Matilda B

26 November 2017

MATILDA HAS A LIFE THREATENING ALLERGY TO LATEX. Please don’t send items containing latex to Matilda or her siblings. Matilda is also unable to eat but is happy for her siblings to receive sweets.

Matilda has many life threatening/life limiting conditions which have kept her in and out of hospital all her life.

She has spent months upon months at a time in hospital and despite being away from her siblings and Daddy for long periods, she never complains and always has the biggest smile on her face.

Matilda has intestinal failure; no swallow so cannot eat or drink and therefore needs TPN to keep her alive and well. Because Matilda has ketotic hypoglycaemia she cannot control her blood sugars and they drop dangerously low even after a few minutes of stopping her TPN, so she has to have IV glucose running 24/7 too.

Matilda is completely paralysed from the chest down, so she is a full-time wheelchair user.

Matilda sees herself as any other little girl and although she knows her body doesn’t work as it should or like most other children’s she has a real zest for life and never lets her disabilities stop her from achieving what she wants to do.

Matilda attends our local children’s hospice which she loves to go to as there is so much to do there and she gets spoilt rotten.

Matilda cannot go to school due to medical reasons and her being unpredictable and unstable medically so she is home educated by Mummy.

Sadly in August Matilda’s sister Daisy passed away so its been a very tough year.

Update 24th August 2020

Sorry for the lack of updates, it’s been a very strange year this year so far and what I had hoped to update has not happened yet due to Covid 19 abruptly putting a stop to our plans.

Matilda has had a very stable few months, a few hospital admissions for surgery and routine weekly injections, infusions and bloods but we have mainly tried our best to keep her well and away from hospital as we like many others have been shielding.

We were due to go to the US this spring for major spinal surgery that we have been refused in the UK, however it has had to be postponed due to Covid. We have no idea when this will take place now, it isn’t safe enough yet for us to travel to the US nor it is safe or practical for us to be in the hospital with her for such a long period.

In my last update I briefly explained we were going for assessments abroad to see if they will privately offer her the surgery she desperately needs to improve her prognosis and prolong her life.

Those assessments were very helpful but they also told us things we did not know. As part of the assessments Matilda saw consultants from every speciality and we found out so much more about her.

The biggest shock was when she saw respiratory and pulmonary who did every test under the sun, her lung function is only 41% and her lung volume is less that 50% and she was given a diagnosis of severe restrictive lung disease. This is a great worry not only because her lungs are struggling due to her unique abnormal collapsed spine but the major surgery will affect her lungs badly and the doctors are worried about her initial recovery post surgery and the fact her lungs may not cope well.

The reason Matilda needs this surgery is because her organs are massively squashed and because she doesn’t have a belly ( she is all ribs) her organs push upwards into her chest stopping her lungs growing and working properly instead of being able to grow outwards into a belly.

Thankfully the US hospital said she was a candidate for the surgery and the feel they can improve her quality of life, her prognosis and more importantly give her lungs some room.

Without going into too much detail she will need two major surgeries  to get done what they need to do and we will have to stay in the US for 4-6 months.

 

This will not be easy for us, but we have no other choice as our case went to an Ethical Panel in England and the surgery was refused based on no experience here and the surgery deemed experimental with a high mortality rate given all her co- morbidities.

Thankfully in the US Children’s hospital they have greater experience of this time of abnormality and much more experience, they are confident the can help her and most importantly they want to help her and not just leave her to deteriorate and impose palliative care which is what they wanted.

 

As we are all trying to get back to some normality whilst Covid is still around we have been told by Matilda’s consultants that given her respiratory problems and everything else we should continue to shield as a family for the foreseeable future and that means the children not going to school. 

We have weighed everything up and given how vulnerable she is and the impending surgery we cannot risk her getting very ill with Covid so we are going to home school them all for now and see how things go with regards to cases of Covid and what autumn/ winter brings. We live in a restricted area and we have higher cases that most areas so right now I am happy to home school the kids and I feel that is best for my family.

 

The kids loved home schooling before the summer holidays, they have progressed so much and don’t seem bothered at all that they are not going back just yet so I’m happier about that as it would be harder for me to accept if they wanted to go back and were not coping emotionally.

Update 4th October 2019

I apologise for the lack of updates on Matilda, but things have been very tough for us all as a family the last 6 months, Matilda health is a cause for concern as she has had a couple of diagnosis’s added into the mix which are proving problematic to treat/ resolve.

