**PLEASE DO NOT SEND LEWIS BRIAN B ANY SUGARY SWEETS**

Story Written 2016

Lewis was diagnosed with acute lymphoblastic leukaemia in November 2015, he was six years old. Lewis had collapsed at home and was taken to our local hospital where a simple blood test revealed he had cancer of the blood. From there, he and his family were taken by ambulance to the Leeds General Infirmary paediatric oncology unit.

Treatment began straight away and a once lively and vocal Lewis quickly turned into a bed bound, tired and poorly little lad. He needed lots of red blood cell transfusions and platelets to support him as the chemotherapy destroyed his bone marrow so his cancer would too be destroyed.

There were many side effects to this initial stage of treatment – dexamethasone (a steroid) gave him diabetes which required finger pricks three to four times daily and an injection of insulin to his stomach. Another chemo drug caused a thrombus in Lewis’ popliteal artery from which he still is unable to walk on his left leg. There was also the daily Tinzaparin injections to thin his blood to cure the thrombus which Lewis found very painful.

Something called a port was implanted into Lewis’ chest so blood samples could be taken more easily and the intravenous chemo given. This got infected. Lewis had a nasty infection to fight off over the next two weeks while having chemo.

Lewis missed his seventh birthday and Christmas as he was an inpatient for eight weeks. Battling on, Lewis attended school in his wheelchair with a sick bowl close to hand. The first eight months have been hard for him with numerous re-admissions for infections. In the future, Lewis wants to meet Dan TDM, have hair and be able to run. At the end of treatment (March 2019) Lewis wants a pug puppy.

Update 5th January 2017

I will let another poorly child have the benefit of post pals. Lewis has enjoyed it so much and as a family the love and support has been very much needed. Lewis Brian is still on treatment for some time but attends school and gets more social interaction outside the home now.

Thank you again

You very wonderful people

Update 1st October 2017

Lewis has been a little poorly due to an increase in his chemotherapy to cure his leukemia. His school trip and parents evening were ruined as he was vomiting lots and so he was admitted to hospital.

Update 21st August 2017

Lewis is using a splint for his left leg but he manages unsupported by crutches now and only uses a wheelchair when the drugs get the better of him. He still wants to run and play tag with his friends. The Physio team are working on this.
His hair has grown back and now Lewis even goes to the hairdressers! Lewis has learned to take a tablet too and eats well so his nasal tube was removed.
The plan is that Lewis will finish his chemotherapy in march 2019.
Lewis loves knowledge and pics of animals, dinosaurs, pigs and dogs but any unusual animal too.
Though Lewis is so very grateful for all his gifts and posts could you kind people not include sugary sweets. Any dental problems could be a headache to treat.
Thank you so much for supporting Lewis with your extra smiles they help him so much

Update 15th June 2017

Lewis has two years left of leukaemia treatment and is still lame in one leg after early side effects to chemotherapy gave him a blood clot. He struggles with normality due to the drugs but loves school and attends as much as he is able to. Lewis loves to swim but can only do so if his bug-fighting cells are good enough. He wants to be able to run again. Lewis likes all animals and info pictures, etc, about them. Lewis likes DanTDM and had a wish come true to meet him earlier this year. Lewis likes Roblox and Star Wars, too. His favourite animals are pugs and he hopes to have a Chug (Chihuahua x pug) one day.

Story written 2016

Grace was diagnosed with acute lymphoblastic leukaemia in June 2016. She had been suffering from breathlessness, pains in her legs, a rash on her legs and high temperatures. Grace went for blood tests one morning and at quarter to three that night the out of hours doctor knocked on the door with the findings that said we had to go to A&E, as the bloods were wrong.

Grace will have two and a half years of chemotherapy and treatment. She is currently spending lots of time in hospital as she is in the intensive part of the treatment.

Update 2nd September 2018

Grace had her LP and bone marrow check on the 22nd of August and it’s all come back clear and final chemo was the 26th and we had the biggest party ever!

We would like to thank post pals from the bottom of our hearts for all the help and support throughout our tough times.

Grace starts Secondary school on Tuesday and rings the bell tomorrow! (Monday) We would like someone else to become a pal now and in time we would like to be the one sending the well wishes. Take care and see you soon.

Update 10th October 2017

Grace is in maintenance and is doing well, currently. Grace still needs phosphate as a supplement which is nasty to take and still takes posaconazole as a precaution, because of a fungal infection early stage treatment, but which allows her to see her pony. We have had two visits to hospital this week as Grace has had a racing heart rate and pain in her legs. All okay now, although Grace does have a cold, but has also been on 100 percent chemo for many weeks. Hopefully this will be reduced to 50 per cent tomorrow.

Grace has just got a new pony as she has outgrown her other pony, so we have put her on loan.

Update 15th February 2017

Grace is now in maintenance and hopefully can have her Hickman line out in the next few weeks. Unfortunately when Grace had her lines removed previously the surgeon found a blood clot when putting the new ones back in and so now twice daily Grace has an injection of enoxaparin which has been bruising her leg quite badly. Presently the NG tube is out and Grace is trying her best to keep eating and so avoid having another one put back in. Fingers crossed Grace keeps well and continues to get stronger and keeps going on the tablet chemo.

