Amelia B

01 September 2019

Story Written 2019

Amelia is known as a SWAN – Syndrome Without A Name. She has multiple, complex medical conditions resulting from a neuromuscular disorder but as yet no unifying diagnosis. She is cognitively typical.

Shortly after birth Amelia was diagnosed with congenital upper limb arthrogryposis which caused contractures and restrictions in her upper body. She had less than 20 degrees range of movement in each arm, an obstructed airway and feeding difficulties as well as reflux.

She was initially referred to orthopaedics and physiotherapy then rapidly to paediatrics, dietician, speech and language and onwards to Great Ormond Street for multiple assessment, diagnostic and genetic testing.

Due to severe reflux, repeated chest infections and failure to thrive, aged two she had surgery to place a gastrostomy feeding tube and a Nissen’s fundoplication wrap to prevent refluxing into her lungs.

Aged three, Amelia was still failing to thrive and further investigations diagnosed gastroparesis (delayed gastric emptying with a wide range in severity of symptoms), a duodenal ulcer, multiple food intolerances and her diet was dairy, egg, soy, wheat and gluten free. We have over the years been able to reintroduce these foods in small amounts with varying degrees of success but limit consumption to prevent pain. Amelia has required yearly endoscopies since 2012 for management and diagnostic purposes.

In 2014, Amelia had her gastrostomy re-sited due to growth and gastric spasms. She experienced post-surgical complications and had to be re-admitted a few weeks later for a lengthy hospital stay and further surgery. Her recovery took over six months.

In recent months, Amelia has again experienced gastric spasms and an investigative procedure revealed this required intervention. In an effort to prevent a further re-site, Amelia went under anaesthesia to trial a different feeding device but unfortunately this has not been successful and we are therefore in further discussions with her surgeon.

Amelia has complex gastrointestinal and bowel difficulties caused by dysfunctional gut movement leading to frequent pain and severe constipation.

In 2016, Amelia had an ACE bowel stoma formed. Unfortunately Amelia’s site prolapsed on three occasions requiring further surgery and from late 2018 onwards, the washout procedures became unsuccessful because of the ongoing difficulties,

Amelia spent most of March and April as an in-patient on the gastro-intestinal ward at GOSH recently and in May 2019 had a colostomy procedure.

Amelia wears orthotics in shoes to minimise pronated (rolling) gait but Amelia’s ankles have become restricted in range in the last 6 months so she now requires overnight leg splints which have to be fitted before bed. She also wears arm splints overnight which we hope will prevent the need for surgery in later years. She requires daily physiotherapy on upper and lower limbs. This takes 15 to 20 minutes twice a day. Amelia eats small amounts orally but requires overnight feeds and at times daytime feeds to maintain growth. She has an unsafe swallow when fatigued and is at risk of choking so requires constant monitoring when eating/drinking. Past choking episodes have led to hospital admissions and airway/lung investigations under anaesthesia.

Amelia attends mainstream school with practical and physical support. She is being taught to use a scribe, dictate and work on a computer to aid her school work and minimise her tiredness. Amelia is a part-time wheelchair user due to muscle weakness, fatigue and pain. She is hyper-mobile in lower extremities which causes joints to extend beyond their range and can lead to dislocations.

Amelia takes over 10 different medications up to four times per day depending on type/timings. She needs support with all aspects of dressing and undressing although this varies depending on her fatigue levels. On “bad” days she will not be able to dress herself at all. On “good/moderate” days she may only need support with buttons, zips, shoe fastening etc.

In recent months Amelia has struggled emotionally with being different to her peers, not being able to keep up with her friends and being tired. With the help of the community nurses and GOSH, we are seeking psychological support for her.

Above all else, she is an amazing young lady; wise beyond her years, compassionate, caring and vivacious. She loves drama and singing and is an excellent mimic.

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Jack K

28 August 2019

Story written 2019

Jack was born at 38 weeks with an unknown and undiagnosed neurological disorder. He was born via C Section and as soon as he was born he wasn’t breathing. The crash team were called and whisked him off to the special care baby unit (SCBU). He had no swallow and constantly aspirated into his lungs which made him very poorly. He would stop breathing all the time and require regular resuscitation. He was on and off the ventilators and needed a tube to breathe that went into his mouth and acted like a tracheostomy tube to help him breathe. At only 10 weeks old Jack suffered his first cardiac arrest and we were tragically told we had lost him. They were pronouncing time of death when all of a sudden they got the weakest of pulses.

