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

Update 27th November 2019

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

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

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

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

Update 1st October 2019

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

Update 1st September 2019

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

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

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

Update 29th July 2019

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

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

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

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

Update 15th June 2019

On 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 20th August 2020

Isabella will be finishing her treatment the 4th of September so she is ready to move on. She is still experiencing some problems in particular due to the amount of weight that she gained during treatment and her bones being weaker than what they should be. We still have a long path ahead of us but hopefully things will continue improving.
Thank you all for the amazing letters, cards and presents, they helped Isabella and Sophie a lot these years especially at the beginning of our journey where the girls struggled to accept the changes in our lives and recently during the long months we could not leave home due to Covid-19. Every times the post arrived there was so much excitement. 
What you do is just amazing xxx

Update 23rd April 2020

Isabella is now less than 5 months away to end of treatment. She is doing ok, and before the Covid-19 crisis she was going to school 3 weeks every month. This is caused by her struggling with her monthly steroids dose. Isabella’s bones have been badly affected by leukaemia first and by the steroids after. 

During her monthly dose of steroids Isabella is unable to walk and she is in terrible pain for around a week. This has been made worst by the fact that Isabella gained a lot of weight in the last year (almost 20 Kg). 

We tried an infusion to strengthen her bones, however the infusion made Isabella badly neutropenic for over 3 weeks forcing us to interrupt her treatment for leukaemia. In order to avoid this in the future, we have now interrupted the infusions and we will restart it once Isabella’s treatment is finished. 

Thank you very much for all the cards/letters/presents that Isabella and Sophie are receiving. This really help during our 12 weeks quarantine.

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 struggles 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 26th March 2021

Not much has changed since our last update. Ava recovered well after the antibiotics she needed for the chest infection and remains at home waiting to hear when she can return to school. Finally had my new Lycra suit delivered so hoping that the support that provides will help straighten up my back and shoulders. Thank you for your continued support and lovely letters.

Update 19th February 2021

Ava remained well in shielding and was looking forward to returning to school in September. However, due to restrictions around AGPs and the use of suctioning in school, Ava’s return to school was delayed until November. Sadly then she developed two infections in her gastrostomy/tube feeding site on her tummy and ended up being admitted to hospital due to some complications the antibiotics had on her digestive system. 

However she recovered quickly and made it back to school on a part-time basis for two and half weeks just before the Christmas holidays, she had so much fun! 

We enjoyed a quiet Christmas at home, and thanks to going back into lockdown, Ava’s had to remain at home and recommence virtual learning with school. 

Lately, after a respite stay at the children’s hospice, we’d noticed Ava wasn’t quite herself and was needing more breathing support and chest physio to clear her secretions and test results shown that she is fighting a bacterial infection, so we’re just about to start a course of antibiotics.

We would like to say a million thank you’s for the fantastic post and gifts Ava, Ruby and Freya have received.

Your little hello’s, your wonderful letters have brought us so much happiness in such unusual and difficult times. 

Update 20th August 2020

Ava has been reasonably healthy lately. With the whole family in lockdown we were able to stop a lot of bugs coming into the house and this has had a huge benefit on Ava’s general health. 

She had a hospital admission in February where she received IV antibiotics for a chest infection. We work really hard on her chest therapy and nebuliser routine to keep her lungs as healthy as possible. 

We’ve had a few “virtual” appointments due to shielding and being in lockdown. Since restrictions have lifted, we’re still being extremely careful as Ava’s respiratory system is so vulnerable, we need to protect her as much as possible now before winter germs/viruses reappear. 

So we have exhausted our Disney DVD collection and busy ourselves at home, but when we start getting a bit claustrophobic we venture to the grandparents house and enjoy some fresh air in the safety of their garden.

Update 7th July 2020

What a strange few months we’ve had! Lockdown has been a very different experience for us all, however we’ve stayed safe and Ava has been really well.

