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Story Written in 2013

Hugo had a tummy ache for a couple of weeks, we got it checked out by the GP when it first started and we were told it was a viral infection. Two weeks later he was still complaining on and off of tummy ache so we took him back to the GP where we were told his liver felt enlarged and they wanted us to go straight to our local hospital. They did lots of tests and scans which discovered he had a few lumps in his liver. We were then referred to Great Ormond Street, they did a biopsy and discovered it was in fact hepatoblastoma. He started chemo a few days later. He is currently on the list for a liver transplant.

Update 2nd May 2023

After waiting for a liver transplant, Hugo got his call this morning and is currently in theatre having his liver transplant.

Story Written 2023

Kaston was diagnosed with acute lymphoblastic leukaemia on 23rd July 2020. He’s had 8 months of intensive chemotherapy treatment, lots of hospital admissions, blood transfusions, platelet transfusions, blood tests, bone marrow aspirations and lumbar punctures. In March2021 Kaston started maintenance treatment, daily chemotherapy, weekly blood tests, 4 weekly IV vincristine chemotherapy. Monthly steroids for five days, weekend medication to prevent infections. He went back to school in March 2021.

Story Written 2023

In February 2022 Niko’s and his family’s world was flipped upside down when at the age of just two years old, he was diagnosed with Acute Lymphoblastic Leukaemia, an aggresive type of blood cancer.

Niko was admitted to Great Ormond Street Hospital where he immediately started recieving blood tests, blood product transfusions and other urgent procedures including genetic testing, bone marrow tests, lumbar punctures, blood tests, antibiotics, steroids and high intensity chemotherapy. The family were told that Niko’s treatment plan would last at least 3 years and that it would involve 13 rounds of chemotherapy. A long and draining future lay ahead.

By mid March 2022, Niko’s treatment was so intense, with so many negative side effects, that he stopped walking, playing and being able to move independently. After a period of investigation and tests, adjustments to his medication, consultations with physiotherapy and special aids, Niko recovered some of his mobility around the end of April. His mobility however, still isn’t 100%. He can only walk a few steps and always needs someone to hold his hand. Niko continues to be very weak, gets very tired after just a few steps and his legs often just give way underneath him meaning that he falls over a lot.

There then followed other phases of treatment which once again involved a lot of hospital admissions and more chemotherapy, during which time Niko lost his hair for the fourth time. It was a relief to find out at the end of this phase that, althought by no means the end of the road, Niko was considered to be in remission.

It was an extremely scary and emotional time for the family.

Since September, Niko has started the last phase of his treatment. All going well, this phase will last 2 years. At this point in treatment, Niko has daily chemotherapy at home to try and prevent any remaining cancer cells from reproducing and taking over again. Niko visits his local hospital, Colchester General Hospital weekly for blood tests and every four weeks for IV chemotherapy and steroids pulses. He continues to attend Great Ormond Street Hospital for further checks as well as having lumbar punctures and infused chemotherapy into the spinal cord and fluid around the brain every 3 months.

Niko has suffered from all of the side effects and after many neurological difficulties, we discovered that it takes Niko around 2-3 weeks longer to recover from those side effects than he average child meaning that he is generally always under additional treatment with pain relief and antibiotics.

Update January 2026

On August 27th 2021 Isabellah was diagnosed with an Embryonal Rhabdomyosarcoma at the age of 3 years 3 months. She had symptoms of a cold, hay fever, nasal congestion and bad breath.

We took her to the local A&E and they said it was polyps, the Doctors also said it was polyps. That night Isabellah was skipping breaths and by the morning this unknown mass has sprouted out of her nose. We took her to a larger hospital A&E as we knew something wasn’t right.

That night Isabellah’s oxygen went as low as 64% and she had an MRI the following day. We stayed in hospital from August the 18th. By the next day we got sent to Newcastle RVI via ambulance. The oncology team were involved and ENT. Isabellah got taken to the ENT ward where we waited for a second biopsy as the first one had too much infection to determine what it was. On August the 27th we got the devastating news Isabellah had cancer.

Due to the location of the tumour (the top of her nasopharynx) she was taken to Intensive care after her Hickman line was put in for her own safety as the tumour was blocking her throat and nasal cavity. She spent 1 week there. In that week she had emergency chemotherapy to shrink the tumour, so she could breathe, speak and sleep better.

After the first week she woke up, but she began to cough, and she actually coughed up half the tumour. It was terrifying, she then had to go to emergency theatre, so the ENT consultant could burn off any potential ‘melted tumour’ that could drop off.

