done of my lower spine, pelvic and hip area. This is because the doctor suspected that I may have a tumour on my peronel nerve, which has caused foot drop and the reason why I am in so much pain in my lower back and groin. I have also got to go back into hospital to have some tumours removed from my neck, breast and tummy area as these tumours have started to grow.

I have got a film crew coming down to spend a couple of days with me.

Update 21st December 2006

Kirsty had to go to hospital yesterday for physio’ and have her weight checked. Unfortunately they are a little concerned because she’s now lost ½ St since September and must go back on the feeds. I have just been writing the appointments on the calendar for January and already Kirsty’s got 14 and that’s not counting all the extras that she will get during the month. She’s also got the lung function test and endoscope test to have in January. Hope you have a great Christmas and thank you again for all you have done for Kirsty.

Update 31st October 2006

Kay and i were at the hospital for over 5 hours, they were going to keep her in due to this tumour on her lung but decided she can go home on the understanding we go back to the hospital tomorrow. They also ran some urgent blood tests and it depends how the results come back tomorrow as to whether she is kept in or not. She’s also got to have a lung function test done and may need a scan of her lung, which they are not keen on doing due to the rods in her back. Her kidney scan went ok but he said he would like her to have a MRI scan done on them.

Kirsty’s been asked about telling her story in a television documentary and will be in Best magazine around the 28th November.

Update 20th October 2006

Kirsty went for an urgent chest x-ray last Friday due to her getting shortness of breath. We went to see our family doctor today for the results, who told us the results of the x-ray showed that Kirsty has a tumour coming from the top of her right lung and must now go to the chest clinic as soon as we get back from London next week. They also think that she may have some on her kidney, she is still going to the hospital weekly and now more tests must be done to see what happens next.

Update 2nd October 2006

Kirsty’s back has got worse and the surgeon mentioned further surgery, which Kirsty was not happy to have. He also mentioned that some new tumours have grown on the spine and that he wants her to have a bone scan. He is also going to have a meeting with the neurosurgeon to have a talk over how bad kirsty’s spine is. He will talk to Kirsty again after he has spoken with the neurosurgeon and decide what is best to do.

Update 24th June 2006

Kirsty is still attending hospital weekly and on a recent dry land physio assessment, she was told that she also needs a brace on her foot/ankle and we are just waiting on it being fitted.

We see the doctor next week to talk about the possibility of her having both NF1 and NF2. Doctors have also decided that they want Kirsty to have another brain scan.

Kirsty also has her new back brace now, which she got on Friday and it is just as well, as Kirsty and I was both involved in a road traffic accident on a bus. We both had to go to hospital – we both suffered whiplash and are in a lot of pain at the moment. It was a good job Kirsty had her new back brace on, as her injuries could have been a lot worse.

Her weight is staying steady but she has to take the scandishakes everyday.

Thank you to everyone who wrote to wish Kirsty good luck with her exams, it’s been a very stressful time for Kirsty, but she’s great and copes well.

Update 16th May 2006

I still have to attend hospital weekly and sometimes more (everyday last week). I have to go back into the back brace and go for a fitting on Friday, I only have to wear it when the pain is really bad and tablets have not helped.

Some of my doctors think I may have both NF1 and NF2 this is because of the nerve that some of the tumours have grown on and how the tumours look. The doctor told my parents that I must have at least one tumour on every nerve on my spine, some of which are really big. They could operate but the risk of paralysis was very high and even more so after the problems I had last year. So, some tests are going to be done to make sure if I have NF2 as well as NF1 and if I do, there has only ever been about 4 known cases world wide.

Update 8th April 2006

A big thank you to Julie, Kate, Lee, Mrs Ball, Julie, Kersh, Martha, the children who sent me the paper quilt, Becky, Kate Dee, Alan, and Karen for the lovely cards and gifts and everyone who sent me so many e-mails on my birthday. You all really made my day and i will get round to thanking you all.

I am back at the hospital on Wednesday over the tumours on my spine, where i will be told what happens next, all i know at the moment is that this doctor i am seeing looked at the last lot of scans and now wants a word with my parents. I am still getting a lot of pain in the back and still have to attend the hospital every week.

I’m not allowed to do any exercise on my leg for the next three weeks due to the amount of stitches they have put inside the leg and i’m ok with that as i get everyone to bring me my tea and wait on me, which is pretty coooool…

Update 22nd March 2006

Kirsty’s operation is going ahead on Wednesday but they now want her in hospital the day before surgery as they may want to do some more tests beforehand i.e. scan, x-ray and blood test, plus the anaesthetist wants to see her and have a chat too.

She has still got this ear infection that’s not getting any better and she’s now been on four lots of different antibiotics to try and clear it up, but without any luck.

Kirsty is being really brave about everything again but I think she could do with lots of hugs being sent her way. I think Kirsty is being so brave as she doesn’t want to upset me, but I am really worried about this next operation she is having, things just don’t get any easier. We had a letter from a neuro’ surgeon this week saying he wanted to see Kirsty as he had looked at the spinal and brain scan that she had a few weeks ago and wanted to have a chat with us. She should have been going next Wednesday but she can’t with being in hospital,l so I have now had to make it for the 12th April.

Kirsty just said to the doctor yesterday please don’t let me be in hospital for my birthday and they have promised to get her home in time to celebrate her birthday.

Update 12th March 2006

Kirsty is not so well at the moment and as a perforated ear drum, along with a chest infection and is back on antibiotics, the doctor is just hoping she will be ok for this operation at the end of March. She still has to go to the hospital every week and can’t see an end to that just yet.

Update 11th February 2006

Kirsty went for her brain and full spine scan on the 9th February ’06, which was really quick, we only waited just over a week. The doctor who arranged the scan is away until the middle of next week but we received a phone call from his secretary telling us that Kirsty’s doctor will phone us on his return with the results.

The doctor from Sheffield Children’s wants Kirsty to try some new tablets for the pain (Gabapentin), she is going to start them this week while she is off school because there can be some bad side affects with them and we want to keep an eye on her while she is on them.

The operation to remove the three tumours in Kirsty’s leg has been put back to the 29th March ’06, which is better for her as she will be on holiday from school from the 31st March for two weeks. Kirsty still continues to keep being sick and in a lot of pain in her back, we are hoping to get a new spinal mattress for her soon, which will her get a better nights kip.

Update 17th January 2006

We have been given a date for Kirsty going back into Hospital for the operation on her leg, which is the 28th February ’06. Unfortunately the three tumours in her leg have grown again and she is getting more and more pain when trying to walk. We are also back at hospital with her back on the 27th January ’06 to see how things are going with the back. Her physio and doctors at Sheffield want her to have a spinal mattress, which we are looking at trying to get at the moment but they are so expensive.

Kirsty is still being sick and lost some weight on her last weigh in, this is being kept an eye on and Kirsty will be weighed again next week. Hospital visits are still weekly and some times three times a week but Kirsty continues to be very good about it all, which help us cope with it too.

Update 12th January 2006

We are so proud of Kirsty and we wanted to share this news with you as Kirsty as just been named the Pride of Manchester, which made it all the more special with it going to a public vote. You can read more about this award by going on her web Page.

Update 4th January 2006

Kirsty was at Sheffield Children’s Hospital today for a review of her pain. Unfortunately Kirsty was very poorly on the way down to the hospital and kept being very sick. We were with the doctor for three hours, they decided to try a new tablet and some new relaxation exercises and they will see Kirsty again on the 8th Feb’ ’06. At the moment she is still in a lot of pain and it’s so hard to know what we can do to help her.

Update 1st January 2006

Happy New Year to all at Post Pals lets hope it will be a good one.

Update 27th December 2005

Well, you have all kept our postman very busy this year, I don’t think we had a day go by that Kirsty did not have a load of post including some beautiful cards from a school in Japan (Kirsty is busy writing back to them).

A big, big thank you to Kirsty’s Elf for all the lovely gifts she received she was kept busy throughout Christmas day opening all her gifts. Kirsty also had a lovely gift sent her from a lady (Kristen) in the USA whose daughter Ashley sadly passed away earlier in the year and who also suffered from Neurofibromatosis. You can read about Ashley on Kirsty’s web page. Kristen bought Kirsty an electric Bass Guitar with everything to go with it including headphones; Kirsty was in total shock when she opened this gift as she had always wanted a Bass Guitar and is now learning to play it.

Update 14th December 2005

Kirsty went for her physio today and unfortunately Kirsty was still not very well – her physio took one look at her and sent us over to the A&E department. Kirsty’s tummy, legs and hands were so swollen that the physio was very concerned about it. After spending four hours in A&E, the doctor was sure Kirsty did not have any blood clots but was still concerned as to why her tummy was so swollen. The only thing he could come up with was that it may be the new tablets that she has been put on for her pain. He asked to phone her pain doctor and explain whats happened, which we did, and after talking to them it was decided Kirsty should stop taking them as they are not doing anything for the pain anyway.

Update 12th December 2005

Kirsty was asked if she would like to go to Lapland with her brother and of course they both said “yes” and even though Kirsty took poorly and had to get a doctor to see to her, they both managed to have a brilliant time.

Update November 2005

Not much change really, we are still having to take Kirsty to the hospital weekly for physio’ in the hydro’ pool. Kirsty has put some weight on, which was good news but the dietician thinks it’s down to the Scandishake, which are high in supplements, protein and calories. Kirsty is still not managing to eat a great deal and still keeps being very sick.

Update 19th October 2005

Kirsty is doing ok but is still going to the hospital every week, she had lost a little bit of weight today when we went, but she had been very sick for few days so we have got to have it checked again in two weeks. We have also had a phone call from Sheffield Children’s Hospital they want to see her again on the 10th November to talk about some other treatment to help with the pain.

Update 2nd October 2005

Just to up date you with how Kirsty is doing. Well, we went to Sheffield Children’s hospital last Thursday and met with the pain doctor and two other doctors, unfortunately Kirsty was really poorly on the way and kept being really sick, so the ambulance driver had to pull over to allow us to see to her.

By the time we got to the hospital and the doctors saw Kirsty they all said how unwell she was looking and were concerned that she is still being very sick. They are not sure if the sickness has anything to do with the tumour that is on her brain stem, or if it’s to do with the surgery, but the last brain scan results were good and the tumour is not growing and is best being left alone, but he wants to look into this as Kirsty has been getting lots of headaches too.

The tumours that are in her leg will have to be removed because they have grown since her first scan. They are trying some stronger pain killers to help with the pain in her back, leg and groin. He is also going to talk with some other doctors to see what can be done.

Kirsty is also having to go weekly to hospital for physio’ in the hydro pool to help try and build her muscles up.

Kirsty still remains to be very happy and gets on with things; she is back at school but only for a few hours at a time as she gets very tired. Her school provide a taxi to pick her up and bring her home everyday.

