Story written 2017

Alfie was diagnosed with cystic fibrosis at four weeks old. In his nine years of life he has had so many IVs and injections that he is now needle phobic. He takes 50 tablets a day to keep him alive. Alfie’s cystic fibrosis does not just affect his lungs, he also has liver disease and his pancreas doesn’t work. He has spent a lot of time in hospital over the years.
Alfie feels like his condition is a very lonely one, as we can’t mix with other families with CF due to infection risk.
Last year his family fund raised for an airway clearing system which helps his breathing, but he still has to have breathing treatment every day.

Update 1st October 2019

I’ve had a chat with Alfie and hes ready to move on from post pals, Thank you so much from the bottom of both our hearts for the love we have both received from complete strangers through post pals. A fabulous charity and will look back on his post in the years to come and remember people are so kind. Thank you for your hard work lots of love Janine and Alfie

Update 2nd April 2019

Alfie has just recovered from a chest infection which required 2 weeks of intravenous antibiotics. He’s enjoying having a dog, which he loves to take for walks. Alfie will be going to secondary school in September. Alfie continues to take 40+ tablets per day plus breathing treatments.

Story written 2017

In August 2014 when Amy was 7, she was diagnosed with childhood cancer neuroblastoma. A growth attached to her adrenal gland was found after a scan to find out why she kept having water infections. More tests were done and thankfully it had not spread. In November 2014 Amy was admitted to Birmingham Children’s hospital for an operation to remove the tumour, which was successful and she recovered well. She had to have regular scans to check for any relapse.

Up until November 2016 at the age of 9 and after two years of being clear, a routine scan showed it had returned in her pelvis, and chemotherapy was to start straight away. On 19th December Amy started chemo: she is still fighting and does it with a smile.

Update 10th February 2019

Amy is doing really well, she has got to ring the end of treatment bell and is progressing well. She still visits hospital regularly and has scans done as she is a very high risk of relapse, due to not being able to finish treatment with stem cell transplant.

Update 10th January 2018

Amy has just finished chemotherapy and now is on six months of maintenance therapy and then hopefully by July she will get to ring the end of treatment bell. Amy loves receiving mail from post pals and waits most days for the postman.

Update 21st August 2017

Amy has just started her next round of chemotherapy and hopefully her last. She will be having 6 rounds, each round is five days of treatment with two weeks off in-between. She is doing really well so far after her first five days on chemotherapy.

Story written 2017

Izzy is a normal 3 year old. She loves to play, she’s very quick to learn, and has an infectious gorgeous laugh.  Unfortunately, Izzy was suffering from a UTI, and antibiotics were not curing it.  We kept taking her to the GP, but when the course of antibiotics finished, her right eye and stomach started swelling. The GP wasn’t sure why, tried new antibiotics, eye drops, and suspected it could be an allergy so we tried Piriton.  The GP even felt Izzy’s liver and said it felt firm, but thought it was normal and perhaps due to her UTI.  On Wednesday 22^nd March 2017 we took her to A&E due to the size of her abdomen, and now the wheezing coming from the top of her lungs.  Sadly we were sent away, as she was not seen as a priority, and her chest sounded clear.  They did think she should have an ultrasound, but to wait for a few weeks and be put on the list for paediatric hot clinic.

Friday 24^th March 2017 arrived, and Izzy was very uncomfortable, her stomach was even more distended and hard, and she was struggling to breathe, with her eye still swollen.  So we decided to take her back to A&E at 1pm, as Izzy was not herself at all.  This time we were taken more seriously, and seen by a number of doctors, all of whom poked and prodded, and said in the end she has a problem with her abdomen that they couldn’t treat at Kettering General.  They transferred us to QMC Nottingham on Saturday by ambulance under blue lights.

We were very worried, but at this point no-one mentioned cancer to us. It wasn’t until we met a doctor who works on the children’s ward, who has experience in oncology, did she explain very calmly that Izzy has a form of cancer, and this is the reason we were being transferred.  Saturday 25^th March 2017, the day came when we moved to Nottingham.  We arrived around 16:00, and we were greeted on ward E39 by a lovely group of oncology nurses.  We felt lost, upset, angry, and confused.  We were unsure of what was going to happen, and exactly how poorly Izzy was.