After 2 years of suffering from severe nose and gum bleeds and lots of bruises she has been finally diagnosed with 2 bleeding disorders that are a concern and we are currently awaiting treatment plans for these now she has been referred to a bleeding disorder specialist.

Whilst I cannot go into much detail at present Matilda has been refused spinal surgery in the UK which would prolonged her life and stop her organs failing further due to the massive risk to her life during and after the surgery and the particular surgery she needs deemed experimental in England.

We are therefore going abroad in the next couple of weeks for a second opinion and an assessment from 3 other hospitals, we hope and pray one of these hospitals – who have all performed the surgery she needs many times – will accept Matilda for the surgery and save her life.

It’s been a horrendously stressful few months for us not knowing if Matilda will or will not get the surgery and whether the poor prognosis and life expectancy we have been told will become a reality or not…we are still in limbo I am afraid.

Whilst Matilda is completely unaware of the Ethical issues relating to all this, she is anxious as all this talk of surgery and not knowing where she will have it, overhearing Drs talking has all taken its toll on her and she is very sad and down in the dumps lately which is not like her and however hard we try to protect her from overhearing things, it’s inevitable someone will ask or mention something when she is around.

We have made the decision that I will take Matilda abroad for the assessments and Andy will stay home with the other children, try to stick to their normal routine and keep them in school. We felt this would be best for them at this time and they all seem to understand and are happy to stay home as they don’t want to be stuck in hospitals daily.

That doesn’t mean they won’t miss us terribly and maybe be a little sad, so if anyone wants to send Oliver, Layla and Zachary a card, letter or picture from mid October to early November they would really appreciate it and so would I.

The kids love waiting for the postman to see if he brings post and they haven’t had much lately apart from their amazing monthly parcels from their lovely parcel senders.

I think it will take their mind of things receiving some happy post.

In and amongst all this little Zachary has been diagnosed with Epilepsy which has shocked us. He had his first seizure in Feb this year and has had 5 since each requiring hospitalisation. 

I apologise for not posting on Post-pals FB page but I have come off all social media for a while whilst we are in turmoil over all this with Matilda and I am trying to keep it private and avoid all the questions I cannot answer etc, I do however want to say a huge thank you to each and every one of you who have sent the children post and to the amazing monthly senders and to Postpals for the gifts, flowers and cards you have sent.

Thank you Post Pals for all your support

Update 14th April 2019

Sorry it’s been a while since our last update on Matilda, things have been pretty hectic and stressful for us all the last 6 months.

As some of you may know Matilda was due to have spinal surgery last December, but I unfortunately broke my hand badly and had to have surgery myself the day before we were due to travel to Oxford for the surgery, so we had to cancel at the last minute.

There has since been many meetings with the professionals and various teams who will be involved in her care in Oxford and as a result of these meeting major concerns were raised about Matilda’s underlying medical conditions and how they make the surgery even more risky.

The proposed surgery will be carried out over two days under the same general anaesthetic – on day one the neurosurgeon is to operate on Matilda’s brain to put a pressure monitor inside her brain and the plastic surgeons will open her back. The neurosurgeons will then spend the rest of the day detethering her spinal cord and she will then be taken to ICU and kept under the same anaesthetic overnight. Day 2 will be the spinal surgeon removing 4 abnormal vertebrae then using rods, screws and plates they will build her collapsed spine back up and put rods in.

This will be to give Matilda the space she needs from her waist to pelvis as currently her spine is collapsed and all her organs are crushed and not working properly.

The main concern is her lungs are only 50% the size they should be because they currently have no room to grow. If they do not have room soon they will reach a point where they stop growing and they will be unable to sustain her oxygenation as she gets older.

We were told if we don’t go for the surgery the chance of loosing her is high, if we do have the surgery there is also a risk we could loose her – but as this is so unique they cannot give us any statistics.

It’s more complicated because Matilda’s organs and blood vessels are not where they should be. They are squashed, and her spinal cord is very close to the surface of her back, stuck in scar tissue. The ICU team are concerned because she has clotting problems and because she has no reserve – she cannot control her blood sugars and the risk of a severe stress response during surgery could put her in real danger.

Having said all this we feel like we are damned if we do and damned if we don’t and if this surgery is successful it will be life changing for Matilda and will change her life for the better and give her an excellent prognosis and life expectancy,

We had a big meeting with the neurosurgeons, plastics, spinal surgeons, anaesthetists and ICU consultants last week and they will now have another meeting and decide if with all the risks highlighted they meet the ethical guidelines for doing the surgery.

Aside from all this, Matilda has been very well the last few months, we have had a few quick hospital admissions for Influenza A, temperatures or infusions but this has definitely been her best winter.