Update 26th August 2005

Kirsty is continuing well with her recovery. A visit with the dietician yesterday showed she was only a few lbs short of her original weight which is good news.

Kirsty also spent some time with the physiotherapist and looking forward to the hydro pool next week.

Kirsty is having a lot of pain in her back, and after a call to the hospital her next appointment has been move forward by 8 weeks to 9th Sept.

We would like to thank everyone for all the cards that are keeping the postman in a job.

Update 26th July 2005

Thank you to everyone who has taken the time to write to kirsty all your letters really do cheer her up. She writes back to everyone who includes an address but for those who don’t she sends a BIG thank you to them too.

Update 20th July 2005

Kay is still very much up and down we are back at the hospital next week so the doc’ can see how these two tumour’s in her leg are doing. She’s still getting a lot of pain when she walking but coping really well. We have got three hospital appointments next week with Kirsty, so we are just keeping fingers crossed that everything will be ok.

Kirsty was back at the hospital today (26th July ’05). The doctor had a look at the tumours in her leg and she felt rather than mess about with more scans that Kirsty should have both the tumours removed. One of tumours is around 3.0cm by 2.5cm and the other is now about 4.0cm by 3.5cm. Kirsty will have the tumours removed at Christie Hospital and hopefully will only be in hospital a short time.

Kirsty is all so going to see a doctor at Sheffield Children’s Hospital in the hope they can control some of the pain that she is in. They have said they cannot remove any of the tumours, which are in and on her spine or the ones that are in her groin.

One of the doctors Kirsty sees reckons Kirsty must have over 100 tumours in her body and it would be far too dangerous to touch any of them on her spine or groin.

Kirsty is back at the hospital Friday where she will have physio’ and also see her dietician. Kirsty is on high supplement drinks (Scandishake) and Polycal, which is high in protein and calories to help build her up.

Kirsty still continues to remain cheerful and is a great kid who tends to spend her time thinking of other poorly children and how she can help them feel better.

This is a wonderful site that is really helping to put a smile on a child face. Kirsty loves looking out for the mailman to see if she has any post and it helps to get her up early in the mornings.

“Everyone is so kind weather it be a card, letter or gift just knowing someone has taken the time to write to me really cheers me up. I tell everyone about post pals and how it’s helped me.”

Update 6th July 2005

Kirsty is progressing well. She has seen her spinal doctor since coming home, where a spinal x-ray was taken, and this x-ray showed the bones are starting to repair and she no longer needed to wear her body brace, which is good news.

On her weight front, Kirsty was with the dietician yesterday and pleased to say she has put some weight on and is happy with her progress and too continue with what she is doing.

Schooling, Kirsty is how getting home tution 3 hours a week and is also working on her school gcse course work. Kirsty’s head teacher has been to visit her at home and out lined the schools support for her and also kindly brought her some school work.

Kirsty has an NF hospital appointment later to day over the tumours in her legs, will update you later about this.

Update 15th July 2005

Kirsty is still very much up and down at the moment and still getting a lot of pain, we have just received a letter from Sheffield’s Children’s Hospital to say they hope to see Kirsty very soon. She is also getting very tired. We are a little stuck at the moment and cannot get out much due to her dad braking his foot last week.

You have all made big difference to Kirsty at post pals and i would like to thank you all for this.

Update 18th June 2005

Kirsty went back to the hospital yesterday (Friday), her doctor wants her to see a doctor in Leeds due to the pain she is getting in her groin, which is caused by the tumors in her groin. She is still not very well and it is going to take about 12 months before she is back to her old self.

Post pals has made a real difference to her with all the lovely cards, letters, stickers and gifts she has received everyone has been so kind and she’s made so many new friends too.

Update 9th June 2005

Just letting your all know Kirsty came home this afternoon and has managed a spot of retail therapy and a meal at her favorite restaurant at the Trafford Centre.

Update 8th June 2005

PM As things stand at the moment, Kirsty will be becoming home on Thursday afternoon. We are all looking forward to this day.

Kirsty has a day out planed for Friday with the Charity When You Wish Upon A Star, A gentlemen’s lunch to help promote the Charity. I know she will be telling you all more about it at a later date.

AM We sit here waiting for the ok to go home.
After Kirsty visiting the home over the last week for a few hours and some overnight, we our hoping the day to come home may only be hours away.

Update 5th June 2005

Kirsty is still in the hospital (three months now) and getting better, we hope to get her home one day next week, she has lost a lot of weight (almost 2 stone), so it will take some time to build her up again.

Kirsty got some lovely letters from a class of children in London whose teacher had been on post pals and read Kirsty’s story, she spent all last week replying to all 25 children and teacher.

Update 30th May 2005

Once again Kirsty made that trip down the motor way to home for most of the day where she spent an hour at the supermarket food shopping and to see her brother at work. Kirsty then enjoyed a walk round the small estate we live on in the nice hot sunshine. Time pasted very quick before she had tea and had to return to the hospital. Tuesday Kirsty will visit the physiotherapist in the gym and have a weight checked. Kirsty was in good spirit and it was nice to see her at home.

Update 29th May 2005

Friday saw Kirsty home for a few hours for tea which went very well and on return to hospital Kirsty had a good night.

Today, Saturday, Kirsty had a visit from her best friend and spent most of that time in the hospital ground in the lovely sun shine we have had in Manchester today. Kirsty achieved the longest time on her feet and walking today.

We are hoping to have Kirsty home again tomorrow for most of the day and back in hospital again at night, they will then review how things have gone on Tuesday.

She received some lovely letters from some school children in London last week who had read her story on Post pals, so she’s been busy writing letters to all the children (25 of them).

Update 26th May 2005

Big thanks from Kirsty for all the cards and gifts that keep arriving and a big thanks for all the messages from round the world.

We are sorry to say there is no good news. We were told yesterday that Kirsty will be in hospital for another three to four weeks; this is due to the weight loss and is now the main focus for everyone concerned with Kirsty’s recovery.
The main focus is to get some weight back on her and get her muscles strong so she is not reliant on others for walking.

It has been 12 weeks now since Kirsty first went into hospital, Kirsty is a very strong girl and I believe this and all your support will help Kirsty get over the last hurdle and see her return home in good health.

Kirsty is now attending the hospital school every day which helps pass the time.

She now has a portable DVD player so Kirsty and Julie spend most of the time watching that along with the TV…

Once again thank for your support and we hope you all have a good weekend.

Update 16th May 2005

Kirsty sends her love to you all and thanks you all for the card and good wishes that keep arriving in the post.

Today Kirsty got the results from the biopsy, the bug they had traced in a blood sample was not active so it will not be treated at this moment in time. They are continuing to treat the lining of the stomach and some valves in the stomach which are not working at their best, this my take some months to put right.

Kirsty had her regular Monday weight check and once again showed a decrease in weight, so they are thinking of tube feeding her along with the fluid over night top ups she is having.

Once again Kirsty managed to attend the hospital school for a few hours this afternoon and is still finding time to keep the nursing staff on their toes with the ghost.

With the weather here in Manchester being very sunny over the weekend we managed to take Kirsty a few laps round the hospital grounds in a wheelchair.

Update 11th May 2005

Morning –

Sorry for the lack of updates, new job and visiting taking my time up.

We hope you are all keeping well and its not getting too warm for you all with the sun coming out.

Kirsty is going for the camera in the stomach today; she will have to go to HOPE hospital for this, so it will be later today before we get any news.

One thing they will be looking for is a bug that has shown up in a blood test or ant damage for the first operation.

Kirsty was seen by the spinal consultant last Friday and he is very happy with the way the spine is looking and has asked her back in six weeks, which is good, he is still being updated over this sickness thing.

Kirsty is in good spirit most of the time and keeping the nursing staff on their toes about the hospital being haunted and there being ghosts on the ward, this hospital dates back to the First World War.

“Royal Manchester Children’s Hospital was founded in 1829 as a small dispensary based in central Manchester for the treatment of sick children. It was the first such hospital in Britain and by 1855 the service had developed to a six bedded hospital. In 1873 the hospital moved to its present site, and in 1923 was granted Royal Patronage.”

Afternoon –

Kirsty has been down and all seemed too have gone to plan.

It looks as if it’s this bug that has been the problem and the lining of the stomach is very red, they have taken some samples and sent them to the lab.

Kirsty will be back on her ward later where I will find out more.

Update 3rd May 2005

Kirsty is still in hospital and Julie is also still staying with her.

Kirsty is still feeling unwell, but is now managing to drink and eat more so she is now off the over night fluid drip.

Her blood pressure is still up and down, it changes when lying down and standing up.

Kirsty is still waiting for the Barium meal scan results which I hope we will get today and help the medical team make there next move in putting Kirsty right.

The Brain scan results show Kirsty had NF tumours on the brain, but these had not changed in the last six years since the last brain scan. This is good.

Today Kirsty is seeing a doctor over a NF tumour that have appeared on her leg in the last 4 weeks, she had a scan on this the other week and this is the follow up.

Update April 28th 2005

Kirsty is still in hospital today, Thursday, still feeling unwell; she had a brain scan yesterday and are trying her on some different drugs to stop the sickness.

The ultra sound scan did not show anything and the blood tests have all come back ok.

As I update you Julie has just called me to say Kirsty’s blood pressure’s up and down and she will be going down for a Barium meal scan this afternoon.

Update 24th April 2005

Sorry to report Kirsty is back in hospital.

Kirsty went for her first consultancy visit since coming home from surgery on Friday, she was not looking or feeling well when we left home, the tripe over to the hospital is some 40 minutes. On the journey over she became more unwell, on arrival she was taken in to see the consultant very quickly.

After some consulting with other members of his team and a member of the hospital medical team, Kirsty was sent over to the medical department where they started investigating what is coursing this sickness and with in minutes said they where keeping her in to run the tests.

Today, Sunday, she was put on a drip for liquid in take, all the tests to date are showing things are ok. Kirsty is hoping to have an ultra sound scan on Monday, but I think all this is pointing back to Body Trauma.

Update 22nd April 2005

Post Pals recieved a lovely card and letter from Kirsty thanking everyone who has written to her.

Kay went to clinic to day and her doctor was not very happy with the way she looked, she is still being very sick. Unfortunately Kay is back in hospital and they are running some more test.

From Kirsty’s Mum

To All at Post Pals

How can begin to put into words how much you have helped not only Kirsty over the last few weeks but all our family.

A special thank you to everyone who took the time to visit Kirsty’s web page and leave so many lovely messages and for all the lovely gifts and cards she has received, they certainly did put a smile on her face even when spending her birthday in hospital.

Kirsty is still poorly at the moment and awaiting the results of a new tumour which came up in her leg while she has been in hospital. But she wanted me to tell all her friends at Post Pals how touched she has been by all your support.

