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Story written 2026
Aria started to suffer with DIPG symptoms in September 2020 but she wasn’t diagnosed until May 2021, on her birthday.
She had 13 sessions of radiotherapy and she regained her walking. She had a year of being an active normal child.
Sadly the tumour has started to grow again and she is having radiotherapy again. She is having 10 sessions.
Aria’s dream is to go to Disney. Maybe one day we can take her if she gets better.
Update 1st December 2022
“Our brave warrior, our baby girl Aria passed away peacefully surrounded by her family at 12:30am. We are absolutely devastated and we have no idea how we will carry on each day. But, we promise you that we will carry on for you. DIPG didn’t win, you won baby girl. You fought for so long. You now deserve to run free and be a little girl. We love you so much Aria”
Update 4th July 2022
Thank you to everyone who’s sent Aria and Paige letters and gifts. You have made both of them smile.
I’m sorry I haven’t been able to say thank you individually. Aria has been poorly after her radiotherapy and her tumour symptoms don’t seem to be getting any better. So she is struggling at the moment. Let’s hope and pray she will get better with time.
Thank you to everyone who have put a huge smile on Aria’s face. It means so much to us. You are all amazing.
Story written 2015
Frankie-Rose was falling more then normal and had sustained a lot of bruising. Countless trips to the GP were made where we were advised she had growing pains and without an examination they determined she was flat footed. On our 6th visit to the GP, a locum noticed she had coordination problems and sent us for a scan. An MRI showed she had acute hydrocephalus on the brain.
Within 24 hours Frankie-Rose was moved to Kings College for a life saving operation where a mass was found. Within a week she underwent more surgery where a biopsy was taken and she was diagnosed with a grade 2 brain tumour. She underwent 10 weeks of chemo, lost 19 kg, her hair and her spirit, only to find it was detrimental and the tumour had tripled in size.
We were advised radiation was our only hope and the NHS offered us conventional (but organ damaging) photon therapy where the risk of second malignancies are high. We started a ‘go fund me’ page and a miracle took place. Within 5 days we had raised enough money to fly our family to Oklahoma so she could receive proton therapy at ProCure. It is a much safer way as it targets the tumour site only and does not damage surrounding good tissue. She finished her 30th treatment today. She got to ring the bell and will attend a graduation ceremony on Wednesday.
My baby has the courage of a lion and I am very proud of her.
Update 3rd May 2016
Frankie-Rose and the boys have received some beautiful gifts and fantastic messages of support. A huge thanks for the love and support my children and I have received during a truly difficult time. Despite the awfulness we have wonderful memories. Frankie rose continues to improve, physically, mentally, academically and socially every day. She still has a fighting spirit and an infectious giggle. She loves music and dancing and will be spending her days performing xxxx thank you
Update 27th January 2016
Frankie-rose is making huge progress every day. She continues to dance and has just started swimming lessons. She is watching grease over over and is determined to be a pink lady when she grows up. She has taken a liking to tracy beaker. She still loves one direction and had the opportunity to meet them just before Christmas. She is back in school almost full time and her confidence is improving. Alfie continues to do well at school and has completed the cherub series thanks to the post pal who got him started. Freddie has just turned 7 and received some really lovely cards. Thanks to everyone at post pals for your continued support and efforts in making my 3 children feel so special.
Update 9th September 2015
Frankie-Rose is doing very well. She returned to school on Monday and after two half days, she begged to stay all day. Although extremely tired, she managed it and was very proud of herself. Tomorrow she will get involved in her first P.E. lesson in 12 months, so she is very excited.
Frankie-Rose has also started a course of physiotherapy and plans to return to dancing next week. She is lovely the hectic lifestyle after spending so long in hospital and is being (as usual) a real superstar.
The boys are loving the normality that comes with us all being home and have also enjoyed the return to school.
We went to the Isle of Wight last week and made the most of the beaches, with everyone making sand art from Alum Bay cliffs.
Thank you for the post the children have received.
Update 27th August 2015
We finally got home from hospital after 12 weeks on 3rd August and weirdly it was a year to the day she was diagnosed. After a LOT of unpacking and a fair bit of cleaning we have finally settled in.
We went to the Tower of London yesterday, we’ve been to the movies, bowling, park and swimming. We are going to the Isle of Wight on Monday so we have made up for the summer we missed out on.
Frankie-Rose turned 8 on the 15th August and due to Post Pals we were inundated with cards – they covered every surface of our home. Thank you! Fred recieved some lovely water related toys and Frankie got a full Hawaiian outfit which she plans to wear everywhere! She has received a lovely framed picture, jewellery, stickers, welcome home balloon, hand made cards, beautiful words and messages, and so much more. The pleasure she feels when the postman comes every day lights up the room. She has never felt sorry for herself, but receiving such positive messages fires her belief that she is truly special.
You made her birthday so much more fantastic and that in turn has warmed my heart. Thank you will never be enough, but from Frankie-Rose’s mum and dad, a huge massive THANK YOU and a big hug.
Update 9th July 2015
We are in hospital with Frankie-Rose and have been since 8th May.
Thank you so much for all our lovely post, receiving it makes it feel like Christmas.
Story written 2013
Sophie is a happy go lucky, always smiling, little bundle of joy (most of the time!). She enjoys doing all things little girls love, especially her swimming and dance classes. Sophie started school last September and joined her brother Jack, who is 8, at his Primary School.
During May 2012 Sophie’s parents noticed a tremor in her left arm and, after numerous hospital visits and finally an MRI scan in June, the family received the terrible news, 2 months before Sophie’s 5th birthday that Sophie has a ‘supratentorial high grade glioma, bilateral thalamic tumour’. This is basically an aggressive brain tumour located in a very awkward part of the brain. The family has been told that the tumour is inoperable and the prognosis is very poor.