We knew she was ill, but we didn’t appreciate how ill until Sunday 26^th March arrived.  So, Mother’s Day was here, our son Joseph was with his Granddad, and we were stuck on a strange ward in a city we have never been to.  The day was busy with chest x-ray, ultrasound, and blood tests.  Monday 27^th March, Izzy was told they couldn’t wait any longer, and she would be first on the list for her MRI, lumber puncture, and Hickman line to be put in.  We were told her tumours were very large, with the one on her adrenal gland and kidney being 7cm in size.  The fluids they had been pushing through her had caused her to move into tumour lysis.  We were then informed she is extremely poorly, and when she comes back from her general, she will remain sedated, and put on PICU, where she stayed for 4 nights.

Tuesday 28^th March we received her full diagnosis from our consultant, who is a true expert in his field.  We were informed she has a stage 4 B cell non-Hodgkin leukaemia and lymphoma, which is also in all three categories (this covers solid tumours, liquid, bone marrow, bone and spinal fluid).   Our lives have changed forever, and seven weeks on we are still living at Nottingham QMC, away from all our family and friends, but being supported by an amazing team on E39.

Update 17th January 2019

So now is the time we say our goodbyes to Post Pals 😢😊. We just want to say a huge thank you to all of you who have helped keep Izzy and Joseph smiling through all of the dark times we faced on our journey. We cannot believe what a fighter we have, and the strength she had to fight many life threatening infections, stays in PICU, fungal sepsis and even being positive with CRE (Carbapenem-resistant Enterobacteriaceae) and only having one medication combination that worked to get her better from that. She has a long journey of recovery to go, but she is doing amazingly.

Thank you to her monthly parcel supporters, letter and card writers, Quangle Wangle Ellie Ewbank Halima Master Beverley Ann Rudd Bev Higgins Marty Longo Anna Levermore and many more of you who have brightened her days. Sorry I cannot tag you all.

This charity is amazing, and I look forward to supporting you for the future. 
All our love Izzy and family

Update 20th December 2018

Izzy will be ringing the end of treatment bell on 16th Jan, with end of treatment celebrations. We will be moving on from post pals, and just want to say thank you so much for everyone’s post and smiles you have bought to our daughter during these horrific 20 months of her 4 year life. Much love to you all. Look forward to now being able to have a pal of my own to support. Vikki George Ally Hawthorne thank you so much. 

Update 6th August 2018

On 23rd July 2018 we received amazing news that Isabelle could stop having her IV anti-fungals Voriconazole and Caspofungin. This means so much to her and us, as now she isn’t attached to the syringe driver for 9.5 hours per day any more. She has been on those medicines for 10.5 months. We are going to Nottingham for blood tests to check the fungal infection doesn’t come back, as this caused her sepsis back in October 2017, due to invasive candidiasis in her liver, spleen and kidney.  The oncology community nurses from Northampton come once a week for blood tests.
We will keep on this new routine until otherwise.
Sadly she isn’t feeling well in herself again, at the point of writing. She has suffered from a nasty chest infection, and is in pain in her abdomen again. She also had a form of tonsillitis, even though her tonsils were removed before cancer, so this was a surprise, and a bit like deja vu. We just have everything crossed, she can be as strong as she has been, and keep everything crossed for her. Thanks to everyone for sending her post and keeping those smiles coming.

Update 6th January 2018

We made it home for Christmas after 40 weeks in hospital, and have remained at home. It was touch and go a week before, as she developed another UTI with a strain of E. coli resistant to some antibiotics, then she had an allergic reaction to one of the ones that would have worked.  It’s ok, she was put on a oral one that seems to be working, and is now on it once a night for 3 months.  We are still preparing her IV anti-fungal medicines at home, so our kitchen is half laboratory with supplies at the moment.  These infusions are attached to her and run for 3 1/2 hours in the morning, and 5 hours at nights.  We are so proud of Izzy, she has come so far from October, suffering from fungal sepsis, when the consultants were unsure of what else to try or if she would make it.  Thankfully 3 doses of IV immunoglobulin therapy saved her life during October, and November.