Thank you

Update 12th April 2005

From Kirsty

Thank you for all the lovely cards and gifts i have received while i was in hospital. It was a long four weeks but made so much easier by all the love kind words i received from so many lovely people that i did not even know.

I came out on Thursday but got taken back in on Friday over night, i had to have some more tests done because i had a high temp, which would not come down and was still being sick. The hospital is going to phone me on Monday to see how things are going. I lost over a stone in weight and a new tumour came up in my leg while i was in.

I am trying to get round to write to all the people who took the time to write to me and send me so many lovely gifts.

Update 7th April 2005

Kirsty is home! Thank you to everyone who made her birthday the best it could be.

Update 30th March 2005

Kirsty continues to be in some pain and even more now as they start to move her. Yesterday she was sat up for a short time, but this made her light headed and sick. Today she was sat up and in some great pain. Eating and drinking is still very little, so she is on a drip, it’s the combination of don’t want to eat or drink as she does not want to be sick, being sick gives her pain, giving her morphine for the pain makes her sick and on top of that they are checking her for a water infection again.

Other than that, when Kirsty is settled she is in good spirit.
Kirsty had a big boosting visit of her best friend Julie and her family.

Also the gifts and get well cards from people we don’t even know keep arriving and to these people and all are friend we say a big thank you.

All your kind words are passed on to Kirsty every day.

Update 25th March 2005

It’s all over after a very long day.

Kirsty went into theatre 9am (UK) time; she was under for about 6.5 hours.

The operation was carried out from the back putting steel in from L3 to L9 with a total of 9 screws, and also a bone graph from the hip.

Kirsty looked very well when she came round, I left her about 9.30pm and Julie has just called me to say Kirsty was very comfortable

Update 23rd March 2005

Kirsty’s Surgery is going a head at 9am this Thursday 23rd.

All test results are back and the temperature has stayed on the right side, so if nothing happens with her in the next 9 hours it will happen.

Kirsty is looking well in herself, and with visits from her two best friends this evening she is in good spirit.

Julie and I would like to thanks you all for your continued support and kind words, and we think of you all everyday, when we look at the wall of cards and gifts next to Kirsty’s bed from people we don’t even know and that is very touching.

Update 21st March 2005

PM – Sorry to say it’s off again, got Kirsty down to theatre to find her temperature was very high, after a few minutes of consultation and a few phone calls it was decided the risk was too high to take. They believe Kirsty has an under lying infection. More blood tests.

Kirsty needs to have a temperature of no more than 36c for the next 48 hours for them to go for a Thursday operation and if that fails it will be next week with a different surgeon due to her guy being on vacation. It’s a waiting game now.

I don’t know how she is feeling at the moment, the only thing Kirsty said was “it looks like I will be in for my birthday”.

I will keep you posted on how Kirsty is.

Thank you for your continued support.

Thanks to post pals for sharing this story on their web site.

A big hello to all the people that have visited Kirsty’s web site, that have come from post pals and a big thanks

for all the get well cards and Easter card that have started to arrive.

AM – Quick one to let you all know Kirsty will go down after 2pm UK time today.

Update 20th March 2005

Kirsty is feeling ok at the moment; she says her back feels funny where the discs are missing, a hard spine in to a soft hole.

Kirsty is managing to sit up with the help of pillows, and is enjoying the companionship of a young man that is no the ward, she also had a number of visitors and today here best friends from school will be going.

Update 18th March 2005

I asked her about the operation this morning and she said she was not bothered, I think she is more interested in the young boy in the bed round the corner from her, I think the nurse is playing match up.

Update 17th March 2005

Thursday

Today’s operation was called off this morning due to Kirsty having an infection; this is most properly why she has been so sick this week.

Kirsty has a water infection which would spread very fasted once the steel was put in, the bugs would cling to the steel and make her very ill and keep her in hospital for a few months.

So they are going to treat the infection now and operate next Monday or Thursday, hope to find out later today.

Wednesday

Kirsty was still a little sick over night but this afternoon she was like her normal self.

Thursday’s operation will be carried out from the back and not the side like last week.

The NF tumours are the problem the surgeon has sow the steel work will be from disc 3 to 9 (last week it was going to be 3 to 7), he will also be doing a bone graph from the hip to pasted on to the spine to help with the healing, the surgery is planed to last six hours.

Tuesday

Kirsty has had another 24 hours of being sick, good new is she is looking well tonight and not feeling sick and giving mum and dad her normal lip. Surgery is planned for Thursday.

Story written 2006

Hannah’s Dad Roger had NF1, and passed away from cancer when Hannah was 2. She was diagnosed with the same condition a week later.

Hannah initially was affected very little by her NF, she had the brown patches (Cafe-au-lait spots) and there was a slight symmetrical difference in her face which you couldn’t quite put your finger on. Over the following years we discovered that Hannah has a Pleziform Neurfibroma tumour above her right eye and another one on her back, the Sphenoid bone at the back of the orbit is the wrong way round and learning difficulties which are associated with NF1. Seeing Hannah every day reminds me so much of Rogers condition.

Hannah’s sight has been affected by the growth of the tumour. Hannah has had a few scans but these are not done often as she has to have general aesthetic so she lies still, the consultant is reluctant to over prescribe them to children.

Hannah has regular eye checks; she has to have drops in her eye so the consultant can see to the back of her eye. Hannah hates this and screams. It’s hard as a parent to have to see your child hurting.

Hannah has learning difficulties and gets help at school; it’s very common for NF1 patients to have a spectrum of learning difficulties. Hannah tries very hard but easily becomes distracted and frustrated. Her behaviour can be difficult for others to handle, especially in a new situation and with new people.

The tumour above Hannah’s eye has got to a size where it is impacting on her sight and the older she is the more she notices what other people think about the way she looks. She has had some hurtful comments from children and adults especially when we are away from our home town. Therefore Hannah and I have decided for her to have an operation to de bulk the tumour. This brings risks but will hopefully improve her quality of life.

NF is such a varied condition from one person to another, there is no start, middle and end, you never know when another tumour is going to grow, how you’re going to be affected or when. It is very like a roulette wheel.

Update 19th February 2008

Hannah is doing well and is going for regular check ups. As those of you who are familiar with Neurofibromatosis will know, the condition is very much a lottery as to what is around the corner. I live in hope that all will be well for Hannah for the foreseeable future.

Hannah, Matthew and I would love to thank you all for your support, cards, letters and gifts over a difficult time for Hannah. To keep updated with Hannah please visit our web page www.elizabethtucker.co.uk Once again, thank you.

Update 30th January 2008

Hannah is doing well and is having regular check ups. Her eye sight has not got any better; however, there is no deterioration in her eye sight since her operation.

Hannah is going on cub camp this weekend!

Update 3rd November 2007

Hannah has an appointment in Manchester with surgeons and eye people next month; we will let you know how it goes.

Hannah has started singing lessons which she really enjoys. She is going for an interview today to join the academy which meets on a Saturday. It involves 1 hour of dancing, 1 hour of singing and 1 hour of drama to help build confidence.

Update 1st October 2007

Hannah has been to the orthodontist this week to see about having a brace. She had to have an x ray and is waiting for her next appointment to have a mould taken.

Update 17th August 2007

I’ve just returned from Florida and met Mickey Mouse and the Princess it was so exciting. Saw manatees in the river although I was too scared to get in the water and swim with them. The Disney Parks were brilliant, especially for children like me with special needs. I had a card that I presented at the start of every ride and where available I was able to use a different entrance so that I didn’t have to stand in line as long. I find that very difficult. The Disney Parks were also very helpful – better that some of the other parks in Orlando. On day 13 I was very tired and could not walk any further, so we hired a wheel chair which was brilliant for me. Mum thought I had done well to walk as much as I had as I’m not the best walker in the world and I get tired very easily. Access with a wheel chair is brilliant all over the theme parks. For some rides you have to leave the chair at the entrance and transfer on to the ride a short distance, but on the whole you can take the chair with you. I loved every moment of Florida.

Update 2nd July 2007

Hannah is till doing ok apart from a few headaches and a little swelling in eye. We hope to have a check up soon. We’re going to Florida in 4 weeks and it’s very exciting. Watch out Mickey, we are on our way!

Update 5th June 2007

We have just been to London to see the show The Sound Of Music and to visit London Zoo. Hannah loved it! Hannah has also just passed her green colour swimming skills certificate.

Update 17th February 2007

Hannah is still doing very well. She still has discolouring around the eye but the swelling has gone down.

Thank you to those who sent Matthew birthday cards. He feels left out with his sister and her condition requiring so much attention.

Update 30th November 2006

A week to go until Hannah’s operation. She has no colds or viruses so we are hopeful it will go ahead next week. They are de bulking the plexiform tumor.

Story written 2006

When Alex was a baby he was in hospital for almost 12 weeks. He went in at 9 days old because every bottle he had he projectile vomited into, to the point where he was bringing up bile and his stomach lining. He suffered from severe de-hydration; he was on a drip and lost a lot of weight. When Alex was discharged they said he had Gastro-Reflux. Every bottle was pre-thickened with Gaviscon and he had to have Ranitidine every day. Alex attended regular visits to hospital at around nine months old and a feeding group once a week, which he still attends now.

Alex’s development appeared normal at eight months old but by the time Alex was one I started to notice he would forget a lot and his development seemed to go backwards. Everyone told me he would just grow out of it. At Alex’s two year check he only scored twelve months at nearly everything. Alex got referred to the portage service, also saw a speech therapist and it didn’t take long for them to realise that Alex has very poor understanding and very poor speech.

I took Alex to see a doctor at Stepping Hill Hospital. It was a different doctor as; Alex’s usual doctor was on maternity leave. The doctor examined him and noticed he had a lot of birth marks. She asked me if he was born with them and I told her “no, they just appear” so she said she wanted me to take him to St Mary’s Hospital in Manchester where a geneticist saw him and diagnosed him with neurofibromatosis (or NF1 for short).

We are not sure how NF1 is going to affect Alex but so far we know it has affected his overall development. Alex has to go for an MRI scan because they think he has fluid on his brain. Alex also has to have a series of X-rays to make sure his bones and his spine is okay. Alex has four little lumps on his head known as Neurofibromas. In most cases you don’t tend to get these until puberty, so right now we are waiting for test results and hoping and praying all is okay.

Update 1st December 2006

Alex has now got a new sister – he is very happy and loves her lots! He has started full days at school and he loves that. He would be on the bikes all day if he could too. Alex got a bit upset with halloween he did not know what to make of it. He has a new doctor now who wants him to have even more tests and Alex can say a few more words now. His younger brother Taylor has got to have some tests on him as he may have the same problems as Alex. He is looking forward to Christmas. We went to see Santa the other day, Alex has started to understand what presents are so we should have our first real Christmas and i can’t wait.