Layla and Matilda have just started Brownies which is fantastic and they love it. I have to stay with Matilda but she isn’t bothered and is just so happy to be with the Brownies having lots of fun.

Little brother Zachary, on the other hand, has had his first experience of hospitals, doctors and illness as 2 months ago he had a bad seizure out of the blue one day that scared us all to death. He ended up in hospital for the weekend and has since had another one at home and one at school.

This is a great concern for us as he is fit and well and never ill. We have seen a neurologist who has studied the videos I took of the episodes and read the hospital notes and she thinks he has a form of epilepsy called Panayiotopoulos Syndrome ( it’s so much easier to spell that pronounce, ha ha) 

He has had an EEG and was put to sleep last week for an MRI scan. He has been so brave and just taken it all in his stride. We just now need to wait for the reports.

Oliver is doing well at school. He has also had a few weeks of being unsettled (Oliver has Autism), he isn’t sleeping very well and seems to have developed some anxiety issues which are completely new and we do not know what’s triggered it. 

I just want to say a massive thank you to everyone who has sent the kids letters, postcards, pictures, gifts and parcels, every one is greatly received and the kids love to receive post from Post Pals.

Update 9th September 2018

I can believe we have been a member of Post Pals for almost 9 months now! We would like to thank everyone who has sent Matilda and her siblings cards, letters, postcards, gifts and big parcels. You have all made my children very happy and put massive smiles on their faces. So much so that they now wait daily for the postman to come down the drive to eagerly see if he has any mail for anyone!

It’s been a very touch year for us as we have had to experience many firsts without our beloved Daisy….Christmas, New Year, Easter, her 21st birthday and the anniversary on her death in August. Again I would like to thank Post Pals for the love and support we have had and some beautiful messages and cards sent to us. Matilda has been relatively well this year, we have still had a few hospital admissions, mainly for operations to put in new central lines or tubes but nothing prolonged or serious which is really good news. We continue to go to hospital weekly for blood tests and for Vitamin K and A infusions but it’s only a few hours at a time so we can deal with this. We were invited on Post Pals trip to Chessington in April…it was amazing! We have never been before and we were pleasantly surprised how much there was to do there and what a brilliant adventure park it is, there was so much to do. It was nice to meet so many lovely families and meet Vikki and Ally, more friendships formed. The kids …and us had a great time, the kids loved the themed bedrooms and all the animals. Matilda’s highlight was the Giraffe feeding and the ice cream competition.

As summer comes to a close the kids are back at school … little Zachary started reception class and Matilda continues her home education with me. One of our biggest achievements to date happened this week…..Matilda won a Wellchild Inspirational child award. We went to the awards evening and met HRH the Duke and Duchess of Sussex (Prince Harry and Meghan) Matilda was all over the media and online (which she loved) and Prince Harry actually presented her award (how lucky is Matilda) I am so proud of Matilda, she goes through so much but never complains, always has a smile on her face and just takes each day as it comes.

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River W

28 October 2017

Please do not send small items River can put in his mouth or latex balloons (he doesn’t have an allergy but they are dangerous to him).

Our son River suffers from a life-threatening condition. He has an extremely rare and complex mutation on his CNK SR2 gene. There is no cure!  River will need 24/7 lifelong care and he will never really have friends he can play with or share his life with because he will never have his own independence.

River is non-verbal, but can communicate. He sadly suffers from the life threatening type of seizures, status epileptics, which are a medical emergency. He’s attended resus too many times – first when he was only 5 weeks old. I (his Mum) had to perform CPR on River when he was 2 years old and he is rushed to ressus by ambulance frequently. He also has central sleep apnoea, hypermobility syndrome, sensory processing disorder, autism, ADHD, severe learning disabilities etc.

All we can do is hope and pray our River makes it into adulthood, as we have nearly lost him so many times. We want to make the most of every day we have with him, making special memories and for him to enjoy his life to the best he can. When River is able to he loves going to theme parks, going on fast rollercoasters, watching live shows, farms, zoos, all kinds of days out, he has a real love for life and having fun!

Despite all his challenges, he is such a delightful and sunny boy, so caring and determined to fight everything life has thrown at him, and he is loved by everyone who meets him. River is such an inspiration.

Update 14th June 2021

River is now back at school after 14 months off due to Covid-19 as he got the high risk letter to shelid. Nice to have him back as its his last few weeks before he moves to High school. Unfortunately Roxi-Blue is still off school due to her anxiety and autism. Ocean is back in school now too, but also struggling with getting back into school life and his autism needs going unmet by professionals.

