Theo S

14 May 2018

Story Written 2018

Theo was born at 29 weeks, and was diagnosed very early on with cerebral palsy, epilepsy and feeding problems among other complex medical needs. Since then he has also been registered blind.

“There are many words to describe Theo. Beautiful, special, cheeky but probably the most fitting word is a ‘fighter’,” explains Denise, Theo’s mum.

Theo has bravely endured 31 surgical procedures in his short life, and also survived viral and bacterial meningitis. He is fed directly into his bowel hourly and continuously through the night by a machine, so requires around the clock care.

“Theo never ceases to amaze me; he inspires me and is a really super son. Everyone who knows Theo will agree no matter how poorly he is, he never refuses to smile.” said Denise.

Theo has now been moved to Bluebell Wood Hospice and is receiving end of life care.

 

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Finley J

25 February 2018

Story Written 2018

Finley was diagnosed on 1st March 2016, aged 6 years, with anaplastic large cell lymphoma (ALCL) a rare type of non-Hodgkin lymphoma (NHL). Like all lymphomas, it’s a cancer of the lymphatic system, which is part of the body’s immune system.
A programme was immediately put into place and Finley started intense chemotherapy which lasted for six months. Finley responded really well to treatment and he rang the End of Treatment Bell on 11th August 2016 and was in remission for 15 months with bi-monthly visits back to the hospital for check ups.
On 11th October 2017 it was sadly confirmed that Finley had relapsed and the cancer was back. This time his treatment programme will continue for two years with chemotherapy treatment once a week. You can follow Finley’s Journey here, we will be posting regular updates of his treatments and what he is getting up to as a normal everyday 7 year old boy!

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Elle M

18 December 2017

Elle has cystic fibrosis and had a lung transplant in early 2017.

Her news lungs are beautiful and working perfectly, the nasty bacteria that was in her old lungs though managed to find a way back into her body and in November we were told we are running out of treatment options.

Seven months post-transplant we discovered the bacteria had started to grow in her ribs and sternum. Elle had surgery in September to remove the affected area. She was blasted with the highest dose of antibiotics and this meant serious side effects.

Elle is almost completely deaf now and her hearing won’t ever return. She has lost most of her hair apart from a little patch she’s holding onto dearly. Her nausea can be relentless, she can’t eat or keep anything down and consequently she is malnourished and her poor little body is very frail.

Four weeks after the surgery to remove this infected area an MRI scan told us the bacteria is still present and is growing, Elle’s body can’t fight it.

We were preparing to receive the news from Great Ormond Street that we have no other choice but to keep her comfortable and make the most of what short time is left but Elle’s consultants have been discussing her case all over the world to try and find a way forward, and recently we were thrown a lifeline: they have agreed to operate on her one last time. The GOSH team, Elle and her family are going to give it everything they’ve got.

It’s going to be an intrusive surgery, removing more bone and infected tissue, and this time potentially leaving the wound open to heal from the inside. A significant stay in intensive care and many more weeks in GOSH. A super blast of medication to give her body all the help we can to be sure it goes and doesn’t return.

This is our only option left to try and save her.

Elle knows the bug is back, she pictures it as ‘little faces eating away at me’ and she wants it gone. She wants to beat the bug! And most importantly, she wants to go ahead with the surgery, Elle has plenty of fight left in her.

Her biggest upset on hearing this news was the realisation that she would be in hospital over Christmas.

3rd January 2018

We are very sad to say Elle passed away peacefully in her parents’ arms.

Please keep sending cheerful post to her sister Cara.

 

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Matilda B

26 November 2017

MATILDA HAS A LIFE THREATENING ALLERGY TO LATEX. Please don’t send items containing latex to Matilda or her siblings. Matilda is also unable to eat but is happy for her siblings to receive sweets.

Matilda has many life threatening/life limiting conditions which have kept her in and out of hospital all her life.

She has spent months upon months at a time in hospital and despite being away from her siblings and Daddy for long periods, she never complains and always has the biggest smile on her face.

Matilda has intestinal failure; no swallow so cannot eat or drink and therefore needs TPN to keep her alive and well. Because Matilda has ketotic hypoglycaemia she cannot control her blood sugars and they drop dangerously low even after a few minutes of stopping her TPN, so she has to have IV glucose running 24/7 too.