Story written 2016

**Please do not send James flowers, latex balloons, food or unsealed sweets**

James was diagnosed with Fanconi anaemia the same time as his sister in 2011. Fanconi anaemia is a life limiting blood disorder. This causes bone marrow failure and a higher chance of head and neck cancers.

Fanconi anaemia has caused James’ bone marrow to fail and he has been transfusion dependent for the last six months. He has an admission date for a bone marrow transplant on 21st November.

Update 22nd July 2017

I think it is time for James to move on from Post Pals. There are so many children that need the smiles put back in their hearts.

Thank you for all you and your team have done for my children during treatment and recovery.

We will still support you anyway we can.

Update 28th April 2017

Day +23 and 5 weeks after admission I need to share that we were told today that James has 100% engraftment (donor cells)…..Not only that, his counts are going up steady enough for us to go home next week!
It feels too soon, too quick to be leaving the amazing nursing team and doctors here looking after James, but I guess its normal to worry. He has managed to get here with no signs of stress on his pelvic kidney or liver. One scary reaction to a medication dealt with promptly, and has not needed a transfusion this week. Just wow!

Update 17th January 2017

We had a lovely quiet Christmas. The children were amazed at the lovely gifts and cards sent to them, thank you to everyone. The handmade activity book Emma just adored and spent a long time playing with it. Crafts were a great thing being stuck indoors most days in the cold weather especially when immunity is low.
We managed to stay out of hospital over Christmas but James went in on 2nd January with a high fever. We were there just a few days getting blood transfusions and IV antibiotics. Back to Great Ormond Street tomorrow to find out when his transplant will be. Emma is still suffering postherapetic neuralgia from shingles, her skin has almost healed but the sensation of pain and itching is still there. Her hair is growing back well now and she loves putting clips in her hair to show off her new earrings.

Update 1st December 2016

Sadly James’s donor was not able to donate for medical reasons which has meant his transplant has been delayed. We have just heard that two 10/10 matches have been found in the UK and we are waiting to hear if the donors are well and willing to donate.
James has been off school most of October and November due to illness at school. His sister Emma has also had to deal with a bad case of shingles from stopping antiviral medication. She now has postherpetic neuralgia pain but is recovering.
We are looking forward to Christmas together.

Story written 2016

Lewis was diagnosed with Acute Lymphoblastic Leukaemia on the 13th May 2014. He is halfway through his treatment but suffers with a lot of pain and discomfort due to the chemo. This won’t get better until he’s off chemo and hopefully it will improve afterwards, although there’s no guarantee.

We spent the first 18/20 months in hospital every week for up to 3/4 days. This has slowed down but he’s on the highest pain medication and it doesn’t stop his pain. Lewis would love to have contact with anyone willing to send him cards.

Update 3rd March 2017

Lewis has had a number of tests to find out why he’s in so much pain daily. He was sent for an emergency MRI and this showed bone problems we don’t know yet what they are as have to wait to see a bone specialist.

If Lewis tries to do anything it will result in more pain so he’s wheelchair bound until this is sorted out.

This has been very tough for Lewis he’s also been trying to go into school where they all fight over who’s going to push him but he’s been incredibly tired so hasn’t managed much.

Update 4th January 2017

Lewis is currently in hospital. He’s loved getting post and gifts and opens them with his brother, Bobby. Everyone who’s sent cards and gifts has really cheered him up. He thanks everyone, it means so much to him. Lewis hasn’t been having a great time lately he’s been in and out of hospital, he’s been in hospital more than home this last month. Lewis has had a number of problems, his latest admission meant we were admitted before new year and spent new year in hospital as he had breathing difficulties, severe joint pains and was unable to move, mouth sores and very painful sore throat. Lewis still is recovering at home and struggling.
Lewis has been referred to physio once again and we’re hoping to get the help he needs.

Update 13th November 2016

Lewis has been unwell he’s got a strange red marks all over his face shoulders and neck. He’s been at home a lot. He has also been very excited to finally be a post pal. He comes down every day checking the post and loves all his mail. I’m going to get him writing set to reply this week to the Ones that leave addresses. Lewis’s health isn’t great, he’s not managing as well as we all hoped at this stage, he’s on daily morphine and struggling with his pain.

Story written 2016

Hugo was diagnosed with acute lymphoblastic leukaemia (ALL) in July 2015.  It began when, completely out of the blue, he wasn’t able to stand or walk.  Over the following weeks he grew paler, was tired, off his food and his glands were swollen.  There were a few trips to the doctor and a hip x-ray and then finally a blood test showed that he has Leukaemia.
Since then Hugo has had six months of intensive chemotherapy, hospital stays and operations.  He is now in the maintenance part of his treatment, which will continue until September 2018.  Life now is daily chemotherapy and other medication, some of which we can do at home, some of which is done at the hospital.  He has weekly blood tests and regular trips to hospital.  Life for all of us is very different from our pre-cancer life.
Hugo struggles a little with his walking due to some of the medication he takes, which means he finds it difficult to keep up with his big brother and his friends.  It doesn’t stop him trying though!  He loves being outdoors and playing ball games.  He is a big Paw Patrol fan and also loves Fireman Sam.
Hugo has been incredibly brave and always has a smile on his face.  He is a very loving, caring and thoughtful little boy.  He loves nothing more than playing with his big brother and having cuddles with his mummy.  He is quite shy and sensitive, but his confidence is growing everyday and we are seeing a little cheeky side to his personality emerging.