She has only managed 4 rounds of chemo out of the 6, and in August she was declared in remission.  Sadly the fungal infection has put a hold on her receiving the last 2 rounds, and they have decided that the risk would be  too high on making her extremely sick again.  On Jan 17th we go in for a ultrasound at Nottingham and review with Prof, this is to check the fungal infection abscesses in her liver, spleen and kidney.  They will also use it as a review for any tumours.  Bloods are being taking every week by community nurse for normal blood counts, fungal markers, voriconazole levels (as this can be toxic if too high, and is one of her IV anti fungal medicines), as well as any cancer abnormalities.

At the moment we are taking each day as it comes, and not rushing anything.  Fingers crossed she will continue as she is, and being the little fighter she always has been.

Thank you to everyone who has sent her post, cards, presents, made her some amazing gifts, or sent emails. They are really appreciated.

Update 21st August 2017

Izzy has finally completed round 4, we had one nights sleep (last night) at Billy’s House run by Clic Sargent, but now back on the ward due to side effects of the chemo. She is in quite a bit of pain again in her gut, and is already not tolerating nasal gastric feeds. She is on oramorph, gabapentin, and now a fentanyl patch has been put on today to help. Izzy has been on extremely intense chemo throughout the last four rounds, and has two to go before she can be rid of this awful illness. Over the last five months we have spent 90% of our time in hospital. With the other 10% mostly at Billy’s House, to be close to the hospital, and a few days at home altogether. At the end of August she has an MRI booked to see if all the solid tumours have gone from organs, and bone between the eyes. She will then have her bone marrow and spinal fluid analysed a few days later, to also check the cancer cells that were there, have now all gone. Nerve wracking time for us all.
A special note of thanks to everyone that has kindly been sending Izzy and Joseph post / presents and more importantly bringing them smiles. Thank you so so much!

Story written 2017

There were no signs or symptoms previously, she has always been a healthy little girl, happy, active, playful and bright – no causes for concern.

She caught a tummy bug, and it quickly spread to Mummy and Daddy, but everyone got over it and Lottie remained the same, just under the weather. She went to the childminder, and her sister mentioned Lottie’s tummy looked different that day.  Mummy collected Lottie early and went to the GP. The GP sent us to the hospital, and they did an X-ray and said Lottie had a blockage in her bowel and was most likely malnourished. Lottie’s favourite food was broccoli and sweet potato curry, she’s always had a broad spectrum of healthy foods. They then did an ultrasound….

Lottie and Mummy laid on the bed, and the ultrasound immediately showed a mass. A large black horrible looking mass. It measured 12cm.
Mummy and Daddy were told it was likely to be cancer. Within the hour we were placed in protective isolation at the local hospital and the Royal Marsden, Kings, St George’s and the Evalina were all consulted regarding Lottie’s high blood pressure and increasing abdomen.

Three days later and a transfer to St George’s was complete. Mummy and Daddy prepared for a biopsy, a Hickman line fitting and a bone marrow aspirate. Nanny slept on the floor at the end of Lottie’s bed, whilst Mummy slept in a chair and Daddy went home to look after Georgia and Jack. We were devastated, but had to remain strong.

Lottie went downhill very fast and was placed in PICU at St George’s, the mass was squeezing her lungs and affecting her blood pressure. It was splicing her diaphragm and she could no longer breathe on her own. We waited three agonising days for a diagnosis. No chemo can start until a diagnosis is reached.

On the 30th June at 1:15pm Dr Zacharoulis delivered the news. Neuroblastoma. Chemo was started that night. Immediately Lottie improved.

Seven days later she was transferred to The Royal Marsden. Seven rounds of chemo, three kidney function tests, numerous blood tests, countless nights in hospital. X-rays, CT Scans, bone marrow aspirates, general anaesthetics, NG tubes and so much more later we are fighting stronger than ever for our baby girl.

On the 25th of October Lottie had the now 3.6cm tumour removed. A gruelling 12 hour operation made successful by the amazing team at St George’s. Lottie then spent seven days in PICU, this timed sedated on a ventilator to keep her safe.