They continued to work on Jack and he was transferred to Sheffield Children’s hospital intensive care unit where they did his tracheostomy at just 10 week old. He still has no swallow or gag reflex and aspirates often so he will have his tracheostomy for the rest of the short life he has. He has multiple severe complex medical needs and a life limiting condition. He requires 24-7 care from specialist nurses/carers and his parents. Jack has been in and out of hospital and on and off the ventilators his whole life and is a true fighter. Jack has had 3x cardiac arrests in his life and we have had to say our goodbyes to him many times, holding him in our arms. He is such a strong little boy who fights the big fight for life.

Jack is a very inspirational little boy and despite everything he goes through everyday he still loves life. He is a very special and inspirational young boy. He has repeated chest infections roughly every month and blocks his tracheostomy every day requiring emergency intervention due to how severe his secretions and lungs are. He requires a lot of specialist care to keep him alive. His lung is being crushed from his worsening scoliosis and he suffers from low oxygen levels and his heart rate dips overnight requiring emergency intervention. He has had many operations in his life and we have been told he is life limiting and his conditions will take his life. They can’t operate on his spine as they have said he is too poorly and wouldn’t survive the operation. He is known as the miracle child to have survived to the age he has. 

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Henry D

06 May 2019

*Henry cannot eat, please do not send food*

Story written 2019

Henry was born on 27th July 2015 at just 26 weeks. Henry stayed in hospital for the first 14 months of his life. Henry came home on oxygen during the day and at night. Henry was diagnosed with Costello Syndrome. Around 400 people world wide have Costello syndrome. In August 2017 a lump was found in Henry’s testicle, he was diagnosed with Rhabdomyosarcoma stage 1. Henry had this operated on and had chemotherapy, he is remission from this.
In October 2017 Henry was diagnosed with Hepatoblastoma stage 2 but as he has been well for some time it was decided to watch and see.
Henry started pre-school in September 2018, he really looks forward to going and seeing his friends.
After an admission to HDU at Christmas, Henry’s blood tests showed possible change to his liver and after monitoring blood tests and scans it was decided to commence chemotherapy again. Henry also now needs an operation to remove the cancer in his liver.
Henry is such a strong, happy chap who loves going to pre- school, spending time with his friends and family. He has been on such a long journey in the 3 ½ years since being born.

Update 1st September 2019

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

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

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

Update 29th July 2019

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

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

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

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

Update 15th June 2019

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

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

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

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

Update 8th March 2019

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

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Isabella H

28 October 2018

Isabella was a happy and healthy 7 year old girl.

In early March this year she came back home complaining of back pain. I gave her some paracetamol, as the teacher said that she did not fall down or hurt herself. The pain remained for a few days without getting worst or better, then one day when it was snowing in the middle of March, Isabella was unable to walk, the pain in her legs was excruciating. She could not stop screaming. I went to the GP and they agreed to book a visit for an Orthopaedic consultant. Time passed by and Isabella felt worse and worse. She was in such pain that one day she vomited from the pain and at that point I got fed up waiting for a referral and I took her to A&E. Twelve hours later Isabella was diagnosed with ALL (Leukaemia). Two days later she started the standard protocol. After eleven days she was allowed to go home for a few days but after two days she was admitted again and her protocol was changed, as from the cytogenetics it was discovered that she had a sub type of Leukaemia called IAMP21 which was more aggressive and needed stronger treatment. She was therefore moved to Protocol C. Being on the highest protocol our options were reduced, and if the chemo was not working she would have to undergo a bone marrow transplant. However, at the end of Phase 2 in August we were informed that Isabella was reacting and we could carry on with the standard protocol. Isabella is now mainly at home and doing Phase 3 (Capizzi Interim Maintenance). She went back a few half days to school, but she is generally very tired. She lost all her hair and she is very upset about that and she is looking forward to being “herself” again. However, she can now move and she has not been using a wheelchair since July.

Update 18th September 2019

Isabella has been okay lately. She finished a very hard, phase 4, part of her treatment Delayed Intensification in January 2019 and she started Maintenance, phase 5, a few weeks later when her numbers recovered. If all goes well, maintenance will last until 04/09/2020. 

After a few weeks of maintenance Isabella was able to return to school part time, slowly building up. In early September she was back full time, however after a few full days, she was admitted to the hospital due to an infection. 