Sophie has remained brave in spite of everything and has always kept a smile on her face. She has already had two operations to relieve the pressure in her head and now has a shunt fitted. After searching the internet and looking for a cure Sophie’s parents decided to try a clinical trial. Sophie received a course of radiotherapy for 6 weeks and now receives the trial drug Avastin every other week and Chemotherapy every 28 days for a 5 day cycle. An MRI scan just before Christmas showed the tumour has reduced in size by 47% which is amazing progress.
Sophie continues to be an absolute star during all her treatment and travelling to Southampton. She amazes everyone with her strength, determination, calm acceptance and above all her endless energy. We do not know if it’s the standard chemotherapy, trial drug, the homeopathic, the supplements, the healing or the prayers that are keeping her going but we shall continue will all of them and will fight every step of the way.
Update 26th November 2013
At just after 8.30 last night our beautiful butterfly passed away. She was with her family who will always love her and treasure the time they had with her. She was strong until the end and made the world a better place. No wonder God wanted her.
Update 13th November 2013
Sophie had a special parcel arrive today from a Elf. The Elf left no name but we would like to say a massive thank you to the Elf as it was so thoughtful and kind to think of Sophie and to send early. Sophie sadly had a seizure today but she since has loved having some of the lovely White Snowman.
Sophie is deteriorating on a daily basis now and we are having to try and face the reality that our little angel is slipping from us. We have always known that the chance of us winning this battle was slim but we never gave up hope. We still have hope but now it is hope that she will not face any pain or suffering as she fades.
The seizures have returned and the recovery time from them is increasing with Sophie struggling to regain a normal breathing pattern. In between seizures she spends most of her time sleeping and it is a real struggle to talk. When she is awake she is aware of her surroundings and when she does utter a few words they are coherent and she makes sense. She is still our butterfly but we are aware that her time with us is nearly over.
She has given me so much over my time with her and I know that I am proud, and so very lucky that I was chosen to be her father. She has endured things that no child should ever have to and always with a smile… and normally a song!
She is loved by so many but none more so than Gemma, Jack and myself, and we hope that she knows this and knows that our love for her will always be there.
Update 3rd November 2013
We would like to say a massive thank you for everyones continued post that both Sophie and Jack receive. Big smiles from both of them for the chocolate they received this week from a lovely lady who did not send an address. We are sorry we have not replied to everyone but Sophie is now very poorly and time seems to be fly past each day. As Sophie’s body starts to fade her strength and determination is amazing. We draw comfort from that she is currently pain free and happy. Thank you all so much.
Update 19th October 2013
Thank you everyone for Sophie’s and Jack’s post. We cannot thank you enough. I am sorry we haven’t replied lately. Sophie has deteriorated over the last month physically and can no longer walk unaided and is suffering from seizures. It is heartbreaking to watch our little girl fade but she continues to smile so we do too. She is making us so proud and her strength and determination is beyond words. Thank you all so much.
Update 14th August 2013
After a couple of very long days in hospital we finally brought our beautiful butterfly back to the island. The doctors confirmed that she does have shingles and a possible line infection however both are being treated and shouldn’t take long to clear up.
Sophie braved her MRI yesterday with her usual confidence and never ending smile and today we received the results. In a nutshell, Sophie’s tumour has doubled in size since Christmas and it is working its way up into her brain and down onto the brainstem. It looks at this stage that there is nothing more we can try on the treatment front, however, I promise you all we have not given up looking. We are faced with the very real facts that Sophie may well have only a few short months at the most.
We know our little girl is a fighter and has shown us a strength that I would never have believed possible and whilst we are in her corner battling every minute of every day we are trying to come to terms with the truth that it is a battle we cannot hope to win.
We are focusing on her birthday next week and beyond that on a daily basis making sure she wakes each day with a smile and ends it in the same manner.
Update 3rd June 2013
We have been so busy the last week that we have not sent our last replies. One of which was a massive thank you to everyone at Post Pals for the massive parcel that arrived full of exciting things. Sophie and Jack were so happy and it arrived after a long day at hospital so was a lovely surprise. Thank you so much for all your continued support.
Sophie has a MRI scan on Monday 10th June which happens to be 1 year to the day they scanned her on the Isle of Wight and rushed her by ambulance to Southampton. The day that changed our lives. But the doctors only gave Sophie 1-2 years, so she is doing amazingly well. The last scan 3 months ago showed the tumour to be a stable so we are praying that the results bring the same news.
Update 10th May 2013
Sophie is doing really well at moment. It is coming up to a year since she was diagnosed and with her consultants prognosis of only 1 to 2 years she is doing amazing and making us so proud. She continues on her Chemotherapy and trial drug Avastin and is due chemo all next week so we have our fingers crossed for a good week.
When not in hospital, Sophie is like any other 5 year old, she loves going to school and playing with her friends. Sophie really enjoys being outside and is looking forward to some nice weather so she can go to the beach.
We would like to thank everyone at Post Pals for being so kind to Sophie. She loves receiving post. Some lovely post arrives without return addresses and Sophie would like to say a big thank you to you all.
Update 1st April 2013
During March Sophie had an MRI scan to see how things were processing. We were pleased to be told the tumour is stable. The Consultant is very pleased with Sophie’s progress and the way she tolerates treatment. He cannot tell us how long the tumour will remain stable so we are making the most of every day. She will continue with her treatment of the trial drug Avastin in Southampton every other Monday and standard Chemo a week of every month. In between treatment Sophie is enjoying every day and even managing mornings at school.
