Harry is 5 years old, he was diagnosed with Leukaemia in 2021 aged 3.He is on treatment and receiving chemotherapy until July 2024. He enjoys going to school when he is well enough however due to the side effects of chemotherapy and being immunocompromised he sadly misses a lot of school & social activities.
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 thant he average child meaning that he is generally always under additional treatment with pain relief and antibiotics.
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 1st September 2021, however we were at A&E and the doctors on the 19th 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 24th August 2021 where she had her biopsy and a Hickman line put in.
Florence’s biopsy finally came back on the 1st September 2021 as Rhabdomyosarcoma and she began her chemotherapy on the 2nd 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 25th 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.
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.
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.
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.
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).
**Tink is gluten and dairy free**
Tona was diagnosed with Hodgkin’s Lymphoma in October 2019 at age 14. She went through the first 6 months of treatment with relatively few side effects and went into remission. Sadly within 4 months she relapsed and had to have stronger chemo which made her hair fall out for the second time as well as making her much more tired and nauseous. Once no signs of cancer was detected Tona had a stem cell transplant to raise her chances of remaining in remission. Sadly; due to the intensity of chemo given before a stem cell transplant; Tona’s gut shut down and she also suffered a septic episode. She did recover from this and came home. She was still tube fed, having digestive issues and quite weak but enjoyed 5 weeks at home. Tona then caught salmonella from an unknown source and her already sensitive gut just shut down. She was admitted to hospital and also found to have a line infection. Despite antibiotics, within a week Tona developed sepsis and needed retrieving to the most local PICU to be stabilised.
Since this time (May 2021) Tona has not had a night home. After several attempts to re try feeding and several more septic episodes; Tona was able to come back to our local hospital on TPN which is nutrition into her bloodstream. Tona still has frequent episodes of septsis and has very few areas of access left in her body.
Due to limited chances of being able to get her gut to work again without significant trauma and high risk; Tona has chosen not to pursue this and instead enjoy the time she has left with her family and friends making memories and then returning to the hospital each day for nutrition and medication.
Update 16th of August 2022
Thank you to everyone for the children’s post. It has brought them a lot of comfort and smiles to still be able to open letters and presents. Any post that Tona was unable to use or arrived after she died was donated to our local children’s hospital. She spent over a year there and it was often difficult for them to find age appropriate presents for her. These will hopefully put smiles on many more teenage girls faces.
The children are doing well following the loss of their sister, however they are still recovering from the absence of their mum while she was in the hospital with Tona and having to be so grown up and go without for so long.
They still get so excited by their post; particularly from their monthly senders who they know by name and love to hear about their lives and what they send.
Charmaine’s interests are largely unchanged. She herself has many health conditions and learning disabilities which means she spends a lot of time at hospital appointments or at home. She watches a lot of films and Disney tv, young teen stuff, musicals and still loves all things Disney.
Rory still loves hot wheels and Lego but also anything science based.
They both say a massive Thankyou for their post over the last two years and really benefit from feeling that someone is thinking of them
Update 5th of August 2022
Sadly Tona passed away peacefully in the night. She was surrounded by her family and appeared both free of pain and relaxed.
Please keep sending cheerful post to Rory and Tink, keep it light hearted as you would for any child.
Aria started to suffer with DIPG symptoms in September 2020 but she wasn’t diagnosed until May 2021, on her birthday.
She had 13 sessions of radiotherapy and she regained her walking. She had a year of being an active normal child.
Sadly the tumour has started to grow again and she is having radiotherapy again. She is having 10 sessions.
Aria’s dream is to go to Disney. Maybe one day we can take her if she gets better.
“Our brave warrior, our baby girl Aria passed away peacefully surrounded by her family at 12:30am. We are absolutely devastated and we have no idea how we will carry on each day. But, we promise you that we will carry on for you. DIPG didn’t win, you won baby girl. You fought for so long. You now deserve to run free and be a little girl. We love you so much Aria”
Thank you to everyone who’s sent Aria and Paige letters and gifts. You have made both of them smile.
I’m sorry I haven’t been able to say thank you individually. Aria has been poorly after her radiotherapy and her tumour symptoms don’t seem to be getting any better. So she is struggling at the moment. Let’s hope and pray she will get better with time.
Thank you to everyone who have put a huge smile on Aria’s face. It means so much to us. You are all amazing.
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.
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.
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.
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.
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.
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.
Please do not send food or drink to Emily
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.
Update August 2023
Emily had her planned open-heart surgery in January 2022 which was a success (after scary few weeks) and Emily’s heart is now stable and working well. There will more than likely be future heart surgery but hopefully not for a few years. Now that Emily is no longer an anaesthetic high risk, other teams can now be involved to look at her other medical conditions and see if anything can be done to help her.
Currently the renal team are looking at her kidney/bladder issues and hopefully the gastro team will put her forward for a peg placement. Health wise, Emily is doing well and continues to thrive. She is now back at school after months off and loving it. We are hoping the heart working better now will give her more strength to improve her walking and day to day challenges.
Emily still loves Mr Tumble/Justin and CBeebies. She loves music, sounds, balloons, bubbles, being outside on adventures and stories! Emily doesn’t eat any food and has an allergy to plasters. She dislikes certain textures like sand, squishy toys, wet stuff like paint but school is working with her to encourage her to touch more. Please avoid putting sequins or loose glitter in cards as Emily gets them on her hands (has a meltdown) and could rub her eyes causing discomfort.