Update 15th October 2006

Alex started school last week and he loves it. He also has a new doctor and they have said he has 5 light spots on his brain. Alex has to have an mri scan to see how fast they are growing; all his lumps are growing very fast so they all need to be looked at. He now has them in his back and they think there may be some in the bowel too. I don’t totally understand what they think he has, i know they think he has nf1 and possibly something else, but what that something else is they don’t know.

Update 26th June 2006

Thank you to everyone who sent Alex a birthday card.

Update 9th May 2006

Alex was in hospital on 7th of May with a very high temp that would not go down. On the Monday his doctor came to see us and she told us Alex had a brain tumour, they are not sure what type it is so they have asked a different doctor to look at it, if they still can’t say what type it is then they want to do another MRI scan for to see if they can make it clearer to see.

They also said they thought he had a rear condition; I can’t remember the name of it as it just was a lot to take in a one time. I see his doctor on the 23rd May for the rest of the results from this other doctor and will up date more then.

Update 28th April 2006

Thanks for all the Easter cards and lollypop, Alex loved them.

Alex had his eyes checked at St Mary’s and all is ok. He also had his MRI scan on the 20th April and had lots of blood tests. We should find out how things went at the end of May.

Alex has had a bad month being in and out of hospital. He also had a 2 year check, to see if he has developed in the past year. The bad news is Alex is the same as he was a year ago, his speech or understanding has not improved. Alex also has to have an EEG just to make sure all is ok.

We are taking him to see Thomas the Tank Engine this weekend; he should love that.

Story written 2008

Courtenay was born on the 3rd October 1999. From the age of around 2 months, I noticed that her head was to one side. I asked the GP at her baby clinic and he told me that there was no need to worry, it was just a lack of head control, and at the time I accepted this. When she reached the age of one year her head was still to the one side and she was sleeping less and less. Her behaviour was also getting worse. She had brown patches but I didn’t think anything of it because I had them and so did her 2 other sisters and my Mum. I revisited my GP and insisted on a referral to the hospital, the paediatrician there put her problem down to glue ear and said she was purposely putting her head to the side because she was shy Courtenay is anything but shy!

I left it at this though deep down I knew there was something wrong and I didn’t know what. For the next 3 years it was the same. I was wary of going back to my GP because he said i was an over protective mother due to my other children also having problems at the time. Then in December 2003 I was taken into hospital doubled over in severe pain at first and I was thought to have appendicitis. The doctors did an ultrasound scan followed by a CT scan. They found a big tumour attached to my pelvis, spine and travelling down my right leg. It was thought to be malignant and I was transferred to the Royal Marsden hospital in London. There I was diagnosed with Neurofibromatosis.

This set the ball rolling and everything started to slot into place. The whole family were referred to a geneticist and tested for NF1. Courtenay and her 2 sisters were also diagnosed with NF. It was such a relief to find out that I was not going mad and the children’s problems were not all in my head. First Courtenay’s oldest sister was late sitting, walking, and had problems feeding. She was very underweight and small for her age. She also had lots of cafe-au-late spots, but they were overlooked. I was told I was worrying about nothing and it was normal for first time mums. Secondly, Courtenay’s behaviour was put down partly to our parenting and her neck was over looked. Armed with new knowledge, I visited her (thankfully new) GP. He took me seriously and suspected scoliosis and organised X-rays which confirmed this. Her spine is S shaped and her hips are lopsided causing her head tilt. Since then everything has gotten better for us and we have more support from doctors etc. Courtenay tries not to let this restrict her when playing football, but she is not able to play for longer than 10 minutes due to the pain. Her doctors allow her to play football but she has to take it easy, no saving goals etc. Courtenay will probably have her brace next year, even sooner if it progresses.

Regarding Courtenay’s younger sister Tyanna, luckily after my diagnosis she had support from the start. She has developmental delay and attends a main stream school with one to one support.

Having 3 other siblings with special needs and also having problems myself, it takes its toll on Courtenay and her behaviour can be challenging. She can be aggressive to her siblings but is always very remorseful because she often does it on impulse without thinking. She often comes home from school upset because she so often has to play alone at break times. Courtenay is a loveable, chatty and very funny little girl and would love to make new friends to exchange letters with. She is always writing me letters and posting them under my bedroom door.

Update 22nd September 2015

Courtenay still sings in various singing competitions, she loves singing and sings constantly at home and in the car.

She had a fantastic time in Bulgaria and made a lot of new friends. She enjoyed trying new foods and swimming in the pool.

She started back at school at the beginning of September and this year she’s doing her exams. I think she’s going to stay on an extra year and then going on to college to do midwifry.

We are still waiting for an appointment for her to see her back specialist. The last two appointments have been cancelled by the hospital for some reason and so we are waiting for another which will hopefully come soon.

Update 13th May 2015

Courtenay is growing up fast, she’s in her GCSE year and is currently doing a lot of revision. It only seems like yesterday that she started in comprehensive school. When she leaves school she wants to go in to midwifery so she has a lot of work and studying to do.

Courtenay is having a lot of problems with her back and it is causing her a lot of pain and discomfort.

Courtenay has an amazing voice and loves competing in singing competitions. She can sing anything from rock to ballards. When she has some spare time she loves sitting and looking after her disabled grandfather and helps around the house and makes him tea etc. She also loves going to the caravan and helping down there during the school holidays.

Thank you to everyone for the children’s post.

Update 2nd August 2014

Courtenay’s back problem has become a bit worse (pain wise) and scan results show that even though the curve hasn’t decreased as badly as they first thought, a brace wouldn’t be helpful as yet. They also diagnosed another problem called sheuermann’s disease which causes a curve at the top of the spine. This means she now has an S shaped one at the bottom and a C shaped one at the top, so it’s no wonder she’s in a lot of pain. The doctor has referred her for more physio which I’m a big skeptical about as last time it didn’t help at all. I’m also a bit angry as I read that sheuermann’s can sometimes occur with scoliosis when a brace could have prevented it. She was told she needed a brace years ago but it kept being held off.

She has just enjoyed a lovely holiday in Bulgaria where she let nothing hold her back. She tried out all the big rides despite the fact that it caused her a lot of pain. She just wanted to be like other teenagers, which I can understand. She was a hit with other guests and often had them laughing. She also wowed them with her singing.

She’s going into her GCSE years next year and wants to work her socks off as she wants to be a midwife. Along with her siblings, they made loom bands at the hotel on holiday using all their own bands and raised over £230 lev which is about £95 in our money. It’s to help send underprivileged children to Lapland.

Thank you to everyone who has taken the time to write and send to the children, it’s really appreciated.

Update 10th March 2014

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

Courtenay is having a lot of problems with her back. She attended the Royal Gwent Hospital in Newport last Friday. She had x-rays and is currently waiting an appointment for an MRI scan to see what’s happening in her back. She has been advised to start going swimming on a regular basis to help her back muscles.

Courtenay is still doing well at school and is going into her GCSE year. She’s decided to go to college to learn either midwifery or teaching.

In April, Courtenay, Cameron and Tyanna 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 15th August 2013

Courtenay has had an up and down couple of months. The pain on her back has been getting worse causing more sleepless nights. It is often reducing her to tears but she keeps on going and tries not to let it restrict her, but she pays for it pain wise later on.

Her paediatrician thinks that the hump on the top of her back is more pronounced and has referred her to her orthopaedic doctor for an emergency appointment, bringing the appointment forward by 4 months. She is seeing him on 6th September.

Courtenay had a lovely time at the Post Pals party entertaining everyone as usual. She was really thrilled to see Kate W again and wouldn’t leave her side. They had quite a few giggles together.

She enjoyed a lovely school trip to Paris. She loved visiting the art galleries and seeing the sites. She also enjoyed tasting snails for the first time – yuck!!!!!!!! On the first night she was quite ill and violently vomited all night but was right as rain next morning. She was also very brave there and helped protect her friend from pickpockets. There was a scuffle and she was knocked down some steps and she banged her head – she was a bit shook up but ok.

At the end of July we had a lovely holiday in Clacton-On-Sea. The friends we went with also had NF so did some of their children. The children liked the fact that the others knew how they felt and what they were going through. She was also chuffed to see her idol Peter Andre’s brother there and stood at the front of the stage the whole time he was on.

They were all due to go to a NF Camp with the Children with Tumours charity on 26th August. For some reason though it all fell through and it was cancelled. The children were gutted as had been really looking forward to it. Fingers crossed though it will go ahead in April next year.

Courtenay is looking forward to starting in year 9 in September. She’s determined to study hard because she’s decided that she wants to become a social worker and I’m in no doubt that she will achieve her dreams as she gives everything her all.

Thanks to everyone who has thought of the children and taken time to write, email and mail them as it really means a lot.

Update 9th May 2013

Courtenay has had a up and down time since November. She has had to stop playing netball which she loved. The pain in her back has been a lot worse lately. Her paedatrician has referred her back to her orthopedic doctor for an urgent scan. Her school has been great because instead of doing PE she now mentors the other children due to her enthusiasm. She’s doing really well at school and scoring 1 – 2 years above her age level. In english it is around 3 – 4 years. We are very proud of her achievements as she tries not to let anything hold her back.

On the down side, the lack of physical activity has made her gain weight, which is so self conscious about. She’s now doing her best to try and lose some.

We have also been given the good news that her aunty is in remission from cancer.

Courtenay is due to go to Paris with the school in July which she is looking forward to. Our family is also due to go to an NF camp in August by the charity The Children with Tumours Charity.

Thank you to everyone who has taken the time to write and post to our children, it has been greatly appreciated.

Update 1st November 2012

In August we went on our family holiday to Benidorm. We went with friends so Courtenay, Cameron and Tyanna, had other children to play with. Courtenay didn’t need this because as usual she made lots of friends around the pool both young and old. Courtenay wowed everyone by singing karaoke – she has found something she real enjoys and that’s singing.

She hasn’t been too bad pain wise but seems to smile through the pain and doesn’t let on that much when she is hurting. She is still having physio which I’m not sure really is helping. They found that along with her scoliosis she has another spinal problem and another condition with her neck.

She was really upset as she wanted to join rugby with Cameron but there is no way that she’d be able to do it with her problems. She has been referred to a dietician too, because partly due to her medication and also not been able to exercise, she has put on a lot of weight in the last year. She has also comfort eaten a lot since her favourite Aunt was diagnosed with cancer. Luckily, her Aunt has just finished her last chemo. Her Aunt also loves spending time with Courtenay because Courtenay really cheers her up and looks after her.

In September, Courtenay and the rest of the family attended a NF camp at PGL in Surrey and it was an inspirational weekend. It was so lovely as all the children had the same condition as Courtenay and Tyanna. Cameron also loved it and made lots of friends. At the end of the trip awards were given out and Courtenay won the making us smile award which was so fitting for Courtenay! There was not one thing Courtenay refused to try, you could see that Courtenay was in pain trying things but she wouldn’t give up until she achieved what she wanted. They all did us proud.