Our next steps are high dose chemotherapy, and stem cell transplant. Then comes radiation, and finally immunotherapy.

Neuroblastoma is a nasty disease, aggressive and harsh. It has a high rate of relapse and is the rarest form of childhood cancer.

Update 18th January 2018

Lottie is now undergoing treatment in the USA. We fundraised for her treatment with Solving Kids Cancer and raised a massive £155,000 to pay for a Vaccine Trial. Lottie travels back and forth to New York with her Mummy, so she misses long periods of her time at nursery. Lottie has lots of anxiety and needs a clear routine to keep her panic levels low. She also has lots of tests, such as bone marrow aspirates, PET Scans, and Ultrasounds. She is also experiencing Hypoglyceamic episodes, which means she  needs close monitoring as they come on very suddenly with no warning. Lottie can’t tell us when these are happening so we need to watch out for any tiny little signs. Her legs are very heavy and she struggles a lot with her balancing and running – some days are better than others. Currently Lottie is in remission and the Vaccine hopefully will keep her there.

Update 21st August 2017

Lottie is now in her immunotherapy phase of treatment having undergone; surgery, stem cell transplant, radiotherapy and now immunotherapy. Immunotherapy is causing lots of pain and issues that stop us leaving the house.

I’d like to thank everyone for their lovely cards, post, stickers and happy mail, they brighten our day!

Story written 2017

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

Update 11th October 2024

Update 3rd February 2024

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

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

Update 31st March 2022

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

Update 29th October 2021

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

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

Update 30th June 2021

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

Update 14th June 2021

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

Update 12th February 2021

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

Update 20th August 2020

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

Update 9th February 2019

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

Update 1st November 2018

Tayen is currently finding things really difficult.

Update 19th July 2018

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

Update 26th February 2018

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

Story written 2017

Blakely failed to thrive as a baby and was enterally fed from a few weeks old.  He failed to meet his key milestones and then enterally feeding caused him excruciating pain. At nine months old Blakely was started on TPN on which he has thrived and has caught up on all his milestones. Unfortunately, TPN comes with great risks and none greater than sepsis; Blakely has had sepsis approximately 80 times in his life and is now on his 11^th Hickman line. He is rapidly running out of access and each hospital admission is becoming harder with Blakely being more aware of what is coming next.

Update 25th March 2022

Blakely has gone from strength to strength since recovering from covid, the covid severely affected his gut for approx 18 months. Blakely struggles massively with his emotions at the moment and understanding where he fits into school etc, after having so much time off. He is now starting to settle. At his last clinic appointment, we were told that they believe that Blakely may now be strong enough to start weaning off of his intravenous nutrition which is a massive step for him. He is very excited as this will mean he can go to America which he has wanted to do for a very long time.

Update 7th November 2019

We’ve had a lot going on. Blakely has been doing well with his health (touch wood). He is reducing his TPN but is struggling with being different and hates his bag at the moment. He still loves Marvel and DC super heroes and continues to do really well with his drumming lessons at school. He’s in a band now called the mega flash penguins. 

Update 9th February 2019

Blakely’s health has been much more stable over the past few months and now has one night off TPN!!  However, he is starting to struggle with day-to-day life and explaining his emotions and feelings. 

Update 2nd September 2017

Blakely’s health has been a struggle the past month but is slowly improving and with the start of school coming we are hoping for a good spell of health over the next couple of months. Blakely loves swimming and loves being in the water. Thank you to everyone at Post Pals for brightening Blakely’s smile when he is having a bad day.

**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. Rachel now goes by  the name Ryoo but we are currently unable to change the name of her page. Since her cardiac arrest she finds her original name upsetting so please address her post to Ryoo**

Story written 2017

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

In January 2012 Rachel was taken by ambulance from our local A&E to the Freeman Hospital. Rachel 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 Rachel determined to keep going I decided to fight with her.

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

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

When we told Rachel 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 Rachel  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 Rachel when the call came that Rachel 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 Rachel the next day, she was covered in wires but she was awake and I could see those blue eyes. Rachel 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 Rachel, life has changed but Rachel embraced these changes.