Update 9th January 2019

Hugo finished his treatment in September 2018 and rang the end of treatment bell a couple of months later.

He has been doing really well off treatment so far. His walking had been slowly improving and is now coming on in leaps and bounds. He still needs the wheelchair and isn’t as mobile as his little friends, but he’s got lots more energy and loves running any chance he gets.

We were lucky enough to be granted his wish of a trip to Paris in December – a wish that was inspired by a postcard he’d received via Post Pals. It was a really special moment and shows just how much the post sent means to the children.

We will still be regular visitors to hospital with frequent checks and follow ups for long term effects, but Hugo is well and such a happy little chap.

We want to say a huge thank you to everyone who has sent Hugo and Henry post over the last few years. It has meant so much to all of us and has truly helped brighten some of our darkest days.

Update 18th July 2018

Hugo has been doing well over the last few months. His walking has improved, although he still needs regular breaks in the wheelchair and sadly he still struggles to keep up with his friends. He is just about to finish his first year of school. School has been great for him in building his confidence both physically and emotionally and he’s really enjoyed it. We are now on a countdown until the end of treatment this September!

Update 15th October 2017

Hugo has spent some time in hospital recently with acute liver failure, probably caused by one of the chemo medicines he takes. He’s had a little break from the drug and has now restarted at a lower dose. He has also had an MRI scan to check that his walking issues are not neurological or spinal. He’s been very brave during it all and it was lovely to come home from hospital to lots of lovely cards. He has started school now which he is enjoying (when he manages to get there!).

Update 19th June 2017

Unfortunately Hugo’s walking has continued to deteriorate (a broken leg in March didn’t help!).  He now has significant muscle weakness in his hips, legs and feet and possible bone thinning, caused by the medication he is on. He is currently unable to walk so is wheelchair or buggy bound. He is having regular physio and is due to start hydrotherapy sessions soon. We really hope he is back on his feet very soon. He also spent some time in hospital with a nasty chest infection a few weeks ago. However, he remains cheerful and always has a smile on his face and a cuddle at the ready. He loves all his post, as does his big brother Henry. Thank you very much to everyone who has sent post.

Update 6th January 2017

Hugo continues to respond well to his treatment and is generally well. Unfortunately his walking has continued to decline and he will be starting physio soon to try and strengthen his little legs. He has struggled a little with the winter bugs and there have been a few visits to hospital, but somehow he manages to keep a smile on his face. He loves receiving post, as does his big brother. They both get so excited whenever post comes through the door, it really helps to lift their spirits and we love seeing their smiles. Thank you so much to everyone who has sent post, it really makes such a difference and is so very much appreciated.

Story written 2016

Sophie started school aged 4 on 3rd September 2014. At the end of her first two hour session she had become unsteady on her feet and had little control on her left side. Within 48 hours we were told the devastating news that Sophie had a brain tumour. Sophie was taken by air ambulance from the Isle of Wight to Southampton General Hospital.

Since then, Sophie has had a biopsy of the tumour and this told us she had grade 1 astrocytoma in the brain stem and hydrocephalus. Sophie then started an 18 month course of chemotherapy until she had an extreme allergic reaction to it. So they then started her on a different one which she did not tolerate at all. Sophie started having respiratory issues which rapidly became a major problem.

Sophie suffered a respiratory arrest. She then had an MRI scan which showed a new tumour had grown and was taking up most of the space in her brain stem. This tumour was pressing on nerves which were stopping her from being able to breathe sufficiently. We were told Sophie would need a lifesaving operation. Her amazing surgeon told us he felt he could remove 70% of the tumour. After surgery, another MRI showed he had actually removed 90% of the tumour! Amazing!

Sophie has been in recovery since November 2015. She has weakness in her right side so has little use of her right hand, but she tries her best to write and draw with her left. Sophie has been able to stand on the odd occasion but she is not able to walk. She has a tracheostomy connected full time to a ventilator as she still cannot breathe properly on her own. She has a gastrostomy as she lost the ability to swallow. We live in hope that she will improve with time. We have been living in the hospital since October 2015.

Update 8th November 2024

Sophie has been in hospital since last Friday with a severe bacterial chest infection. She’s is on 8 litres of oxygen, spiking 39.9 temperatures and needing constant saline nebulisers and Ventolin to keep her airways open. She’s needed her tracheostomy changed regularly as they’ve been getting bunged up as she aspirated into her lungs the first night which turned into a medical emergency. She is on very strong IV antibiotics. With all of this going on, Sophie is very scared. On top of that this is her first hospital stay without her parents as they are both unwell too.

Update 16th October 2024

Update 3rd February 2024

Sophie has had a more positive last few months. We have managed to get Sophie on medication for her anxiety and after a few adjustments with the quantity she is now thankfully in a much better place, although still not wanting to go out the house and rarely goes into the lounge. However, she is 14 this May and some of this is possibly teenage hormones, etc. 

Sophie is still into Minecraft and Roblox. She loves receiving anything to do with animals, mostly cats! 

She loves seeing photos and hearing about people’s pets. 