So we had a break away as a family to the seaside camping which was much needed and mentally helped us all as a family,  first time we have ever done anything like that, was hard work for us as parents,  but the smiles made it all worth while and was such an achievement!

Update 26th March 2021

We are all still shielding at home. 1 full year its very difficult now. No school for all 3 children,  no friends.  But we are safe.

Update 5th February 2021

We are coming up to nearly a full year of River not being able to go into school,  to see and spend time with any friends. It’s his last year in primary school and we very much doubt he will be going back at all. He’s been there since he was 2 years old as he got early intervention, so it’s so sad that Covid-19 has locked down so many children’s lifes, but we are safe.  

River got the high risk medically vulnerable letter to isolate so it’s meant his Brother and Sister haven’t been able to go to school either,  because they have additional needs they are offered a school place in lockdown. To be honest, it’s been stressful, worrying, scary and I’ve been very sad, especially now, just want hugs and happy times and freedom for our children again. Having 3 autistic children and being diagnosed with autism myself im beginning to struggle more. But feel guilty to feel this way at the same to because I’m lucky we/my family are still safe.
Everyone here in Post Pals,  thank you for brightening our days with post.

And to ALL please Stay Safe .

Update 7th July 2020

River is doing well health-wise in lockdown, not being able to pick up any bugs. Still having seizures, but managing to stay out of Hospital.
We have been fully shielding due to his condition, received the letter to not leave the house at all, so that’s been hard for River, Roxi-Blue, Ocean and us all as a family now time’s getting on. 
We knew River would be high risk so went into isolation at the beginning of March, it feels like such a long time now! But we would like to thank all our pals for thinking of us and sending things to keep the kids entertained. Keep safe our Post Pal family.

Update 27th November 2019

Still having problems with Rivers low weight, but his understanding and sense of humour has really been developing brilliantly.

Update 1st October 2019

River is taking a new medication to help with his ADHD which had worked wonders for his concentration, so his development is coming on better now which is great news!

He is having lots of little seizures at the moment which isn’t great but better than his very big ones which have caused respiratory arrest and cardiac arrest like the ones he had last year. So all in all, taking each day at a time.

Roxi-Blue, Rivers big Sister is having a difficult time with her autism at the moment so her monthly projects are something she really looks forward to and loves, thank you so much for these. Also Rivers little brother Ocean is facing some difficulties and going through some assessments so its been a very busy time.

I wish I could thank you all individually for the love you show our family, thank you Post Pals for your continuing support, our post is awesome!!

Update 10th August 2019

Well I’m currently lying in bed cuddling River due to him struggling with some bad side effects from some medication. He’s been doing really well on it, but today the dose has increased and he’s having anxiety attacks and doesn’t want to come out from under a duvet with me. But most days River has been doing a little better than he has been and that’s made us all very happy. He’s unfortunately losing a lot of weight which we are trying to control. But on the whole we are living each day to the best we can as a family.

Thank you Post Pal’s for always being there for us.

Update 2nd March 2019

River’s struggling and unfortunately his special school have noticed that since Christmas he’s stopped retaining information and not doing as well. New plans for his schooling is in process. He misses a lot due to his medical issues. His more recent tests (EEGS) show that River is having a lot more seizure activity, so this is more than likely why he’s not doing too good.

We are working closely with one of River’s consultants on different medication plans and changes to try to get his seizures under control. We hope for better days. Our family would like to thank you all for the thoughtful post you send to us. Your kindness and support brings so much excitement and smiles. And as parents reminds us we aren’t alone. Thank you so much.

Update 1st July 2018

River has missed a lot of school recently due to him having a lot of seizures needing to use his seizure rescue medication for status Epilepticus seizures. When he has made it into school he’s been getting shaking and too tired so we have been bringing him home early. But he did get to enjoy his school sports day, he was so chuffed to see us all in his school, he found it very funny and was showing us what he could do as he loved making us smile and praise him! Due to all the seizures,he has had so much trouble sleeping, getting headaches and sickness, and just generally knocking him out of sorts, so as a family we have been taking one day at a time. And when Rivers has been up to it getting him out in the lovely sunshine.
He has been receiving lovely post from his amazing Post pals, along with his big sister and little brother who have had so much fun opening cards, letters, pictures and playing with gifts. We thank you all so much, it means so much to our family, bringing so many smiles when it’s needed. Thank you.

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Skylah-Mae V

27 September 2017

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!!