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

Rachel’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 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 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.

Story Written 2017

Finn was diagnosed with ALL on the 20.10.2015 after an earache that refused to get better. He was just 3 years old. Our GP sent us to our local hospital and they diagnosed Finn in an hour.  We were transferred to Piam Brown at Southampton two days later. They confirmed Finn’s diagnosis with a bone marrow procedure. He started treatment the same day.

Sadly Finn had a reaction to the Vincristine and became very poorly. We spent literally the whole of induction in Piam Brown, seven very long weeks. Finns consultant later informed me that it was one of the trickiest ALL inductions that Piam Brown had faced.

My other son Archie, 8 at the time, suffered enormously. It was a very dark time in our family life.

Finn is now thankfully in remission and in the maintained phase of treatment.

We hope to remain positive over the next three years and try to live a normal life as much as possible although Finn has to have chemo every day.

Update 9th February 2019

Finn finished his treatment very recently. No blood draws or chemo needed, but very regular hospital trips to see that his bone marrow behaves. He is also suffering from severe anxiety which needs to be addressed. 

The Martin boys would like to say a massive thank to everyone for all their cards and gifts received. Each one makes us very happy and is truly appreciated. 

Thank you, everyone.

Update 1st November 2018

Finn is still in maintenance, still on daily chemotherapy and had a platelet problem. But he is well. Archie has moved onto secondly school and is going well. 

A massive massive thank you to everyone who takes time to send things to the boys, it’s sincerely appreciated.

**Please do not send any food containing gluten, wheat, dairy or sesame seeds**

Story written 2016

Connor was born five and a half weeks early after a difficult pregnancy. Shortly after this he was admitted to the paediatric intensive care unit as he stopped breathing. He remained in the PICU for the majority of his first year, whilst they tried to find out why he was having constant episodes of apnoea or complete failure to breathe. They eventually diagnosed Connor with Congenital Central Hypoventilation Syndrome, (CCHS). It was also discovered through a DNA screen that Connor has an extra chromosome, which has caused an array of issues for him. 

Over the years Connor has also been diagnosed with a learning disability, dyslexia, autistic tendencies, an anxiety disorder, migraines and Tourette’s Syndrome (Connor has facial and body tics and twitches and makes squeaking noises when he gets scared or excited). Connor also suffers from sensory processing difficulties. Connor has constant problems with extreme fatigue and widespread pain, which unfortunately mean that his life is very restricted. He spends the majority of his time in bed. 

Connor does not get many opportunities to go to activities or on outings, as he needs several days to recover afterwards and frequently gets ill whilst he is out. We currently do not know if this is due to Connor being severely affected by his Klinefelter Syndrome or whether it is, as some doctors feel, down to either M.E. and/or Fibromyalgia. 

Connor has had a very difficult year which has left him upset and depressed. He has always been as positive and happy as possible, given his conditions, so it has been hard for us as his family, to see him so down. 

Update 9th October 2024

As always a huge thank you to everyone who has written to Connor. It always cheers him up. 

He has had a bad few months where he again wasn’t able to leave the house, even for a short time, for around 3 months. He did, however, get his new wheelchair at last, in August, and so the worry of it breaking and him being completely stuck has gone. The new chair also has much better leg supports and that is very helpful.

We did not think Connor would be able to go to the PostPals big weekend, but thanks to Vikki and team and the wonderful people who donated to the trip, he made it and had a fantastic time. He was so pleased to see everyone and was happier than we’ve seen him in a long  while.

Connor’s interests include; Harry Potter (super fan), Lego, Minecraft, Marvel Heroes, Drawing, animals, Marvel heroes and anime.

Update 15th January 2024

Firstly a huge thank you to all Connor’s Christmas elves. You are so kind and your thoughtful gifts are very much appreciated. Also thank you to everyone who sends post to Connor. He still does keep every bit of it.

As always, thank you to Sarah Mc, Bev Higgins, Susan Russell, Sarah Heron and Zac for regularly thinking of him and sending post. 