I think the slower way of life and little exposure to every day germs has done her the world of good. It’s been quite a challenge to try to complete Ava’s care/therapy needs, along with her home schooling and her sisters homeschooling schedules too. Our days got very busy, very hectic and we felt completely overwhelmed with it all, so had to slow things down and not stress about what wasn’t finished. 

Due to shielding Ava, we were lucky to have a small garden to enjoy some sunshine and fresh air so didn’t feel completely trapped inside the house. 

We still can’t believe that our amazing girl turned 10! It was a huge milestone we never thought we would see. 

Ava celebrated with lots of Frozen 2 decorations and cake. It was a totally different day to what we had originally planned, so hopefully we can make up for it with a big party next year. Huge thanks to everyone that sent Ava a birthday card and/or gift. It’s so very thoughtful and we feel very humbled that so many people cared and sent best wishes in her direction.

I must apologise for the lack of personal thank you’s to each individual because since Ava’s birthday we welcomed a new baby girl into our family and our days have been busy on a different level. Girl number 4!! Millie Faith is adored by all her big sisters and has now completed our family. Ava spends lots of time looking, smelling and having a feel/cuddle with Millie. 

Much love and a huge thank you again to everyone who sends post in our direction. The girls really appreciate the kindness and gives them a much needed boost.

Update 27th November 2019

Ava had surgery on her tummy to remove a surgical mesh used to hold her bowels inside her abdomen (after surgery in 2016). She did absolutely amazingly well to recover so quickly after the operation, but sadly her incision opened and we’ve had to dress it daily for the last 4 weeks to get it to heal. All this time off school recovering but hoping to return back part time in December to enjoy some of the fun before Christmas holidays begin. 

A big temperature spike (20th Nov) in the middle of the night caused Ava to have a big seizure, and as predicted wouldn’t stop after her rescue medication so we had to call 999. After a fabulous check over by the paramedics and a few phone calls to the children’s ward, we were able to keep Ava home, safe in her own bed to recover, and she’s been fine since! 

 

We have some lovely Christmas events coming up so will let you know how those go soon!  Ava, Ruby and Freya have continued to receive such wonderful monthly projects, each gift has been perfect and you know are girls so well. 

Thank you Narelle, Amy and Tasmin for your kindness and generosity. 

Big shout out and thanks to Becky B for the continued amazing Disney postcards. They really do cheer Ava up and we love finding out what you’ve been up to. 

And to each and everyone for the continued support and love. 

Ellie E for the lovely photos of your pets, and little bits that you send each month.

Rebecca F for the most delicious hand cream.

Kayte for the handmade bracelets

Thanks you to everyone who sent Sainsbury’s cards. 

To the Girl Guides who created Ava the most incredible super hero cape and story. It was fantastic!!

Sally Plummer for Ruby’s lol watch and balloon 

Bev for Ruby’s flower fairy pot and book

Emma  for the emojis

Narelle for Ruby’s  barbies and ty beanies

Albie Lockie from NZ for the lovely letter/ origami butterfly/scratch and sniff stickers.  Ava thought it was very funny that your dog was trying to stand on her letter

Emma Hendriks from NZ for the post with Disney quotes. 

Dottie mail

You’re all amazing !!!! 

Update 1st October 2019

Thank you everyone for the continued support in the lovely post we have received recently, the excitement certainly hasn’t worn off yet! 

Extra special thanks to, Becky B, Narelle, Tasmin,  Amy, Ellie E, Geraldine, Beverley, Audrey, Tashja Victoria and to GIK for the amazing box of Disney goodies!  Dottie the Dalmation, Tales of Mr G, to those who have kindly sent Disney Pixar cards from Sainsbury’s, and M&S little shoppers, we can’t thank you enough. 

Also a massive thanks to everyone who donated for Pals to receive a Wheelchair Barbie, it’s the most played with toy this past two weeks by everyone who’s been to visit us! Ruby absolutely loves her. 