Courtenay also won school merits for high scores in History which is a subject she excels in.

Thanks so much to everyone who has sent emails, gifts, cards and letters, it is such a comfort to know that people are thinking of us.

Update 9th April 2012

Courtenay has been complaining more often about pain. The specialist brought her appointment forward by 3 months as they had interesting findings to why she is in pain. Along with her shaped spine due to the scoliosis caused by her neurofibromatosis, she has 2 other problems. She also has another condition that I can’t remember the name of but it causes a hump at the top of her spine which can become increasingly painful and he seems to think the majority of her pain is caused from this other than her scoliosis. She also has a muscle that is too short on one side and pulls her head to that side. There is an operation to correct this but the success rate isn’t that great. Courtenay has declined this and at the age of 12 we decided to let it be her decision as she definitely knows her own mind.

Courtenay has also gone through a horrible period of bullying by girls who are 4 years older than her, causing her to become very upset which is unlike her. She has also gone through a period of cyber bullying, though she was more upset at what they were calling Tyanna due to her learning difficulties, than what they called her. She is made fun of about her weight gain due to the meds and also her scoliosis. Luckily the school cracked down on one girl and she was excluded – the school threatened to get the police involved too. This has helped it calm down at the moment and Courtenay has some lovely friends to help her through this.

Thanks to everyone who has taken time to email, write, and post to the children. They look forward to them all and love reading about Dottie’s adventures – Cameron loves to read the letters to Tyanna and no one else is allowed to do the job, only her big brother!

Update 8th February 2012

Courtenay has been a bit better this month. Last month and the month before that she was plagued with viruses and infections – as soon as one would go she would come down with another. She is still having the physio on her back that helps with the pain but won’t do anything for the curve. Luckily, the curve is still stable though.

She hasn’t heard back from Britain’s Got Talent which means she didn’t get through. She is fine about this though as she just loved the day out and wants to try again next year.

Courtenay has been a bit upset the last few weeks as her favourite auntie has just been diagnosed with colonic cancer and Courtenay found out about it and is really confused by it.

Unfortunately I have also had to have a lot of visits to hospital this last month. I’ve had lots of PET scans as my consultant is very concerned about a new tumour on my knee.

Tyanna has also had to see a specialist as they said the tumour under her ribs is a plexiform (which can be a rarer side effect of Neurofibromatosis) and is in danger of growing larger. They said that her NF will probably be more severe like mine but I will cross that bridge when I come to it. They don’t think it is safe to remove because of where it’s situated and don’t want to do a biopsy as they don’t think it’s sinister and think because of her learning difficulties she won’t stay still for a MRI scan.

Update 24th November 2011

Courtenay has had an up and down past 2 months. Her pain has returned and the meds are not really helping. She has also been plagued with infections and illnesses, having one on top of the other. She currently has a nasty chest infection on top of a water infection. This is leaving her so lethargic and she is sleeping all the time. It is so out of character for Courtenay as she is usually a bundle of energy.

She has settled well into Comp and made lots of new friends and has become quite popular. She has been put forward to be part of the school council and in her election speech she told them she wants to me the next Martin Luther King! She was also part of the school Stars in Their Eyes competition – she was entering as Adele but sadly on the day of the competition she came down with her latest infection.

Earlier this month she went for an audition for Britain’s Got Talent. She had a fantastic day and whether she gets through or not she really loved the experience. If she is lucky enough to get through we will know by the end of January and if she doesn’t it will be in March.

She has been having the physio which is helping a little but she is often in pain for a few hours afterwards. She is also taking part in a scheme for healthy eating. She is doing really well in this and has lost half a stone which is doing wonders for her confidence.

Thanks everyone who has taken the time to write and send gifts to the children, it’s really appreciated. Sorry if they can’t always write back. The balloons put a big smile on their faces and was so lovely to see when they opened the boxes and a lovely balloon floated out.

Update 4th September 2011

Courtenay has had a good month and has just come back from a lovely holiday in Kusadasi in Turkey. We almost didn’t have a holiday at all because 6 days before we were due to fly the company we were with went bust. We had to book another holiday and pay again though we will be getting most, if not all, of the money back.

On holiday she spent most of her time in the pool, which is excellent physio for her and eases her pain a lot. While in Turkey she made lots of friends, especially a Turkish/Irish girl of the same age, they both broke their hearts when they had to leave but have promised to keep in touch.

Everyone we met there instantly fell in love with Courtenay saying that she was the funniest little girl that they’d met with the biggest smile and that she should be on stage! Even the Turkish loved her and would always stop her when they saw her for a chat; one even said that if he ever had a little girl he would want her to be exactly like Courtenay!

The holiday was event free and there were no doctor or hospital visits – this is what usually happens on holiday with Courtenay! The worst that happened was a cut foot!

It took our minds off all of the doctor and hospital visits that we knew we had to come back to. Tyanna has an appointment about her tumours on 8th September, Courtenay a follow-up on 12th and I go down to London on the 28^th.

Courtenay has also asked if she could enter Britain’s Got Talent this year. She has a lovely singing voice so I filled the application form and sent it off. I will keep you posted on how she does.

She is due to start Comp tomorrow; she is very excited but very nervous at the same time. She looks very grown up in her uniform and very smart too!

Lastly, thank you so much for all the letters, cards and gifts, which were sent to the children. The stationary came in very handy for them going back to school and Courtenay has her Liverpool set all packed ready for tomorrow. The Dottie letters are a definite hit with Cameron and Tyanna, they love hearing about her adventures and always recognise the envelope that they come in.

Sorry for the delay in thanking for some of the letters as we have had no access to her PO box address for the last 7 weeks. Thank you again, everything you do is so much appreciated by the whole family and we love seeing the smiles on the children’s faces.

Update 9th August 2011

We have received some worrying news about Courtenay’s sister Tyanna this month. She had a scan as there looked to be a lump under her ribs. The scan showed 3 tumours and another on her head. These are causing her a lot of pain, though she rarely complains and uses it to her advantage thinking we can’t tell her off for being naughty! There is a high probability of them being benign and they most probably are. It is just the 10% bit that worries us. I also feel guilty for passing it on.

On the good side though, Courtenay has had a good few months. Her broken fingers have healed well. She is still waiting to see the specialist for bone density scans and tests. She has coped well with the pain and is doing really well. She has been away with my parents to Aberystwyth and wowed the other holiday makers with her singing. We are due to go to Turkey tomorrow for 2 weeks after losing the first holiday when the holiday company went bust.

She is also starting a diet and fitness children’s course in September. It is her own choice because she is being badly bullied due to her weight gain from her medicines. Some children are so cruel and it breaks my heart to have her sobbing in my arms about it. She is looking forward to doing it though. I’m going to do it with her as I could do with losing weight. The rest of the family are going to support her too.

Update 26th June 2011

Courtenay has had a good month or more. She is still in pain but that is usual for her. She enjoyed a lovely week with her Grandparents at their caravan in Aberystwyth. It’s quiet there and the peace does her the world of good.

She had another accident that landed her in A&E with as badly sprained arm. They are on first name terms with her now because she is up there so often! She enjoyed coming from there with a sling as it got her out of writing in school for a few days!

She was gutted that she missed the Post Pal party this year, she was torn between there and going with a trip with the PLG, as it was the last year that she would have been with some of her friends, as she is going to Comp in September. She was chuffed to know that she was missed. Cameron and Tyanna had a wonderful time there and Courtenay thought the caricature of Tyanna was fab and wished she had one herself! She had a lovely time at the PLG though.

She saw her back specialist on 28th and he noticed that she was developing in a bit of a hump on one shoulder. He isn’t too concerned at the moment but wants to keep an eye on it. On the good side though there is an improvement on her neck and she is able to hold her head up straighter than she could. She has been given exercises to do to improve it. It is painful for her to do this but she is getting results so she pushes herself. We have been given other physio exercises to do at home and we’re still waiting to see her physio again.

Thanks to everyone who sent mail to the children as it is always greatly appreciated. Tyanna loved the birthday cards with her name on, she showed everyone as we can’t find things with her name on unless it’s specially made. Cameron and Courtenay loved their personalised things too.

Also, thanks for such a wonderful party, so much work must have gone into it and we were made to feel so welcome.

Update 26th April 2011

Courtenay has had a good month. She hasn’t had many sleepless nights due to pain and it has been really manageable this month. She had an accident a few weeks back though. We had to take her to hospital and at first they were going to operate because they thought that she had broken the eye socket. As they were looking for a bed, another maxio facial doctor examined her again and luckily found that there wasn’t a break there. They could not rule out a hairline fracture until the swelling had gone down and the bruising subsided though. She had to visit the hospital every other day for a week and half.

Sabina Gatland and the girls from Sandwell Academy in West Bromwich arranged for Courtenay and her Dad to go to a Liverpool and West Brom match, along with a overnight stay in a hotel with breakfast included. When they arrived at the hotel there was a prezzie waiting for Courtenay, it was a big signed picture of Steven Gerrard, she was over the moon. Courtenay loved every bit of the match and even though Liverpool lost she couldn’t have cared less!

Last weekend we took the children to Swindon for a weekend meeting of other people who have the same condition (neurofibromatosis). It was really good for her because apart from me and her sisters she had never met anyone else with the same condition. She had a lovely time and made lots of friends, the group meets up every 3-4 months so we will be going back in July.

Thanks to everyone who sent the children cards and prezzies. They had a lot of fun planting the seeds too.

Update 6th March 2011

Sorry that I haven’t updated for a while, we have been rushed off our feet with hospital appointments etc.

Courtenay has had her kidney and bladder scans plus various blood tests that we are waiting for the results of. She’s had her routine appointment with her paediatrician who is referring her for other tests. Firstly to a dietician because Courtenay has put on a lot of weight in a short time even though she is eating healthily and the same amount as her siblings. He thinks that she may be retaining water so he wants to make sure of that also. Personally, I think it is because she can’t be as active as she used to due to the back, neck and leg pain from her scoliosis. It limits her a lot which can be really upsetting for her. He has also referred her back to her physiotherapist for help with exercises that may help her pain wise. He has also suggested that she goes back to see her clinical psychologist that she used to see for her behaviour and ADHD because she has started to get extremely angry again. It isn’t unsurprising with all she has to cope with, as myself and two of her siblings have NF as well and her brother has Aspergers. It’s a lot for her to cope with along with her pain, appointments etc.

Something happened last month that made Courtenay’s year, she had a letter from Sabina G and the year nine pupils at Sandwell Academy. They offered 2 tickets for Courtenay and a parent to the Liverpool and West Bromwich match and they also included overnight accommodation. I was really made up with this as Courtenay’s face was a picture; she hasn’t shut up about it since!

Thanks also to everyone included in the Dottie project – Tyanna and Cameron received their Dalmatian and they decided to call her Poppy.

