Tona was diagnosed with Hodgkin’s Lymphoma in October 2019 at age 14. She went through the first 6 months of treatment with relatively few side effects and went into remission. Sadly within 4 months she relapsed and had to have stronger chemo which made her hair fall out for the second time as well as making her much more tired and nauseous. Once no signs of cancer was detected Tona had a stem cell transplant to raise her chances of remaining in remission. Sadly; due to the intensity of chemo given before a stem cell transplant; Tona’s gut shut down and she also suffered a septic episode. She did recover from this and came home. She was still tube fed, having digestive issues and quite weak but enjoyed 5 weeks at home. Tona then caught salmonella from an unknown source and her already sensitive gut just shut down. She was admitted to hospital and also found to have a line infection. Despite antibiotics, within a week Tona developed sepsis and needed retrieving to the most local PICU to be stabilised.

Since this time (May 2021) Tona has not had a night home. After several attempts to re try feeding and several more septic episodes; Tona was able to come back to our local hospital on TPN which is nutrition into her bloodstream. Tona still has frequent episodes of septsis and has very few areas of access left in her body. 

Due to limited chances of being able to get her gut to work again without significant trauma and high risk; Tona has chosen not to pursue this and instead enjoy the time she has left with her family and friends making memories and then returning to the hospital each day for nutrition and medication.

Update 29th December 2025

We would like to thank Post Pals for all their support since Tona went on end of life care, and then for her siblings after Tona passed soon after. We particularly want to thank you for supporting Tink, even though she is much older. After chatting with her, we all feel that after this Christmas she no longer needs this support, and she would prefer another young person to receive the support that she has been able to have. She is ready to move on.

Rory still really, really looks forward to receiving post from “his friend Joyce” and the postcards from his other Post Pals family. He is also still finding many areas of life tricky. So for now, if possible, he could really use his regular monthly Post Pals interactions.

Thank you to everyone at Post Pals.

Update 18th November 2024

Tink and Rory have had a better year, although they still both suffer from anxiety and trauma related behaviours from what they’ve been through. Tink has enjoyed college and loved attending her college prom and various activities put on by her disability group. Rory has been in a theatre show and really enjoyed it and has grown in confidence. He had to sing and dance and had a solo speaking part. He still really struggles at night but is managing a few hours sleep each night in his own bed.

Both children enjoyed our big trip to Canada. We had a great adventure and made a lot of fabulous memories. Tona would have loved it too and we bought small souvenirs in each place we went to that we thought she would have liked.

Hoping the next year will continue to bring them healing and peace to grow in themselves and that Tink’s health continues to be stable.

Thanks so much for all of the gifts and cards that the children receive. They continue to get so excited when they see a parcel or letter addressed to them. Rory calls his regular senders ‘my friends’ and talks about them like he knows them to others.

Rory loves animals, hot wheels, Lego, theatre/musicals and Disney.

Tink loves Princesses and Disney Descendants. Pink and sparkly thing an musical theatre and Disney.

Update 28th February 2024

The children are doing well following the loss of their sister, however they are still recovering from the absence of their mum while she was in the hospital  with Tona and having to be so grown up and go without for so long. 

They still get so excited by their post; particularly from their monthly senders who they know by name and love to hear about their lives and what they send. 

Tink’s interests are largely unchanged. She herself has many health conditions and learning disabilities which means she spends a lot of time  at hospital appointments or at home. She watches a lot of films and Disney tv, young teen stuff, musicals and still loves all things Disney. 

Rory still loves hot wheels and Lego but also anything science based. 

They both say a massive Thankyou for their post over the last two years and really benefit from feeling that someone is thinking of them

Update 16th of August 2022

Thank you to everyone for the children’s post. It has brought them a lot of comfort and smiles to still be able to open letters and presents. Any post that Tona was unable to use or arrived after she died was donated to our local children’s hospital. She spent over a year there and it was often difficult for them to find age appropriate presents for her. These will hopefully put smiles on many more teenage girls faces.

Update 5th of August 2022

Sadly Tona passed away peacefully in the night. She was surrounded by her family and appeared both free of pain and relaxed.

Please keep sending cheerful post to Rory and Tink, keep it light hearted as you would for any child.

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.

*Please do not send food to this family*

Story written 2019

On the 29th May 2019 we received the devastating news that our son, Rueben, had a malignant brain tumour. We have since been on the biggest roller coaster of our lives – and we’re still riding that same rollercoaster. 

It was all action stations after receiving the news, and Rueben quickly underwent surgery at Leeds Children’s Hospital to remove the tumour. It was largely a success. We then had to endure a lengthy 4 week wait for a biopsy to come back from Great Ormond Street Hospital which would establish the intended treatment he was to receive. I can safely say this was the worst wait we’ve ever had to endure. 

Our lives were once again turned upside down when 2 weeks after we received the results then we found out that Rueben’s tumour had grown back. So, once again, Rue had another 10 hour surgery to remove the tumour. Once again the removal was largely a success. Only minutes after him reappearing from surgery and hearing this good news, Rueben then took a turn for the worse and ended up in intensive care. In a heart beat we thought we could have lost him, but this boy keeps bouncing back with a defiance that’s admirable, and within a few days he was back on his feet.

Rueben then continued treatment, having 30 sessions of Radiotherapy to both his head and spine. This left him incredibly fatigued and only received a 5 week break before having then to commit to an intense 3-6 months of Chemotherapy.

We remain confident that his treatment will be a success, but nervous that we’re battling a very challenging tumour.

‘Life is like a bicycle, stay balanced and you will keep moving forward.’

Rueben set out after his first surgery to help other children, raising a small amount of money for Ward 52 at Leeds Children’s Hospital (LGI). Now, as a family, we are dedicated to helping Candlelighters which is one of Leeds Children’s Hospital’s close cancer charities.

Rueben is currently in hospital having only been home for less than a day after 3 weeks of his Chemotherapy. Both myself and my partner are taking it in turns to look after Rueben whilst receiving treatment as we also have 6 other children in our family.

See more about Rueben’s story here:

https://www.mirror.co.uk/news/uk-news/grieving-dad-whose-soulmate-girlfriend-18966740

*Henry cannot eat, please do not send food*

Story written 2019

Henry was born on 27th July 2015 at just 26 weeks. Henry stayed in hospital for the first 14 months of his life. When Henry came home he needed  oxygen during the day and at night. Henry still requires oxygen at night. Henry has chronic lung disease along with other complications. Henry was diagnosed with a rare genetic condition called Costello Syndrome. Due to this condition Henry is much smaller than other his age. Around 400 people world wide have Costello syndrome. In August 2017 a lump was found in Henry’s testicle, he was diagnosed with Rhabdomyosarcoma stage 1. Henry had this operated on and had chemotherapy, he is remission from this.
In October 2017 Henry was diagnosed with Hepatoblastoma stage 2 but as he had been well for some time it was decided to watch and see. Unfortunately this progressed at earlier this year Henry had a third of his liver removed, had more chemo and is now also in remission from this.
Henry started Pre-school in September 2018, he really enjoyed his time there and made great progress in lots of areas.
Henry is now in reception at school and really enjoys it, he has a small class who moved with him from Pre school along with his teachers.
Henry is such a strong, happy chap who loves going to school, visiting Little Bridge House (Children’s Hospice),  spending time with his friends and family. He has been on such a long journey but he is the strongest most determined little chap we know. 