Sophie now understands Post Pals and how fantastic it is. She looks forward to the Postman arriving and will try and read some of the post herself. Sophie and Jack have both had some lovely Easter gifts from some lovely people. Both have great fun writing and making things to return. The arrival of 2 of Dotties litter this month was also very exciting. It has been lovely to get some repeat post and getting to know some lovely people more.
Update 4th March 2013
We cannot thank everyone enough for all the kind letters, cards, notes and gifts that both Sophie and Jack have received in the first few weeks. Everyone has made them feel so welcome.
Story written 2012
Amelia is 4 years old. She started developing a noticeable wobbliness, her left hand was shaky, she kept falling over and her coordination deteriorated over a fairly long time. After several trips to the doctors and a blood test proved inconclusive we were referred to a paediatric consultant at our local hospital. She was seen on the 30th January and sent for an MRI scan the next day. We were told the news a few hours afterwards that she had a brain tumour, and discovered the next day that it was a fairly large brain stem tumour. A few days later we were transferred to the John Radcliffe Hospital in Oxford who have a dedicated neurology department at the Children’s Hospital.
A second MRI of her spine showed no tumour advancement to this area, and she was then operated on. The operation had two goals – one was to biopsy the tumour, which produced 4 tissue samples during the operation. The second was to try and remove any tumour other than the samples – which they were unable to do. After several days we were told that the samples showed a grade 2 Diffuse Astrocytoma, indicating that the core of the tumour was likely grade 3 or 4. We were then told that there was no chance of survival of a tumour of this type.
Chemotherapy and radiotherapy were offered, however we were told that a median increased survival of some 4 weeks was achieved after this treatment. We declined with the reason that we would rather spend quality time with our daughter than spend more weeks in hospital for such a dismal outcome. Amelia returned home unable to walk, she had speech problems, she was half paralysed and generally in a very bad state.
But she got better. Amelia showed us all how amazingly strong and brave kids can be, and after a few weeks we decided that we couldn’t sit and watch her die. The local community fundraised and sent Amelia to the Burzynski clinic in America. Treatment helped and the tumour became stable, and Amelia even managed to start school.
Sadly things did not remain stable and Amelia has deteriorated quickly. Today Amelia went to school for the last time, she was unable to speak as her speech has now gone, she is mostly paralysed, she can not sit up, she is loosing the ability to swallow and her breathing is getting worse. Tomorrow she will be transferred to a hospice.
Amelia has touched many people, both in her local community and around the world.
Update 6th January 2013
Amelia, our beautiful little girl, left us this morning at 9.50am, holding both our hands as she took one last breath. It was peaceful, quiet and without pain or suffering. Chantal and I had told her only minutes before that it was OK for her to go, to be free. Now she is.
Although there is a huge hole left in our lives, Chan and I will be strong and support each other through this awful time. Charlotte will have all our love as our daughter, and when she is older we can tell her about the amazing big sister she once had. Our hearts are shattered into a thousand pieces.
Thank you, everyone, for your love and support. Our lives will never be the same again.
Update evening of 5th January 2013
Amelia has slept almost the whole day. She has slept peacefully, only occasionally requesting a drink which we are able to get into her. She was awake for an hour or so at about 5pm which meant she could be with us at dinner time, and Chantal established she can eat cheese sauce and she ate lots of it. This is really good news as it avoids us having to put a feeding tube in.
Amelia is calm, so much calmer without the steroids. It appears they had passed the point of being effective so their removal hasn’t been drastic. The doctor believes we might now have a few days of stability and then a continued decline until the end. We don’t know how long but it might be another week. This is good news as it allows us time to talk to her and also be together as family without Amelia being in pain or discomfort.
Update 5th January 2013
We made the decision yesterday to not continue with Amelia’s steroid dose. This has two potential effects – one being that she will no longer be so hungry (she can no longer swallow anything really, just milk and little bits of chocolate) but also this will likely accelerate the effects of the tumour pressure inside her brain. Her quality of life is so poor that we made this horrible decision.
Amelia is now barely with us. We had more friends and family visiting yesterday, mostly for the last time. We are not sure if she will last the weekend but she has always been such a fighter and always amazes us. She is still the feisty, brave little girl inside, just trapped inside her body as it shuts down.
We know we don’t have long now, but the most precious time is being able to spend a few minutes each day whispering in her ear, telling her we love her, that we are proud of her, and that she is so incredibly brave. I know she is listening.
Update 3rd January 2013
We are settled in Naomi House, due to the deterioration Amelia is not expected to return home. We are exhausted but finally this evening we seem to have Amelia’s drugs at the right level. She has spent much of the day screaming with discomfort and frustration and there is only so much of that we can take.
Update 29th December 2012
Amelia is sadly losing control of her body and this has been causing a number of problems, and we had to urgently get her seen to at the hospital earlier. Fortunately, after a lot of effort, these problems are now under control. Amelia is calm, relaxed and I got a big ‘thumbs up’ from her again when I asked if she was OK. She was very tired and very spaced out, but OK.
Tomorrow morning we will go back into the hospice, how long for is largely depends on how Amelia does. It might just be for a few days and we then come home, or she might not come home at all. We just don’t know. She has definitely been getting worse over the last few days but it just depends if we can stabilise her again.
Update 26th December 2012
Christmas day went pretty well, we really tried our hardest to pace out the day so that Amelia didn’t get overwhelmed by everything. She gets easily upset and frustrated if too much is going on – but she did last the day pretty well. We had several relatives here to help and were able to relax a little during the day which was great.
By late afternoon we really noticed Amelia deteriorating, to the point where we were getting seriously concerned. We had stopped her steroid dose the day before and we were worried this was having a negative effect – so decided to give her a dose before bed and then repeat in the morning.