Thanks to everyone else for their kind words and letters sent to the children. I cannot thank you enough.

Update 21st January 2011

Courtenay has had an ok month; she hasn’t been in too much pain and has only had a handful of sleepless nights.

She took part in her school play and did really well in it. She had a really good school report and the teacher informed us that she is really bright. On the down side though, she finishes her work too quickly and then gets distracted and bored.

She went to her Aunt’s party last week and went up on the stage with the singer and sang solo. We found she has a lovely singing voice and hit all the right notes. She sung Journey, Don’t Stop Believing (her favourite song).

She had her kidney scan earlier today to find out why she keeps getting infections. Her kidneys are fine but they said that her bladder isn’t emptying properly and is retaining urine and that is why she keeps getting infections. She has written to our GP with the results and we will know more then.

She is due to see her paediatrician on 25th February so I will let you know how it goes.

Thanks again to everyone who sends messages etc as they make such a difference.

Update 2nd January 2011

Thanks to everyone who sent post this Christmas, the children are getting around to sending thank you letters to those who left addresses and Tyanna especially loved the reindeer letters. Thank you for everyone who posted, it was so generous of you. The children loved their parcels and Courtenay was so thrilled with all the Liverpool FC items that she was sent. I cannot say thank you enough.

Update 22nd December 2010

Courtenay has been feeling a bit better this month, though she has had yet another infection and has just finished her fourth lot of antibiotics in 5 weeks. She has now been referred for kidney scans and we are unsure how long she will be on the waiting list for.

Her sister Tyanna has had a brilliant recovery from her burns, they looked terrible at first but looking at her now you can hardly tell that she’d had an accident. She has one more appointment now and will then be discharged.

Courtenay is still in pain with her back, neck and legs but all we can do for that is to make her comfortable and give her pain relief.

Courtenay took part in her school Christmas concert and had the part of a rapper, she was so funny and had us all in stitches.

Courtenay has been upset this week as her Great Uncle passed away on Monday. It was a sudden death and not expected because even though he was in his 70’s he was in good health and full of life.
Thank you very much to everyone who sent the children cards, Reindeer letters and Elf parcels, it is so much appreciated by us and the children that you have taken the time and effort to do this. They are all sitting under the Christmas tree ready to open on Christmas morning.

Thank you all again and have a lovely Christmas from Courtenay P and family xxxxxx

Update 21st November 2010

Tyanna, Courtenay’s little sister, had a very nasty accident yesterday. She ran into the kitchen as Andrew was making burgers and he tripped over her and hot fat tipped over Tyanna’s face, chest, arm and shoulder. We are devastated. I managed to treat her in the house until the ambulance came. I put her under the cold shower but she couldn’t tolerate this and was starting to go into shock so I wrapped her in wet towels. She was then transferred from our local hospital to one with a specialist burns unit. They were concerned because the burn on her face was over her left eye and they were worried about damage to it.

At the hospital she was examined and we were told the burns to her chest, shoulder and arm were superficial, but the burn on her face was a little worse. They said that the water and wrapping in wet towels helped the burns from getting worse. They think that the burn on her face is going to leave a scar. We are devastated for her because she has such a pretty little face and her Dad is heartbroken and feels so guilty. We have to take her back to the burns unit on Wednesday where we will know more.

Whew, this has been a horrible month with Courtenay’s illness too and I’ll be glad when it is over, though Courtenay is almost back to normal now.

Update 10th November 2010

Courtenay has had a really bad month this month. Her pain has got to the point where she has it by day now, as well as the sleepless nights. She is sobbing in pain now most days and all our GP will give her is Nurofen medicine because she has a problem swallowing tablets. The medicine is useless and doesn’t relieve her pain at all. She is not due to see her paediatrician for another 2 months or orthopaedic doctor for another 3 months. I have been trying to get them to rush another appointment through for her. Our GP isn’t much help because I don’t think he really understands her condition as ours is the only family with Neurofibromatosis on his books.

Courtenay is still really brave though and tries to carry on as normal and fights against the pain to try and play sports but sadly she pays for it later as she is in agony after.

It was also upsetting for her because I was taken into hospital with complications due to my NF. Courtenay is very close to me and found the separation difficult and worried about me with the drips etc. It was really difficult but I asked her Dad to keep her away because I hated seeing her upset by them.

The children loved making the designs for the Post Pals Christmas Cards and it was a project that they managed to do together without fighting!

On the good side though Courtenay won an award from the teacher for her language skills, and her reading and story writing is about 4 years above her age. She has assured me that she is going to be an author when she grows up. She also came first in her Halloween competition and she was thrilled about that.

Thank you so much again for all the post, parcels etc that are sent to the children. We can’t thank you enough; they make a big difference in the children’s lives.

Also, God bless Jaz. Heaven has gained another angel. My deepest sympathies are with the family; my prayers are with you all. Fly High Jaz xxxxxxx

Update 6th October 2010

Courtenay has had an up and down month both physically and emotionally. She has had a return of the severe back pain and has had some sleepless nights. All we can do is to comfort her and give her pain medication. She has also started to have headaches; I am hoping that her NF isn’t going to affect her the same way as myself because I have severe migraines from it. The GP has told us just to keep an eye on things for now and to go back if things persist or worsen.

Courtenay’s best friend has been critically ill with a bad form of Meningitis and this affected Courtenay a great deal because they spent a lot of time together and Courtenay couldn’t understand why she wasn’t allowed to visit her in intensive care. Luckily she is now making a good recovery.

Courtenay also loved to use her bike when the pain allowed her to, but sadly it was stolen from outside our door and Courtenay was heartbroken over it. We bought Courtenay a new bike for her birthday which she was thrilled about but she hasn’t been well enough to use it yet.

A massive thank you for all the letters, cards and gifts that Courtenay and her siblings received, they love reading the letters and feel so important to receive them.

Update 7th September 2010

Courtenay has had a really good month. We have just come back form a 2 week holiday in Turkey. Courtenay really enjoyed herself; she spent most of the time in the pool which eases her back pain a great deal. She is really becoming a strong swimmer and loves the physio exercises we sneak in also! This is the first holiday in 5 years that she hasn’t ended up at the doctor’s surgery or hospital. It was a close call for me though after a nasty Sea Urchin sting!

Thank you so much everyone for all the lovely gifts and letters – sorry for the late reply but we have been away. The children also LOVED their pillowcases, thank you so much to everyone involved.
Courtenay is pleased to go back to school; it is now her last year in Juniors before Comp next year. Also, we are really proud of her sister Chelsea who passed all of her GCSE’s and has just started 6th form to do her A levels.

Update 10th August 2010

Courtenay has had a good month, she saw her paediatrician who says that everything is ok for now. Courtenay is waiting to be referred for hearing tests because we find that we have to say some things over and over before she answers. Firstly we thought that it maybe stubbornness but her teacher expressed a concern about Courtenay’s hearing.

We are frustrated about the bone density tests because the paediatrician is no longer referring her for them. It’s difficult because that doctor doesn’t specialise in NF and wasn’t taking our concerns seriously. Courtenay has had 4 breaks in 2 years, the last she woke up in bed in the morning with.

Last week I saw my own NF specialist in London and I asked about Courtenay’s breaks and if there could be a link with NF. She says yes definitely because in NF bones are more brittle and thinner. She is now trying to refer Courtenay to a NF paediatrician at Guy’s hospital.

Courtenay had another accident the other day, she caught her finger and ripped the nail off, so she had another visit to hospital. She is very accident prone but the clumsiness is due to NF (or so we have been told).

We are all going to Turkey for 2 weeks on 14th August so we are hoping for our first holiday without a hospital or doctor visit with Courtenay. Our holiday insurance is well used!

I am so glad that fellow Pal Jon Paul is showing signs of improvement. Jon Paul, I think you are an inspiration to us all.

Update 11th July 2010

Courtenay has had a much better month this month than the last. She has still been in a lot of pain some nights but has coped much better. She is still waiting for an appointment to see someone about doing bone density tests to see if her bones are more brittle than usual. She has had 4 broken bones in 2 years which is a lot and they have broken so easily – the last her toe she broke during her sleep and even she doesn’t know how she has done it. Apparently some people with NF can have more brittle bones than usual.

Courtenay is due to see her specialist on 3rd August – she was due on 27th July but the date was postponed by the hospital.

We all loved meeting you at the Post Pal party last month; it was so nice to put faces to names. We all had such a lovely time and we can’t thank you all enough for making us feel so welcome.

Courtenay has had a lovely break with her Grandparents in Aberystwyth and it did her the world of good, she really had a lovely time. We had to collect her a few days early because she was going away with the school the day later, so she came home on the Thursday. I only had one night with her and then she was away again. Thank goodness though this was only for 2 nights!

Thank you so much everyone who sent the children letters – Sarah H, Fleur R, Jodie, Sarah G, Seth, Kate W, and Susan C. Courtenay also had a letter from St Joseph’s Catholic College in Swindon. The teacher, Liz Howell, had heard about Post Pals during a Year 7 assembly. They thought it would be nice to write to a person on Post Pals and said that they chose Courtenay because she didn’t live too far away from them. Lots of the students wrote to Courtenay. So thank you to Liz H, Mileigh L, Mitchell S, Kyle, Megan Louise P, Gaby, Gino, Reagan, Lionel P, Angel L, Sebastiao, Olavo, Aneshka S, Jay, Macvil, Rosalia and everyone else at Post Pals.

Update 22nd June 2010

Thank you everyone for Tyanna’s cards and gifts. To LAURA – Tyanna loved the princess gifts, she’s a little Diva!

Hopefully we will see you all at the Post Pals party on Saturday. We will do our upmost best to get there. It is a long way for us (an 8 hour round trip) and Courtenay has not been well this week, but I’m sure this will cheer her up no end.

Update 8th June 2010

Courtenay had an appointment with her orthopaedic doctor today. She had more x-rays of her spine because he is concerned that she is developing a hump on one side. The x-rays show that the ‘S’ shaped curve is stable and hasn’t got any worse. There is a curve the other way that he wants to keep an eye on, but is happy with at present. There is nothing he can do to help with the pain and he said that we just have to give her paracetemol, which don’t really help.

He is unsure weather the reason for her head tilting is muscular or because of the scoliosis. I just wish they could make their minds up because one doctor is saying one thing and another is saying another thing.

She doesn’t have to go back to see this doctor for another 6 – 12 months. Luckily though, she smiles and jokes through it all.

Thanks for all the parcels and letters sent to Courtenay and her siblings, they really love reading the letters and cards.

Update 11th April 2010

Sorry we haven’t updated for a while – I have been at the Royal Marsden Hospital in Surrey for an operation.

