Story Written 2015

Emily was born with half a heart (Hypoplastic Left Heart Syndrome) and had three open heart surgeries before she was 3; this led to anxiety and difficulty sleeping. She also developed small motor tic disorder causing her to grimace and click her fingers.

Emily is incredibly brave and faces life head-on. She is also funny and self-deprecating but is often isolated as she cannot live life as other teens do.

In addition to HLHS, Emily has short stature and is around the size of a 9 year old.

Over the past 10 years, Emily has developed a serious leak on her heart valve which has been closely monitored during her many hospital visits. This past year, the leak has become critical and she has been hospitalised to have her heart restarted three times. She is now in heart failure and will have open heart surgery on December 5th: she is expected to be in hospital for 8 weeks or more. At present HLHS does not have a cure.

Update 13th May 2017

Hello everyone, these past few weeks have been quite rocky for Emily. At the end of April she collapsed at school, she was very lucky where she collapsed and only came out of it with some big bruises down her right leg, as well as on her hand. From there, the ambulance was called and she was taken to her local hospital for further tests, everything was done, as a lot of the doctors were worried it could be because of her heart.

In the end she had a pacemaker check and the results showed us that the pacemaker wasn’t firing properly, so this would cause her severe dizziness and in the end her collapsing. She stayed the night at the local hospital and was then transferred to Evelina the next day, after further tests the doctors at Evelina then decided to keep her at the hospital and operate on her as soon as the next slot was available.

The operation ran smoothly and the doctors are keeping their fingers crossed that this time everything will go as planned and hoped for. Emily spent 4 days at the hospital after surgery and then came home for just over 2 weeks, she is now going back to school as a boarder.

Although the recovery was quick, we are still unsure what the future holds for Emily, but we do our best to push the worry away and focus on everything else. Emily has her Mock GCSE’s in 3 weeks, which she is worried about as Emily has spent a fair amount of time away from school,but she is working hard and hoping to come out of them with high B’s and A’s.

We would all like to thank everyone who has continued to support our family through the hardships we face, you really do make Emily smile and she is very excited for the Post Pal party in July, fingers crossed that Emily will be well for it.

Update 26th April 2017

Emily was transferred to Evalina Children’s hospital yesterday and is currently awaiting open heart surgery. This will be the third in 18 months. Thank you to everyone who supports Em through the hard times. If you do want to send her post, please send it to Emily R, Savannah ward (cardiac), Evalina Children’s hospital, London

Update 2nd March 2017

Hi all, This month Emily has had a good month, she started the month with her appointment which went well and we are expecting another appointment in April sometime. Emily has had really good blood results this month and recently she has only had to test once every few weeks, which is so much better than every week for obvious reasons. So health wise she is as stable as she can be really.

Besides from Emily’s health she is very happy as she has been given the all clear to go on a trip to Lourdes in France that she tries to go on every year. She is going with a disability trust and is very very excited. Because she has been really quite well she has started to help other pals more by sending cards, letters and gifts out more regularly to different pals. She is also hoping to climb the O2 arena in May for charity. So more about that when we have the all clear to do so.

Emily would like to thank each and everyone of you. She has received some amazing post this month, we would like to thank Bev for the great hot chocolate she recently received, she really likes it and thinks that once she has run out of it she will by the same one again. Lyn, for all of the cute crafting bits you send to Emily and also she really like keeping in touch with you every few weeks.

They are just the tip of the iceberg, thank you really everyone ❤️

Update 30th December 2016

Emily has been fairly well for the last couple of months. She had a pacemaker appointment early December, before Christmas at London. Unfortunately, we had the news nobody expected or wanted – Emily’s pacemaker has started to fail, just as it did last time, but more rapidly. We have another appointment at the end of January,firstly to see if there has been any change (good or bad) and secondly start to form a plan. Currently the pacemaker’s life has got 2 years max, but as we know from last time 2 years can turn into 7 months very quickly, depending on the threshold of Emily’s pacemaker. It seems that this time there is nothing wrong with the lead, but in fact something wrong with Emily’s heart, making things more difficult as we move on.
Emily is a worrier and is worried about what is happening ,but also she is worried about the work she is missing at school. She is now in her initial GCSE year (10), so her work is more important than it used to be.
We would like to say a massive thank you to everyone who has sent post to Emily recently. Emily does try to send replies to everyone who has an address as often as possible. She has been given some amazing things and she said some of her “collections” are growing!!
Emily, Paul and I wish everyone a great start to 2017 xx

Update 23rd October 2016

Em had a chest drain late last night and it’s drained loads of blood from her lung tissue and chest cavity. She was sedated and on a ventilator all night, but is now coming around and breathing by herself, this is really great progress.