Isabellah stayed an extra week in ICU to ensure her throat healed. After 2 weeks she finally woke up, she was extremely restless and awake as 2 weeks of sedation took its toll. She was crying, confused, unable to sleep, irritated and seeing things on the wall. It took 2 weeks for the sedation to wear off. She then had her second chemotherapy in the new ward. During her time in ICU we found out that Isabellah’s cancer was localised and had not spread anywhere else in her body, we found out we caught it early (although it was large).

After 6 weeks in hospital we went home, only to need to go back 1 day later due to a temperature.

Isabellah had 9 rounds of intense chemotherapy, 3 weeks apart. She would be attached to wires for almost 3 days. She also had to have 6 weeks of radiotherapy in Manchester’s proton beam centre, as Isabellah’s tumour was in a place where they decided surgery may be riskier. Isabellah took really well to radiotherapy and she loved the centre so much. Isabellah also had to have a gastrostomy placed as a precaution, but she never needed it. She finished her intense chemotherapy on February 17th 2022. She then had a break for 7 weeks, she had an MRI in March and the scan looked really good. The doctor said Isabellah had no evidence of disease.

Isabellah is now on maintenance chemotherapy as a precaution for 6 months. She has just begun her 5th cycle. She may be having an extra 6 months, but a computer will decide if she does or does not.

Isabellah has been very strong, brave and happy during her journey. She is a real-life super hero and an inspiration to many people. She has a very confident, friendly and cheeky personality, we call her Mighty Isabellah.

Florence was diagnosed with Rhabdomyosarcoma on 1^st September 2021, however we were at A&E and the doctors on the 19^th August 2021.

Her tummy was looking larger than normal and looked as though it had a lump. She had an odd temperature and was going off her food and drink. She isn’t a massive eater anyway, but she usually loves her juice!

As a toddler, you don’t expect her to have a big tummy like a baby.

The doctor sent us home saying Florence was constipated. Very strange as she was going to the toilet. The doctor found it hard to feel Florence’s tummy as she wouldn’t keep still and was getting very upset. They didn’t give us anything apart from saying to ring back in 48 hours. Which I did, and he then suggested going to A&E.

When in A&E Florence had bloods taken, a urine sample and an x-ray which showed a lot of poo. Florence’s bloods came back with an inflamed marker.

We were admitted over night to stay on a ward ready for an ultrasound scan the next morning. The ultrasound showed a ‘lump’ in Florence’s abdomen area. 

I immediately thought the C word and we were sent back up to the ward. Later on, they wanted to get an MRI to get some more detailed images of this ‘lump’. Florence was sedated for the MRI scan.

When she was coming out of her MRI a consultant and doctor were waiting to speak to me, they took me into a side room and said this ‘lump’ that Florence has is ‘more than likely cancer’. They immediately wanted a CT scan to check her chest – thankfully her chest scan was all ok.

We were sent home for the weekend but to go straight back to Nottingham on Monday 24^th August 2021 where she had her biopsy and a Hickman line put in. 

Florence’s biopsy finally came back on the 1^st September 2021 as Rhabdomyosarcoma and she began her chemotherapy on the 2^nd September 2021. 

Florence has had 9 intense rounds of chemotherapy. She also had to have a pre-medicine because she had a reaction to one of the chemotherapies she had. She had an operation on the 25^th November 2021 to remove her tumour as the chemotherapy had shrunk the tumour to allow an operation. They managed to get all of the tumour, however not all the margins were clear so Florence had to have 4.5 weeks, 23 sessions of radiotherapy. 

The whole time the doctors and nurses had no idea what Florence’s tumour was attached to. Until, they opened her up on the operating table. They believe it originated from the bladder and attached itself to the bowel. The surgeons took the majority of Florence’s bladder away but it will grow and expand as she grows. They couldn’t take much of the bowel as it can lead to a stoma bag. 

Florence is currently having 6 months of maintenance chemotherapy. Florence has had and will still continue to have lots of scans, x-rays and check-ups. There are a lot of side effects to all these treatments she has had.

Update 8th November 2025

Florence is obsessed with ANYTHING strawberry, if you couldn’t tell.
From hair accessories, clothing, and toys! However, funny fact, she won’t actually eat them, and she’ll proudly tell you this.

Florence is a blind bag loving sort of girlie, anything for the surprise and picking out which one she hopes is inside. She’s also a lover of Miffy and Hello Kitty.

Florence is currently under a dietitian as her eating is still not going well. It’s a daily struggle for us. For meals out or parties, I have to create her own pack-up or go somewhere I know she’ll definitely eat.