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Vicki H

06 September 2017

 Story Written 2017

Vicki is a bright bubbly 14 year old, her sunny positive nature has helped her get through this journey! Her innocence and smile makes you fall in love with her! She was born with autistic locked in syndrome: this means Vicki doesn’t understand the world we live in, or when people talk to her if they ask too many questions she will walk away! She masks her disabilities very well. Vicki was then diagnosed with acute lymphoblastic leukaemia, this cancer diagnosis shook us all to the core but Vicki truly doesn’t understand what it’s all about. We are so proud of how she has dealt with the whole treatment process as Vicki will not be touched by people she doesn’t know! Vicki has severe learning disabilities, global development delay, OCD, severe anxiety, ASD and dyspraxia.

Update 1st October 2019

We would like to thank everyone for the cards and letters Vicki has received, they have such a huge impact with Vicki’s mental health, they bring kindness and a smile that is such a pleasure! She loves us to read the letters, cards and enjoys looking at your pets. Vicki loves animals.

Vicki is still on high doses of pain medications, just started her on clonidine to try and help with her tics, under a psychologist due to her extreme anxiety and looking at other underlying disabilities.  

Vicki is desperate for friends but due to her extreme anxiety and SLD, friends struggle to understand her. 

Update 11th February 2019

Vicki is doing really well from the oncology side of things. Blood tests are showing she is still in remission, which is fabulous to hear.

Nearly hitting 12 months out of treatment. Her mobility is really poor with pain all the time in them, that even medication isn’t giving her much relief. Anxiety issues are really high at home and school, constantly worrying about everything, she comes home from school every day totally exhausted and needs a couple of hours sleep! Then she is wiped out most weekends, although we do try to get her out & about. She still loves colouring and enjoying the Julia Donaldson DVDs as that’s what is watched in school. We try to encourage her to walk Teddy (our Bichon) as much as possible, as Vicki has always enjoyed taking him for walks! Not always possible but we do try to encourage her to do it.

Many thanks for your cards and letters. Vicki really does enjoy receiving them xx

Update 12th November 2018

Vicki is still struggling with pain in her bones, more so her legs she finds it very difficult to walk for any distance and stand for some time! The hospital upped her pain medications but they really knocked her about with drowsiness and headaches! Thank you for your kindness its so nice to see her smile at the post she receives.

Update 10th October 2018

Vicki is 6 months out of treatment for ALL (acute lymphoblastic leukaemia) doing absolutely amazing although the after effects of treatment have been snowballing. Vicki has been diagnosed with Motor & Vocal Tourettes, Avascular Necrosis of both legs, and severe anxiety issues. They cannot get the pain under control, so she’s on lots of different medications including slow release morphine, but her sunny nature and smiley face always brightens our days! 

Update 6th January 2018

We would like to thank you so very much for giving Vicki the chance to receive such lovely post & gifts! When things are really bad Vicki enjoys us reading the cards/postcards to her! She loves the pictures of the animals & is getting a little collection which she just sits and looks at in her own time!

Vicki still loves colouring, taking Teddy for walks when well enough, listening to music – all types! She loves going out for meals with her sisters – Jade, 25 and Amber, 17. Who also enjoy taking their sister out, dressing her up, doing her hair & make up! They also enjoy the pantomime & Disney on Ice together, we encourage them to go to for quality time with each other! Sometimes it’s hard for Vicki’s sisters to see her so unwell & it really upsets them! Disney films and musical films are still a big hit, Mr tumble makes her laugh! And she loves light-up sensory toys. Treatment for ALL is going as well as it can be! She suffers from lots of bone pains & aches. She gets exhausted easily, some days she’s too tired to get out of bed. She cannot walk far without it causing her lots of pain! Her immunity is still very low so we are constantly checking to make sure it is okay to take her anywhere. The tremors are starting to have an impact on her as carrying a drink or just lifting a cup will result in it being spilt, she’s finding feeding herself awkward & at times frustrating.

Results from the MRI scan on Vicki’s brain have shown up too much fluid around her brain & pockets of fluid within her brain where it shouldn’t be! As the high doses of steroids & chemotherapy can cause some of this, they are going to do further investigations after treatment has finished! Also doing lots of genetic testing to see if her delays & disabilities are genetic!

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Alfie B

06 September 2017

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.

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Amy O

05 June 2017

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.

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Izzy H

05 June 2017

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 22nd 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 24th 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 25th 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 26th 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 27th 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 28th 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!

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Lottie W

05 June 2017

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!

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Tayen G

02 May 2017

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 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.

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Blakely A

02 May 2017

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 11th 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 18months. 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.

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