Chanel M

19 October 2018

Chanel’s brother has severe nut allergies, please do not send any products containing nuts to this family

Story Written 2018

Chanel was diagnosed antenatally with a rare congenital heart defect know as Hypoplastic Left Heart Syndrome with an Intact Atrial Septum – basically half a heart. She has required four open heart surgeries, the first being immediately at birth (The Worlds Youngest Ever Open Heart Surgery Patient) making medical history and paving the way for others born like her. Her most recent was August 2017 when she was 3 and half years old and was also the hardest physically and mentally for Chanel (The first Fontan on a HLHS/IAS in the UK).

 

Chanel has and continues to go through a lot in her life – she has been tube fed since birth, had a major stroke at 2 weeks old resulting in weakness to her whole left side and cerebral palsy (but learnt to walk at 2 and half years old with the help of a leg splint), had 24 operations and procedures in total including 4 major open heart surgeries but is the happiest, kindest, most beautiful little girl ever, always thinking of others. She is utterly inspiring and teaches everyone around her to always have hope. When Chanel deteriorates again she will next need a heart transplant but we take each day as it comes and have every faith that Chanel will deal with anything that may come her way with the same fight and determination she always has.

 

Chanel loves all things Disney especially Mickey and Minnie Mouse and Princesses. She truly believes she is a real Disney Princess just like any little girl should. He favourite is Rapunzel. Chanel also loves Peppa Pig, taking photos and board games with her two brothers.

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Evia S

20 June 2018

Story written 2018

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

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

Update 18th September 2018

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

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

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

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

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Anoosha M

20 June 2018

Please do not send food or latex

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

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

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

Anoosha has been in hospital for a long time.

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Isla W

20 June 2018

Our beautiful daughter, Isla, was diagnosed with a Wilms’ tumour on her seventh birthday. Our journey began in April this year when Isla had blood in her urine. She was prescribed antibiotics but they didn’t work. Following lots of different tests, where the results kept coming back as normal.

After we discovered a swelling on her left side she was sent to the hospital for an ultrasound and MRI and was diagnosed with a Wilms tumour in her kidney.

Since then Isla has had four weeks of chemotherapy and she’s due to have her kidney removed on 22ndof May. The stage of her cancer is still unknown, so we don’t know how many more weeks of treatment she’s going to have.

She was so healthy until now and we didn’t have any idea that the cancer had been growing slowly for all this time. She is now feeling the side effects of chemo and the last month has been extremely difficult for Isla and it’s going to be a long journey for her.

Isla’s sister Enya was also a member of Post Pals and underwent chemotherapy for a different condition.

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Theo S

14 May 2018

Story Written 2018

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

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

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

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

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

Update 1st of June 2018

Theo passed away this morning.

Update 17th May 2018

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

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Finley J

25 February 2018

Story Written 2018

Finley was diagnosed on 1st March 2016, aged 6 years, with anaplastic large cell lymphoma (ALCL) a rare type of non-Hodgkin lymphoma (NHL). Like all lymphomas, it’s a cancer of the lymphatic system, which is part of the body’s immune system.
A programme was immediately put into place and Finley started intense chemotherapy which lasted for six months. Finley responded really well to treatment and he rang the End of Treatment Bell on 11th August 2016 and was in remission for 15 months with bi-monthly visits back to the hospital for check ups.
On 11th October 2017 it was sadly confirmed that Finley had relapsed and the cancer was back. This time his treatment programme will continue for two years with chemotherapy treatment once a week. You can follow Finley’s Journey here, we will be posting regular updates of his treatments and what he is getting up to as a normal everyday 7 year old boy!

Update 22nd July 2018

Since Finley had his line removed and changed to a port he hasn’t had any infections, which is great. Finley has had a few hospital stays due to having tonsillitis twice in one month and needed IV antibiotics to get rid of it.

Finley’s treatment is going well, but one of the many side effects from the chemotherapy he is on effects his nerves and muscles in his hands, feet and legs. This is very painful for Finley and he finds it difficult to walk some days. His chemo dose was reduced for a few weeks to try and give him a break, which did help and was a much needed break for him after 6 months of continuous weekly chemo. He is now back up to full dose chemo and is having physiotherapy to help strengthen his muscles.

Finley has been popping in and out of school when he feels up to it, which he has really enjoyed seeing his friends.

Thank you to everyone that has sent post, it really brightens up Finley’s day and puts a big smile on his face. It is all very much appreciated.

Update 6th March 2018

Finley has been staying in hospital more than expected the last few months, as he kept spiking temperatures and was unwell with infections in his central line. His consultants made the decision early February to have surgery and remove his central line and give him a 2 week break before putting in a new one. Finley now has a new line,but this time he has gone for the Port. Since this has been done Finley has been feeling a lot better and has a bit more energy.
Finley is still not back to school,but hoping he will be able to go back half days in the next few weeks.
Finley is currently having home schooling when he doesn’t have to be at hospital,which he is enjoying.

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Elle M

18 December 2017

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

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

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

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

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

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

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

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

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

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

3rd January 2018

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

Please keep sending cheerful post to her sister Cara.

 

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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 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 is now 8 years old and 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 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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