Update 27th November 2019

Henry had a good start to the month. He spent the first weekend with his carer Rachel. It was Rachel’s nephews birthday, they celebrated by going bowling, Henry joined in and had a lovely time.

Henry’s make a wish arrived, a hot tub. This is going to be fantastic for Henry.

Henry and his mummy enjoyed another restful weekend at Little Bridge House unfortunately the day after returning Henry became unwell. 

Henry was admitted to Bristol children’s hospital on the Monday night, he’s stable but has sadly continued to remain unwell since admission. He had further investigations from cardiology following 2 cardiac arrests, one which was a spontaneous event with no explanation. Thankfully he is in the safest hands and being given exceptional care. 
The decision was made for Henry to have surgery so today (27/11/19) Henry had surgery to fit a pace maker. Surgery went well but Henry was being a little monkey when waking up and had some difficulty so is currently in intensive care. Hopefully tomorrow Henry will come off of the ventilator. Hopefully Henry will have a steady recovery and we will be Exeter bound in the near future.

Update 1st October 2019

Henry has had a good month. He has been going to school full time which he really enjoys. Henry has just had another stay at Little Bridge House, I (Rachel, Henry’s carer ) was able to go with him, this was a really special time. We enjoyed lots of activities together such as the Jacuzzi, messy play, sensory time, walks and music. Henry has made great progress with his communication, he is learning new signs and is able to use  these appropriately. Henry is just getting over a cold at the moment which seems to be lingering but he is coping well with it. Thank you for Henry’s cheery post, he has had some wonderful books this month which we look forward to reading and lovely cuddly toys. A big thank you to everyone. A special thanks must go to Kim , Henry’s monthly pal who send the most lovely thoughtful parcels. 

Update 1st September 2019

Henry has had a lovely summer. He has been out to lots of places with friends and family.  Henry continues to be well (from cancer) although he will always have lots going on for him due to his condition – Costello Syndrome. 

Henry had a lovely last minute stay at Little Bridge House (children’s hospice) due to a cancellation. Whilst there he enjoyed the jacuzzi and snooze Ellen (sensory room) he also liked going for walks outside. 

Henry starts school in September so we also went shopping for uniform and shoes. I look forward to updating you once Henry starts ‘big school’.  Thank you all for Henry’s post.  

Update 29th July 2019

Henry has been well over the last few months. He had his Hickman line removed (due to an infection) but that means he can now go swimming again, which he loves.

We have just celebrated Henry’s 4th birthday, which was fantastic. We stayed in Andover for the weekend and went to Peppa Pig world. Henry has a great day.

Thank you to everyone for Henry’s regular post and birthday post.

Over the summer we plan to have lots of lovely days before Henry starts school in September – so grown up !

Update 15th June 2019

On 14^th May Henry travelled up to Birmingham children’s hospital. On the 15^th he went for his surgery. 
Henry had a third of his liver removed in order to remove the cancer, unfortunately they found that this had spread to the muscle in his diaphragm, so they removed this also. Henry came around with a very impressive scar, he spent a few days in PICU before moving to the ward but unfortunately Henry needed a bit of extra help with his breathing so returned to PICU. 
In true Henry spirit this was not for long and he moved back to the ward again. Henry continued to get stronger each day. Henry found it harder to tolerate feeds after his surgery which is what held his recovery up a little.But on Thursday 30^th May Henry transferred back to Exeter hospital which is much closer to home.

He continued to make great progress, healing well and tolerating more feeds. It was decided that Henry could go home on Monday 3^rd June, just 20 days after a huge surgery andhe went back to pre-school which he loves.
On the Thursday that week Henry had an appointment to go back and see his oncologist for the pathology results of what was removed. We are delighted to share that Henry’s cancer was removed with clear margins even the disease that had spread. This means that Henry is cancer free and is now in remission from both Rhabdomyosarcoma and Hepatic Hepatoblastoma. Henry is truly an incredibly strong child.

Henry has just come back from a lovely week at Little Bridge House. Now the preparation has started on how we will celebrate Henry’s 4^th Birthday.

Thank you for his wonderful post- Henry enjoys looking at it all. 

Update 8th March 2019

On 30th April Henry travelled up to Birmingham Children’s Hospital to have his planned operation to remove the cancer in his liver on 1st May. Unfortunately for Henry and his family, just 15 minutes before going to theatre (all gowned up) Henry’s operation was cancelled due to a family having a transplant call. Amazing for that family, but of course hard for Henry’s family who had prepared for that day and the possible outcomes. Henry came home that day and his operation is now rescheduled for May 15th. Following that very difficult week, Henry had a lovely bank holiday weekend. Spending time with his family and friends. Henry went to the park and on bank holiday went to Crealy adventure park with his friends Arthur and Mabel. Henry enjoyed the rides and feeding the animals

Any food sent to siblings must be halal and suitable for vegetarians.

Anoosha is a 4 year old full of life. She was 11 days old when she was diagnosed with a heart condition (TOF). By the age of 4 months she had her 3^rd open heart surgery. When she was 4 months old her bowel twisted and she needed emergency surgery called a Ladd’s procedure. At the age of 1 she started breaking her bones  just by us picking her up and was diagnosed with Rickets. Since the age of 1 she has been completely TPN (IV feeding) dependent for 24 hours a day. All her medication has to be given by IV straight into her heart.

When she was 3 she had a cardiac arrest and ended up in intensive care for three weeks. She now has a loop recorder fitted in her heart to monitor her heart rate. She has had about 5 intensive care visits due to arrests or line infections.

She has a gastrostomy on free drainage and a disconnected stoma. She is due to have her colon out in the next few weeks.

Anoosha has been in hospital for a long time.

Update 25th October 2024

Azaan likes Marvel, super heros, Luton Town FC and musical instruments. 

Arzoo likes Manchester United, make up and Spiderman.

Update 22nd December 2022

Today our princess Anoosha lost her long 9 year battle. She has returned to the Lord. Anoosha was the sassiest, bravest little girl I had ever met. She fought through every setback like a soldier. She brought joy to so many lives.

Update 4th October 2022

Anoosha remains in hospital. She has been bouncing in and out of PICU, HDU and onto the main ward. 

Update 24th March 2022

Anoosha is 8 months post bowel transplant and is still in the hospital. We have different hurdles to get over but we are getting there.

Anoosha remains her smiley, cheeky self and is thriving.

She currently has a separate peg for free drainage and a Jej for feeds. She still has her central line and is on fluids overnight. Her stoma was not able to be reversed and we never got a large bowel transplant.

This child amazes me every day with her strength and courage. Even when in pain she smiled through it.

Next step is hopefully to get her walking after they do her Achilles surgery but fingers crossed home before that.

Update 4th June 2021

First of all I want to say a massive thank you to Anoosha’s donor family where ever they may be. Your selfless act has given my princess a chance to live. So much love to you guys.

I am so proud to be Anooshas mum, this girl is seriously something else. She never fails to make me smile.

A huge thank you to my husband and kids. We had no choice in this but you kept us going. 7 years we have been split as a family and our bond is stronger than ever. 