George is now very busy. He is studying sports science for the next 3 years. He also plays for 2 different football teams twice a week, training twice a week and is also coaching some younger players. He is absolutely loving life and is extremely ambitious about become a football coach and then director of football 🤞. 

We have an amazing care team who are very dedicated to Sophie. This allows me to take time out and enjoy some cooking and gardening!! 

Sophie loves receiving her post ! 

Thank you to everyone who has sent post and continues to send Sophie cards letter and gifts, it really does make a difference.

Update 2nd August 2023

Sophie is now 13 but not wanting to be called a teenager! 

She is still massively into learning all about animals and loves any magazines/books that are mostly factual about domestic pets or wildlife in general especially safari based animals. 

She also still loves anything Minecraft related . 

Sophie has recently been suffering from various infections, a neck pressure sore from trachi ties and sure over granulation on her gastrostomy site along with mouth ulcers. 

We have had swabs taken and she’s been in antibiotics which always give her an upset tummy so she’s really not been feeling too great. 

We are awaiting blood test results but think maybe just her age and hormones playing havoc with cortisol levels making her low and prone to infections. 

Hope to get her back up and feeling feisty again very soon. 

George is 16 and cannot wait to start college in September. He is on a 3 year FA course and plans to be a football coach as a start into his football career. 

Update 25th March 2022

Sophie is doing really well & having home tutoring 3 times a week and a zoom lesson with her class once a week which she really enjoys! She has finally had her first covid vaccine and once she’s had 2nd in may we can look at getting her into school once a week hopefully building up to 3 times a week if possible.
Sophie’s going to be 12 this year and we all rely want her to have any independence that she can so we are looking into eyegaze systems which will enable Sophie to use her laptop for calls/ messaging, YouTube even playing some games using her eyes.
This could be amazing for her!

George is doing well at school it a bit shocked at all the course work that’s involved this year but hoping he learns to just pace himself and avoid to much stress! He is still enjoying playing for his local football team and supporting Man United!
He’s just got himself a job as kitchen porter in a lovely restaurant near to us, he’s eager to earn himself some money this year and they seem very happy with him so all is looking good!

XxxX

Update 30th October 2021

Sophie is having to go to Southampton General on the 8th November for a week to have brain and spine MRI, central line removed, gastrostomy changed to a button and 2 sleep studies. 

It will be exhausting as myself, Mum and Dad have to take it in turns to stay awake at night, we will possibly do 3-4 hours each. Sophie has to have an awake carer in case her tracheostomy disconnects or blocks, this will be seriously life threatening. 

We will be so physically and mentally exhausted by the end of the week… then the exhausting journey home & a good 2-3 hours setting Sophie back up and unpacking… 

Granny is coming to look after George, house and cats! 

Update 15th April 2021

Sophie is still happy being indoors although is looking forward to a Tesco’s shipping trip hopefully in the next couple of weeks. 

We were offered a routine MRI brain and spine scan but as we have no concerns at this time we will review in the autumn , we do not wish to put Sophie at any covid risk travelling on boats to Southampton and an over night stay at hospital.

We are hoping Sophie may get a covid jab at some point but this is all.up.in the air at the moment. 

I visited her brothers school today to see what facilities they have for Sophie to attend on occasions from September. 

I was pleasantly surprised to find that they have a reasonably sized lift, a full size changing room with ceiling hoist & bed for changing. 

A great library & plenty of quiet rooms. 

Best of all it’s only a 15-20 minute drive and some of her friends are going there too. 

Fingers crossed it all falls into place and Sophie will enjoy some time out in a school environment!

Sophie loves reading, she’s doing so well with her  spellings too.

She likes books and magazines about animals and shocking / scary things! 

She still loves Minecraft, Tinkerbell & dragon riders of Berk. 

George is really enjoying being back at school, he’s very independent and gets up pretty early at 6.30 to get the bus to school. All his friends get a lift in but he enjoys getting the bus! 

He still supports Manchester United with a passion & likes to watch top gear and Gordon Ramsey. 

He prefers eating to cooking these days but hopefully the cooking will come back in at some point!! 

Thank you to everyone that sends post and to our regulars , sorry we haven’t been InTouch , I seem to be extra busy now it’s Spring!!! 

Update 3rd December 2019

Sophie has continued to be fairly stable so we have managed to get her into school three times a week for 90 minute session of English, maths and science. She is attending her local mainstream school and has the assistance of her home tutor or carers or mum in the classroom!

At some point we hope to get a teaching assistant trachi trained so only one carer would need to go with Sophie. We are still awaiting Sophie’s power chair. Unfortunately our local wheelchair services has pretty much gone to pot with staff being sacked and staff leaving! So everything has been put on hold for quite a few months.

We hope that it might be ready for early spring next year …

Sophie is nearly a free reader, so she had done well in the last year to catch up as reading makes her extremely fatigued, but she’s determined to do this! We are hoping to get Sophie’s gastrostomy changed to a button in the new year/February as this will mean I can puree meals and feed them through so she will have a much better balanced diet for the first time ever!

We also hope to have a full head and spine MRI and her central line removed as this has been in for 5 years now and is only used for bloods, so it’s time for it to go! Sophie has been to the cinema a lot! She has seen the Addams family, Abominable, Dragon 3, A Dog’s Journey, Frozen 2, Dora the Explorer, The Lion King, and Maleficent! It’s been a great year for films!! Sophie is looking forward to seeing, Cats, Trolls 2, The Secret Garden, Dolittle, and Scoob! Sophie’s favourite thing to receive in the post is stories and photos of people’s pets!