Update 23rd October 2016

Em suffered a major internal bleed that led to a sudden and extremely scary rush to intensive care. She turned white, non responsive, her left lung filled up and then collapsed as her chest flooded. Emergency care gave fluids and 3 bags of blood. She is now sedated in ICU as they run tests and drain the fluids off. Her cardiac registrar said it was ‘very hairy’ for a while.

Update 23rd October 2016

Emily was admitted for emergency surgery after problems with her pace maker. They had to open her chest to replace it and she has since had a collapsed lung. She is awake and in a lot of pain.

Update 9th July 2016

Lots of trips back and forwards to Evelina Children’s Hospital this month. Emily’s pacemaker will have to be replaced within the next eight months, so this is causing her a lot of worry.

She was due to go on her first senior school trip to Naples later in the year, but sadly she has been refused a ‘fit to fly’ from her doctors, so is terribly disappointed.

Over the moon that the school year has come to an end though and brought home another brilliant school report. Total superstar!

Update 2nd June 2016

Not great news this month. Emily has had to go down to Evelina a few times as her heart rate has dropped. Her pacemaker is not working at all well  as previously thought, will only be viable for up to eleven months. At the moment Emily’s specialists are deciding what they should do. This is going to take a while as Em has a unique set up with having only half a heart.

It’s a very worrying time for us all, as we wait to see if there is a possibility that she doesn’t have to have another major heart surgery this year. This is looking increasingly unlikely.

Emily is as always, her usual happy self. Trying to get on with her school work as she begins her GCSE years.

Update 6th May 2016

Emily has had a few minor problems this month. She had started to feel dizzy so we had to go into Evelina children’s hospital for some tests. The doctors have altered her drugs slightly in the hope this clears up, but this has led to her Warfarin levels dropping below the right level.

Her heart rate has slightly improved, but still couldn’t function without her pacemaker.

She is in her usual good spirits and is very grateful to everyone who takes the time to think of her.

Update 3rd April 2016

Not great news for Emily again this month. Her pacemaker is not working properly and will need to be replaced, which means another open chest surgery and time in hospital. It’s especially bad news for Em as her scar had healed well and we felt the worst was behind us.

Thank you to everyone who has thought about Emily this month. She is not able to write back to thank everyone, as she is back in school full time. She is trying to catch up with the work she missed while she was absent, and be ready to start her GCSEs in the new term.

Update 4th March 2016

Emily has had quite a good month this month. Thank you again to everyone who thinks of her. Bloods are still needing to be tested weekly, but INR levels are starting to even out and her scar is healing. She’s felt a little bit down recently as her school are strictly limiting the activities she takes part in, and she likes to try to live life as much as she can.
She’s recently taken up baking and really enjoys thinking up new recipes.

Update 5th February 2016

Emily was rushed back to hospital at the beginning of the month when her newly fitted pacemaker was having problems. After a few days at Evalina she came back home.

Now on Warfarin, she is having weekly blood test as we try to get her levels to stabilise. These are always painful because her veins often collapse.

Emily has received some lovely cards and gifts this month. Thank you so much to everyone who takes the time to think of her. It makes such a huge impact on her life.

Update 21st January 2016

Emily was rushed by ambulance back into Evelina and spent the second week of January back in hospital. Her pacemaker had been set at the wrong level and her heartbeat had dropped to 40 beats per minute. She was struggling for breath, but we assumed it was part of the recovery process, until she started to turn grey. Who knew a pacemaker could be set at the wrong level?!

Emily’s also struggled with her Warfarin levels, and is having to go to our local hospital every few days to have bloods taken. This is always traumatic, as most of her veins have collapsed.