Update 2nd June 2021

She finally came out of theatre at about 4.30am and she’s in intensive care. The surgeon said they were only able to get a small bowel and a partial stomach in as there wasn’t any room. Her abdomen has been left open for now.

Update 2nd June 2021

So today Anoosha got her transplant call. Anoosha is currently sitting in her gown waiting to go down (should go by 7ish) Can everyone please pray the transplant goes smoothly. I don’t even know where I’m suppose to be and only one parent is allowed. 

Update 21st August 2020

Anoosha has been in hospital for the past 5 years with most of it in Great Ormond Street Hospital.  We are current on our 8th month in GOSH. All she craves for is a quality of life with her family. Anoosha is constantly septic, which weakens her completely and puts her back. 

Update 1st October 2019

Currently still active on the transplant list. We have been an inpatient in our local hospital since April awaiting nurses for home. Infection in the line is still a battle and she is always on antibiotics.
She is a very happy little 5 year old who loves life. Whilst an inpatient she is able to go to our local hospice for 2 mornings a week.
She is becoming more aware of her problems now and she questions why she is always in hospital and why she can’t eat!
She always looks forward to receiving mail and opening presents.

Update 3rd April 2019

Anoosha has now been active on the transplant list for six months. She’s awaiting small & large bowel, liver, stomach and pancreas. She’s been an inpatient at Great Ormond Street Hospital for 2 years now. She is constantly fighting sepsis (almost every 2-3 weeks).

She is waiting to start immunoglobulin treatment.

I want to thank everyone who is sending mail out. We just need the transplant call to come quick.

Story Written 2018

Theo was born at 29 weeks, and was diagnosed very early on with cerebral palsy, epilepsy and feeding problems among other complex medical needs. Since then he has also been registered blind.

“There are many words to describe Theo. Beautiful, special, cheeky but probably the most fitting word is a ‘fighter’,” explains Denise, Theo’s mum.

Theo has bravely endured 31 surgical procedures in his short life, and also survived viral and bacterial meningitis. He is fed directly into his bowel hourly and continuously through the night by a machine, so requires around the clock care.

“Theo never ceases to amaze me; he inspires me and is a really super son. Everyone who knows Theo will agree no matter how poorly he is, he never refuses to smile.” said Denise.

Theo has now been moved to Bluebell Wood Hospice and is receiving end of life care.

Update 1st of June 2018

Theo passed away this morning.

Update 17th May 2018

Oh my goodness I sat and sobbed today when the nurses brought the post down!! Thank you so so much for all the wonderful presents and cards ! We read them all to Theo . You are all so generous.

Elle has cystic fibrosis and had a lung transplant in early 2017.

Her news lungs are beautiful and working perfectly, the nasty bacteria that was in her old lungs though managed to find a way back into her body and in November we were told we are running out of treatment options.

Seven months post-transplant we discovered the bacteria had started to grow in her ribs and sternum. Elle had surgery in September to remove the affected area. She was blasted with the highest dose of antibiotics and this meant serious side effects.

Elle is almost completely deaf now and her hearing won’t ever return. She has lost most of her hair apart from a little patch she’s holding onto dearly. Her nausea can be relentless, she can’t eat or keep anything down and consequently she is malnourished and her poor little body is very frail.

Four weeks after the surgery to remove this infected area an MRI scan told us the bacteria is still present and is growing, Elle’s body can’t fight it.

We were preparing to receive the news from Great Ormond Street that we have no other choice but to keep her comfortable and make the most of what short time is left but Elle’s consultants have been discussing her case all over the world to try and find a way forward, and recently we were thrown a lifeline: they have agreed to operate on her one last time. The GOSH team, Elle and her family are going to give it everything they’ve got.

It’s going to be an intrusive surgery, removing more bone and infected tissue, and this time potentially leaving the wound open to heal from the inside. A significant stay in intensive care and many more weeks in GOSH. A super blast of medication to give her body all the help we can to be sure it goes and doesn’t return.

This is our only option left to try and save her.

Elle knows the bug is back, she pictures it as ‘little faces eating away at me’ and she wants it gone. She wants to beat the bug! And most importantly, she wants to go ahead with the surgery, Elle has plenty of fight left in her.

Her biggest upset on hearing this news was the realisation that she would be in hospital over Christmas.

3rd January 2018

We are very sad to say Elle passed away peacefully in her parents’ arms.

Please keep sending cheerful post to her sister Cara.

Story Written 2017

Skylah was a healthy, happy baby born on 26th May 2013. In September 2013, Skylah was diagnosed at four months old with bilateral retinoblastoma (eye cancer in both eyes). She underwent six rounds of chemotherapy and we got the all clear in January 2014. When we went for her next check up we found out she had relapsed in one eye and she would need more chemotherapy, this time it was called intra arterial chemo. Whilst they were doing the procedure they came across a blockage, so she was sent for an MRI. When the results came back we were told they had discovered a brain tumour in her pineal gland, she had a seven hour operation and had intensive chemotherapy which ended October 2014.
We were over the moon that it had finished and for about a year and a bit we enjoyed her being clear of a brain tumour! She still had regular checks on her eyes and needed regular treatment to keep her right eye stable but all in all everything was looking up for us!
In January 2016 we took Skylah to A&E as she was walking a bit oddly and when they did an MRI they found that she was covered in tumours from the bottom of her spine all the way up to her brain! We were completely devastated!
We got told there was nothing they could do for her apart from palliative radiotherapy which ended in March 2016. We took her home to make as many memories as possible, but she has been a complete superstar and is amazing all her consultants. Skylah is still with us over a year later and we are so thankful for every day we have with Skylah.
Unfortunately on the 23rd August 2017 we had to make the decision to have Skylah’s eye removed and she is having the operation this Wednesday 30th August 2017.

Update 2nd June 2018

Nothing really new with Skylah apart from taking each day as it comes there is still no treatment out there for Skylah and she is still terminal. Skylah became a big sister back in October and loves her little brother very much! Skylah is so looking forward to the party, we can’t wait!!

**Please do NOT send Ryoo stickers as she has a phobia of stickers (Pittakionaphobia). This includes stickers on envelopes. If possible could the writing be larger and clear to enable Ryoo to be able to read it herself. Please also don’t send food or drink.

Story written 2017

Ryoo was like all other seven year old children, then everything changed …

In January 2012 Ryoo was taken by ambulance from our local A&E to the Freeman Hospital. Ryoo was diagnosed with end stage heart failure. No one knew why.

No one can imagine what it’s like to watch your child’s life slipping away. Every day her body was pumped with more and more medicines, she became thinner and thinner. But she never stopped smiling, she never gave in. She would play with the play specialist, the clown doctors and make bracelets.

I wanted to scream and shout “this isn’t fair, why my child?”, but when I saw Ryoo determined to keep going I decided to fight with her.

Sadly Ryoo’s body wasn’t responding to the medication and less than a month after diagnosis all that was left was to place Ryoo on the organ donor register and hope that a heart would be come available in time. Ryoo took this in her stride like she does with everything else.

Ryoo was becoming weaker and weaker and eight days after being listed, it was decided that Ryoo’s body needed a rest and she was to be placed into an induced sleep (life support).