George is enjoying school (Year 8) and is doing so much football training it’s ridiculous, but he loves it and loves his food too! He has asked to have counselling again as he does have some emotional times at school. He is getting older and worries a lot about Sophie. So hopefully this will be put in place soon and be helpful in someway for him. He’s 13 next year!! George carries on to be football mad and a Manchester United fan and Southampton! He is off to see Southampton and Crystal Palace on the 28th December.

Thank you very much for all the post from all over the world and all the regular writers and senders. We try and thanks as many as we can either by postcard or Facebook, but at times life is just so busy!

We really do appreciate everything that is made/bought/written & sent!!!

Much love Louise, Jake George & Sophie xxx

Update 18th July 2019

We are currently awaiting a power chair for Sophie which is being funded by Whizz Kids and built by Millbrook Wheelchair Services. We are not sure how much Sophie will be able to use this herself with limited use of one good hand, but with practice it is possible and will give her back some independence, which would be fabulous!!!

Sophie has been into school for a few visits and we are planning on getting her in for three 90 minute sessions a week in September.

She will possibly be going in Year 2, as she has missed practically all of school although she is very bright and not too far away from being a free reader, so she may catch up a little if we can stick with it and with the help of home tutoring.

George is at the end of Year 7 and still massively into playing football for his local team and following Man United.

He is going to see Man United play Southampton at the end of August as Southampton hospital are very kindly lending him their season ticket to see the game! Lucky boy!

Thank you for all the recent post for George and Sophie.  We are now looking forward to a few summer holiday lay-ins!

Update 3rd March 2019

Sophie remains in palliative care, although as she has not deteriorated since last summer we have asked for a MRI scan so that we can see what is happening with regards to her tumour. Sophie remains mostly paralysed and unable to use her hands enough to play any games or feed herself etc., so we continue to push with physio as much as Sophie can manage. So depending on the outcome of her scan we shall push physio further if there’s been no more tumour growth. Sophie has started to recover from fatigue more quickly, which is a positive sign in itself.

We expect to have the scan mid-March and results by end of March.

Update 2nd November 2018

We are collecting Sophie’s new moulded wheelchair on the 7th November so hopefully sophie will be happier in this to go out and we can get to the cinema & a few shops & Xmas events on the sunny days when she’s not too tired..

Sophie is getting more tired as time goes on but she still has some bright days so we will aim to make the most of them & enjoy them in anyway that makes Sophie happy.

We did manage to take Sophie trick or treating  for half an hour which she totally loved & we are hoping to go to the fireworks tonight in the park behind us for a speedy trip in & out!!

Thanks for all the lovely messages & cards & gifts for Sophie & George!

Update 15th September 2018

Sophie has received some amazing post which has included some gorgeous fluffy animals & jigsaw puzzles & artwork, thanks so much to everyone as it’s so wonderful to receive such lovely thoughtful gifts! Sophie is totally bed bound again as the chair that was provided to get out and about is just not practical for her, it’s basically very uncomfortable & the last thing we want is for Sophie to be upset, going out needs to be a comfortable enjoyable experience!!

We are awaiting a referral for a moulded chair which unfortunately will probably take a couple of months. Such a shame as Sophie is desperate to go the the cinema and back to Tesco’s & the local garden centre.

Sophie does still have home tuition once or twice a week & her reading has really come on, it’s so very lovely to hear her reading!

George is loving his new school & has grown up so much in the last few weeks! He’s decided he wants to be a professional goalkeeper but there’s no professional training  on the island so he just spends hours and hours at the weekends in the park practising with his friends!! He supports Southampton & Man United. George also has a keen interest in cooking! He watches all the Bake Off programmes & Masterchef! He might like to receive some not-too-complicated recipes for dinners or desserts to try!!

The kittens are now nearly 6 months & are a godsend, they adore Sophie as much as she adores them & spend a lot of time on her bed for cuddles! Thanks again so much for all the post & support!!

Love Louise, Jake, George & Sophie xxx

Update 10th June 2018

Sophie has had an extremely tough time since Christmas. The swelling from the proton treatment that she had last summer has caused lots of complications and Sophie has spent a lot of time in hospital.

She has been resuscitated twice and has been left almost paralysed from the neck down, although she has regained enough movement in her left hand to play her tablet with some help. She has completely lost her appetite, mainly because she cannot feed herself and does not want to be hand fed so she is currently on feeds through her gastrostomy.

We are waiting for a ’tilt in space’ chair to be made for her needs so that her ventilator, suction machine and other medical equipment can be safely placed on the chair to enable us to take her out of the house again. Sophie has either been housebound or in hospital since Christmas.

Considering the huge change in Sophie’s abilities she still remains quite happy, amazingly, and we cannot wait for her new chair to arrive – hopefully before the end of the summer so we can take her out and about and maybe even into school again!

Apologies to anyone who has sent post in the last 5 weeks as we haven’t been able to pick it up, but we shall be collecting this Friday 15th june.