She will only eat certain things for periods of time and then will go off them – sometimes they eventually come back into her diet, but that’s very rare. I think she uses some of these as ‘safe’ foods as she knows them. She rarely tries new things, but we are trying to encourage this massively. She does love chicken nuggets and pepperoni pizza, but it has to be certain ones because she’ll refuse if it’s not.

Florence loves being a part of Post Pals and receiving her own post and packages.
She reads all her cards by herself with minimal help. It’s amazing to hear and listen to her. She comments about the pictures on the front of the cards, the questions inside, and always talks about how kind people can be towards her.
She’s always so excited and super shocked when she opens her parcels, and she couldn’t be any more thankful to all of you for making her feel like such a special little girl.

Update 2nd November 2024

Medically, Florence continues to have scans every few months to keep an eye on her and ensuring the cancer isn’t reappearing. She is under a mental health and wellbeing support due to her really struggling with tummy aches, sleep and her eating! I can’t get her to eat much at all – she isn’t even excited for sweets/chocolate/candy, however she does love a pepperoni pizza and this is her favourite dinner to have.

She’s very much loves anything Disney, even the princesses, Barbies and Hello Kitty anything really girlie! she’s also a sucker for some makeup – lipstick, brushes, powders etc  – growing up way too quick! 

Update 28th February 2024

We had a busy Christmas celebrating with all the family, getting ready for the new year with lots of birthdays coming up. Florence is super excited for hers (15th Feb) she’s also going to Disney at half term weekend which she can’t wait for!! She’s looking forward to spending some euros in the shops – girl after my own heart!! 

The end of January was busy with grandma’s birthday and I’m just getting back on my feet from being poorly. It was awful!

Florence is doing really well at school; her reading, sounds and blending of the words she’s reading is just amazing. It’s crazy how their little brains like to soak up and learn new things. 

She’s got wonderful manners and is super kind to family and her friends. 

She’s loving dancing, singing, dressing up, performing mini shows for us all to watch. I’m thinking about getting into a drama or performing class as I think she’d thrive!

Makeup, nail varnish, jewellery (rings, bracelet, necklaces, clips on earrings) are a go to for Florence especially with a fancy, sparkly dress and her clip, clop heels she has. 

Her favourite colour is still standing strong at pink!

Her eating is still very much picky! Refuses to try new things at home but loving hearing she tries and even finishes new foods at school which I can’t get her to touch or even look at, at home. 

She’s a lover for pepperoni pizza! Sometimes just eats the pepperoni, sometimes it’s it all together and then sometimes takes it off and just eats the pizza! 

Florence’s most recent chest X-ray is clear and we are awaiting her next MRI – I’ve signed the forms for it just got to wait 3-4 months before she can have it done. Fingers crossed everything still continues to go in the right direction for her. 

Update 27th October 2022

Florence has finished her oral and IV chemotherapy and we awaiting a GFR test to see how her kidney function is. We are awaiting line removal but, at the moment she still has her line in.
Florence LOVES mermaids, she enjoys pretending to be a mermaid, playing with them in the bath and loves watching Ariel. She also loves to watch Frozen on the telly; making family act out the characters Elsa, Ana, Olaf and Sven. Singing and shouting ‘let it gooo, let it gooo’. Florence enjoys dressing up, holds her dresses and says ‘She’s a princess’ – Walking around, getting down on a knee to give rings to people. Saying ‘you king, I queen’.
Florence loves to help and comfort people when they are poorly or have hurt themselves; she runs to get her doctors kit and begins taking temperatures, giving injections and helping people and animals feel better.
Gabbyshouse is big hit, I’d never even heard of it before. Florence was treated to the dollhouse one day after the hospital as she was super, super brave at having her dressing done – no tears! Florence’s dressing has always been a huge struggle for her; she even had some play therapy to try and help her overcome fears. She’s doing well at sitting still and holding her arm up; sometimes there are little struggles but it’s to be expected with her only being 3 and going through all of this.
Florence is starting back at preschool now; its so scary but exciting at the same time. She goes in really well and comes out with a big smile. Me, Florence’s mummy, have no idea what to do with myself. It’s like I’ve lots my best friend and right arm all in one. I’m thankful she’s back, making friends and bringing me pictures to come home with.

Milo is currently undergoing treatment for B-Cell Acute Lymphoblastic Leukaemia. He was diagnosed in November 2021 after he didn’t bounce back from a chest infection as expected. He was refusing to walk, was very pale, had gone off his food and had a rash. His GP sent us over to the hospital for some blood tests. It was then we were told the devastating news that Milo has Leukaemia. This was made especially difficult as his little brother was due in 6 weeks later.