When we told Ryoo what was going to happen she just smiled, the smile that had kept us all going.  I looked into my daughter’s blue eyes and wondered if I would ever see them again. The next time I saw Ryoo  she was in PICU and ventilated. I held her hand and read story after story to her. On 10th  February I was sitting reading to Ryoo when the call came that Ryoo was going to receive her gift of a new heart. I couldn’t believe it. She had fought and fought so hard. Here was her gift, a new heart. A chance to continue to live her life.

I saw Ryoo the next day, she was covered in wires but she was awake and I could see those blue eyes. Ryoo made excellent progress and within three to four days she was out of PICU and back on the ward. She continued to get stronger and stronger and was home after three weeks.

Life was not to be the same for Ryoo, life has changed but Ryoo embraced these changes.

Ryoo lives with a life limiting condition. A life that at anytime could be taken away due to infection or rejection. Ryoo will take immunosuppressants for the rest of her life. But this doesn’t stop or hold her back.

Ryoo’s health has been a constant battle.

With many diagnoses –

2012 – Heart transplant.

2013 – Raynaud’s Phenomenon, a condition that restricts the blood flow to the hands and feet making them cold and white and painful.

2013 – Hypermobility syndrome with bilateral flat foot, causing constant pains to her knees legs and feet. When the pain is unbearable she uses a wheelchair.

2013 – Low immunity to infection requiring a weekly subcut infusion of a blood product immunoglobulin into her legs.

2014 – Stomach and head migraines lasting days to weeks.

2014 – Autism spectrum.

2016 – 14 weeks of diarrhoea causing weight loss and fatigue.

2016 – Blocked femoral artery causing pain to her leg and three months of daily injections.

2017 – Followed by a diagnosis of Chronic Fatigue Syndrome – ME.

On top of this Rachel has to attend eight-weekly transplant clinic, blood, ECG, echo etc. Appointments with all the different consultants she sees. Tests after tests. Numerous hospital admissions and appointments.

Update 12th April 2026

Ryoo has been in hospital for a while now due to a big clot sitting near her heart. She’s requiring extra dialysis sessions and she is struggling.

Update 29th October 2025

Ryoo has spent more time in hospital than at home.

Ryoo has dialysis three times a week every week. At this point, Ryoo is not suitable for a kidney transplant.

Luckily, Ryoo’s service dog Loki goes with her everywhere and helps massively with her mental health.

Ryoo has been having issues with her tunnel line and after weeks and weeks of trying to save the line, she had to be admitted to hospital for an emergency tunnel line to be placed and a new jej tube. Ryoo is waiting for a fistula to be created so they can access dialysis this way. Ryoo also needs an angiogram on her head done. Ryoo has a blood clot that the haematology team are trying to dissolve with high daily doses of blood thinners. She’s back on insulin as her blood sugars are all over the place. Ryoo gets very tired and lives with constant chronic pain.

Ryoo and Loki have been enjoying their monthly stay at St Oswald’s Hospice.

Ryoo, as always, tries to remain positive and the Post Pal post always helps her do this.

Update 30th June 2024

Ryoo been back in hospital for nearly 3 weeks now and she’s very down. Sadly she’s been in hospital more this year than at home.  Her kidney function keeps dropping despite different plans. She now has a portacath, PEG and PEGJ and is on 24-hour TPN. Her mood is very low. Her service dog Loki is able to be in hospital with her.

Update 18th March 2024

Since Ryoos last update her health has been not the best and she has spent more time in hospital than at home, including a long stay in Critical Care on life support.
Ryoo is now TPN fed for 22 hours a day with only a two hour break and all her medication goes through her PEGJ.  Ryoo is only allowed to drink 300mls a day which as you can imagine is very difficult.
All of this is along side all the medical conditions she already has. Life is hard and very challenging. All the teams involved are trying to keep Ryoo as well as they can.
Ryoo has a number of procedures planned over the next few months as long as she remains stable.

What has really helped Ryoo deal with all the hard/challenging times is receiving, cards, letters and gift from all the PostPals. This has made Ryoo feel special and distract her from what is happening to her.
Thank you to everyone that has taken to the to write and send gifts. You are all amazing.
Ryoo loved all the games, Lego, switch games, Jellycats and Japanese stationary.

Thank you for thinking of Ryoo and making her feel special. Xxx

Update 27th June 2022

The last three month we spent in three different hospitals with Rachel have shown me how amazing my daughter is. The fight to live.

On the 20th March Rachel suffered a cardiac arrest at home and was unresponsive for 8 minutes.
Luckily the paramedics where at the scene when it happened and they managed to ventilate and sedate Rachel and blue light her to Critical Care.

Over the next three months Rachel spent 90% of her admission in ICU at the RVI and Freeman Hospital.
Rachel started to have issues with her kidneys, lungs and heart.

Rachel had five mayor episodes during her admission where her kidneys, lungs and heart couldn’t cope and she required CPAC and constant dialysis. Rachels lungs suddenly would fill up with fluid as if she was drowning inside. No one understands how or why this happened as all of her blood results were perfect. During two of these episodes Rachel was that poorly she was due to be ventilated and sedated but luckly she kept fighting back and managed to remain on CPAC.

After 10 weeks in ICU Rachel eventually managed to move to the ward and stay there (the other times Rachel had been to the ward she had bounced straight back to ICU). During the weeks in ICU Rachel had over 8 blood transfusion, 10 weeks of dialysis, loads of IVs, CTs, MRI, lines fitted and four Vascath fitted and then a more permanent tunnelled Vascath as Rachel has no vein access.

It was a further three and a half weeks on the ward before it was felt Rachel was stable enough to go home. HOME a word we didn’t know we would ever hear.

Being home is strange and at first hard as we had lost the security of the doctors and nurses being around and ICU just upstairs. But we’ve soon adapted into a new normal routine. Rachel is now on a fluid restriction and calorie restriction. She has to be weighed every day, have her temperature and stats taken at least four times a day. We have to be constantly on the look out for any fluid build up and breathlessness.

No one knows if Rachel will have any further episodes but all we can do is live for the now and follow the strict guidelines from the teams involved.

Rachel attends clinic weekly to have her bloods taken and her Vascath flushed and dressing changed.

Life feels different and strange now, but hopefully with time everything will settle down.

Thank you soooo much to everyone that has sent post to Rachel. She has loved me reading them all to her.  She especially loved all the Jellycats as she collects them.

You’re all amazing people making time for others. I can’t thank you enough. During our darkest time you gave us normality.

Update 30th October 2021

The last few months  have not been kind to Rachel.  The impact all her medical conditions are having on her body and mental health is sad to see.  Shes very down and struggling to see the point which is heartbreaking. 

Thank you for all the post that has been sent to Rachel. As aways it greatly received.  Sorry that I haven’t thanked everyone individually. 

Update 14th June 2021

Since Rachel last update the complexity of Rachels medical needs has increased. 

A MRI to her stomach showed Atrophic Pancreas (diseased) which is likely to be due to her Rare Genetic Disease. 

A MRI to her head showed a buildup of pressures which needs investigating. 

A CT to the stomach showed a blood clot between her heart and stomach. She has been put on a daily injections and is due to see the Hematology Team. 

Rachel had been referred to the epilepsy team as it appears she’s having some type of seizures. 

Rachels pain relief has been increased and she is now on Morphine Sulfate alongs side the other pain medication. 

Her vision continues to get worse and shes been registered Visually Impaired. 