By late evening she was unresponsive, confused, gargling a lot and generally pretty bad. We got through the night, but by the morning she was really struggling going to the toilet so we ended up spending the morning in hospital (again!) and eventually got her to go after a lot of effort!
Sadly she does seem to have deteriorated somewhat, but we have increased the steroids again in an attempt to suppress this as much as possible. It is clear the tumour is getting to a critical point so we are just managing it as best as we can. Amelia has again become very aggressive and angry, we are unable to understand what she is trying to say most of the time, and she just gets angry when we keep asking her to repeat herself.
Update 23rd December 2012
Amelia has been pretty good – in fact probably better than we thought she would be at this point. It seems all the drugs she is on have done their job and she is comfortable, and we still get the pockets of time when she is chatty and responsive. She is definitely tired a lot of the time and this might explain why she is unresponsive at those times.
One of the really big difficulties of living with this is trying to establish what is the drugs causing a ‘temporary’ lapse in symptoms, and what are the symptoms showing themselves. It is a bit of hit and miss with this – sometimes we see things that are gone again after a short while, and some things have stayed, like the paralysis.
Amelia’s left hand side seems a lot better at the moment. She is using her hand to open presents and hold a straw, point to things and generally anything that doesn’t involve lifting things. It isn’t particularly shaky and we can only assume the steroids she has been on have worked. We actually stopped the steroid dose entirely today, so will be keeping a close eye on her.
Organising Christmas has been a tricky affair. We’ve got lots of help from family which has been brilliant, but everyone has been so nice and we just haven’t had the time or energy to do the normal card writing, present sending or all the other things you do at this time of year. Our lounge is full of literally hundreds of cards – many from people we have never met – and these have all made Amelia’s face light up each time one is opened. A big thank you goes out to everyone who sent us a card or letter via Post Pals. People truly can be so, so kind. One of them was a letter from a fairy, others had photos of Amelia or messages of support. We really do seem to have touched so many. Thank you, from the bottom of our hearts. You people are all amazing.
Update 18th December 2012
Thank you for arranging the post and the balloons (and maltesers!), Amelia and Charlotte have loved opening it all. We are going to be back home tomorrow afternoon for Christmas as they feel Amelia has stabilised. It is common with these type of tumours to have a rapid decline and then the child stabilises for a little while before the tumour grows again. We hope to have Christmas at home and then return to the hospice when needed.
Story written 2006
Jessica was diagnosed with an inoperable brain tumour on the 14th February 2003. Jessica then received three lots of chemo but unfortunately the tumour grew bigger so chemo was stopped.
We then had a meeting with the neurosurgeon who said that any further treatment would probably be a waste of time, but I could not sit back and do nothing, so Jessica had six weeks of radiotherapy and as a result of this the tumour shrunk by 95%. I am so glad that we didn’t take his advice because we know that Jessica would no longer be with us if we had.
Jessica’s prognosis is still uncertain but we still have her with us and we treasure everyday.
Jessica has a lot of problems due to the tumour and the treatment received; her memory is very poor, she has concentration problems, tires easier, has poor balance and falls over quite a lot. Before she was ill she did disco, Latin American dancing and tap. She can no longer do these, but enjoys dancing indoors holding onto a chair or table or even a door frame. We can not imagine a life without Jessica.
Update 13th January 2008
Post Pals has been fantastic and Jessica has really enjoyed getting all her post. I think it is now time to put her on the moving on page though as Jessica has remained well since she joined, although i will of course inform you if there are any changes to Jessica’s health, good or bad, although hopefully not bad.
Thank you to all of the children’s elves this Christmas. The children all loved their presents and Nicole was really pleased with the NOW 68 and the charm making machine. Jack loved all his goodies, especially the hand warmer and the elastic band ball. Chris loved his socks. Thank you to everyone who sent the presents, we are very grateful to you all. I also want to say a big thank you to Sylvia for the tickets to see grease – Jessica and i really enjoyed the show, it was fantastic, thank you so much.
Thank you to all the Post Pals team and to everyone who sent letters, cards and gifts. You are all very special.
Update 4th December 2007
Jessica has had quite a good month with no more tummy pains, which have all settled down. We have an appointment to see the neurologist on Monday 10th to see what they are going to do about the high pressure and Jessica is quite worried about this.
Jessica is now looking forward to Christmas and has written a list as long as your arm for what she would like. We wish everyone a happy Christmas and new year at post pals and to everybody who writes to Jessica, Nicole, Chris and Jack – they all really enjoy receiving post.
Update 9th November 2007
Jessica hasn’t had a good month. She had to have a lumber puncture to test the pressure in her head and unfortunately it was high, so now we are waiting to see if she needs to have a shunt. On top of all that, Jessica is in hospital with suspected appendicitis.
Thank you for the cards, emails and post this month.
Update 30th August 2007
Jessica has had a good summer holiday. She is in Corfu at the moment and is due back on the 8th September.
She has an appointment with the neurosurgeon on 12th September.
Thank you to Eleanor for the book – Jessica has taken it to Corfu to write her diary in.
Update 2nd July 2007
Jessica’s scan results were good and there has been no change from last years. Jessica has been very unstable though for the last couple of months so the doctor is sending the images to the neurosurgeon to have a look at. He is wondering whether she is having periods of high pressure in her brain and this is causing her to fall over more and her memory is quite bad at the moment. I haven’t heard anything yet so hopefully nothing is wrong.
Thank you once again for the cards and gifts – you are all very special people. Special thank you’s for the 2 bracelets Jessica received this month – one was a fairy and the other a handmade one. They were both beautiful. Also for the notelets from Israel – they are lovely and i think Jessica has used them already.
