Emily M

03 November 2020

Please do not send food or drink to Emily

Story written 2020

Emily was diagnosed during pregnancy with severe heart complications. She was born locally but taken to GOSH for surgery after birth. Emily stayed at GOSH until she was 3 months old, when they then estimated she had possibly 48 hours left. Emily was transferred to our local hospital so she could die surrounded by her family. This is where I step in. I am Emily’s second cousin, her Mum is my cousin but she found it difficult to care for Emily. After Emily was transferred home to our local hospital she managed to stabilize but was still given only a few weeks left. The hospital couldn’t keep her there forever and her Mum couldn’t face taking Emily home to die. Social services got involved as expected. They were looking at placing Emily into specialised foster care which could have been anywhere in the UK. I was in a position to have Emily with me so I offered her a home. I didn’t want her to be away from family and I knew it would be difficult but Emily didn’t ask for this life and deserves love and a home. I brought Emily home on 1st August 2017. I was told she may only have a few weeks. As you can see she is still fighting and proving the doctors wrong. I have a special guardianship order for Emily and as far as anyone needs to know she is my daughter and I am her Mumma.

Emily still sees her birth Mum but not Dad. My own 4 children have brought Emily into their hearts. She is their baby sister. Emily has a whole list of medical conditions. Many feel she has Fraser Syndrome but only genetic testing will confirm this and birth mum will not have the test done. Emily is blind but this does not stop her. She is like any other 3 year old, she has tantrums and knows what she wants.

GOSH have concluded that Emily’s heart is too unstable for any further operations. So she is unfortunately terminal and we live day to day. Emily has a lot of urinary/bowel issues which often lead to UTI infections which can make her very poorly. She has been NG tube fed since birth and cannot take food orally. She has medications to help her condition.

Emily is an amazing little girl who has opened up this whole new world to me and made me realise we all just need to love and spend time together. I know I will lose Emily but at the moment we are blessed with each day that she is here.

Continue reading...

Sadie S

22 August 2020

Please do not send any food items to Sadie

Story Written August 2020

Sadie is a sassy 4 year old with a huge personality. Sadie has suffered with gastro problems since she was born and has spent over a third of her life in hospital. She has had around 90 admissions to hospital in her little life and over 20 general anaesthetics. All she has known is feeding tubes and monitors and unfortunately a lot of pain. After years of trying different feeding tubes, feeds and gut rest we are now in the middle of a very long admission to Great Ormond Street where she has now been diagnosed with a very rare condition of chronic pseudo intestinal obstruction. She is currently dependent on TPN into a central line and is awaiting an ileostomy this week.

Continue reading...

Imogen R

22 August 2020

Story Written August 2020

Immy was diagnosed with ALL in July 2016, aged 6. She had 2 and 1/2 years of treatment, but relapsed six months later in July 2019.  She has spend the majority of time since then in hospital. She had chemo and immunotherapy treatments transfused 24hrs a day for 28 day cycles, between July and November in Addenbrookes. Then she spent 100 days in complete isolation in Bristol (500 mile round trip from home) having a Bone Marrow transplant.

We came home in March, straight into lockdown! Immy was recovering slowly, then in June she developed a rare, serious post transplant complication affecting her kidneys, so we are currently still going to Addenbrookes twice a week. We are having to shield until January so this will be our second Xmas without seeing family. No school for siblings either, so cabin fever is setting in. This is day 240 of isolation and no hugs from family for us!!

Imogen has a twin sister Charlotte (10) who was going to be her donor, but it turns out they are identical (a huge suprise) so she was not a viable option and her sister has a greater risk of developing too. Imogen has a brother Liam (11) who was diagnosed with Arthritis five years ago, in multiple joints including his eye. He has had a cataract removed and is having further laser surgery in Oct. He has frequent hospital visits, has high anxiety about his meds and is very needle phobic! 

Thank goodness Immy is a real trouper, she is unbelievably co-operative with all her pokes and procedures, much to our relief, so grateful for that! She is just amazing, and such an upbeat, comedic character, a real inspiration.

Continue reading...