An appointment with Addenbrooks confirmed the diagnosis FamilialPartial Lipodystrophy Type 2, Dunnigan Variety due to Rachels Rare Genetic Disease. 

Rachels living with constant widespread chronic pain and constant Nausea. She has days when she can’t bring herself to eat and on the other days she is eating to due to being hungry rather than enjoyment. (Shes even stopped eating her chocolate buttons which she loves)

Rachel has had a number of admissions to hospital through A&E due to the impact everthing is having on her body. 

We are waiting to see the impact all the new issues and diagnoses have a Rachels body and mental heath. 

A MDT meeting is being arranged to look at how to manage Rachels complex medical needs and give her the best quality of life. The Palliative Care Team and Chips are to be involved. 

It has been a hard, stressful and emotional filled month with worry and lots of tears. 

To not be able to wave a magic wand and make it all better is so hard as a parent. To see your child progressively get worse. 

Rachel had tried to remain positive but its been to much for her and shes had some very dark days. 

Thank you to everyone that has thought of Rachel and sent letters and cards as always it means so much. Xx

Update 26th March 2021

We’ve had a terrible week.

The eye consultant on monday registered Rachel as Visually impaired. She need a Head MRI done asap and then a MDT meeting to look at how best to support her.

Then the gastro team called to say they want a stomach MRI and a endoscopy top and botttom. As she had nausea for over three months constantly.

The diabetic team increased her insulin and said her kidneys are releasing protein into her unrin so she needs to see the kidney team sooner rather than later.

The pain team are waiting a joint meeting to discuss Rachels pains and how to support her better.

And to top it off we went for Rachels 6 weekly bloods and she won’t bleed at all and was so upset. It couldn’t have come at a worse time as loads of her consultants had asked for extra bloods to be done.

My heads all over more and more teams involved and I forget who knows what and what everyone is doing. My heart breaks for Rachel as it does seem unfair to have as many medical conditions and life limiting conditions.

Tomorrow is another day so lets look forward to that.

Update 30th March 2022

Rachel is still in ICU very unwell.

Update 21st March 2022

Rachel was on weekend leave from hospital when she became unwell at home. Paramedics were called and whilst they were with her she went into full cardiac arrest. It took 8 minutes of CPR for them to revive Rachel, they intubated her and transferred her to ITU.

Update 6th February 2021

Rachel had a quiet birthday and it took her a week to open all her cards and gifts (with help) Thank you to everyone that sent cards and gifts Rachel loved them all. Rachels health isn’t good and she waiting for a MRI on her Head, a MRI on her Stomach and a Endoscopy.  She has been Registered as Visually Impaired and needs a MDT meeting to discuss how best to support her. 

Her Insulin has been increased again as she becomes more more insulin resistant. Rachels had a Constant headache for 3 months and nausea for 4 months alongside the widespread chronic pain is getting her down. The Pain team and gastro are looking into this. Shielding continues. 

Thank you for thinking of Rachel

it means a great deal. 

Update 6th February 2021

The complexity of Rachels medical conditions has become increasingly harder for her to handle physically and mentally. The constant widespread chronic pain, fatigue, bed bound and generally feeling yuk all the time is depressing and hard for her to deal with. 

Having to deal with the impact of so many medical conditions and the impact each one has on her body. 

She is waiting for a referral to Addenbrooks for her Lipodystrophy. There are only 500 people world wide with Rachels type of rare disease and sadly there isn’t much information around to suport her, all the teams involved are learning as they go along. We are blessed to have so many dedicated doctors, consultants and nursers etc looking after her, who call regularly and check to see how we all are. 

A referal has also been made to the Kidney Team due to Swelling and concerns from teams involved that the fat within Rachels body can cause problems for her organs. 

On a positive note we are greatful for another year with Rachel as we celebrate in February her 9th heart transplant day and her 17th birthday.  

Thank you for all the post and gift

Rachel has received over the last few months. We really appreciated the smiles the post gives to Rachel. Especially the chocolate as she will occasionally share yummy. 

Sorry that we’ve not had an opportunity to thank everyone personally. 

Update 20th August 2020

Life is a massive struggle for Rachel, as she continues to be bed-bound. Suffering constantly with chronic wide spread pain, fatigue, headaches and nausea. 

The complexity and uncertainty of Rachel’s medical needs are impacting her life daily and leaving her physically exhausted and in a low mood. 

Rachel has just been diagnosed with Partial Lipodystrophy which is due to the mutation in her LMNA gene. This has come as a complete shock and sadly another medical condition to add to the already long list. 

The worrying impact this condition will have on Rachel physically and on her mental health. Sadly there is no cure. 

The Partial Lipodystrophy is what has made Rachel diabetic and resistant to insulin. More injections and more medication. 

We are still waiting for further tests to be carried out from the Allergy and Immunology team. Due to the ongoing issues with her gut, swollen face and lips, distended stomach and issues regulating her blood temperature. The teams are also looking into her genetics Laminopathy. 

Rachel’s CFS/ME and constant widespread pain has left her feeling constantly fatigued and no amount of sleep is refreshing her. Her concentration is none existent.

Rachel has had a lot of hospital admission over the last few months. Due to COVID-19 and Rachel being extremely vulnerable all of her normal hospital appointments wherever possible have been over the telephone. 

Covid-19 has impacted the whole family due to Rachel being extremely vulnerable.  As advised by her consultants we continue to shield Rachel and try and keep her safe. 

Rachel is  very down and feeling overwhelmed by all of her medical and health needs and the impact they have on her. 

Update 7th June 2020

The last few months haven’t been good to Rachel.  Rachel is bed-bound and in constant chronic wide spread pain and an increase in pain medication hasn’t made any difference.  The complexity of Rachel’s medical needs is impacting her life daily. 

Rachel is due to have further test and bloods carried out by the allergy and immunology team due to ongoing issues with her gut, swollen face and lips, distended stomach and issues regulating her blood temperature. They are also looking into her genetics, DNA and her Laminopathy. 

The diabetic team are constantly increasing the amount of insulin Rachel takes as her blood glucose levels are constantly high. (Rachel now takes more insulin than any adult or child the team see) Rachel is having to inject insulin every two hours, which isn’t nice. If Rachel’s blood glucose levels don’t improve by the end of July she will be admitted to hospital to be monitor and tests carried out.  Rachel’s CFS/ME has left her feeling fatigued, her concentration none existent. No amount of sleep is refreshing her. 

Covid-19 has impacted the whole family due to Rachel being extremely vulnerable. It has left Rachel feeling even more isolated then she already did.  Rachel is very down and feeling overwhelmed by all of her medical and health needs and the impact they have on her.  Rachel would have been finishing her last year at high school but due to her multiple medical and health needs Rachel hasn’t attended school for nearly 4 years.  No GCSEs and no prom. 

We have made the decision to pause Rachel’s schooling at 16 years old and focus on her health needs and enjoy the moments. We would like to thank everyone at PostPals that has sent Rachel post and the two wonderful Mini Mouses she has received. 

You have all brought smiles to Rachel’s face which is priceless. 

Update 27th November 2019

Life continues to be a struggle for Rachel, having to deal with the challenges that so many medical conditions brings and with that uncertainties for her future.