In May, Isabella managed to have her central line removed. This was very important for her, as she developed an allergy to all types of dressing and she was in terrible pain. It was very hard for her because she needed to prove to the medical team, that she will cope with weekly finger pricks and canulas inserted when she needs antibiotics or her monthly chemo dose. So far she has been amazing, coping well with all bloods and canulas. 

She is still not able to start everything that she was able to do before, for instance she cannot go back to cubs, as her immune system is still too low for all the activities involved, but she is going back to some normality. We even managed to go away for a few days on holiday to Scotland and despite Isabella spending most of her time in a wheelchair, as she still struggle walking long distances, she really enjoyed her first holiday since diagnosis last year. 

I would like  to say a big thank you to all people that have sent cards and presents to Isabella and Sophie. Every card represents a smile and I am really grateful for this.

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Ava S

28 October 2018

*Ava’s sister Freya has a severe peanut allergy, please do not send any items containing peanuts to this family*

Story Written 2018

Ava was starved of oxygen around the time of her birth. She was extremely poorly as a newborn and was rushed to intensive care for specialist treatment. Unfortunately, Ava sustained a massive brain injury and suffered lots of seizures. Her prognosis was not good, so on the advice of the hospital we switched off Ava’s life support machine and prepared for her to pass away. However, this determined little girl decided that it wasn’t her time to go and has decided to show the world just how much love and joy she can bring into everyone’s lives.

Due to the brain damage Ava has, she can’t walk, talk, swallow safely or use her body the way it was supposed to. She requires full adult support 24/7. She is fed through a gastrostomy tube into her tummy, is suctioned frequently to remove the saliva from her mouth and airways, and is oxygen dependent.

Ava has fought sepsis three times and has spent time in intensive care due to a twisted colon, which was removed and she lived with a colostomy bag for nine months before surgery successfully rejoined her bowel, and then again for a respiratory arrest.

Ava has lots of medications during the day and often uses a nebuliser to keep her lungs healthy.

Despite all of these problems, Ava is a very happy and sociable little girl who is loved by many.

Update 7th March 2019

Since joining Post Pals we have been so lucky to receive the most amazing post. Every piece is read and truly appreciated. It has made such a difference in the girls’ mental health to know people think about them and really care. I don’t think we’ve ever seen them smile so much!

Huge heartfelt thanks go to:
Becky B – your postcards are just divine.
Victoria for the Valentine’s balloons and post.
Dottie the Dalmatian for my new teddy friend we’ve named Winter and your picture updates.
Fiona and Andy for the postcards.
Narelle for the most Ava appropriate monthly parcels.
Tasmin for Ruby’s monthly parcel. We loved the pictures of your dogs Sophie and Sapphire. We have a little dog called Bruiser. He’s almost 8 years old and is a Chorkie.
Audrey you sent the most wonderful Christmas book from NZ and recent postcard.
Amy G for Freya’s monthly parcel, she’s been meaning to write a thank you back but has had a huge increase in homework since starting year 9 at school.
Emma, Geraldine, Anna, Bear Hugs and Project Parent for your post and gifts.                                                                                                                            And to everyone else I’m bound to have forgotten including scout, beaver, brownies guide and school/college groups, your post has been wonderfully uplifting.

Ava has probably had one of her best winters ever in terms of her health!
Her Dad and I have worked extremely hard on keeping her chest as healthy as possible with strict physio, antibiotic nebuliser treatment and deep suctioning routine which was a success. She remains continuously on oxygen but only on a small amount, which for winter is fantastic.
Seizures aren’t usually too troublesome for Ava, but unfortunately we had one episode of her emergency buccolam medication not stopping the seizure, so we had to call 999 and ended up with a hospital visit.
This week Ava didn’t cope very well with one of the viral infections going about so ended up with another hospital trip and course of antibiotics, but she’s recovering well.

Ava attends a local special needs school. She absolutely loves being with her peers and thrives in the classroom when well. She’s learning to communicate on an eye gaze machine that she controls with her eyes. This technology is fantastic at allowing someone who cannot control any of their body movements the chance to speak.
We’ve had many appointments over the last two months: a respiratory review with a consultant at Addenbrokes, and a physio review where Ava has been measured up for her new Lycra suit and gloves. Once wearing these items she will be known as “Ava the incredible” as she’ll look like another member of the “Incredibles” family (Disney).