This hasn’t been a good month for Courtenay as she has been in a lot of pain and we are waiting for her to see someone about it. I have also had lots of hospital appointments in London which is a 4 hour drive each way from where we live and I am gone all day for them. This has had an affect on Courtenay because she is aware of something going on. I have also been an inpatient at the Marsden and Courtenay has missed me a great deal and because it is so far away from us she has been unable to visit, but we kept in touch by telephone so that helped a little.

Courtenay has also broken another bone (her little toe) and we are asking for bone density tests or something similar to be done. This is the 4th bone in 2 and a half years. We are unsure weather the NF could have something to do with it as she hadn’t even bumped her foot, she just woke up with it hurting and x-rays showed the break. She loves the crutches though.

Thank you for the letters and gifts that have been sent to the children, you have no idea how much a letter cheers them up. Thanks so much everyone.

Update 12th February 2010

Sorry I’ve not updated for a while but Courtenay has had a really good month. She is coping with the pain a lot better and doing lots of after school activities. She is coming on really well at school and has none of the learning difficulties that can be associated with NF. She still has lots of visits with her physio but is at last seeing an improvement.

Thank you so much for the birthday cards etc for Courtenay’s siblings, Chelsea and Cameron. They loved them. Thanks also the Valentine gifts; they were a lovely idea too.

Thank you very much from us all.

Update 20th December 2009

Courtenay has had an up and down month. She has had another bad episode of tonsillitis and other infections. She has been sick a lot and missed a lot of school.

She has been in a lot of pain with her back but due to other illnesses she has been unable to go to her physio.

She was chosen to be a monkey in the school play and she was very funny doing her monkey dance and had the audience laughing.

She was picked to sing in the school choir and visited churches and nursing homes to sing carols.

She is due to see her specialist on the 23rd December. We will update you on that in the next update.

Also thank you very much for all the cards and parcels that have been sent to Courtenay and her siblings. They loved the elf and reindeer letters, its adding to the Christmas magic and excitement for them.
So a very big thank you to everyone and we wish everyone at Post Pals and all of Courtenay’s friends a very Happy Christmas and a very happy New Year.

Update 4th November 2009

Courtenay hasn’t had a good month. She had her arm put back in plaster due to breaking her thumb and she had the plaster off last Thursday. She has also had tonsillitis as well so she’s had a bad month.
A big thank you to all the gifts and cards that Courtenay has received over the last couple of weeks, especially those from overseas.

Since Courtenay has been back in school she’s been doing really well, although she doesn’t like her new teacher.

Tyanna has gone Micheal Jackson mad. When she gets up in the morning and comes home from school, she switches MTV on and sits patiently in front of the TV until his records come on. When they come on she dances and sings. Last Friday i took her, Cameron and Courtenay to see the new Michael Jackson film “This is it”. The cinema was packed (of empty seats) there were just six of us in the cinema. We as a family are getting a bit fed up now because Tyanna has told us that she wants to marry him as well!

Chelsea is in her GCSE year and says that she’s going to stay on a year, but we’re not sure what she wants to do for a career. Maybe she will decide what she’s going to do before September.
Thanks again for all your support where Courtenay is concerned.

Update 19th August 2009

We hope that everyone is having a great summer holiday and enjoying themselves.

Courtenay’s holiday started with a bang as she finished school on the Friday and broke her arm on the Saturday, so the best part of the Saturday night we were in the local A+E department having her arm set in plaster.

As she was due to go on holiday with her grandparents, she was worried that she wouldn’t be able to go in the swimming pool, but the doctor told her the plaster would only be on her arm for three weeks. She was vey happy about this. Three weeks later, as promised by the doctor, her plaster came off. She was told that it was only slightly broken but she needed to take care with her arm for two weeks.
I took Courtenay and her grandparents (plus their dog) to the caravan park. Courtenay had a fantastic time doing everything that she wanted to do, such as swimming and dancing. She even did kareoke. On the 15th of August i took her eldest sister Chelsea up to the caravan for the night, as we thought it would be a good idea to go up the night before i brought everyone home because of the travelling distance.

Hope everyone enjoys the rest of their holidays.

Update 20th July 2009

Courtenay has had another fall and broken her right arm. She did it on the first day of the school holidays. Sadly she can’t go into any pools etc.

Update 6th July 2009

Courtenay had an accident on the third day of our holiday in Bulgaria. She ran through the patio door as there were no safety stickers on the windows or patio doors. She ended up cutting all her knee and elbow which resulted in her using a wheelchair for the last 10 days of the holiday. Courtenay didn’t enjoy the rest of the holiday at all.

She was rushed to the nearest paramedic station where she had her cuts seen to and glued and bandaged. She would have had them stitched if she hadn’t been so stressed. When she got back to the hotel there was no concern about her injuries. We were presented with a bill for the window (300 levs) which we weren’t happy about and we also had to pay out for the hire of the wheelchair. We are claiming back medical bills from the insurance.

Before this happened Courtenay was a very happy child who was in the pool all day and running around with the friends that she had made. After the accident, she was in a wheelchair for 10 days and she was bored because she couldn’t run around and do what she wanted to do.

On the plane back home we were diverted to Birmingham due to pilot error – he basically overshot the runway. Courtenay was allocated an extra two seats due to her injuries, but ended up having one extra seat. She had to sit with her legs across Sharon which wasn’t comfortable for either of them at all and we finally got in to Cardiff 5 hours later via bus.

Where Courtenay’s back is concerned, she is attending physio to strenghten the musles. She has to go back to Newport to see the specialist at the end of the month, so i will keep you posted.

Last Saturday, Courtenay, Chelsea, Cameron and Tyanna, were involved in the local carnival. Chelsea and Courtenay were lady in waiting and flower girls on the head float. Cameron and Tyanna were dressed up as pirates on the third float and they all looked fabulous in their costumes.

A big thank you to all of the support, letters, etc, that Courtenay and the rest of my children receive from Post Pals.

Update 15th June 2009

We have just arrived back after 2 weeks in Bulgaria with Courtenay and her siblings. We had a horrendous time as Courtenay ran through a glass patio door that she thought was closed because there were no warning stickers on it. She suffered bad cuts to her knee and elbow and she had to be rushed to hospital and then return daily for treatment. She spent the last 11 days of the holiday wheelchair bound and couldn’t enjoy the beach or the pool etc. I felt really bad for Courtenay because she was so looking forward to this, but she is also lucky as it could have been a lot worse.

Update 20th May 2009

Courtenay has had a great deal of pain with her back and neck this month and because of this her behaviour is beginning to deteriate. At her hospital visit we were advised that Courtenay should have a series of physio therapy sessions to try and strenghten her back muscles. If this fails then Courtenay will have to have an MRI scan. After that we will be told what treatment she will be having. Due to this constant pain she has been advised to finish football and she didnt like that news at all.

Courtenay has been very excited the last couple of weeks because we’re going as a family to Bulgeria for 2 weeks. She has been trying to organise the areoplane seeting arrangements.

Courtenay’s mam is very nervous at the moment because she doesn’t like dentists and she has to go to the University Hospital of Wales to have a wisdom tooth removed tomorrow.

A very big thank you to all of Courtenay’s friends on Post Pals for all their support, love and best wishes.

Update 6th May 2009

Courtenay has not been well this week and is home from school because she has had a very bad chest infection and been staying in bed mostly. It has knocked the stuffing out of her leaving her with no energy.

Her doctor has also told her that she can no longer play in football matches. This has greatly upset her because she was so limited as to what she was allowed to participate in. On the good side, he has told her that she can take part in light practices but has to refrain from the match at the end of practice.

Update 13th April 2009

Courtenay has had a good month, although her behaviour is deteriorating due to the pain she is in. Courtenay has to go back to the hospital on the 24th April to have a further check up. Hopefully we will find out what is happening with treatment this time.

We are trying to keep Courtenay as active as possible. If the weather is fine she goes to her friends and plays on the trampoline or Sharon takes her for walks etc. Courtenay’s sister Tyanna has started Brownies too and enjoys it very much. She is only five and gets tired very easy though.

I took Courtenay, Cameron and Tyanna out on Tuesday. They didn’t know where they were going. I told them we were going to get Sharon’s birthday present. They soon changed their attitude when I pulled up outside KFC. The three of them enjoyed it very much and they enjoyed Adventure land even better. Courtenay has had a fairly good school holiday so far and hopefully the rest of the holiday will be just as fine.

Thank you to everyone for their kind support regarding Courtenay and a happy belated Easter to you all.

Update 1st April 2009

Thank you very much to Sarah Gilligan for your lovely letter and activity packs, it was very nice of you to think of us. It will give us lots to do over the Easter holidays.

Update 26th March 2009

Thank you to whoever sent Courtenay the teddy bear. She has been in so much pain this month and having a hard time of it. She’s needed lots of cuddles. The teddy bear really cheered her up.

Luckily, complaining about her postponed appointment did the job for once and they have rushed her an appointment through for the 27th. I will keep you posted with the results.

Update 17th March 2009

Courtenay has had a problematic month which has affected her behaviour. She has been suffering from a lot of pain in her back and neck. The specialist in Newport had to cancel Courtenay’s appointment because of annual leave. This appointment was pushed through as a matter of urgency because of the pain that Courtenay is having. We were told that a new appointment would be sent out as soon as possible. Both Courtenay’s mother and I were very annoyed over the matter and we made a complaint, so hopefully we will hear something soon. The scan that Courtenay had on her tummy went ok and we will know the results when she sees the doctor.

Courtenay’s Nan has bought a new puppy which they’ve called Taffy. Courtenay has spent quite a lot of time at her Nan’s since the new puppy arrived. She loves having the puppy on her lap and stroking it. The puppy was allowed out for the first time last week. It is getting carried more than it is walking at the moment. I think it will be a different story when the puppy gets bigger. Sharon went out and bought it some squeaky toys last week – they will drive Sharon’s father mad. Sharon’s father was also taken into hospital at the weekend which upset Courtenay very much.

Update 3rd February 2009

Courtenay has had a good month considering she is in a great deal of pain with her back. Although she is in pain, Courtenay is trying to keep as active as she can by playing football. She has an ultrasound on 13th February in Caerphilly hospital. We will let you know the results as soon as we receive any feedback from the hospital.

Courtenay, Cameron, Tyanna, Sharon and I, went to see Aladdin with the school to Cardiff’s New Theatre. We had brilliant seats and we all enjoyed it. Peter Barlow from Coronation Street played the part of Jafar the evil Wizard and he did a good job as well. The pantomime was in 3D which was very effective; it made us jump in some parts of the play, but we all enjoyed it just the same. We got home to New Tredegar around 6.00pm and very tired.

Courtenay is doing really well in school, especially with her reading. She is in front of the rest of her class in this subject. She gets on very well with her teacher and he always has good things to say about her. She is also doing really well with her violin class in school and she was very excited when she found out that Sharon and I had bought her a violin of her own. A couple of weeks ago, along with a few of her class mates, she entered a dance competition which was held at her elder sisters Comprehensive school. She did very well and they are supposed to be doing another one shortly.