At home until March, the post she receives is a real brightener. She’s been using the scrap booking gifts to make cards for other Pals, and also sent her own gift box to another Pal last week.

She is, as always, upbeat and has started to have schoolwork sent through, so she doesn’t get too far behind.

Thank you to everyone who thinks about Emily. Post Pals has been the best therapy!!

Update 31st December 2015

Unfortunately Emily’s operation to repair her heart valve was not possible. The surgeons fitted a new valve and a pacemaker. She will need to take Warfarin and at some point will require more open heart surgery.

She has left hospital and is now at home recovering for the next six to eight weeks, before returning to school.

We’d like to thank everyone at Post Pals and all the senders for making Emily’s time in hospital so much easier. The response was unbelievable. We think she received over 100 cards and letters and lots of parcels too.

Story Written 2015

Rocco is 5 years old and has spent most of his life in hospital. He has been fed by TPN (total parental nutrition) since he was 9 months old. He is very complex and has intestine failure with no immunity, as well as this he has bone marrow dysplasia, hypopituitarism, hypothyroidism and hypoglycaemia.

In August 2014 Rocco had a multivisceral transplant (liver, intestine and pancreas). Unfortunately he has been in and out of hospital since due to multiple complications, which have resulted in PICU stays, and he is currently in HDU.

Despite all this Rocco is a smiley little boy who loves spending time with his sister Olivia and playing on his iPad.

Update 20th April 2020

Olivia is now 14 and loves receiving post from Post Pals.  She loves beauty , Disney , Dancing and loves anything to do with hair. Her passion is cooking. She told me when she grows up she would like to own her own dance school and also become a chef

Update 19th January 2016

Sadly Rocco passed away peacefully with his Mum by his side.

Please keep sending cheerful post to his sister Olivia.

Update 11th January 2016
Rocco really enjoyed the post he was sent. Sadly on Christmas Eve Rocco deteriorated and had to be moved back to intensive care. His family have since saved his post as he hasn’t woken up. Olivia is finding the post she has been sent helpful at such a difficult time for the whole family

Story written 2015

Aiden and his family went on holiday in October 2014 and he banged his leg. He was complaining for the rest of the week about it hurting. When he returned home he was taken to the hospital and was told he had broken a bone in his leg. A blue pot was put on it and by November the hospital took it off saying he was fine.

However, Aiden was still complaining his leg was hurting and was starting to look really pale and feeling very tired. Aiden was picked up from nursery one day and the teacher told his mummy he had been asleep all day. He went to the doctors and was told he had an infection, so they gave anti-biotics and said to go back in a week if no better. One week later he was so weak and pale and as soon as he walked in to the doctor’s office they sent him straight to the hospital.

On the 6th December 2014, Aiden’s parents got the heartbreaking news that he had leukemia (ALL) and his family were devastated.

Aiden was told he would have to stay in hospital for about four weeks whilst the doctors tried their best to get him in to remission. Finally, on the 23rd December, Aiden was allowed to go home to spend Christmas with his two big brothers and big sister.

On January 8th, Aiden had his line fitted in his chest. This meant no more needles were needed and Aiden was very happy about that news.

Aiden is doing very well with his treatment so far. He’s now going through Delayed Intensification which is the worst bit so far, using very strong drugs. He’s been admitted twice, for a week at a time, since his stay last December.

Hopefully Aiden will be able to start big school in September.

Update 21st June 2021

We have decided to move Aiden on. Lockdown has had a brilliant effect on him, he’s doing so much better and I think it’s time we passed his place to a family who needs it. We thank you for everything you have done for our family. You have restored my belief in the love of strangers. We will always support post pals. We love you all.

Update 27th November 2019

So Aiden has been off treatment for nearly 18 months and things for our little man don’t seem to have gotten any better he catches every cough, cold and infection going, he has little to no immune system. He struggles with his muscles in his legs as the chemo has wrecked them and he’s having lots of mental issues coping with day to day life. Amy is growing up so fast. She is still an amazing patient big sister, as a family we just plod on and hope things turn around soon for our little man. We just want to thank all Aiden and Amy’s pals and all the volunteers at Post Pals for helping my awesome children.