Nimrit P

22 August 2020

Story written July 2020

My daughter Nimrit was born on the 29th December 2013 and was diagnosed with MEN2B in october 2017, but has struggled with the symptoms all her life. I am a single parent but I am not alone, I am so blessed to have such a wonderfully supportive family and friends who have been by our side.

At 6 months my daughter started to get urinary tract infections, she didn’t respond to oral antibiotics as her infections were always ESBL ECOLI. When I mentioned to the doctor at 1 years old that she didn’t open her bowels for 5 days, I was told it was fine and that it was normal.  The days between a dirty nappy got longer and longer, from 5 days to 7 and then 11 days. UTIs were occurring regularly and trying to capture wee samples from a baby was so stressful.

Going into hospital also became a regular thing and it wasn’t long before my daughter would realise where we were going in the car and she would cry and beg for me not to take her. We would spend weeks on end on the children’s ward at Whipps Cross Hospital in East London. Nimrit was on 8 sachets of Movicol and other liquid syrup medication too and getting that into a 2 year old was not easy, so she had an NG tube fitted.

The amount of medication would often make her feel sick and the NG would often end up coming out, which only meant one thing, another visit to the hospital to be held down for the tube to be inserted again. It was a never ending cycle of UTIs, cannulation, hospital, antibiotics, medication, NG coming out, back in hospital….

Things then got much worse when I had to take her in for manual clean outs, under anesthesia. I think this was one of the hardest times for me, seeing my daughter laying motionless, not reaching for my face to touch for comfort or calling my name. After numerous clean outs they took a biopsy and they also fitted a permanent peg in her stomach. I was told the results of the biopsy were clear. Then 2 months later I took her to A&E because it had been 16 days since she had opened her bowels, which is when they looked at the biopsy results again and was told it was abnormal and showed Neuronal intestinal dysplasia (NID).

She was going to have an ileostomy bag fitted after her consultant returned from a European conference. He happened to discuss her case with a professor and he advised that as her results showed NID, they should test her for a few other things. She had the tests that were suggested and 8 weeks later in early September 2017 she was diagnosed with Men2B. She had her thyroidectomy at GOSH on the 6th Nov and is now back and forth to the hospital checking the calcitonin levels.

She has never had tears since birth and I thought this was unrelated.  She had 2 surgeries to unblock her tear ducts which were unsuccessful. The next surgery would be to break a bone in her nose and do a complex surgery, which would have left a scar on her face; with all the other problems she was having with being constipated, I decided against the surgery, and I am glad I was guided this way, because it turned out this was not unrealated, but a symptom MEN2B. Nimrit also has unrelated Talipes (Club Foot).

With all that has happened to her, she is very traumatised but still going strong.  My daughter is very aware of everything and earwigs into every conversation I might be having about her to someone. So now every time my phone rings, she says, ‘Mum who is it??? What they say??’. I know at the back of her head she wonders whether it’s the doctor calling.

From a very young age she started understanding things, my phone would ring and I would be told that based on her urine sample, she has a UTI and that she would have to go on IV antibiotics, so that meant a trip to the hospital, I would have to lie to get her out of the house. The worst thing was that I knew Nimrit was very hard to cannulate and that would mean she would be poked many times with a needle.  It would break my heart have to be the one helping the doctors to hold her.

Her consultant, the play specialists and surgeons are all great and very supportive and I find comfort in their continued support. When Nimrit plays alone she talks a lot about what she has heard, big words like my doll is constipated and had a biopsy, hearing her say this is very upsetting.

She is very cautious around people, even close family members, it has taken years for her to get close with my siblings, even then she very rarely leaves my side but over time has become comfortable with family now but at times Nimrits anxiety can be bad. Nimrit has good days and bad days. We take each day as it comes.

Update 2nd September 2020

Nimrit is having a pre opp assessment on 4th sept and me and her will need to get our covid test done. I know she will hate it as she hates swabs being done, so I am dreading it. All being well on the 7th she will have 2 surgeries done, her masses (tumors) removed from mouth and her throat procedure and airways checked. It’s all come at once but on the 17th we will meet her oncologist to discuss treatment and find out more about it. Nimrit has told her siblings (cousins who mean the world to her) about PostPals. Unfortunately she won’t be going back to school due to the surgeries.Please keep her in your prayers God bless and thanks so much to you all.