Ava’s health hasn’t been too bad, in complexly needs terms, however after a few weeks of mystery symptoms and episodes we found out that she had grown a nasty group C Streptococcus bacteria on her chest. So we’ve had to up her chest physio routine at times, and given a few courses of antibiotics, which then has consequences of its own with her already delicate bowels/ digestive system! 

Really hoping that we manage to get on top of it soon before the horrible winter germs appear and compromise her even more.

We’ve also been monitoring her abdomen scar for a couple of months as it looked like a blister had developed, her surgeon suggested at first sight that it could possibly be a stitch sinus, which is very common for people who have surgical mesh, that an internal stitch irritates from within, and that once the skin opened, could be snipped and re-healed. Simple right?! However nothing is ever that simple in Ava’s world, the area has continued to increase in size, colour and appears to almost look like the mesh is being rejected, with the skin becoming very delicate and weepy. So having to be very sterile in that area now and hoping that infection doesn’t take hold. 

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 2nd December 2019

Chanel has struggled since the beginning of winter, with lots of bugs going around and she takes longer to get better than most but we have thankfully avoided hospital. She had her cardiac review and got another few months ok! She is so excited for Christmas now.

Update 1st September 2019

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

Update 21st August 2019

Apart from her new diagnosis of Epilepsy in January there has 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 21st June 2021

All stable at the minute, no changes.

Update 8th April 2021

Evia would like to say thank you for all her birthday cards and gifts, she really enjoys the letters and listening to what people have been doing.

They both really enjoyed the Easter Zoom party.

 
 

Update 8th February 2021

We would like the thank everyone for both Evia and Elliott’s Christmas gifts and cards, they’ve loved every single one, putting each Christmas card up in their bedroom.

Health wise  Evia is doing well, stable at the minute.

 

Update 12th July 2020

Nothing much has really changed health wise we are still waiting for Evia’s next MRI date to come through. Due to the virus it has been delayed, she was due in February time, so hopefully it will be soon.  We did manage to move house around 3 weeks ago, which is loads better, as we now have a bigger garden, which has helped loads. 

Update 22nd April 2020

Evia and Elliott would like to thank everyone for their letters and gifts they have received. Evia has kept all her birthday cards she going to put them up in her bedroom when we move as lots of them are tactile. We were due to move house before the lockdown started which has been put on hold for now. 

Evia health wise she has now had her port took out which am so pleased happened before all this virus started. She was due a MRI scan in February, we are waiting for an appointment hopefully be soon. She is getting really good at her braille and now she teaches me.  

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 4th June 2021

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

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

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

Update 2nd June 2021

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

Update 2nd June 2021

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

Update 21st August 2020

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

Update 1st October 2019

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

Update 3rd April 2019

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

She is waiting to start immunoglobulin treatment.

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

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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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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 11th November 2021

Finley is doing well, he started secondary school in September and is enjoying it. He also got his yellow belt in Karate last month. This is really good for him to help build his strength in his muscles and also help build his confidence. He also had MRI scan last month which was clear with no evidence of disease. Legs and feet are still a struggle and still causes him pain and discomfort, he had new in soles made last week to see if that helps. The last ones made no difference so fingers crossed these will help. He has physiotherapy every 4 weeks with home exercise too.

Thank you all so much for your lovely post and continued support, it really is appreciated and it really does make Finley happy 🙂

Update 20th June 2021

Finley is doing well, he is back at school and enjoying time with his friends. His last MRI was clear with no unexpected lumps or bumps, he has another one next month and they will continue with every 3 month MRI and reviews. Finley does find them really hard to do as they are an hour long, he does get quite anxious about these, but this is the best way to check him over and make sure nothing is missed out. 

His feet still cause him problems which holds him back. He is now back having physiotherapy and also has special insoles for his shoes to help him walk with more comfort. 

Finley has recently started karate to help build his strength up. He finds it tough but he is really enjoying it. 

Thank you to everyone that has sent Finley post and has kept his spirit up.