Update 3rd May 2007
Jessica has been well this month, although a little unsteady on her feet, but i think it’s the change of season. Jessica is having her MRI scan on tuesday 15th May.
Many thanks to everyone who has written to Jessica.
Update 1st April 2007
Jessica has had a good month and is looking forward to Easter and the holidays. Thank you to all who have written to her this month.
Update 2nd March 2007
Jessica has had a good couple of months; she really enjoyed her birthday party and got lots of presents. She went to the ice show in Brighton and really enjoyed that. Thank you to everyone who sent Jessica a card, present or email as she so enjoys receiving them. Thank you so much.
Update 5th January 2007
Jessica has had a lovely Christmas. She has been well and is now looking forward to going back to school and at the moment is busy planning her 13th birthday party.
Jessica says thank you for all her lovely Christmas presents, we were overwhelmed by the amount she received. Thank you to Kate for the big box full of things and it was nice of you to send a photo as well. Thank you to the elves, thank you to Judith (the headband is really nice, did you make it yourself?) and thank you to Julie. A big thank you to everyone who has sent a card or present, we think you are all really wonderful people.
Update 1st December 2006
Jessica has had a good month and is now looking forward to Christmas. We have just heard that we have now got some funding to go towards a new wheelchair for Jessica and hopefully the chair will be here in the New Year.
Jessica says Merry Christmas and a happy new year to every one who has taken the time to write to her, to send emails and sent little gifts.
Jessica says thank you to Kate, Judith and Julie for their regular letters and pressies all through the year. Please don’t be offended if i have left anybody out! We would also like to say thank you to all the people who emailed and wrote due to the Martin Lewis website.
Update 17th November 2006
Jessica has been a bit wobbly so far this month. I think it is a change in the weather, she doesn’t like the cold, her hands and feet turn blue. Jessica has received lots of emails this month and i saw that post pals has been posted on the martin lewis site, what a great idea. I am taking Jessica to the mayflower tonight, we are going to see the nutcracker as Jessica used to do ballet – she passed her first exam with honours. I am sure we will have a great time.
Update 5th October 2006
Jessica has had a good month and we had a lovely holiday in Cornwall. Two weeks ago Jessica went to London to make a promotional video for over the wall gang camp. The other star was Vinnie Jones and she had a lovely day and Vinnie was very nice. Jessica has an appointment with her neurologist on Monday hopefully all will be well.
Love to all who have written to Jessica and also thank you to those who have written to Chris, Nicole and Jack – they have really enjoyed getting post too! Special thank you to Kate for the card she sent Chris with the cars on.
Update 31st August 2006
Jessica has been fine and we are going on holiday on Saturday to Cornwall so we are hoping that the weather gets a bit warmer. Jessica has been on holiday to Dorset with the over the wall gang camp. If any of you haven’t heard of them have a look at their website they are a wonderful charity they provide holidays for seriously ill children. Jessica has been 3 times now.
I can’t believe the children are going back to school on Monday; the holidays have gone so quickly. Once again thank you for all the wonderful cards letters and presents.
Update 5th July 2006
Jessica has started her new school and has settled in really well. She has been very well this month although the hot weather has made her very tired.
She is enjoying her posty and says a big thank you to everyone who has written to her and sent a gift.
Update 9th June 2006
Jessica has had a good month; her scan results were brilliant and there has been no change in the tumour mass. We also won our appeal to get Jessica into a special school and she starts on Monday. Thank you for all the gifts and cards, Jessica particularly liked the glass paints.
Update 7th April 2006
Jessica has been quite well this month apart from a cold. She has got an appointment with her neurologist on Monday, so fingers and toes crossed everybody.
Jessica would like to say thank you to Becky for her lovely cards and gifts. Also to Julie for her gifts and to Caroline for the beautiful bracelet. Thank you to Anna for the cat in the hat folder and the Garfield cartoons and thank you to Cherie for her letters from America. She has really enjoyed opening all of her letters, they really cheer her up. Thanks to everybody who has taken the time to write such lovely letters, they really do help.
Story written 2008
Alex was diagnosed with a Glioblastoma Multiforme (GBM) grade 4 brain tumour in August 2002. He had emergency surgery and was kept asleep for 8 days. In December 2002 he had radiotherapy. He started chemotherapy in February 2003 after finding out the tumour had regrown. He was on Temozomide and Cisplatin first, then Temozomide with Thalidomide. He is still on treatment and takes Thalidomide which is controlling his condition.
Alex has regularly scans (MRI) and at the moment these show no active tumour.
With all his treatment and the tumour, he has been left with a number of problems. He suffers from Epilepsy, short term memory problems, slight loss of hearing, partially sighted (has tunnel vision) and is slow processing information. He uses a wheelchair for anything more than a short distance. He also has a hole in his skull (quite large).
Alex is 16 years old and keeps smiling through all his treatment. He has been so brave. Alex’s tumour could recur at any time as it is so aggressive, but Alex tries to live his life happily. He doesn’t know how ill he has been.
Update 29th June 2009
Alex has enjoyed a couple of holidays courtesy of cancer charities and they have been great.
He is still suffering from seizures. He has also been having lots of tests recently and is waiting for a brace to be fitted on his teeth.
We had meetings at school and it’s all been sorted, it was just a case of them getting to know Alex and Alex getting to know them. He is alot happier now. He went on a school trip with them and enjoyed it. He is looking forward to going on another one next month. Hopefully he will be able to stay there for another two years.
Thanks for all the cards, letters and emails sent to Alex.
Update 14th May 2009
Alex has been ok, except for his seizures and stress over how they treat him at school. We keep having meetings with them but we’re not sure anything will change and we might have to start looking for somewhere new.
