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.

Update 2nd June 2018

Nothing really new with Skylah apart from taking each day as it comes there is still no treatment out there for Skylah and she is still terminal. Skylah became a big sister back in October and loves her little brother very much! Skylah is so looking forward to the party, we can’t wait!!

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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 1st October 2019

We would like to thank everyone for the cards and letters Vicki has received, they have such a huge impact with Vicki’s mental health. They bring kindness and a smile that is such a pleasure! She loves us to read the letters, cards and enjoys looking at your pets. Vicki loves animals.

Vicki is still on high doses of pain medications. Just started her on Clonidine to try and help with her tics, under a psychologist due to her extreme anxiety and looking at other underlying disabilities.  

Vicki is desperate for friends but due to her extreme anxiety and SLD, friends struggle to understand her. 

Update 11th February 2019

Vicki is doing really well from the oncology side of things. Blood tests are showing she is still in remission, which is fabulous to hear.

Nearly hitting 12 months out of treatment. Her mobility is really poor with pain all the time in them, that even medication isn’t giving her much relief. Anxiety issues are really high at home and school, constantly worrying about everything, she comes home from school every day totally exhausted and needs a couple of hours sleep! Then she is wiped out most weekends, although we do try to get her out & about. She still loves colouring and enjoying the Julia Donaldson DVDs as that’s what is watched in school. We try to encourage her to walk Teddy (our Bichon) as much as possible, as Vicki has always enjoyed taking him for walks! Not always possible but we do try to encourage her to do it.

Many thanks for your cards and letters. Vicki really does enjoy receiving them xx

Update 12th November 2018

Vicki is still struggling with pain in her bones, more so her legs she finds it very difficult to walk for any distance and stand for some time! The hospital upped her pain medications but they really knocked her about with drowsiness and headaches! Thank you for your kindness its so nice to see her smile at the post she receives.

Update 10th October 2018

Vicki is 6 months out of treatment for ALL (acute lymphoblastic leukaemia) doing absolutely amazing although the after effects of treatment have been snowballing. Vicki has been diagnosed with Motor & Vocal Tourettes, Avascular Necrosis of both legs, and severe anxiety issues. They cannot get the pain under control, so she’s on lots of different medications including slow release morphine, but her sunny nature and smiley face always brightens our days! 

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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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.

Update 1st October 2019

I’ve had a chat with Alfie and hes ready to move on from post pals, Thank you so much from the bottom of both our hearts for the love we have both received from complete strangers through post pals. A fabulous charity and will look back on his post in the years to come and remember people are so kind. Thank you for your hard work lots of love Janine and Alfie

Update 2nd April 2019

Alfie has just recovered from a chest infection which required 2 weeks of intravenous antibiotics. He’s enjoying having a dog, which he loves to take for walks. Alfie will be going to secondary school in September. Alfie continues to take 40+ tablets per day plus breathing treatments.

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