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 so 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 item 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, these 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 everyday we have with him, making special memories and for him to enjoy the life to the best we can.

Despite all his challenges, he is a lovely sunny little boy, caring, and 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 4 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 odd and then 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.

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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 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 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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Lottie W

05 June 2017

Story written 2017

There were no signs or symptoms previously, she has always been a healthy little girl, happy, active, playful and bright – no causes for concern.

She caught a tummy bug, and it quickly spread to Mummy and Daddy, but everyone got over it and Lottie remained the same, just under the weather. She went to the childminder, and her sister mentioned Lottie’s tummy looked different that day.  Mummy collected Lottie early and went to the GP. The GP sent us to the hospital, and they did an X-ray and said Lottie had a blockage in her bowel and was most likely malnourished. Lottie’s favourite food was broccoli and sweet potato curry, she’s always had a broad spectrum of healthy foods. They then did an ultrasound….

Lottie and Mummy laid on the bed, and the ultrasound immediately showed a mass. A large black horrible looking mass. It measured 12cm.
Mummy and Daddy were told it was likely to be cancer. Within the hour we were placed in protective isolation at the local hospital and the Royal Marsden, Kings, St George’s and the Evalina were all consulted regarding Lottie’s high blood pressure and increasing abdomen.

Three days later and a transfer to St George’s was complete. Mummy and Daddy prepared for a biopsy, a Hickman line fitting and a bone marrow aspirate. Nanny slept on the floor at the end of Lottie’s bed, whilst Mummy slept in a chair and Daddy went home to look after Georgia and Jack. We were devastated, but had to remain strong.

Lottie went downhill very fast and was placed in PICU at St George’s, the mass was squeezing her lungs and affecting her blood pressure. It was splicing her diaphragm and she could no longer breathe on her own. We waited three agonising days for a diagnosis. No chemo can start until a diagnosis is reached.

On the 30th June at 1:15pm Dr Zacharoulis delivered the news. Neuroblastoma. Chemo was started that night. Immediately Lottie improved.

Seven days later she was transferred to The Royal Marsden. Seven rounds of chemo, three kidney function tests, numerous blood tests, countless nights in hospital. X-rays, CT Scans, bone marrow aspirates, general anaesthetics, NG tubes and so much more later we are fighting stronger than ever for our baby girl.

On the 25th of October Lottie had the now 3.6cm tumour removed. A gruelling 12 hour operation made successful by the amazing team at St George’s. Lottie then spent seven days in PICU, this timed sedated on a ventilator to keep her safe.

Our next steps are high dose chemotherapy, and stem cell transplant. Then comes radiation, and finally immunotherapy.

Neuroblastoma is a nasty disease, aggressive and harsh. It has a high rate of relapse and is the rarest form of childhood cancer.

Update 21st August 2017

Lottie is now in her immunotherapy phase of treatment having undergone; surgery, stem cell transplant, radiotherapy and now immunotherapy. Immunotherapy is causing lots of pain and issues that stop us leaving the house.

I’d like to thank everyone for their lovely cards, post, stickers and happy mail, they brighten our day!

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Tayen G

02 May 2017

Story written 2017

Tayen was diagnosed at 22 months old after a prolonged seizure at home. She has bilateral optic pathway gliomas (tumours) that have spread through her brain to the back. She started chemo straight away and although it saved her life she lost all her vision just six weeks into treatment. First line chemo lasted 18 months and we then enjoyed 18 months off, however it was plagued with lots of seizure activity and the discovery of hydrocephalus last September. Tayen rapidly went downhill and had bilateral shunts inserted in October. Tayen also had new tumour growth which meant she needed to have more chemo.

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Blakely A

02 May 2017

Story written 2017

Blakely failed to thrive as a baby and was enterally fed from a few weeks old.  He failed to meet his key milestones and then enterally feeding caused him excruciating pain. At nine months old Blakely was started on TPN on which he has thrived and has caught up on all his milestones. Unfortunately, TPN comes with great risks and none greater than sepsis; Blakely has had sepsis approximately 80 times in his life and is now on his 11th Hickman line. He is rapidly running out of access and each hospital admission is becoming harder with Blakely being more aware of what is coming next.

Update 2nd September 2017

Blakely’s health has been a struggle the past month but is slowly improving and with the start of school coming we are hoping for a good spell of health over the next couple of months. Blakely loves swimming and loves being in the water. Thank you to everyone at Post Pals for brightening Blakely’s smile when he is having a bad day.

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