He had another MRI Scan last week and we received the results yesterday. There has been no change from the previous scan, so the hospital think the problem they saw before is scarring and so they are not as worried.
Thanks for the mail and presents. The wordsearch mug was great, as was the ‘egg’head’.
Update 19th February 2009
Alex did really well in his GCSE’s. He went to college for 2 days and then they rang me up to say he wasn’t allowed to go anymore due to health and safety. I spent weeks sorting a new school and funding for Alex. He was eventually able to start in November after his operation to repair his skull. He is studying English, Maths and Performing Arts.
In November we also found out that Alex may have a reoccurrence of his tumour as the MRI showed enhancement. A repeat scan in December showed exactly the same as November and also a cyst that was missed on the July scan. We have been trying to get treatment since December but all the hospital wants to do is scan again in February. A second opinion has been sought from Germany but we have no results yet.
Alex’s first niece was born in January. He already has 3 nephews and an angel nephew. He was really excited.
Thank you for all the presents, cards, and emails. He loved the penguin as it’s his favourite animal.
Update 17th August 2008
Alex is well overall. We thought we had his seizures under control but recently he’s been having them every day. I think he’s missing going to school. He has taken his GCSE’s and is waiting for his results. We’re not sure how well he did because he had seizures in them. He was allowed extra time and he was in another room on his own with his TA’s.
Alex has been on a couple of holidays which he enjoyed. He went to Malcolm Sargents in Prestwick and he was also invited to visit the headquarters of The London Community Gospel Choir and sang with them.
Alex should have had an operation to have a plate put in his head during this summer holidays, but the surgeon’s secretary messed up and didn’t book him in, so the op will now be in October, but that has had a knock on effect on his schooling. We had to fight to get his funding, appealing twice, but then he was unable to take the place because we don’t know if his seizures will be better or worse and also he will not be able to keep up his studies [AS levels in History and English] if he has to spend time in hospital. He is now going to another College to do performing skills and creative skills. There is a special unit there.
Thanks to all the people who have sent post to Alex.
Update 14th April 2008
Firstly, Alex would like to say a very big thank you to everyone who has sent him post, letters, gifts and emails. He sends his apologies to those he hasn’t replied to. He has loved opening the post and his nephew Nathan has been helping him as well. He is only 6 and has been there for Alex since he has been ill; he has been like a brother to him.
We have had quite a busy month. Alex has had an interview to go to another school (sixth form) as his current school doesn’t have one. He has been shown around the special unit where he will get lots of support (he has problems with short term memory). We have to wait and see if he gets funding to go there.
Alex is still waiting to start growth hormones. This has been going on since November 07, the nurse always seems to be on holiday. He is still taking Thalidomide and he is doing well, except for his seizures, which are ongoing.
Story written 2012
Katy was a very happy smiley child but then one day her parents noticed she wasn’t smiling anymore and it rang silent alarm bells for them. She was also suffering headaches and blurred vision, which at first were thought to be migraines and the CT scan that was done came back clear. After a teacher noticed something strange in photos of one of Katy’s eyes, her parents took her to A&E in October where an MRI was done. Katy was diagnosed with Brainstem Diffuse Pontine Glioma (a brain tumour in the brainstem making it inoperable and this type of tumour also does not respond to chemotherapy).
Katy was given 30 sessions of radiotherapy (the maximum amount allowed) and given 6 – 9 months to live, but 3 months later she is very poorly and in a hospice. Her family have already had to say goodbye to her 3 times although she pulled through each time to everyone’s surprise. She wanted to meet her baby sister so her Mum was induced at 38 weeks and Katy has met baby Scarlet. Whenever they place Scarlet in her arms she smiles.
Katy has stabilised a little but is still very ill. The family are talking to a surgeon in Australia who is famous for performing surgery on those no one else will.
Katy is unaware of her prognosis but the family are in need of lots of TLC and smiles and they would love some cheerful happy post.
Family Update April 2013
We feel that perhaps it is now time for Charley to move on from Post Pals. She has loved every moment of being with them and the post she has received has most certainly helped her get through the most horrendous time in her life. We do feel now though that Charley is doing well and that perhaps it is time for another child to take Charley’s place that is in much more need of some Post Pals love.
Thank you so much for supporting her and Katy, we’ll never ever forget your kindness.
Our very best wishes,
David and Paula
Update 19th January 2012
We are sad to say that Katy passed away at 1am this morning. She had spent the day comfortable with her parents talking to her and playing her Disney CD to her.
Update 17th January 2012
Thank you for sending post to Katy. Her family have now asked ‘for prayers for Katy’s smooth transition’ instead.
Update 16th January 2012
This illness is so cruel. Katy has been up half the night and is so poorly. She is the sweetest girl in the world and with the cruellest illness. What did she say to me at 4am? “Why don’t you try to get some sleep mummy?”.
Update 15th January 2012
Katy is in a lot of pain today and is being given morphine. She remains beautiful and very well mannered, thanking the nurses each time her meds are given and trying to smile at their jokes. I pray so hard all of the time. I draw strength from all your comments and prayers too. I love this girl so much my heart actually aches.
Update 13th January 2012
Our poor precious girl is really not well today. She is tired. I’m sat beside her holding her hand listening to a lovely Barbara Streisand cd. I’m trying to keep the tears away in case she looks at me. I wish I could suction the lump out of my throat.
Someone sent us a scrap book making kit which we have decorated. She wants our Florida holiday photo’s inside. It’ll be so special when it is done. Hopefully she’ll feel better after a good long sleep and then I’ll carry on with my task. We have been offered flights to USA! I just need her to be well enough.