Continue reading...

Harry P

20 April 2020

Story written April 2020

Harry is 11 years old and lives with Severe Brittle Asthma and Type 1 Diabetes. He was diagnosed with Brittle Asthma aged 4, a rare type of acute asthma which has no triggers and is very hard to control. He has had several admissions to hospital over the past 7 years, and his diagnosis was changed about 2-3 years ago from ‘Brittle Asthma’ to ‘Severe Brittle Asthma’ due to the severity of his attacks and that despite being on all the right medication, it is classed as uncontrolled. Then on the 10th September 2017 aged 8, Harry was also diagnosed with Type 1 Diabetes, with no family history, this came as a massive shock. Harry now has 2 life threatening conditions that he has to live with for the rest of his life. He has good days, bad days and horrific days but his strength amazes us.

Unfortunately on the 3rd January 2020, Harry had a severe asthma attack at home, and on route to the hospital via ambulance, he had a Respiratory Arrest. Luckily the ambulance crew, and all the doctors and nurses in resus were amazing and brought my boy back. We feel so lucky to have him, we know how close it was. Harry does struggle mentally with his health conditions, school is a huge challenge and his anxiety can be so severe that he won’t want to go out and will isolate himself in his bedroom. He has a huge passion for drawing, animation and is an amazing artist, creating cartoon strips and bringing characters from programs he watches, to life.

If you look at Harry, you would think he is a normal 11 year old boy, but the daily challenges that he has to face, and will do for the rest of his life, amazes me. His strength is incredible and he is truly my warrior.

Update 20th August 2020

Harry has Severe Brittle Asthma and Type 1 Diabetes. Both of these conditions have a major effect on Harry’s life daily. With his diabetes, he has to inject insulin before or after every meal, and he can suffer very low or high blood sugars which needs to be treated quickly to avoid any more harm or damage to his body. This has a major effect on his mood and what activities he can take part in within school and socially. We are approaching 3 years of his diagnosis and Harry still struggles to adapt to this way of life. His asthma is very unpredictable. Brittle Asthma is a rare form of severe asthma. It is difficult to control and can develop into a life threatening attack. Unfortunately Harry had a Respiratory Arrest in January due to his asthma. Thankfully he made a full recovery although he has been admitted again recently in June due to a persistent cough which triggered attacks. Harry has regular appointments due to his conditions, at least once every 2-3 months.

Update 7th June 2020

Harry is currently well, but we did spend some time in hospital a couple of weeks ago after having repetitive severe asthma attacks. His diabetes control is currently poor as he’s reluctant to self care, but it is not causing him any illness due to me having to take full responsibility

I honestly can’t believe the amount of post that both Harry and Poppy have received in such a short amount of time of being with you. Its truly heartwarming and I’ll be forever grateful for people’s generosity and the time they have taken to address them both. Thank you to everyone from England, to Scotland to New Zealand to Belgium! who have welcomed us to the Postpals family xxx

Continue reading...

Rueben W

11 December 2019

*Please do not send food to this family*

Story written 2019

On the 29th May 2019 we received the devastating news that our son, Rueben, had a malignant brain tumour. We have since been on the biggest roller coaster of our lives – and we’re still riding that same rollercoaster. 

It was all action stations after receiving the news, and Rueben quickly underwent surgery at Leeds Children’s Hospital to remove the tumour. It was largely a success. We then had to endure a lengthy 4 week wait for a biopsy to come back from Great Ormond Street Hospital which would establish the intended treatment he was to receive. I can safely say this was the worst wait we’ve ever had to endure. 

Our lives were once again turned upside down when 2 weeks after we received the results then we found out that Rueben’s tumour had grown back. So, once again, Rue had another 10 hour surgery to remove the tumour. Once again the removal was largely a success. Only minutes after him reappearing from surgery and hearing this good news, Rueben then took a turn for the worse and ended up in intensive care. In a heart beat we thought we could have lost him, but this boy keeps bouncing back with a defiance that’s admirable, and within a few days he was back on his feet.

Rueben then continued treatment, having 30 sessions of Radiotherapy to both his head and spine. This left him incredibly fatigued and only received a 5 week break before having then to commit to an intense 3-6 months of Chemotherapy.