On 31st January we went to McDonalds and then we went to a local Kids Adventure Land for Cameron’s 7th Birthday. Courtenay, Cameron and Tyanna were very tired when they got home, but they enjoyed themselves very much.

A big thank you to all of Courtenay’s friends at Post Pals for all their support love and letters.

Update 1st January 2009

Courtenay has had a much better few months. The pain has not been so bad and she has handled her emotions much better.

At the beginning of December she had an appointment with her paediatrician. The doctor thinks that it is important for her to have an ultra sound scan on her kidneys. She also needs another type of scan to check for tumours in her tummy. The doctor is also trying to rush her spinal doctor, due to the decline in her condition. She has also recommended that we and Courtenay take another course with Courtenay’s psychologist.

Courtenay has had a very busy and exciting month. She was fantastic in her school play. She had the part of cuddly dog. Courtenay also had another concert with her Brownie troop. She was dressed as Elvis and we all fell about laughing at her in her outfit. She even borrowed her sister Chelsea’s guitar to look the part.

Christmas was a very busy day in our house hold. Courtenay woke the entire family at 4am and would not go back to sleep. We eventually gave in to her nagging at 5:45am. Courtenay was thrilled because she had a laptop and Wii from Santa; we hid the laptop until later on in the day.

For New Years Eve we allowed her to see in the New Year but this backfired as she got wound up and didn’t go to sleep until 3.00 am.

Courtenay’s parents would like to thank all of the Post Pals that sent Christmas cards and gifts to both Courtenay and the rest of her siblings. The children loved the letters from Santa’s reindeers as it helped to keep the magic alive and build up the excitement until Christmas day.

HAPPY NEW YEAR to you all!

Update 22nd December 2008

Thank you everyone so much for the lovely cards, letters and gifts that were sent to Courtenay P and her siblings. They especially loved the letters from Santa’s reindeers. It is keeping them so excited. I’d like to wish everyone a very Happy Christmas and lots of prayers for everyone.

Update 8th November 2008

This month has been both up and down for Courtenay. She has been in a lot of pain this month due to her scoliosis. The pain has been very intense which has caused Courtenay to lose sleep and this has been very difficult for her.

In turn, understandably, this caused her behaviour to deteriorate which has caused her to be very aggressive and bad tempered towards her siblings.

To give Courtenay and her siblings a break she went to stay with her Auntie for a couple of days which she really enjoyed.

This month also has ups. On October 3rd Courtenay celebrated her 9th birthday. She enjoyed reading the letters and cards that she received from Post Pals. She even took them to school to show her friends and teacher.

She had fun at her school Halloween disco. She dressed as a little devil and looked very cute in her outfit.

Thank you once again for your kindness towards Courtenay.

Update 30th September 2008

Courtenay’s had a very good month so far. She came back from her grandmother’s house in Northern Spain to rain drenched Cardiff. Courtenay started back to school and has got a new teacher. She doesn’t like him very much because he tells her off every now and then for getting her numbers the wrong way round (her number 5’s). I had a talk to her teacher this morning about the matter and apparently Courtenay isn’t the only member of her class that is having problems. Apart from that she is doing great. Courtenay is in the top band for spelling and reading and is getting on great with her school mates.

Courtenay is now in Brownies and two weeks ago, along with around fifteen other girls, she enrolled. This was a special enrolment because they had to enrol in sign language. This was a major achievement for Courtenay because of the complexity of sign language alphabet. She accomplished this with flying colours.

Two weeks ago Courtenay got to stay at her cousins on a sleep over. She enjoyed this very much because she got to stay up extremely late – until 3.00am. When she got up on the Saturday morning she had a chocolate breakfast, so she was most probably mental for the majority of the Saturday morning!

In football, her uncle Adrian (her football coach) informed me that Courtenay would make a fantastic winger because she is fast with the ball. She is doing really well in football and this year so far she has won two trophies. The way she is going we will have to have a shelf just for her trophies!

Sharon had to go up to Guys hospital in London on Thursday for her results of her biopsy. Everything was fine; in fact the doctor was very impressed with Sharon’s weight loss. Her weight was causing Sharon a great deal of discomfort, especially where the tumour is situated (in Sharon’s back). Her doctor is that impressed and happy with Sharon that she doesn’t want to see her for another nine months. Good news all round. The only problem that occurred was the transport side of things. Guys hospital would not supply Sharon any transport this time round and told her that she had to provide her own transport. This meant that Sharon had to get up at 4am to be in Cardiff to catch public transport to London. Sharon didn’t get back home until 10.30pm Thursday night which meant she was extremely tired.

Update 10th August 2008

We have just got back from Alcudia. We had a fun packed two weeks and went to lots of different places, such as the beach and hydro park. Sharon went paragliding while we were at the beach. This was my wedding anniversary present because it was something that she wanted to do and she enjoyed it very much. At the end of the first week Sharon and I took Courtenay and Cameron to Hydro Park where there were at least 10 different kinds of slides, a wave pool, and about 6 different pools.

Courtenay had a tough time during the second week because she had blisters on her shoulders. She had to stay out of the pool and sea for a few days until they dried up. We made lots of new friends and the weather was very hot. In the evenings we saw tribute bands to the Jackson Five, Spice Girls and High School Musical. The Jackson Five had Courtenay up on the stage with them and called her the sixth member of the Jackson’s.

On 24th August, Sharon and Courtenay are going back to Spain to spend two weeks with my mother and step father at their home. Courtenay is looking forward to this as she will be able to have one to one attention with Sharon and see my mother.

Thanks for all your support and friendliness towards Courtenay. She would like to thank everyone for their cards, letters and presents. She loves receiving it and reading her mail. She keeps it all in her keep sake box. She was also thrilled when Kim from the Nintendo magazine wrote to her (Kim also has Neurofibromatosis) and told her that if she drew a picture of her favourite Nintendo character she would print it in the magazine. Courtenay drew a picture of SpongeBob SquarePants and Kim kept her promise and printed the picture. We were all very proud of her. This was a brilliant achievement for Courtenay because she has never had anything printed before.

Update 12th July 2008

On 13th June Courtenay went on a school trip to Drayton Manor. She was so brave as she went on all the thrill rides and wasn’t the least bit scared. The only rides she didn’t go on were the ones she was too small for. She had a brilliant time and bought lots of joke gifts to play on people during the journey home, including fake snot and dog poo YUK!!

On 20th June I (Courtenay’s mum) had to go into hospital for surgery on my foot (a removal of a NF tumour). Luckily it was day surgery so I was home the same day. Courtenay was great trying to look after me; she was fetching things for me over the weekend. I was in a lot of pain and I had to go back to the hospital with a blood clot in my leg. Over the next week I was back and forth to the hospital for scans.
It was Tyanna’s birthday on 21st June and so Courtenay’s dad took them to McDonalds in Newport. From there he took Courtenay and her two sisters and cousin to a local adventure play centre. They were gone the majority of the day and Courtenay had a great time and let off a lot of steam.

On 26th June I had to go to the Royal Marsden hospital in London (which is a four hour car journey from New Tredegar) for a biopsy on the tumour in my pelvis. It was difficult for Courtenay as I had to leave her and she is very clingy to me. She had the driver in stitches when he picked me up.

Whilst I was in hospital Courtenay had another football presentation where she was awarded another trophy. It was presented to her by Darcy Blake who plays football for Cardiff City Football Club. He lives in the same town as us. Courtenay was very proud of herself and so were the rest of her family. Courtenay doesn’t let the NF and Scoliosis get her down.

We are hoping the next month will be a better one as currently I have to inject myself with blood thinners on a daily basis. We are awaiting the results of my biopsy from Royal Marsden too. Courtenay has really tried to look after me this month and she has taken it in her stride when she’s had to be left with relatives while I’ve been in hospital. She is excited about the school summer holidays and I’m sure she’ll be keeping everyone entertained and she hasn’t lost her smile.

Thank you to everyone for Courtenay’s post, you have been so kind and she is thrilled to receive it.

Update 4th June 2008

Courtenay has been thrilled with all the kind letters and cards that people have sent her. She has especially loved the handmade ones with her name on. It has been keeping her busy trying to reply to all the letters. She enjoys reading them to me and it’s also helping with her reading. So thank you for accepting Courtenay on the Post Pals site, it has been so lovely to see her face light up every time she has post.

On 7th May Courtenay had an appointment with her psychologist. There isn’t much she can do to help us at the moment because we insisted from the start that we didn’t want Courtenay to have medication unless we had a 100% diagnosis for the ADHD or things worsened. Now we don’t have to see her for 6 – 12 months because we decided to go along with the behavioural therapy option at home. We strongly believe this is better for Courtenay as she needs consistency.

On 17th May Courtenay’s brother, Cameron, had his official diagnosis for Asperger’s Syndrome. This didn’t come as a shock as his autism specialist already said she was 99% certain he had it and it was just a case of one more person going to see him in a school setting to confirm for sure. In a way it is a relief to get it in writing because we feel we have closure and know why Cameron behaves as he does. He is a lovely little boy just a little different. Rough play as other boys his ages do frightens him as he prefers his own company. It also helps because he can get the extra help at school.

On 19th May Courtenay played in a football tournament although she could only manage 2 minutes of play due to pain. Despite this, her team ‘The Wasps’ won the whole tournament and each child came home with their own trophy. Courtenay came into the house grinning from ear to ear, she was over the moon and we were so proud of her.

On 27th May Courtenay had an appointment with her paediatrician. She informed us that she was still unsure whether Courtenay’s behaviour is due to ADHD. We are frustrated at this as at the end of the day we’d like closure and a diagnosis for Courtenay’s sake. It’s not fair on her being shipped back and forth. Despite this she agrees that Courtenay does have very bad behavioural problems that she says are probably due to the Neurofibromatosis. She wants us to go to child behavioural classes which I refused. I’ve done about 5 so far; they don’t help and are not suitable for Courtenay because her behaviour is not always her fault. We find the behavioural therapy we did with her psychologist is far, far better for her. Courtenay thrives on one to one attention, we try our best with this but it is not always easy because having all 4 children with special needs and having a lot of problems due to NF myself, it is hard to split our time. Courtenay recognises when her behaviour is out of control and when calmed down she always apologises and feels really bad about it.

Courtenay started Brownies on 28th May. They were starting a group near us and she wanted to join although was a little concerned that it may be too girly for her as she is a tom boy! She is already a member of the scouts, football, youth club and after school club, so she is a busy little girl! She loved it though and it all her fears were quashed. Courtenay was the most chatty and energetic but her leaders were brilliant with her. They were trying to organise a summer trip out and asked Courtenay where she wanted them to take her and she said Spain! I’ve taught her well! She enjoyed the whole session and can’t wait to go back next week.

Evia S

Story written 2018

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