A big balloon bouquet arrived too, thank you Post Pals!! We have had lots of mail via Post Pals too! We also received the most beautiful book of husky pictures all the way from Canada! I can’t believe it; Katy is over the moon xxxx
Story written 2010
Matt was a perfectly healthy little boy, when sadly at the age of just 22 months, he was diagnosed with a malignant brain tumour measuring 4cm x 5cm in the back of his brain. He underwent 7 hours of surgery, after which he lost the ability to walk, talk, eat, even move, and had to be fed through a peg into his tummy. At the same time Matt had to start an intensive course of chemo lasting 14 months to try to kill off any remaining cancerous cells.
Matt spoke for the first time 8 weeks after surgery; it was such a long time waiting to hear his voice. With sheer determination that Matt is famous for, he also learned to walk again, albeit unsteadily, but to him he can run as fast as anybody when he is one of his Ben 10 characters!
Matt finished his chemo in March 2008, he relapsed shortly afterwards so needed more surgery then 6 weeks of radiotherapy. We had a fantastic year tumour free but during a routine scan it was discovered he had relapsed again. More surgery followed, followed by another relapse. Within 6 weeks the tumour was back again and this time Matt’s doctors felt that the tumour was too aggressive to justify putting him through surgery again.
Matt has fought so hard over the last 3 years and we still hope for a miracle. Matt is on chemotherapy. This is not curative but is hopefully life prolonging.
Update 29th July 2014
Dan now feels ready to move on from Post Pals. He has loved getting post from all over the world and it has really helped him when he desperately needed support. He is an amazing 14 year old and we are so proud of him. Thanks for all your kindness.
Update 2nd February 2011
It is with a heavy heart that I’m writing to tell you Matt passed away at 17:15 yesterday evening.
He was so so peaceful and we were all with him, in true Matt style he had us all organised and made sure that we were all there with him.
A truly special boy right until the end. We miss him xxxxxxxxxxxxxxxxxxxxxxxx
Update 29th January 2011
Matt is spending more and more time in bed at the moment, he is awake but because of the pressure in his head he finds it very difficult to sit up.
We are seeing little changes everyday, but he is comfortable and still ordering us all about, which we love. He keeps telling anybody who visits to ‘get out the way of my TV!’, the steroids are making him a little stroppy!!!
He loves his post, he has been inundated this week and we have had lots of lovely memory making moments, seeing him smile with his letters, cards and pressies. Even the postman has commented on how much post the boys have had!!! We are in the process of making the picture frame that was sent to Matt, we will be putting a special family photo in there.
He loves his sticker books as he can lie in bed and make those. Dan has had lots of smiles this week too. A special thank you for the cards I have received too this week, thank you for thinking of me.
You have all helped to make some special memories for us and for that we are very very grateful.
Update 18th January 2011
Matt had surgery in November to remove his tumour, and recovered brilliantly.
Over the last 2 weeks he has gone downhill massively, unable to swallow and lethargic. An emergency MRI was done yesterday and it has shown that the tumour has invaded Matt’s brain stem and surrounding area. This has grown so so quickly, that nobody, not even the doctors, expected this.
He is comfortable and having a good day today. His doctor has given us a prognosis of a few weeks with him. It’s hard to believe whilst he is sitting here playing on his playstation.
We are devastated.
Update 19th November 2010
Just wanted to let you know that Matt is going in for surgery on Tuesday and we have to be admitted on Monday. He is getting a lot of headaches and neck pain from the tumour at the moment.
It has been manic this month. It was a definite no to re irradiation so we are currently looking at alternatives to try and stop or slow the tumour.
A massive thank you for all of Matt and Dan’s post over the last month, the boys have loved all of their post.
Update 17th October 2010
It has been a manic month; we have had an amazing trip down to London to see the Lion King and to visit London Zoo where we were able to feed the tigers!! The boys had the most amazing time and were totally worn out by the end of it!!
Matt has also had a scan and we got the results on Friday. The tumour is continuing to grow and I think we all knew this as he is showing more signs of weakness down his left side and his walking is becoming more difficult. We have decided to stop the chemo as it is so obviously not working, and we don’t want to be putting things into his body if it’s not doing anything. Rob and I are going down to London to get a second opinion with regards to Re-irradiation and this should be in the next couple of weeks.
Matt’s surgeon has suggested that we could take the tumour out again (this will not cure Matt, as surgery on its own won’t get rid of it) so that we can have more time with Matt. I would give my right arm for this, so that is also in discussion at the moment.
It has all been really draining for us but as usual Matt and Dan just get on with it!!
On a brighter note, a huge THANKYOU for all the wonderful cards, postcards, letters and gifts the boys have received this month.
They have been overwhelmed. I am just so thankful to everyone who puts the time and effort into thinking of the boys. I normally like to thank everyone individually on here but there has been so much wonderful post this month that it would take up a whole page!!
All of the cards and gifts are kept and used and Matt especially loves his fab Mr Men gifts from Ireland, thank you. Our furthest postcard was from Australia and we have also had a couple from Denmark!! Post Pals is going global!! Matt continues to ask ‘is there anything for me?’ every time the post comes!!
A big thank you from the boys and much love from us.
Update 14th September 2010
Matty is great in himself, although his consultant is convinced that his tumour is growing.
He has been to school two afternoons this week – he loves school so much and he is so pleased to be in class 2 – I wish his ten year older brother was as keen to go to school!!
We have had a really busy week. We travelled to Nottingham last week to get a second opinion about Matt’s tumour. To say the Professor is a fantastic guy would be an understatement; in Matt’s own words he was ‘wicked!!’