She has spent most of November feeling yuk: fatigued and in bed, resting, sleeping and lying down. Trying constantly to distract herself from the widespread pains. She’s sick of being diabetic now and hates having to inject the insulin and have her blood glucose checked so often.  Too many hospital appointments and meeting.

Loki her puppy continues to bring her love, happiness and a much needed companion.

Rachel continue to love receiving post from PostPals. It brings her happiness and makes her aware of the world and how thoughtful people are.

Thank you from the bottom of my heart for sending post to Rachel and making her feel special.

Update 1st September 2019

Rachel’s had a rubbish summer backwards and forward to the hospital. 

Rachel has been diagnosed as insulin dependent Diabetic. At the moment she has to administer insulin subcutaneous at least four times a day and do her bloods eight or more times a day. More medication to add to the collection. Rachel is at the hospital every week till her glucose levels stabilise. She also has the diabetic nurse and dietitian coming out regularly to check on her. 

This diagnosis has come as a shock and as a family we are still trying to get our heads around it. 

Her CFS/ME hasn’t been the best and Rachel’s still having days when she can’t walk or move parts of her body. She’s tired all time, feels rotten and looks very pale with  headaches most days. 

Rachel is very down at the moment as it will be another school year that she doesn’t attend, and this would be her GCSE school year with Prom.  It’s over three years since she last went to school. 

On a positive note Rachel’s puppy Loki has settled in and Rachel adores him. They spend as much time together as possible, snuggling on Rachel’s bed. 

Rachel has loved all the post and gifts she has received from the Post Pals. It makes her feel part of the outside world. It makes her feel valued and that people care about her. 

Thank you from the bottom of our heart to everyone that has sent Rachel cards, letters, postcards and gifts. You have all made her smile and that is priceless. Thank you xx

Update 20th June 2019

Life has been a struggle for Rachel since her last Post Pal update. Her complex medical needs have continued to impact her daily life and cause problems with her health. Rachel has had days when she physically can’t walk, stand or move her arms. Alongside this she’s has constant chronic widespread pain. She’s had a constant headache for over 30 days and to top this off her blood sugar levels have been all over the place. (This is now being investigated.) The teams involved feel these added health issues are part of her ME/CFS. 

Since Rachel’s last update she’s been diagnosed as being moderately visually impaired as she has constant double, blurred vision with black silhouettes. Rachel continues to have issues with breathlessness due to her lung function being between 35/50%. This causes Rachel stress as she panics when she becomes breathless. We have reached three years since Rachel last went to school. Since January she’s only managed a few hours of school home tutoring. It’s hard this time of year as children are getting their school reports and next year’s teachers. Rachel would have been going into her last year of high school and taking her GCSEs and having prom. Sadly none of which is going to be possible.

Far too many hospital appointments and hospital admissions, planned and unplanned, to manage the complexity of Rachel’s health and medical conditions. 

On a positive note we got Rachel a little puppy dog called Loki. Rachel adores him and he gives her purpose. 

We can’t thank you all for the lovely letters and cards Rachel has received.  You are all wonderful, caring people. Thank you for the smiles you have given to Rachel which are priceless. 

Update 1st March 2019

2019 has been a busy year so far for Rachel. It started with a three day admission to check Rachel’s heart and stents under GA in the cath lab. Rachel’s heart is looking fabulous, but her stents needed to be ballooned back up. Lots of test carried out. Transplant clinic continues to be every 8 weeks.
Rachel’s has had a MRI on her legs for her Muscular Dystrophy and a MRI on her head due to blurred vision, headaches and sight issues. No results back yet, but all very stressful for Rachel.  Lots of hospital appointments, MDT meeting and involvement from CNDS team.  Life is driven at the moment by Rachel’s chronic widespread pains, Muscular Dystrophy, ME and generally feeling yuk. This is all causing massive sleep issues.

We are very proud of Rachel as she has managed 30 minutes of home tutoring so far this year.

On the 10th February we celebrate Rachel’s 7th heart transplant day which is always very emotional. Happy that Rachel has made it this far and we are able to celebrate another milestone, but sad that another family has another year without their loved one.  We also celebrate Rachel’s 15th birthday. We can’t thank everyone enough for all the cards that Rachel received for her birthday. When your child doesn’t attend school they don’t tend to get many, so you all made her birthday very special.

Thank you to everyone that has sent post to Rachel. Sorry that I am unable to thank you all personally but you’re all amazing.
Seeing Rachel smile and laugh as she opens her post is priceless. Thank you

Update 2nd November 2018

Rachel’s health is still plagued by chronic diffused Pain. The Chronic Fatigue Syndrome has not been good and Rachel has been bed bound for days and days. Sleeping and resting more as she tries to take her mind off the pain.

Rachel is struggling to handle all of her complex medical needs and as a family we are trying to deal with this together.

Due to the weather change and added stress and anxiety Rachel is enduring at the moment her Raynaud’s Phenomenon is flaring up more and more.

The results from the endoscopy showed that Rachel has Centrally Mediated Abdominal Pain Syndrome, which means she is now living with a constant chronic pain to her abdomen. Rachel is seeing the Pain Team about this.

Rachel has lots of hospital appointments over the next two months up to Christmas. Hopefully some answers to why her face and stomach swells up everyday, a plan to help with the constant pains and an opportunity to catch up with the Muscular Dystrophy and transplant team.

All the consultants and specialist involved in her care are trying to support her the best they can and give her the best possible future.

On a positive note Rachel has had an assessment for a Power chair which hopefully will help give her a little independence and help ease the pains to her legs and feet.

I would like to say the biggest thank you for all the post Rachel has received since her last update. She’s been overwhelmed by it all and you’ve made her so happy, she’s loves opening it all. We read all the cards and letter together.

Thank you to everyone that sends post to Pals and spreads so much happiness around.

Update 9th September 2018

We have now hit the two year mark since Rachel last attended school and there’s no sign of her returning due to her many complex needs. Rachel is very low at the moment as her sister had left to go to uni and everyone is talking about going back to school. Too many hospital appointments to keep up with and more medication changes and more medication to be added.  Life is tough and at Rachel’s age she is more and more aware of how her body is letting her down and that there are many things she can’t do any more due to her LGMD1B. Living with a constant abdominal pain and joint and muscle pains is very tiring and causing her to feel fatigued even more. Rachel rests a lot during the day and uses her wheelchairs whenever we are out. She has two admissions due this month, at least 5 teeth out, and an endoscopy.

On a positive note, we are due to start renovating the garage into a downstairs bedroom and wet room for Rachel to give her more independence. This will hopefully help her feel more part of the family. As she can’t manage stairs very well and at the moment is isolated upstairs.

Rachel has loved all the post she has received and it’s the one part of her life that has remained normal and FUN. The gifts and cards she has received have been personal and very touching. Thank you everyone. I don’t get on Facebook very often to say thank you but we really appreciate everything you all do.

Update 20th July 2018

Life isn’t the best for Rachel, with her complex medical needs giving her ongoing health issues. At the moment she has to endure 1-3 hospital appointments most weeks, weekly physio and weekly subcut infusion. She’s also waiting for three admissions for procedures to be carried out. Rachel had her first appointment with the Genetics team after being diagnosed with a rare progressive muscular and skeleton disease – Muscular Dystrophy LGMD1B.