Update 30th August 2020

Finley has been doing really well lately, we haven’t had any unexpected hospital stays since June. He was admitted for 4 days with severe tonsillitis again. His feet are still a big problem, they cause him a lot of pain when out and is stopping him from doing activities. He has been given exercises to do at home to try and help. His anxiety did get a lot better during lockdown, but know things are changing he’s starting to feel very anxious and upset. We are working on this too with his therapist. 

His is due a MRI this months to make sure there is NED and then he will have a follow up appointment with his consultant for a review. 

Thank you for all the lovely post it really has put smiles on his face, we are so grateful to all of you. 

Update 17th May 2020

Finley was due to finish treatment on the 6th November 2019, after another long 2 years of treatment, but sadly treatment lasted a bit longer than expected, because Finley’s end of treatment scan was showing something on his chest. His consultant thought the cancer was back and put him straight back onto weekly chemotherapy. This was a terrible time for Finley and his anxiety went through the roof. He had further scans but the only way to confirm if it was disease was to do a biopsy. This was going to be tricky as it was right behind the chest bone, but surgery went well.

On Christmas Eve we had the best news that the biopsy was negative and Finley could stop treatment. Finley rang the End Of Treatment Bell on 24th January 2020.

It has been one hell of a rollercoaster these last 4 years with many struggles throughout, but Finley has been AMAZING as always. He will be kept a close eye on with 2-3 monthly MRI scans and check-ups. His energy levels are slowly increasing, his immune system is low, but will build up to normal again over the next 6 months. He is really suffering with anxiety too, but we are working on that. The strength in his legs and feet are still very weak, not sure how much damage has been done yet, only time will tell. Finley has full body MRI scan due end of May, so we have everything crossed for that.

He is coping ok with lockdown, keeping busy playing games, baking, making Tik Toks, movie nights and playing his X box

Thank you to everyone that has sent post it really does make a difference and brings smiles and happiness to Finley, it really is appreciated ❤️

You can follow Finley on Facebook and see what he’s  been getting up to @ Finleys Journey

Update 13th November 2019

We are now on week 100 of treatment and have recently changed from weekly chemotherapy to fortnightly. This has made such a difference to Finley, he is doing great, his levels are good and we haven’t had any unexpected hospital stays for a while.

 Finley is going to school most days as much as he can, he does get tired, so we take it day by day. He is enjoying going to school and being with friends and learning new topics, he loves history. 

 He has also gone up a stage in his swimming lesson and got his 25 metre badge. 

His feet are still a big problem for him and they do hold him back from doing things, which does get him down when he can’t keep up with friends or walk very far. This is one of the many side effects of the type of chemotherapy Finley has. 

Thank you to everyone that has sent post, Finley really enjoys getting it, it really does bring BIG smiles to his face, it’s very much appreciated. 

You can follow Finley on Facebook and see what he’s  been getting up to @ Finleys Journey 

Update 4th March 2019

Finley has been doing well lately. He hasn’t had any unexpected hospital stays since November but is still going to hospital once a week for his weekly chemotherapy. He is now on week 70 of weekly Vinblastine. Finley has grown a bit over the last few months and has put on a little weight which is brilliant, but this meant his chemo needed to increase too. The first few weeks were tough for him, the increase made him more tired and it really effected the muscle in his legs and feet again, which was very painful for him to walk and be active. Also his liver did not like the increase, his ALT went up so we had to keep a closer eye on that and increase Finley’s water intake to 2 litres a day which is really helping and his ALT has gone down.

Finley is going to school most days at the moment. He isn’t doing full days but he goes and does the best he can which is fantastic. He has also recently started back at swimming lessons once a week to build up the muscles in his legs, he absolutely loves it. He can’t wait to start riding his bike again too.

Thank you so much to everyone that has sent post. Finley really enjoys getting it and it puts a massive smile on his face, which puts a smile on our face. It is very much appreciated by us all.

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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