Update 1st October 2017

Aiden has had a strange few weeks, not been his happy smiley self. His doctors think his body is just telling us it’s had enough with being pumped with chemo. He’s had  no energy to do anything. We’ve had lots of sofa dvd days now, but he will get there, he’s a strong super hero. Just want to say lots of thank you’s to everyone who sends post, you light up our children’s lives and we get lots of smiles because of you guys, so, again, thank you all so very much.

Update 6th January 2017

Aiden is about to start the last year of treatment, so we have been warned to expect many infections and tiredness, so lots of snuggly days ahead. Thank you to all our pals, we appreciate your love and support.

Update 2nd October 2016

Aiden and our family got to go to Chessington this month, had such an awesome weekend with Post Pals, thank you so much, it was so nice to have that family time together. Aiden is getting really tired really quickly at the moment. His doctors have said he’s going into his 3rd year of treatment, so his body is going to be tired from all the chemo he’s had so far, so we are just spending a lot of time at home where it’s warm and if he needs to nap he can. Thank you all again for your love and support for Aiden and his family.

Update 9th September 2016

Aiden’s doctors have put his steroid dose up and he’s having a really tough time with his emotions, he can’t control them at all and he’s tired all the time. He did have an awesome time at Chessington with Post Pals with his big brother and sister. He was given a bravery bean of courage when he had his chemo, as he was so brave and sat by himself instead of on Mummy’s knee. Thank you so very much again for taking Aiden and his family into your hearts.

Update 18th July 2016

Aiden had a busy month planning his birthday party, he also has his school trip coming up and if he’s well enough his sports day. Medically his doctors are really happy with how his treatment is going, he is on 100% home chemo. This makes him very tired, so as soon as he gets home from school he falls asleep. I would just like to thank all Aiden’s post pals,they light up his life and we love you all for that. Aiden’s post brings so much joy to him and his brother and sister, thank you again

Update 4th June 2016

Aiden had to be taken off chemo again as his bloods dropped dangerously low.His doctors are worried about how much time he keeps having to take off his chemo, in case the cancer comes back in. We did get a chance to go to the Lego discovery in Manchester at the weekend. Aiden had such an awesome time even though he had to use his wheelchair, it was so lovely to just spend some family time together. We were given some tickets by a family friend. Thank you all so very much to all our post pals, if you could maybe leave an email address on your letters so we can stay in touch, thank you all again .

Update 16th May 2016

Aiden is really struggling with his chemo at the minute. He’s so very tired all the time and he’s struggling with school, but he keeps smiling as always. Aiden has been busy planning his 5th birthday, not till JULY but he’s planning it.

THANK YOU SO MUCH TO ALL HIS PALS, WE LOVE YOU ALL.

Update 10th April 2016

Aiden has done his first full week at school this month, Mummy cried of course, I’m so so proud of him. He’s in for a tough month next month, a lot of hospital stuff coming up! Please keep him in your prayers and thoughts. We love all Aiden’s post, Postpals you’re all awesome.

Update 4th March 2016

Aiden has had a good month, he’s managed to stay out of hospital for 3 weeks and he’s been to school. He is trying to catch up and at the moment he is learning the story of the little 3 pigs! If he’s feeling up to it, he will be a little pig in his class assembly just before Easter.
Just wanted to say thank you AGAIN for all your letters and cards and gifts Aiden, Amy and Jake all really love their post so THANK YOU, THANK YOU, THANK YOU.

Update 18th January 2016

Aiden is having a really horrible time at the minute, he’s been in hospital a lot over Christmas and New Year, with lots of infections. We did manage to get home for Christmas day which was awesome. We’d like to thank you for your continued support and love for our little man

Update 2nd December 2015

Aiden has had a really rubbish eight weeks, he has been in and out of hospital with lots of nasty infections. But he seems to be doing so much better now. All the cards and lovely gifts make his day when he gets them, we as a family can’t thank you guys enough. We are so proud of how our children are getting through this awful time in our lives, you guys make it a little bit easier, just to know there are people out there who care. Aiden’s cancerversary is coming up on the 6th December, it is a year since we got the life changing news that our little man had cancer. So really not looking forward to that day, but our boy is a super strong boy and we will get him through this with all his Post Pals help. Thank you from the bottom of our hearts! xxxx