We remain confident that his treatment will be a success, but nervous that we’re battling a very challenging tumour.

‘Life is like a bicycle, stay balanced and you will keep moving forward.’

Rueben set out after his first surgery to help other children, raising a small amount of money for Ward 52 at Leeds Children’s Hospital (LGI). Now, as a family, we are dedicated to helping Candlelighters which is one of Leeds Children’s Hospital’s close cancer charities.

Rueben is currently in hospital having only been home for less than a day after 3 weeks of his Chemotherapy. Both myself and my partner are taking it in turns to look after Rueben whilst receiving treatment as we also have 6 other children in our family.

See more about Rueben’s story here:

https://www.mirror.co.uk/news/uk-news/grieving-dad-whose-soulmate-girlfriend-18966740

Continue reading...

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.

Update 21st August 2020

After a lengthy admission at Great Ormond Street from May through July this year, Amelia has had to be brave and mature beyond her years. She lives with chronic pain which the gastroenterology team have explained cannot be completely controlled unfortunately, as the stronger medications interfere with gut function. Her days are taken up with multiple medications, fluid balances and physiotherapy regimes. Night times are interrupted by medications, pump feeds and frequent wakings due to pain. In spite of all this, Amelia remains her feisty, funny and determined self (depending on your perspective and if you happen to be her parent, this can be both a blessing and a curse! 😁)
Hospital appointments continue to roll in fast and furiously, albeit mainly conducted online. When it has been necessary to attend in person, we have been very impressed with the measures taken by the NHS to safeguard and protect all. Thank you.
September 2020 sees the start of secondary school. Amelia is excited but also nervous, (as am I!) but no doubt her peers are feeling the same. We know she will tackle this with her usual aplomb and our thoughts and good wishes are with all in this situation…..especially Amelia’s teachers: May the force be with you!!  
I can’t pretend I am not nervous with COVID still very much present, but balancing mental health, social and emotional needs and education alongside physical health is so vital and important, especially in this transitional year of secondary school.  We may have to review attendance as the year progresses but we are focused on the positives. 

Update 13th July 2020

A huge thank you to all the generous, kind and thoughtful people who have taken the time and trouble to send happy mail in all forms to Amelia & George B. It has been especially appreciated during COVID19 as no doubt like many other families, we are shielding. 

Amelia has had another lengthy stay in GOSH and we have only just come home. This admission has been very hard for many reasons and COVID precautions have meant that the usual distractions of visitors, therapy dogs, entertainment teams, even hospital schooling(!) have been much missed. On top of that, we are trying to get to to grips with being told that this is the best things can be and lower our expectations of Amelia being pain free. A hard thing for anyone to deal with, never mind at the age of 11.  Nonetheless in her indomitable way, Amelia will if not “Keep Calm,” certainly “Carry on!”       

Update 27th March 2020

Amelia has attended a number of appointments at Great Ormond Street in recent months. Her neuromuscular review was a mixed outcome: she has lost more movement range in her upper limbs with more contractures and joint immobility, developed spinal asymmetry, although fortunately this is mild at present and will continue to be monitored. 

Her stamina/power has reduced further and we are trying to focus on building up small activities where we can help her with this, but it is tricky as muscle weakness and fatigue are sending her round in circles. The physiotherapist has suggested that we look at piano/key-board play to help with hand/arm therapy…we don’t have anywhere to put a great big one so will be looking into options for something portable….and ear plugs!! 😁   

Gastro issues remain problematic but Amelia keeps smiling. Thank you to everyone who gets in contact with us 🙂 and does so much for the children. Very greatly appreciated.

Update 1st October 2019

The monarch feeding device Amelia had placed in July to try and prevent needing a 3rd gastrostomy re-site has not worked out as planned and she is still experiencing pain and gastric spasms. We meet with her surgeon late October to see what thoughts are now.  Despite the ups and downs, Amelia remains her usual sassy self….which is both a good and a not so good thing depending on when she is giving out the sass!

George is still having lots of issues with his PEG-J and we meet with tissue viability and gastro nurses next week.

Continue reading...

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. 

Continue reading...

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

Continue reading...

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.

Continue reading...