This appointments was extremely stressful for Rachel and a eye opener for us all. Rachel’s lung function is only 50-60% and this would explain why she gets breathless and tired. Her wrists and fingers have developed contractors and she needs supports to help ease the pain. Rachel has pains in most of her joints, but the pain is worse in her ankles, knees, shoulders, back and wrists. The muscles are weakening in her arms and legs. Rachel has been referred for hydrotherapy to help ease the pains and relax her muscles, and pain management to help control the pain she is in.

As this is a rare genetic mutation, no one can say yet how progressive it will be. They can only monitor Rachel and support her. Rachel is struggling to come to terms with the diagnosis of LGMD1B. She finds it hard to see a positive future when so many things she use to be able to do she can’t any more and she’s aware that the diagnosis is progressive.

Rachel’s chronic abdominal pain is causing her lots of distress and this really doesn’t help her Chronic Fatigue Syndrome and she can be bed bound for days. She’s due to have an endoscopy very soon so they can make a diagnosis. Rachel can have days and days when she can’t sleep due to the pain. It’s hard as the pain in her stomach never goes away.

Cardio transplant clinic continues to be every 8 weeks and Rachel is due there next month. Lots of tests to be carried out.  Alongside this, she continue to see the respiratory and immunology team. Chronic Fatigue – ME – continues to be a struggle. Rachel feels tired and fatigued but is unable to sleep due to the pain. Constantly feeling tired.  Rachel’s having weekly physio which, sadly, is a reminder to her of what she can’t physically do any more. But hopefully it will help in the long run.

It’s been two years since Rachel last attended school and at the moment there’s no plans for her to be able to return. This causes isolation and can make Rachel feel very lonely. This time of year is especially hard on her as everyone is getting a school report, going on school trips and having leavers parties. Through all the hospital appointments and ongoing health issues, with the support of Post Pals we try hard to make life as happy and fun as possible.

We managed to attend the Post Pal trip to Chessington, which was truly amazing and we made many, many happy memories.

Thank you so much for the invite.

Thank you for the ongoing support Post Pals has given to Rachel. The happiness the post gives Rachel is priceless.

We really appreciate you all and can’t thank you enough.

Thank you xxx

Update 10th March 2018

I’ve struggled with this update as it makes it all seem even more real.
I am such a positive person but life is rubbish at the moment as we are all trying to get our head around Rachel’s rare genetic diagnosis and what this means for Rachel. A recent appointment with the Genetics Professor left us with even more questions and a very upset Rachel. Lots of leaflets on Muscular Dystrophy and more appointments. Trying to remain positive. She is still living with the chronic abdominal pain.

Update 4th November 2017

Rachel has recently been diagnosed with a Rare Genetic Muscle disease: Lamin A.C gene – Laminopathy  De Novo Lamin Mutation LMNA c.868G>A (p.GLU390Lys) Skeletal muscle disease. Muscle weakness and contractures. There’s no cure for this condition. Rachel will need to have long term physio and hydrotherapy to help reduce the muscle and joint pains. We are waiting to see how this will effect Rachel short term and long term.

This would explain why Rachel can’t do certain physical tasks she used to and how her wrists and fingers have formed and can’t be moved as much. She struggles to write. She’s been having terrible trouble with her wrists, legs and back. Genetics want to keep a close eye on her breathing as this is also one of the problems related to this genetic mutation. Rachel’s had the OT out and they are applying for a stair lift and to change our main bathroom to make life better for Rachel.

Rachel’s also having a terrible time with stomach pains which aren’t relived with any pain relief. She’s endured a few trips to A&E and 5 days admission into hospital.  No answers yet, had CT scan of her stomach and lots of bloods taken. This is all getting Rachel down. We are desperately waiting for a plan and a way forward. Rachel’s been referred to pain management.

ME – Chronic Fatigue continues to be a struggle, with Rachel feeling tired and fatigued but unable to sleep due to the pain. She’s spending all her time lying around in her bed staring at cartoons and constantly feeling tired. Rachel had an overnight admission to hospital for her Cardio transplant. Rachel is waiting for CT of heart and blood results. Rachel continues to attend transplant clinic every 8 weeks to make sure her heart is ok.

Rachel’s list of consultants and medical conditions is getting longer: Vascular, rheumatology, Cardio, neurology, Dental, Gastro, physio, hydrotherapy and Genetics to name a few. At the moment it’s all getting too much for Rachel – she’s feeling that she’s never going to get back to school and be pain free. She’s struggling, as she has that many consultants and specialist involved in her care that at times it can be overwhelming and hard to manage especially as she’s autistic.

Thank you to everyone that supports Post Pals and sends Happy Post. The post Rachel receives gives her an opportunity to forget about her complex medical needs and feel very special. Rachel loves opening the post and gets me to read them to her (Rachel’s concentration isn’t the best). Thank you from the bottom of my heart, for all the smiles you have given to Rachel. Rachel now hasn’t been to school for over 16 months due to complex medical needs and she can feel very isolated as she has little contact outside the house. Please keep spreading the smiles around, you guys do an amazing job.

Rachel sends a huge hug. X

Update 1st October 2017

Rachel’s health continues to be an issue with a number of hospital admissions arranged. At the moment the biggest problem is gastro with Rachel having a constant distended stomach and pains which are causing her to have no sleep and feel generally rotten. More changes to medication and more medication added to try and resolve this ongoing problem.

Rachel’s chronic fatigue (ME) is causing lots of pains in her joints and leaving her feeling very isolated and lonely as she hasn’t attended school for 14 months now. Rachel spends most of her time in bed watching DVDs. This gets her down a lot.

Rachel’s had a few bad stomach and head migraines recently so her neurologist is looking at her medication to see if anything needs changed.  Rachel’s heart transplant means she attends clinic every six to eight weeks.  Rachel’s yearly admission is due next month. We are waiting for further cardio genetics tests to be done and a referral to a muscular genetics consultant.

Rachel has lots of hospital appointments due and her dad thinks we should get a PA to make sure we don’t miss any (lol). Having so many different medical conditions can be very hard on Rachel, at times as she feels like she never gets a break from it all. Even her consultants refer to her as the complex needs child.

We can’t thank everyone enough who sends Rachel post. The smile we see on her face when the post arrives is priceless. It gives her a chance to forget about her pains and have FUN opening them. You ALL make her feel so very special and wanted. Thank you. Rachel sends a BIG thank you too x

We all really appreciate everything Post Pals does. It’s hard seeing your child go through so much and not be able to make a difference but seeing Rachel so happy receiving post is wonderful to see.

Update 5th June 2017

Rachel is still off school and has been since last year, emotional upset and her concentration is very poor. She’s due to start FOBMAP diet due to her Gastro issues so she can’t have any chocolate and most sweets. (No wheat, dairy, gluten and loads of other things), Rachel is very distressed about this as she loves chocolate.

Rachel’s been getting more pains in her feet, legs and knees. Her consultant feels it’s due to Rachel not being active due to her ME-CFS and she now has daily physio to do in bed. Hopefully she’s going to get a new wheelchair this week.

Rachel’s been struggling with her weekly subcut infusion (realisation that it’s for life) and the pain it causes hopefully this will settle down otherwise it’s back to having it done in Hospital.

Rachel still attends cardio transplant clinic every 6-8 weeks for all the regular tests.