Thank you to everyone who has sent post and birthday post. Sophie had a great birthday with a visit from Tinkerbell and 5 of her friends for a little party

Update 5th October 2017

So Sophie has now completed all her proton treatment in Florida (28 sessions in total) and thankfully has not experienced any side effects! The trip was amazing, all the staff at the proton centre were lovely and Sophie and George very much enjoyed their daily Mon-Fri visits there, albeit sometimes very early in the morning!

We were lucky enough to have two weekend trips down to Disney World. We visited The Magic Kingdom, Epcot twice and Seaworld!  Sophie’s favourite was Seaworld as we saw some fantastic shows, the dolphins being sophie’s favourite of all!

Now we are home and trying to get back into some sort of routine, Sophie will have an MRI scan in November sometime and this will hopefully give us some idea of what the proton treatment has achieved. Until then we are getting Sophie into school at least 4 times a week with physio at the local hospital once a week. Thank you so very much to everyone who sent post to Sophie and George in America, it was all very appreciated!

Update 25th August 2017

Sophie and George have flown out to America where they will stay for three months. Sophie will be having daily proton therapy (a type of radiotherapy) to treat her brain tumour. They would love to receive post while away from home.

Update 5th June 2017

Thank you for all of Sophie’s birthday cards & presents she enjoyed opening them so much! So many cards it took a while! We managed as a family to have a week away in the New Forest thanks to Hannah’s Holiday Homes who provide fabulous accommodation free of charge to families who have children who are receiving treatment, it was our first family holiday together, just the four of us, it was wonderful! We even made it to Legoland which was fabulous for Sophie who got to go on lots of rides, they cater very well for wheelchair users, we were very impressed, even the changing facilities were easily accessible & staff extremely helpful!

We have just had some very very unexpected exciting news…  Sophie had been accepted for proton treatment in Florida! We had been under the impression that she would probably not be able to fly long haul what with being on 24hour ventilation but it seems all is doable & the proton centre has accepted her for treatment!! We do not have a date as yet but it’s looking like July!

We will keep you posted on Facebook!

I have added a more recent photo of Sophie as her hair has grown like crazy and she loves her little plaits!!

We hope to make the Post Pals party in July!!

Love to all

Update 14th March 2017

Sophie has just finished a ten session intensive physio course which has been successful to the point that she can now crawl from her bed into the lounge to the sofa instead of bottom shuffling and can pull herself up to her knees onto a physio bench. Sophie was also able to stand with minimum support for up to six minutes! This is fabulous progress and we are hoping to carry on with this physio once a week.

Sophie has had three hospital visits since Christmas with different infections with up to ten day stays, we are hoping for fewer of these in the future as the weather improves and her current course of chemo is due to finish in March, her counts will go up to normal levels three weeks after the end of treatment which means she will be able to eat things like Mr Whippy ice creams and milkshakes again!! She is very excited about this!!

We have a plan to get Sophie back into school three to four mornings a week and she will still have her home tutor twice a week, our main aim is for Sophie to learn how to read well, something that can be so easily taken for granted but this will really open Sophie’s world up!

George is now hugely into cricket and plays for the local team and has been lucky to be chosen for a day out at Hampshire cricket ground and to meet the cricket team there and practice with them! George has been really helping Sophie with her physio which helps so much in creating a positive attitude for Sophie!

Thank you so much for all the letters and gifts, this has helped so much especially with the hospital stays when the days are long!!!

Update 4th January 2017

We were so very lucky to have this Christmas and New Year at home, the first for two years, so we really did appreciate it so much. Sophie is starting intensive physio at the end of January for ten sessions. The aim is to get her standing, which she hasn’t been able to do since October 2015 when she had her brain tumour de-bulked and spent eight months bedbound and in recovery.
Sophie is still having her weekly vinblastine chemotherapy. They may look at stopping it for a while at the end of February depending on the results of the next MRI which is due in February.
We also hope to get Sophie back into school one to two mornings a week once the weather warms up a little. Thank you so much for all Sophie and George’s post. Sophie opened so many letters over the Christmas period she said she must be famous to get so much post!!!

Update 12th November 2016

Sophie has her MRI scan this week so we will have the results from that in the next update, Sophie has not been able to go to school as the weekly chemo is making her quite tired and also there is always someone in her class with a cold so she is not able to attend as she is at high risk of pneumonia just from catching a cold. Sophie is having home tuition three times a week which she totally loves!!
Physio and OT are happening most weeks but no improvement as yet, we are getting a wheelchair hopefully by the end of December, her ventilator and suction machine will be able to be fixed to the chair to give Sophie some independence, it will take some time to adjust to this as she has been pushed in a mobility buggy for the last year, however as Sophie is very tall for her age at six years old she is rapidly outgrowing the buggy so a wheelchair is the best option for her at this stage.
A huge Thank you for all the post in the last few weeks, we do try to send thank yous out or online but sometimes this is not possible but we are very grateful for every single letter/card/postcard/gift,
They all make a huge difference to George and Sophie’s days ,
lots of love Louise Jake George and Sophie

Update 2nd October 2016

Sophie is starting home tutoring at the beginning of October three times a week, an hour at a time, she is going to really enjoy this! We can also take Sophie into school three mornings a week depending if Sophie seems well enough and as long as there are no poorly children in her class. Bit difficult this time of year but as Sophie is on weekly chemo & with all her respiratory issues she is so very vulnerable. We want to avoid hospital visits as much as possible for Sophie and Georges sake. If Sophie catches a cold it’s at least a week in hospital on antibiotics, this will happen but we shall try our best to keep Sophie out of hospital when possible!