Connor has been much the same for a long time now, struggling with a lot of pain and fatigue and getting frustrated with himself at times for not being able to do things he wants to do. It takes him such a long time to do his drawings now, as they take up so much energy but he really wants to be able to do them. He is the same with his Lego sets, he wants to build them, but he often does not have the energy to do so, which he finds difficult to accept. As he is getting older, he is becoming more and more aware of how limited his life is, in comparison to other people his age. Connor continues to be on high dose antidepressants (as well as his main medications) and we have been told he will probably always need them, given his situation.

Connor’s wheelchair had been breaking down a lot and we were told around 6 months ago that as it’s quite old now, at some point it wasn’t going to be repairable, so Connor has been very worried while he has been waiting for an assessment for a new one, that he will be left with no means of getting about. Thankfully his new wheelchair was ordered recently, so hopefully it won’t be too much longer for him to wait now. 

Connor has been trying very hard to lose some weight recently, which has been difficult due to a mixture of the medication he takes and the fact he is predominantly bedbound and permanently needing the wheelchair. He has been finding transfers harder and harder and is hoping losing some weight will help with this. 

Connor has frequently been asked if he has any pets so wanted me to put it on his update. He has an all black cat called Sirius and a calico cat called Luna (of course he named them so it was bound to be Harry Potter related). They are both nearly 4 years old

Update 9th October 2022

Thank you to everyone who has sent post to Connor recently. He saves every letter, card and drawing and they mean a lot him. 

Thank you to Post Pals for Connor’s summer smile. He loves his Harry Potter Lego sets. He’s not felt up to doing them yet but as he collects them, he’s extremely happy to know when he is up to it, he can add them to his collection. Thank you to everyone who has donated to the summer smile funds.

Thank you to Bev for Connor’s Lego set, thank you to Sarah M for the fun rainbow package. Thank you to Ellie for the lovely Harry Potter stationary set and as always, thank you to Susan Russell and Sarah Heron for the regular post that you send. 

Connor has had a very quiet summer. Unfortunately, we didn’t manage to get him out of the house at all for 8 weeks. He was just not feeling up to even a short trip outdoors. His wheelchair has now had the tilt function added, so hopefully when he does feel up to going out, this will help when his energy levels rapidly drop. We’re currently awaiting a decision from the OT’s over which hoist they believe will be most suitable and how long it will take to source it, to help Connor when he’s unable to transfer into his wheelchair without extra support.

Update 4th July 2022

As always, thank you to anyone who has sent any post to Connor. Thank you to Holly for the Marvel books. Thank you to Jen for the blanket you sent. Thank you to Lucien for your letters and as usual thank you to Sarah Heron, Sarah M, Bev and Susan for always thinking of Connor.

A huge thank you to Vikki, Dawn, Steve and Jill for all of your hard work organising the Chessington trip and thank you to Allied Mobility for sponsoring Connor’s room there. Connor would not be able to go to somewhere like Chessington without a room to rest and stay in, due to his energy levels being so low and him finding being in busy places particularly draining. Being able to go and see the animals, then rest and sleep, and then go to the sealife area the following day was brilliant for him. It was also lovely for him to spend some time with Eleanor G, as they have known each other for a long time now.

We have finally managed to get Connor’s wheelchair adjusted, as he has grown significantly since he got it four and a half years ago and he was suffering a lot of discomfort when using it for any significant length of time. Hopefully he will find it less painful now. He is also awaiting the addition of a tilt function to it, but that will take a little while longer to be done.

Update 25th March 2022

Thank you for all of Connor’s birthday cards, gifts and well wishes. He has never had so many birthday cards.

Connor has been struggling a lot with his energy levels, even more so than usual, which has led to him not being able to enjoy his hobby of Lego building much, unfortunately.

We are currently in the process of making our garden more accessible for him, in the hope that we can get him out in the fresh air a little more this summer.

We are also slowly rearranging all of his Harry Potter collectables (including the ones he got from his Post Pals elves), to make his surroundings, even more, Harry Potter themed than they already are. It really is his absolute passion. Thank you so much to Laura for the wonderful signed Luna Lovegood photograph. It is now framed and on display. Connor was very emotional when he opened it.