Rachel and I would like to say a BIG thank you for all the welcome cards and goodies that have been sent. You have all put a BIG smile on Rachel’s face. I’ve not seen her this happy in a long time. Sorry that Rachel’s not up to writing replies but she loves me reading them all to her and helps me reply on Facebook.

Thank you from the bottom of my heart x

Update 29th October 2025

Ryoo has spent more time in hospital than at home.

Ryoo has dialysis three times a week every week. At this point, Ryoo is not suitable for a kidney transplant.

Luckily, Ryoo’s service dog Loki goes with her everywhere and helps massively with her mental health.

Ryoo has been having issues with her tunnel line and after weeks and weeks of trying to save the line, she had to be admitted to hospital for an emergency tunnel line to be placed and a new jej tube. Ryoo is waiting for a fistula to be created so they can access dialysis this way. Ryoo also needs an angiogram on her head done. Ryoo has a blood clot that the haematology team are trying to dissolve with high daily doses of blood thinners. She’s back on insulin as her blood sugars are all over the place. Ryoo gets very tired and lives with constant chronic pain.

Ryoo and Loki have been enjoying their monthly stay at St Oswald’s Hospice.

Ryoo, as always, tries to remain positive and the Post Pal post always helps her do this.

Update 21st August 2017

Rachel continues to struggle with her ME and she has days when she physically can’t get out of bed and relies on her daily painkillers to enable her to move. Rachel is seeing more and more specialists to help with her ME, Hyper Mobility Syndrome and joint pains.
Rachels is also having more Genetics tests done due to her heart transplant and finding a problem with one of her genetic genes. Gastro issues continue with daily bloating of the stomach and more referrals and tests to find out why. Loads and loads of hospital appointments.

Thank you to everyone that supports Post Pals. You ALL really do spread smiles around. Your post gives Rachel a chance to forget about her complex medical needs and have FUN opening them and she loves waiting for the post to arrive. (I read them as Rachels concentration isn’t the best.) You ALL make her feels very special and wanted. Which when your child hasn’t been to school for over a year and doesn’t have any friends is so important. You have ALL given her so many smiles. 😊 Thank you from the bottom of my heart xx
Rachel sends a BIG thank you too xx

Story Written 2017

Maddison was diagnosed with neurofibromatosis type 1 in 2013 following treatment for a lazy eye.  Her vision deteriorated rapidly at a routine appointment so further tests were done. It was discovered that Maddie had a optic glioma brain tumour: she had 18 months of chemotherapy to shrink the glioma to a manageable size, this was successful and Maddie had been stable for two years.

Just before Christmas 2016 Maddie started having seizures, she has never had these before so she went for lots of tests.  The results from the MRI on 31st December 2016 originally looked like she had had a stroke. They repeated the MRI on 20th January 2017 expecting the signs of stroke to have decreased but the result showed a small tumour the size of a 5p coin. Doctors were concerned as there were no signs of this on the last MRI. It was decided to re-scan again on 31st January to decide what treatment was needed. We got the results on 2nd February, the results showed the tumour had grown to the size of a plum in 11 days. It was decided there and then to operate on 6th February due to the rapid growth of the tumour and do a biopsy. This operation went ahead and Maddie had a craniotomy and eight long hours of brain surgery to remove as much of the tumour as they could. On the 9th Feb a repeat MRI was done to make sure there was no bleeding on the brain following surgery and check how much tumour was removed.

On the 10th February we got the results from the biopsy, our world fell apart that day, nothing could have prepared us for the news that came next. Maddie was diagnosed to have glioblastoma multiforme – a rapid growing high grade brain tumour normally found in adults over 50 years old. It’s rare for a child to get this type of cancer, we had to make a decision as there is no cure for this type of cancer and prognosis isn’t great. Without treatment the cancer would rapidly spread to the rest of her brain and within three months it would end her life. The other option is an intense course of radio & chemotherapy every day for six weeks followed by more chemo every fourth week every day for a week. We do not know if this will work, there’s no guarantee that the tumour won’t grow during the treatment, but we are hoping that it will slow the growth down and give us up to 12 months with our precious little girl.

We are at the beginning of the treatment and hope and pray that it buys us some more precious time with our baby girl. Maddison is so full of life and is so happy and smiling all the time, even when she’s poorly she manages a smile. She’s the reason I get out of bed in the morning, paint on a smile and make every day count, even when I’m feeling sorry for myself and want to stay in bed under the covers and cry my eyes out. I look at that little face and know I have to carry on and be strong for her and keep making precious memories

Update 4th September 2018

Sadly today Maddison passed away.

Update 16th June 2018

Maddie is deteriorating week by week, she’s very slow on her feet now and prefers to spend most of her time curled up on the sofa or on my big bed with the tv remote

Update 12th June 2018

We received Maddie’s MRI results and they showed that the tumour is growing rapidly which explains the constant headache and sickness and the intermittent paralysis down her left hand side. The tumour has started to spread to the right hand side of the brain too now and it will continue to spread at a rapid rate. Glioblastoma Multiforme is one of the worst types of brain cancer due to how rapidly the tumours grow, it’s almost impossible to treat.
Now I won’t go into great detail but the prognosis is rubbish I’ve asked questions I shouldn’t have to ask, I’ve been told things no one wants to hear and I’ve had to make the hardest decisions I’ve ever had to make in my life today. We have tried every treatment available to us operations, radiotherapy, chemo, everything, we can’t go for any clinical trials now as the cancer is too far advanced.

We have been told to prepare for end of life, we are looking at a few months at most. I’ve been given a prescription to stock us up on pain medication, including morphine. I’ve got to go back in 2 weeks to write up an emergency care treatment plan. And I’ve been told to decide if we want home care, hospice or hospital etc when the time comes. I’ve been told what to expect as the cancer progresses. I’ve written and deleted this post 3/4 times as I just can’t find the right words to type I’m still feeling numb and feeling sick from the hospital visit today.

Update 14th May 2018

Maddie is really poorly at the moment. Following surgery in December to remove her tumour a 2nd time. We had a scan in February which shows that the tumour has regrown already, the hospital have decided no more treatment will be given to Maddie, we have a scan in 10 days time to see how much more it’s grown. Maddie sleeps a lot now and has lots of headaches, we have been offered palliative care to manage the pain and keep her comfortable. Sadly we think we only have a few months left with her but the results from the scan will give us more of an idea. But we can see her getting worse week by week.

Update 9th March 2018

Maddie had another 12 hour operation the week before Christmas to try a new procedure to remove as much of her tumour as possible and have glio wafer implants inserted. The glio wafer implants contain chemo which is slowly released directly onto the tumour site. She had a follow up MRI scan on 24th Feb and on the 7th March the hospital consultant called to say that the tumour has started to regrow and this was cause for concern. We are back at the hospital on 13th March to discuss the next course of action by this time our consultant will have had time to liaise with the other specialists to see if there is anything more they can do for Maddison. At the moment we are unsure what could be done next and that is if anything else can be done or if we have exhausted all options and have to let the cancer take its course and she needs to be moved onto palliative care. It’s a difficult time at the moment with the uncertainty of it all hopefully I will have more information next week.

Update 15th October 2017

Maddie’s Glioblastoma is stable at the moment, she has an MRI scan every eight weeks and chemotherapy for five days every fourth week which can make her feel a bit rubbish and sickly.