Sophie’s new bedroom and wetroom have been built! We are just choosing carpets, flooring, wall colours and curtains etc. Hopefully she can move in by November! Very exciting!

Huge thank you to Post Pals for the Chessington trip, it was our first weekend away as a family without nurse assistance and thanks to the whole weekend being so well organised we had a great time. Sophie got to go on 3 rides twice and loved the haunted house so much! George was very brave and went on rides we never thought he would which boosted his confidence considerably!! So thank you for a fabulous weekend that will be remembered forever.

Thank you to everyone who sent post in September, we had beautiful cards and lovely gifts, it really does make a huge difference to Sophie and Georges day when they have post to open!! Thank you and much love from Louise, Jake, George and Sophie

Update 9th September 2016

We are all keeping everything crossed for a good week ahead as we are so excited to have been invited on the Post Pals Chessington weekend this week! This will be our first weekend away since Sophie’s diagnosis in September 2014, other than a Naomi House stay last year!

Sophie is eating totally normally now! She is bottom shuffling around a lot more! More attempts of standing but not there yet.
We are trying to put outreach for school lessons at home in place as she really is desperate to go to school but as she is on chemo and very vulnerable to infection and the school is not quite set up for her mobility needs yet, we feel that homeschooling will be great for her at this time.
Any time she does get to go into school will be an added bonus! Sophie does miss her friends and the school environment so very much.

The last MRI back in July went well and the results are stable. We always obviously wish for news on tumour shrinkage but stability is obviously a positive too.
So Sophie’s chemo dose has been increased as she was coping with it very well. Sophie is a bit more tired because of the higher dose but still eating well, praying the higher dose chemo does its work a bit better, ready for the next MRI, possibly in October time.

Huge thank you to everyone who sent cards/letter and gifts, some beautiful handmade cards and gifts! So many talented, kind people out there!

Update 8th August 2016

Sophie came home on the 14th June, we didn’t expect it to happen but she did make it home. We have a care team being trained as she needs 24 hour care because of her tracheostomy and 24 hour ventilation and being immobile, although Sophie has learnt to bottom shuffle again which happens once or twice a day. Sophie has weekly chemotherapy which is ongoing and is due an MRI on July 29th, so we are all keeping everything crossed for signs of shrinking of the tumour in her brainstem. She has a bed and all her equipment in our lounge until her new bedroom & wetroom are built, which will hopefully be end September/October.
Sophie is currently in her local hospital with a chest infection which we are all trying to knock on the head quickly as she can deteriorate very quickly in these situations.
Anyway, hopefully we shall be back home soon and we will update with MRI results when we get them. Huge thanks for the parcel that was sent to Sophie.

Story written 2016

Rossi was diagnosed with ALL on Friday 21st March 2014 when he was 4 years old. He was always a happy, bright and smiley little boy, but for some time he’d been backwards and forwards to the doctors and hospital with unexplained illnesses, fevers and always feeling tired.

Even when we found a lump in his groin they gave us different types of antibiotics, convinced it was just his lymph glands. The crunch came when he was in extreme pain for 10 hours, nothing would help and then he just couldn’t walk or move. We got rushed in for a biopsy and got the devastating news the next morning.

Throughout all of this my little hero never stopped laughing or smiling and making other people happy. He is forever thinking of how to help others and is always making people laugh on the ward with his cheeky grin and infectious laugh. He always wants to take things in for the other children to cheer them up like a present or a cake. I’m so proud of his strength and courage despite his daily struggles.

Our end of treatment date is 20th May 2017 and can’t come soon enough

Update 15th February 2017

Rossi has been really poorly for the last few weeks and had a week in hospital with a line infection. He’s lost a lot of weight because he won’t eat anymore so he’s also just had a nose tube fitted.

We are so close to end of treatment. 20th may will hopefully bring the good news we are waiting for.

Rossi absolutely loves getting his post and It really does lift his spirits and make him feel special.

Thank you to everyone who takes the time to write to him.

Thanks for all your hard work x

Update 18th August 2016

A huge thanks to everyone who has sent mail to Rossi it really does cheer him up. We’ve had a few visits to hospital, a nasty bug and a blood transfusion but other than that he’s doing really well at the moment and looking forward to going back to school and seeing his friends.

Story written 2016

Harrison was diagnosed with acute lymphoblastic leukaemia in October 2015, a day after his 3rd birthday. A few days before his birthday Harrison’s nursery spotted something odd about him, he looked very yellow. We took him to the emergency doctors who told us he was just anaemic and to see our normal GP. A few days later at an appointment, his GP wasn’t happy and sent us to A&E, where they took bloods, did x-ray and CT scans. Later that day we were informed he had leukaemia, but due to low blood levels he had to have two blood transfusions later that night.

We were meant to celebrate his birthday on the Saturday, but due to Harrison being ill he was in our local hospital for a few days, until a bed was available at Great Ormond Street Hospital.  We were then told what type of leukaemia he had and how they would go about treatment.