We are now awaiting a brain and spine scan to get an up to date picture, if this still shows the tumour can be taken out again the Prof has suggested we do this and re irradiate. We have options again, what a feeling!! This doesn’t come without its own very serious risks but if we don’t go for this Matt will die. Please keep your fingers crossed that the scan shows we can do this.
As I’m writing this, Matt, Dan and dad, are fighting on the sofa, such a simple thing but so special.
Now for the most important bit – Matt has been overjoyed by his letters, cards and presents. His usual response is ‘wahoooooooooooo’! He loves it and we would like to say a massive thank you to Sheelagh for all the Dottie Dalmatian stories and most importantly our new addition to the family ‘pluto’. Thanks also for the footie doorbell, Dan and Matt spent at least a good hour recording and re recording messages, much fun was had by all. Thank you for the lovely letter from ‘Percy’ too, a very handsome chap. Thanks go to Mandie in Ireland for the fab pictures, card and toys, the time spent making the card makes it very very special, thank you so much, Matt has decided that his turtle is a Sea Turtle.
I will update again when I get some more news, but just to say thank you for making my boys smile and for all the time and effort that you all put in to thinking of them.
Story written 2010
Ben was diagnosed with a very rare and aggressive brain tumour when he was 20 months old. He had a 14 hour surgery which removed most of the large tumour (grapefruit sized) and left a plum sized one which was too close to his brain stem. After 6 months of intense chemo there remained none left! But his 3 month MRI showed it had returned. Again, he had it removed, followed by radiotherapy for 6 weeks to the whole of his brain and spine.
Ben remained tumour free for 10 months but then he relapsed again. Once again, he had major brain surgery; they were unable to do a complete total resection although this left him paralysed down his left side, followed by chemo for 6 months. This left no signs of tumour, but once again, 3 months after his routine MRI, it was back (January 2010).
We were told we could only prolong Ben’s life but I had contacted a doctor in Texas who specialises in Ben’s tumour. Ben’s oncologist agreed to contact him and he has been having chemo since February 2010. After 2 cycles the MRI shows reduction and his recent one shows no change (could be better or worse). Ben continues to have chemo for 5 days every 3/4 weeks until at least September 2010 when he will have another MRI.
Ben’s left side is weak, he has no left peripheral vision, and when outside he holds a hand for safety. He is on steroids for the rest of his life- due to damage from the radiotherapy and has a growth hormone problem.
However, Ben continues to be HAPPY and NEVER COMPLAINS. He is an inspiration to us all. We hope and pray there is a cure for him (Ben has been given a 5% chance of the chemo working).
Update 6th October 2010
Just to let you know that our beautiful Ben passed away on Monday evening, the 4th October. We would like to thank everyone who has so kindly sent him mail.
Update 1st October 2010
Ben has taken a turn for the worse. He has two new tumours. He has had an operation as he had fluid on his brain. The operation went well and they put in a shunt. Ben has been very critical since the operation – he has been in Frenchay, then moved to Bristol’s Children’s Hospital and then to the RUH. He has been heavily sedated and was fitting for a few days. Nic and Neil have taken him home (yesterday) where Ben is more settled and relaxed with Clic nurses on call. He is a fighter and Nic and Neil appreciate everyone’s support. Thank you xx
Update 1st September 2010
Ben’s MRI is on the 8th September, so please continue to pray and send lots of positive thoughts that it will be improved and the tumour has shrunk. Ben has been really poorly this past week. He has just started to get better. He now eats a piece of toast everyday! He is also slowly getting stronger each day and can sit up a little longer every day. It has been confirmed today, that he has had a bug! We are relieved that it wasn’t the chemo making him as bad as he was.
This is Ben’s first month of receiving post and we truly appreciate everyone’s gifts, cards, letters, postcards, pictures and emails. They really help brighten up Ben’s days and we really appreciate it. So THANK YOU ALL for taking the time and effort to send these – words can not express our gratitude. Thanks also to everyone who is involved for all your hard work.
Ben had a postcard and card from abroad which was lovely. He loved the picture postcard with the rides on and the train (also the pictures of the animals) as Ben loves these things and had lots to talk about in these cards, so thank you Jane and Bethan. Ben was mesmerised by the picture and rhyme of Banbury Cross – thank you Kath. He also liked hearing from Penny, with the beautiful flower on and hearing about Toy Story 3. A big thank you to Stacey and Louis for the lovely picture you drew, it’s very good!! Ben also really liked the card with Postman Pat and Jess on, he loves it. Ben has had some lovely and very thoughtful letters, we were very deeply touched by the words some of you have written, thank you ever so much, this really helps us “all” especially the letters from; Amalia Nigl and Joe McGee. Also, thank you for the letters from Murphy the Gnome and the rainbow paper from Jill. A very big thank you to everyone who has sent Ben gifts, it’s very generous of you all. He took Postman Pat and the monkey (on different days) into hospital to show them off!! Ben enjoys doing Magic painting and the Toy Story toys are fantastic!! He needed a pencil case and it being Thomas made it extra special. So thank you to: Victoria Grant & Bob (also for the lovely letter), Vicky Sheperd (and for the card), Margaret Schofield (thanks for the lovely words), Penny Berrill, Miss T Davies.
Update 20th August 2010
Ben started his 8th round of chemo yesterday after a week delay due to his platelets being too low. He will have a MRI scan in 2-3 weeks; this is an extra stressful and worrying time for us. We’re always looking for signs that it has come back, or in our case, if it now has grown!! But we have learnt over the years that there are no early signs!!
Ben has started receiving gifts and post this past week and he enjoys opening them all, so thank you all. We will put some photos on here asap!
Update 14th August 2010
Ben had a seizure on Wednesday and has not been himself since. He is very tired and more irritable. We’re thinking about asking for an early MRI (before his next lot of chemo).