Sadly we had to say goodbye to Ava’s Great-Grandad as he passed away on New Years Eve, just a few months before his 90th birthday.
Ruby too has been busy, she’s been having regular hearing tests for the past year as she has hearing loss in her left ear. She finally had her hearing aid fitted and has coped amazingly with it and it’s made such a difference in her hearing!

 

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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 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.

Update 1st September 2019

As of a few days ago and after being tube fed 5 1/2 year (since birth) she is now feeding tube free.

Update 21st August 2019

Apart from her new diagnosis of Epilepsy in January there been no change health wise, she has her 6 month check up October/November time.

 

 

 

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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 9th September 2019

Evia and Elliott would like to thank everyone for the cards and parcels they have been receiving, they really enjoyed the post pals party, it was great to meet some other post pals families and everyone involved with post pals. 

Evia has just started year 2 and is settling in well she has recently had a MRI scan which showed everything had stayed the same which is good news. We are currently waiting for an appointment to remove her port which will hopefully be soon, she will then have a MRI every 6 months unless something changes or we are worried. 

Evia’s brother Elliott has just started reception, we have had a few tears at drop off but I am sure it won’t last long, he enjoys it once he goes in.

Update 16th June 2019

We would like to say thank you for both Evia and Elliott’s monthly parcels and their fortnightly letters and everyone else who sends post. 

Evia had one hospital trip this month for her ears. We were getting them checked and they needed cleaning out but she became a little anxious and wouldn’t keep still, so we had to have a trip to theatre to go to sleep so they could be cleaned. They had a good look at the left ear that was causing her problems but they said it all looked ok, so hopefully at her next scan which is in July all should be clear and if the tumour has stayed stable we should be hopefully getting her port out soon. 

Thank you once again, hopefully see lots of you at the party.

Update 28th March 2019

Evia and Elliott would like to thank everyone for their cards and gifts they have been sent. Evia received loads of cards for her birthday which she loved, she still plays with them now asking me who they are from. 

Evia has recently just had a MRI scan,  at which they  said the optic gilomar has stayed the same as last time, which is good news. They did find something on her left ear which is new, they are not too concerned about it at the minute, but want to re-scan her in 3 months. Then she may have to have a operation on it, so they have decided to keep her port in for a while longer, we were hoping it would come out this time. 

Update 28th January 2019

All of us would like to thank you for all the Christmas cards and gifts we have received. We have had lots of fun opening them all. 

Evia is doing well at the minute. She had another ear test which they said has improved since last time. She has a MRI scan due in March – hopefully all will be ok and we can then talk about having her port removed soon.  

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

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

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

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

Anoosha has been in hospital for a long time.

Update 1st October 2019

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

Update 3rd April 2019

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

She is waiting to start immunoglobulin treatment.

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

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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.

Update 6th August 2019

Isla has now finished her chemotherapy and has had her Hickman line removed. Her recent MRI scan has come back looking clear. Obviously she will be having very regular scans and check ups with oncology. We are hoping she recovers from the prolonged treatment but I know psychologically this will take a long time. Hopefully her hair will start to grow back now and she can begin to enjoy normal childhood activities. We have recently been swimming for the first time in 17 months, it was lovely to hear Isla giggle. Hopefully we can enjoy a family holiday this summer and get the recovery we all need. We can’t thank post pals enough for helping us through some very dark and difficult times. 

Update 10th February 2019

Isla has now completed the 27 weeks post-op chemotherapy and moving on to maintenance which is once a month. She has been so poorly with the side effects of the medication and we have to stay in hospital each treatment to manage her sickness.  She is still struggling psychologically with her Hickman line, but we are looking forward to having a bit of a break between treatments with just nurse visits weekly for line flushing and dressing changes. Just trying to keep her as healthy as possible as there are so many germs around this time of year. She could end up in hospital with just a cold, her immune system is not as good as other children’s due to the chemotherapy. 

Update 19th October 2018

Isla had her left kidney successfully removed along with the tumour in May and is now 20 weeks into an intensive chemo regime. It was found she has nephroblasmatosis in the other kidney that needs treatment or another tumour could grow.  The chemo drugs she is given make her really poorly and we are yet to find any drugs that help with the sickness. Due to this she has developed some huge psychological issues relating to her Hickman line and vomits every time it is accessed or chemo is spoken about. Isla has lost a lot of confidence and trust. She is having a really hard time at the moment.

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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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