It was a total shock that our son was ill. We had to explain to his older siblings that Harrison’s blood wasn’t working properly, so it was making him poorly. Harrison has now just started maintenance, so still has another 2 years and 4 months of treatment to go. With Harrison being a lively boy he has taken it all in his stride. Luckily we haven’t had many overnight stays in hospital, but at the end of May he caught a bacteria which is not very common. He spent five days in hospital, then the next six days going twice daily to make sure his cultures stayed negative.

He has missed a lot, not seeing his friends or being able to go out for the day, as sometimes he would be neutropenic, so was at risk of infections. His older siblings have also missed days out and holidays, like during June half term when Harrison was in hospital. Harrison is just a cheeky little chappy and always smiling.

Update 2nd November 2018

Harrison has had a rough 8 months this year with flu, line infections and bad infection on his lungs. 

He is now doing well and he finishes treatment on the 18th December. 

Update 7th March 2018

Harrison has been very ill the last 5 months, he has been in and out of hospital with line infections and viral infections. At the moment he is stuck in hospital.

Update 17th October 2017

Harrison is doing well, hospital are happy how he is responding to treatment. But as of late he is struggling with aches and pains in his body now.

Update 5th January 2017

Harrison has been doing well, but has had a few hospital stays because of infections.

Story written 2016

Felix was diagnosed with Acute Lymphoblastic Leukaemia in January 2016.  It came out of the blue.  Felix was an energetic, sport-loving, football-mad 10-year-old boy who that week had been on a school residential trip.  Before we knew it he was launched into a world of cancer, chemotherapy and hospitals.

Felix‘s diagnosis means that his life has changed irrevocably.  His treatment will last 3 years and 3 months; when he finishes treatment he will be 13 years old and we have no idea what the long term effects might be.  Felix spends a lot of time in hospital, he can’t attend school and all social activities have ceased.  The most upsetting thing for him is that he cannot play football or sport.  We don’t know for how long, but this is the thing he misses the most.

Life for Felix now involves daily chemotherapy.  Some chemotherapies he can take at home, or the community nurse visits us, or he has to go into hospital sometimes for up to 5 days.  He has to have regular blood tests, take daily medication for sickness and to prevent infection, regularly monitor his temperature and do mouthwashes to avoid ulcers.  There is no control over any of the treatment, which has meant he was in hospital over Easter, he missed his best friend’s birthday party and we cannot plan any holidays.

Despite all of this he never complains.  His little brother asked him the other day what it felt like to have cancer and he replied “it’s just normal”.  He knows he is different to his friends now.  He cannot fool around with them, he has to be careful in case his port, which was surgically placed in his chest for IV access, is knocked.  He can’t even eat the same foods as his friends any more.  To him though he has just adjusted and lives life a bit differently.

Felix does kick a ball around in the garden with his brother and he loves going to watch the mighty cherries, his beloved AFC Bournemouth.  He chills out playing XBox or watching his favourite YouTubers, Spencer FC and Oli White – he idolises these YouTubers!  He is a keen Eastenders fan and his all time favourite TV programme is ‘Don’t Tell the Bride’!  He is one of the kindest, most thoughtful boys who would do anything to help others.  He said the other day that he can’t wait to be an adult so that he can help other kids, like people have helped him.

Being a Post Pal would help Felix by giving him something to look forward to.  This is the key to keeping him positive and looking to the future.

Update 5th January 2016

As Felix has now returned to school and is now on the less intense part of his treatment, he would like to let another child have the opportunity of becoming a Post Pal, as would Talia and Rufus.

We would like to thank you for you love and support. Post Pals made a very difficult time for us, far easier to cope with and for this we are grateful.

Update 6th October 2016

Felix is now in the maintenance phase of chemotherapy treatment for Acute Lymphoblastic Leukaemia. The phase will last until 2019. He continues to take chemotherapy tablets daily, up to 21 tablets a day, have weekly blood tests and regular clinic appointments. He continues to have a restricted diet and precautions still need to be in place because of his suppressed immunity. On the whole, life is much better for Felix and his siblings now that the intense phase of treatment has finished. He is attending school regularly and is back playing football which means the world to him. Rufus loves having his big brother back and going to school and alongside Talia are back to usual sibling stuff. We would all like to thank Post Pals for their continued support. There are still tough days and I don’t how you do it, but you can guarantee when things are a bit tough, something will come through the post from Post Pals and perk us all up.

Update 16th August 2016

Post Pals is working tremendously for Felix, Rufus and Talia and truly uplifting their spirits, making them feel special and bringing a smile to their faces.

Felix has just finished the first part of Delayed intensification which involved an intense period of steroids, chemo and unfortunately an unexpected stay in hospital.  We are hoping that he will start the last two weeks of this phase of treatment, depending on his blood counts tomorrow.  The side effects of this phase have seen mood changes, weight gain, total hair loss for the first time and weak legs.  These will gradually subside.

I want to thank you and all your wonderful volunteers for helping Felix cope with this intense treatment whilst acknowledging the effect it has had on his brother and sisters.  For those Post Pals who have provided addresses he has written letters which we hope will be posted this week.  If we have omitted anyone we really do apologise.  Sometimes, it is quite chaotic and I can’t always keep track of when and where they open the post!  They are always so excited.