Like the true superstar he is, Milo has coped with his treatment and the arrival of his baby brother beautifully. In May 2022 Milo has entered maintenance treatment and is starting back at nursery for a couple of days a week in July.

Update 3rd January 2023

It is time for Milo to move on from post pals. While he is still in treatment, he is doing really well and the happy post can be diverted to those in much more need.

Thank you so much for allowing him to be a pal and for the wonderfully generous post he has received. It truly does make a difference when children are so ill.

Update 27th October 2022

Milo is in the maintenance phase of his treatment and is going well. He is in this phase of treatment until early January 2025. Milo attends nursery 2 days a week which will increase to 4 in January when his little brother, Dylan, joins him.
Milo has become obsessed with all things Toy Story and Disney lately. Though Paw Patrol, dinosaurs and vehicles ares still up there.
His brother Dylan is now developing his own interests and is Hey Duggee mad (just like Milo was at this age).

Story Written 2021

Jackson is currently undergoing treatment for T-Cell Acute Lymphoblastic Leukaemia. Diagnosed in February 2020, Jackson has been through quite some journey. After initial diagnosis he picked up some viral infections in March and also tested positive for Covid-19 in April 2020. Jackson presented with a rash on his chest, belly and top of his legs. We kept an eye on it for a day but it didn’t seem to be getting better. After we did the tumbler test and the rash didn’t disappear we took him to A&E where they did some blood tests. It was then we were told the devastating news that Jackson has Leukaemia – other than the rash Jackson was healthy and his usual self. The rash is known as Petechiae. During the the last 11 months since diagnosis Jackson has been through so much. He was very ill in March last year and has a fungal lung infection which he is still receiving treatment for and will be until the end of treatment in 2023. Maintenance had a bumpy start, In October he had positive blood cultures, a bacterial infection in his blood called Pseudomonas Moraxella which took 11 days of antibiotics to clear. At the beginning of December he had an eye infection which landed him in hospital with IV antibiotics. And on New Year’s Eve he got a temperature with an ear infection, luckily they sent him home a few hours later with oral antibiotics. Jackson’s big sister Ava hasn’t had the best time since Jackson’s diagnosis, she started getting panic attacks and getting upset about death, we took her to see the hospital psychologist and she received art therapy to help. It has got slightly better, but she still has moments of sadness especially with the pandemic still looming over us. Despite all Jackson’s been through he still manages to have a lovely smile on his face and we hope this continues through treatment until 2023 when he will ring that bell.

Update 11th October 2024

It’s most certainly been a busy year for us. 

Jackson and Ava are good and now have a little baby brother Louie who’s 3 months old now. We’ve been busy just adjusting to new life off treatment and having a new baby. Ava also started high school in September. 

Jackson: loves Pokemon cards and anything Pokemon related. He’s really into football too, loves Ronaldo CR7 so anything related to that he likes and he supports Manchester United. He’s doing really well since finishing treatment and being at school full time. 

Ava loves Stranger Things, started collecting Stranger Things Funko pops. Still likes comics, and is getting into make up, skincare and all things like that. She likes stationary too. She’s started playing football at school also.

Update 3rd February 2024

Jackson’s been doing great since finishing treatment and ringing the bell last April and is starting to enjoy life a bit more. Ava and Jackson are also going to be big sister and brother to their brother in June this year. 

Jackson is really into Pokemon now and has been collecting more and more cards. He also loves super cars, Lamborghini’s are his favourite. He’s doing really well in school since starting full time

Ava is doing great, she’s really into her comic books at the moment, she loves drawing and any arts & crafts. She also loves bunnies. 

As well as a brother arriving in June, we also have a sausage dog who’s 10 months old and called JJ.

Both Jackson and Ava have eczema and sensitive skin so they can’t use bath bombs or anything like that so please don’t send these.

Update 31st March 2022

Jackson’s currently receiving treatment for T-Cell Acute Lymphoblastic Leukaemia. He’s just over halfway of treatment and we still have 13 months left of treatment.

Jackson’s just finished cycle 7 of maintenance treatment but has started getting leg & jaw pain which is called Peripheral neuropathy, this is caused from the Vincristine chemotherapy he receives every month. We are now starting a new medication that helps with the pain which is called Gabapentin. Jackson never lets these things get him down though and always has a smile on his face despite what he’s going through.

Story Written 2021

Just before Christmas 2020 Elliot was diagnosed with leukemia! Already having other lifelong issues that affect all areas of his life, this is the last thing he needed.