Matilda is completely paralysed from the chest down, so she is a full-time wheelchair user.

Matilda sees herself as any other little girl and although she knows her body doesn’t work as it should or like most other children’s she has a real zest for life and never lets her disabilities stop her from achieving what she wants to do.

Matilda attends our local children’s hospice which she loves to go to as there is so much to do there and she gets spoilt rotten.

Matilda cannot go to school due to medical reasons and her being unpredictable and unstable medically so she is home educated by Mummy.

Sadly in August Matilda’s sister Daisy passed away so its been a very tough year.

 

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River W

28 October 2017

Please do not send small items River can put in his mouth or latex balloons (he doesn’t have an allergy but they are dangerous to him).

Our little boy River is now 7 years old and suffers from a life-threatening condition. He has an extremely rare mutation on his CNK SR2 gene. There is no cure!  River will need 24/7 lifelong care and he will never really have friends he can play with or share his life with because he will never have his own independence.

River is non-verbal, but can communicate. He sadly suffers from a life threatening type of seizures, status epilepticus, which are a medical emergency. He’s attended resus too many times – first when he was only 5 weeks old. I (his Mum) had to perform CPR on River when he was 2 years old and many times since. It was only last month he stopped breathing again in my arms due to a seizure. He also has central and obstructive sleep apnoea, hypermobility syndrome, sensory processing disorder, autism, ADHD, learning disabilities etc.
All we can do is hope and pray our River makes it into adulthood, as we have nearly lost him so many times: he’s often blue lighted to resus. We want to make the most of every day we have with him, making special memories and for him to enjoy his life to the best he can.

Despite all his challenges, he is a lovely sunny little boy, caring, determined to fight everything life has thrown at him, and he is loved by everyone who meets him. River is such an inspiration.

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Skylah-Mae V

27 September 2017

Story Written 2017

Skylah was a healthy, happy baby born on 26th May 2013. In September 2013, Skylah was diagnosed at four months old with bilateral retinoblastoma (eye cancer in both eyes). She underwent six rounds of chemotherapy and we got the all clear in January 2014. When we went for her next check up we found out she had relapsed in one eye and she would need more chemotherapy, this time it was called intra arterial chemo. Whilst they were doing the procedure they came across a blockage, so she was sent for an MRI. When the results came back we were told they had discovered a brain tumour in her pineal gland, she had a seven hour operation and had intensive chemotherapy which ended October 2014.
We were over the moon that it had finished and for about a year and a bit we enjoyed her being clear of a brain tumour! She still had regular checks on her eyes and needed regular treatment to keep her right eye stable but all in all everything was looking up for us!
In January 2016 we took Skylah to A&E as she was walking a bit oddly and when they did an MRI they found that she was covered in tumours from the bottom of her spine all the way up to her brain! We were completely devastated!
We got told there was nothing they could do for her apart from palliative radiotherapy which ended in March 2016. We took her home to make as many memories as possible, but she has been a complete superstar and is amazing all her consultants. Skylah is still with us over a year later and we are so thankful for every day we have with Skylah.
Unfortunately on the 23rd August 2017 we had to make the decision to have Skylah’s eye removed and she is having the operation this Wednesday 30th August 2017.

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Vicki H

06 September 2017

Story Written 2017

Vicki is a bright bubbly 14 year old, her sunny positive nature has helped her get through this journey! Her innocence and smile makes you fall in love with her! She was born with autistic locked in syndrome: this means Vicki doesn’t understand the world we live in, or when people talk to her if they ask too many questions she will walk away! She masks her disabilities very well. Vicki was then diagnosed with acute lymphoblastic leukaemia, this cancer diagnosis shook us all to the core but Vicki truly doesn’t understand what it’s all about. We are so proud of how she has dealt with the whole treatment process as Vicki will not be touched by people she doesn’t know! Vicki has severe learning disabilities, global development delay, OCD, severe anxiety, ASD and dyspraxia.

Update 6th January 2018

We would like to thank you so very much for giving Vicki the chance to receive such lovely post & gifts! When things are really bad Vicki enjoys us reading the cards/postcards to her! She loves the pictures of the animals & is getting a little collection which she just sits and looks at in her own time!