Update 5th January 2022

Firstly a huge THANK YOU to all Connor’s Christmas elves and anyone else who sent post to Connor and me. Connor was totally over the moon with the gifts he was sent and kept saying how amazing they were. We really appreciate the thought that went into all of them.

Also a huge thank you to Bev, Susan Russell, Sarah Mc and Sarah Heron for your constant happy post.

As always, thank you to the Post Pals team, especially Vikki, Dawn, Steve and Ally for all your hard work.

Update 29th August 2021

A huge thank you for all the post sent to Connor recently. An extra special thank you for those who regularly think of Connor. Thank you Susan Russell, for all your letters and for the wonderful basilisk ornament. Thank you Bev for your continued thoughtful post, and the amazing Fawkes lego, you always seem to know what will make Connor smile. Thank you to Sarah Heron, for her fortnightly post. Thank you to Sarah Mcclilloch for the wonderful Marvel name plaque and of course a huge thank you, as always, to the postpals team for everything you do, and organise, particularly Vikki, Dawn, Steve and Ali.

As a lot of people know, Connor is obsessed with Harry Potter and he frequently gets asked questions regarding this, so he has asked me to answer the most common here, as he can’t reply to a lot of the post. He is in Hufflepuff house, sorted by the Pottermore/Wizarding World quiz both when he was younger and when he wanted to check if he’d changed when he hit 18. His all time favourite character is Luna Lovegood. His favourite movies out of the set are The Deathly Hallows 1 and 2, but he loves them all. He does also enjoy the Fantastic Beasts franchise and would love to have a pet Niffler.

Connor has been recently been an in patient in hospital having had a severe kidney infection and UTI, he was extremely unwell and needed various treatments some of which he has had to continue at home. Although he’s never liked being in hospital, he found this time particularly difficult as he was on a busy adult ward and although we got given permission for myself to stay with him, due to his Autism and learning disabilities, there wasn’t really proper provisions set up for this either and so this upset him too.

In general, Connor is barely able to leave his bed at all at the moment, let alone get out of the house. Thanks to being able to access video chat, he is at least able to keep in touch with a couple of his friends. He is still taking a high dosage of the antidepressants and it looks like this will need to be ongoing. Connor really does appreciate every bit of post that he receives.

Update 21st June 2021

As always, a huge thank you to everyone who has sent Connor post, he really appreciates every bit he receives. He tries to reply to people who have given a return address, when he is up to it, but unfortunately he has had a lot of longer periods of being at his worst in the last 6 months, which has meant he’s not had the ability to send much.

Postpals has been a tremendous help to Connor over the years and he would also like me to thank Vikki, Ali and all the other volunteers for everything they do, as well as everyone who takes the time to write to him.

Update 30th July 2020

A huge thank you to everyone who has sent Connor post. His depression got so bad that he was put on to antidepressants in February and has had the dose raised twice since. These have seemed to help a little but the post that’s sent really does put a smile on his face.

As with a lot of others, Connor hasn’t left the house for 16 weeks now, unfortunately  for the majority of that time he has had to stay in his bed, as his fatigue and pain have been so bad.

Whilst every bit of post is greatly appreciated, Connor wanted to say an extra thank you to Bev, for always thinking of him, to Susan from America, for all the post she sends, to Gwendoline and everyone involved in the special book and to all the ladies of the Postpals Sewing Bee, for the absolutely phenomenal Harry Potter quilt you made for him.

Update 2nd October 2019

Connor would like to thank everyone who has sent him post, it is very appreciated. Extra special thanks to Bev, Penny and Susan for being beyond amazing!

Connor has been suffering very badly with pain and fatigue during the summer.Over an eight week period, he only left his bed a few times for hospital appointments and as he wasn’t really up to going out, these appointments just depleted his energy levels even more. Being in so much pain is only adding to his low mood. He also recently discovered that some of his bowel issues and chronic stomach pain is due to him being extremely intolerant of wheat, gluten, dairy and sesame seeds, so he is having to get used to a new diet.

Connor really enjoys getting his post and he does try to reply to people when he is feeling up to it, so thank you again to everyone who sends him post.