Elliot was born in the summer of 2007. From the start he had trouble feeding and it soon became apparent that his physical development was not what it should be. After several years of back and forwards to the GP he was diagnosed with Ehlers-Danlos Syndrome which meant his muscles were weak and his joints were hyper-mobile. He was also diagnosed with neuromuscular involvement with his muscle problems. As time went by we found him to be dyslexic too which impacts his learning. Also, he was diagnosed with ASD, so now his problems covered pretty much every aspect of his life and development.

As he has grown his muscle tone has deteriorated and he began to use a wheelchair to cover any distance and use postural support setting at school. Eventually we managed to get funding for a powered wheelchair and invested in a wheelchair accessible vehicle so he could be more independent, and we could fully enjoy our family time and trips away.

Of course this became increasingly limited against the background of the COVID-19 pandemic. But everything was in place to make his teenage years easier for him and for us as a family.

Then Elliot developed an unusual swelling around his face. With treatment it went, but then it came back along with a rash on his legs. This time we got the hospital to review him and the results of the test shook us to our core. Leukemia! Elliot never gets a break. So now he is undergoing chemotherapy, enduring multiple hospital admissions due to neutropenic infection where he is isolated from his siblings, due to the COVID risk and facing further physical debilitation as the chemotherapy takes its toll on his body.

His schooling is almost completely on hold apart from the days he feels well enough to concentrate on an online lesson.

So this is where we are now. Awaiting his immune system to recover enough to undergo another round of chemotherapy and with a further three years of therapy to come. The treatment and being away from home is also having a huge impact on his brother Oliver who is 14, and his sister Emily who is 11. They miss him and having the family home together, they also worry about him a lot.

Update 8th November 2024

Elliot finished chemotherapy earlier this year. The plan is now to try and strengthen his bones. During the treatment he developed osteoporosis and suffered 2 pelvic fractures, 9 spinal fractures, and two arm fractures. He has also developed functional seizures as a result of his treatment. He is also transferring all his care to adult services which is affecting his anxiety and mental health. 

Oliver likes art/ sweets, tea and hot chocolate. 

Elliot likes Star Wars, cleaning, cars especially Ford cars, dodge chargers and fast cars, emergency vehicles, sweets. 

Emily likes football, plays for a girls team, supports Arsenal woman’s team and she Referees too. Emily likes sweets, socks, and fluffy things

Update 25th March 2022

Elliot is still receiving both daily and weekly chemotherapy. He has 3 monthly lumbar punctures. He now has 6 spinal fractures caused by the chemotherapy. So he now needs three monthly infusions to support his bones. He manages to go to school a bit more but is repeating a year.

Thank you for all of Elliot and his sibling’s post. They really do bring smiles and make the children feel special.

Update 14th June 2021

Elliot is still receiving chemotherapy and blood and platelets transfusions and still spending a lot of time in hospital with complications and or infections. His siblings continue to put up with change at very short notice and us disappearing. 

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.

Update 23rd March 2021

We feel like the time has come for Imogen, Charlotte and Liam to say goodbye to Postpals. Immy has been able to return to school and although she has found it hard, shattering and has been incredibly shy, it will just take some time to get used to being social again. Postpals is such a wonderful charity and we have met so many wonderful people through it. We would like to thank everybody so much for all their kind words and support over the months we have been a part of it.Thanks in particular to our monthly sender’s Lizzie, Julie and Geraldine. We wish all the pals and their families all the best.

Update 6th February 2021

Immy had her one year post transplant anniversary 29th November. A couple of hospital stays that month and horrible shingles for the occassion, but luckily we managed to celebrate it at home, with lots of lovely supportive post. (Thank you everyone!)
We are delighted to say that throughout December, although there were a few trips to Addenbrookes, we did not have to visit our local hospital at all, for neither Immy nor brother Liam – this has not happened for six years!!!
Immy is 14 months post transplant now, and getting stronger, but the road to recovery has been long and slow. We still haven’t had a single visitor in our house since July 2019 as she has been shielding while her immune system recovers.
The good news is that at the end of January ’21 Immy finished the treatment for her complication from last May/June. Treatment did a marvellous job in suppressing the part of her immune system that was attacking itself… now just waiting for it to build back up over the coming months as part of it  is still at rock bottom. 
We have just had 11 days in hospital over the last couple of weeks with temperatures and a few virus’ on board, so she is still classified as extremely vulnerable, but roll on summer and covid vaccines!! 
Immy is now starting to have all her childhood vaccinations redone for the third and hopefully final time. Not an easy task anymore as Immy has totally had enough of co-operating! (Can’t say I blame her!)