Vicki still loves colouring, taking Teddy for walks when well enough, listening to music – all types! She loves going out for meals with her sisters – Jade, 25 and Amber, 17. Who also enjoy taking their sister out, dressing her up, doing her hair & make up! They also enjoy the pantomime & Disney on Ice together, we encourage them to go to for quality time with each other! Sometimes it’s hard for Vicki’s sisters to see her so unwell & it really upsets them! Disney films and musical films are still a big hit, Mr tumble makes her laugh! And she loves light-up sensory toys. Treatment for ALL is going as well as it can be! She suffers from lots of bone pains & aches. She gets exhausted easily, some days she’s too tired to get out of bed. She cannot walk far without it causing her lots of pain! Her immunity is still very low so we are constantly checking to make sure it is okay to take her anywhere. The tremors are starting to have an impact on her as carrying a drink or just lifting a cup will result in it being spilt, she’s finding feeding herself awkward & at times frustrating.

Results from the MRI scan on Vicki’s brain have shown up too much fluid around her brain & pockets of fluid within her brain where it shouldn’t be! As the high doses of steroids & chemotherapy can cause some of this, they are going to do further investigations after treatment has finished! Also doing lots of genetic testing to see if her delays & disabilities are genetic!

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Alfie B

06 September 2017

Story written 2017

Alfie was diagnosed with cystic fibrosis at four weeks old. In his nine years of life he has had so many IVs and injections that he is now needle phobic. He takes 50 tablets a day to keep him alive. Alfie’s cystic fibrosis does not just affect his lungs, he also has liver disease and his pancreas doesn’t work. He has spent a lot of time in hospital over the years.
Alfie feels like his condition is a very lonely one, as we can’t mix with other families with CF due to infection risk.
Last year his family fund raised for an airway clearing system which helps his breathing, but he still has to have breathing treatment every day.

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Amy O

05 June 2017

Story written 2017

In August 2014 when Amy was 7, she was diagnosed with childhood cancer neuroblastoma. A growth attached to her adrenal gland was found after a scan to find out why she kept having water infections. More tests were done and thankfully it had not spread. In November 2014 Amy was admitted to Birmingham Children’s hospital for an operation to remove the tumour, which was successful and she recovered well. She had to have regular scans to check for any relapse.

Up until November 2016 at the age of 9 and after two years of being clear, a routine scan showed it had returned in her pelvis, and chemotherapy was to start straight away. On 19th December Amy started chemo: she is still fighting and does it with a smile.

Update 10th January 2018

Amy has just finished chemotherapy and now is on six months of maintenance therapy and then hopefully by July she will get to ring the end of treatment bell. Amy loves receiving mail from post pals and waits most days for the postman.

Update 21st August 2017

Amy has just started her next round of chemotherapy and hopefully her last. She will be having 6 rounds, each round is five days of treatment with two weeks off in-between. She is doing really well so far after her first five days on chemotherapy.

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Izzy H

05 June 2017

Story written 2017

Izzy is a normal 3 year old. She loves to play, she’s very quick to learn, and has an infectious gorgeous laugh.  Unfortunately, Izzy was suffering from a UTI, and antibiotics were not curing it.  We kept taking her to the GP, but when the course of antibiotics finished, her right eye and stomach started swelling. The GP wasn’t sure why, tried new antibiotics, eye drops, and suspected it could be an allergy so we tried Piriton.  The GP even felt Izzy’s liver and said it felt firm, but thought it was normal and perhaps due to her UTI.  On Wednesday 22nd March 2017 we took her to A&E due to the size of her abdomen, and now the wheezing coming from the top of her lungs.  Sadly we were sent away, as she was not seen as a priority, and her chest sounded clear.  They did think she should have an ultrasound, but to wait for a few weeks and be put on the list for paediatric hot clinic.

Friday 24th March 2017 arrived, and Izzy was very uncomfortable, her stomach was even more distended and hard, and she was struggling to breathe, with her eye still swollen.  So we decided to take her back to A&E at 1pm, as Izzy was not herself at all.  This time we were taken more seriously, and seen by a number of doctors, all of whom poked and prodded, and said in the end she has a problem with her abdomen that they couldn’t treat at Kettering General.  They transferred us to QMC Nottingham on Saturday by ambulance under blue lights.

We were very worried, but at this point no-one mentioned cancer to us. It wasn’t until we met a doctor who works on the children’s ward, who has experience in oncology, did she explain very calmly that Izzy has a form of cancer, and this is the reason we were being transferred.  Saturday 25th March 2017, the day came when we moved to Nottingham.  We arrived around 16:00, and we were greeted on ward E39 by a lovely group of oncology nurses.  We felt lost, upset, angry, and confused.  We were unsure of what was going to happen, and exactly how poorly Izzy was.

We knew she was ill, but we didn’t appreciate how ill until Sunday 26th March arrived.  So, Mother’s Day was here, our son Joseph was with his Granddad, and we were stuck on a strange ward in a city we have never been to.  The day was busy with chest x-ray, ultrasound, and blood tests.  Monday 27th March, Izzy was told they couldn’t wait any longer, and she would be first on the list for her MRI, lumber puncture, and Hickman line to be put in.  We were told her tumours were very large, with the one on her adrenal gland and kidney being 7cm in size.  The fluids they had been pushing through her had caused her to move into tumour lysis.  We were then informed she is extremely poorly, and when she comes back from her general, she will remain sedated, and put on PICU, where she stayed for 4 nights.

Tuesday 28th March we received her full diagnosis from our consultant, who is a true expert in his field.  We were informed she has a stage 4 B cell non-Hodgkin leukaemia and lymphoma, which is also in all three categories (this covers solid tumours, liquid, bone marrow, bone and spinal fluid).   Our lives have changed forever, and seven weeks on we are still living at Nottingham QMC, away from all our family and friends, but being supported by an amazing team on E39.

Update 6th January 2017

We made it home for Christmas after 40 weeks in hospital, and have remained at home. It was touch and go a week before, as she developed another UTI with a strain of E. coli resistant to some antibiotics, then she had an allergic reaction to one of the ones that would have worked.  It’s ok, she was put on a oral one that seems to be working, and is now on it once a night for 3 months.  We are still preparing her IV anti-fungal medicines at home, so our kitchen is half laboratory with supplies at the moment.  These infusions are attached to her and run for 3 1/2 hours in the morning, and 5 hours at nights.  We are so proud of Izzy, she has come so far from October, suffering from fungal sepsis, when the consultants were unsure of what else to try or if she would make it.  Thankfully 3 doses of IV immunoglobulin therapy saved her life during October, and November.

She has only managed 4 rounds of chemo out of the 6, and in August she was declared in remission.  Sadly the fungal infection has put a hold on her receiving the last 2 rounds, and they have decided that the risk would be  too high on making her extremely sick again.  On Jan 17th we go in for a ultrasound at Nottingham and review with Prof, this is to check the fungal infection abscesses in her liver, spleen and kidney.  They will also use it as a review for any tumours.  Bloods are being taking every week by community nurse for normal blood counts, fungal markers, voriconazole levels (as this can be toxic if too high, and is one of her IV anti fungal medicines), as well as any cancer abnormalities.

At the moment we are taking each day as it comes, and not rushing anything.  Fingers crossed she will continue as she is, and being the little fighter she always has been.

Thank you to everyone who has sent her post, cards, presents, made her some amazing gifts, or sent emails. They are really appreciated.

Update 21st August 2017

Izzy has finally completed round 4, we had one nights sleep (last night) at Billy’s House run by Clic Sargent, but now back on the ward due to side effects of the chemo. She is in quite a bit of pain again in her gut, and is already not tolerating nasal gastric feeds. She is on oramorph, gabapentin, and now a fentanyl patch has been put on today to help. Izzy has been on extremely intense chemo throughout the last four rounds, and has two to go before she can be rid of this awful illness. Over the last five months we have spent 90% of our time in hospital. With the other 10% mostly at Billy’s House, to be close to the hospital, and a few days at home altogether. At the end of August she has an MRI booked to see if all the solid tumours have gone from organs, and bone between the eyes. She will then have her bone marrow and spinal fluid analysed a few days later, to also check the cancer cells that were there, have now all gone. Nerve wracking time for us all.
A special note of thanks to everyone that has kindly been sending Izzy and Joseph post / presents and more importantly bringing them smiles. Thank you so so much!

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