Update 13th October 2015

Aiden has had a bad few weeks, he’s got an infection that he’s struggling to fight but he is still smiling. He is loving school, when he can be there, and he’s made lots of new friends. Aiden still has a long way to go before he finishes his cancer treatment, but he’s doing really well. Aiden has had three packages this month with some lovely toys and games in, he gets so excited when he gets some post, we can’t thank you guys enough. It’s Amy’s birthday on 13th October, so hopefully if Aiden is feeling okay, she wants to go bowling. We just want to thank everyone again for taking Aiden and his family into your hearts and prayers it means so much to us. Amy and Aiden have been to get their Halloween costumes today, they’re both going as skelibobles as Aiden calls them.

Update 6th September 2015

Aiden is doing really well at the moment. He’s back on full treatment again, having been taken off treatment when he had a bad infection. Some brilliant news is that his hair is starting to grow back!

Aiden starts school this week and he is excited (though nervous). As you can imagine, mummy is very nervous too!

We would like to thank all Post Pals for their post and gifts. You guys play a very big part in our family, helping us get through this tough journey and we love you all for that.

Update 6th August 2015

Aiden is in hospital as he’s caught an infection. Normally this infection wouldn’t bother a healthy child, but due to the chemo Aiden is on, his blood counts have been really down the past few days. He’s had a blood transfusion and a platelet transfusion so he’s feeling really unwell, but he’s still smiling.

Aiden has received quite a bit of post this month, as have Jake and Amy. It really does help knowing people are thinking about them at this difficult time and I said I would pass on their thanks.

Aiden also received his Dottie the Dalmatian. He has it with him in hospital and loves it, but we haven’t chosen a name yet.

Update 7th July 2015

Aiden is doing well at the moment, the doctors have upped his chemotherapy so he’s been really tired most days and he just snuggles up on the sofa and sleeps. He’s really excited about starting school in September though.

Aiden is enjoying his post and he really loves seeing the envelope with his name on it. We just want to thank everyone who has taken our family into their hearts and thoughts, as it really does make a difference to us.

Story written 2015

In October 2006 Holly went into our local hospital with an UTI infection and the last 9 years seem to have had the snowball effect, as Holly now finds herself not able to eat and TPN dependent. Holly has chronic intestinal pseudo obstruction and intestinal failure, amongst other issues, and there is no cure for the conditions she has, so we have to try give Holly the best quality of life and minimise her symptoms and pain. However, in doing this, it has meant Holly has had to undergo numerous trips to theatre, stays in hospital and invasive tests.

Holly has a Hickman line; this delivers the TPN straight to her heart. She’s attached to a pump which infuses all the nutrients and vitamins that she needs to grow over 14 hours a day. Holly’s digestive system is failing; she is unable to eat and is only allowed a couple of mouthful of dissolvable food a day. Any more and her digestive system will shut down and Holly will be in a lot of pain and discomfort. The Hickman line can cause serious life threatening line infections, any temperatures over 38.5 means Holly has to be admitted to our local hospital and IV antibiotics started as soon as possible. This is currently happening on a monthly basis.

Holly has a J-Peg feeding tube inserted into her stomach and small intestine. Holly’s stomach remains on drainage, this is to help with pain and to aspirate any fluids that may be sitting in her stomach and causing her reflux/nausea/sickness and pain. The jeg tube is there for me to administer the daily medication that Holly needs.

In 2011 Holly had a Mitrofanoff formed using her appendix, one end is attached to her bladder and the other end to her stomach, we pass a thin tube every two hours down this channel to empty Holly’s bladder. Her bladder has no nerve or muscle control at all. During the night due to the large volume of TPN being administered, Holly has a tube taped in place to keep the bladder empty. Holly has suffered with repeated monthly UTIs which has taken its toll on her kidneys. Her right kidney now only has 18% function left and this will be removed once we get to 15%.

In 2013 Holly had a ileostomy formed, this is where the end of the small intestines is brought to the stomach wall and it’s covered with a bag to collect all the waste products. Holly’s large intestine has failed completely and in the near future Holly will have surgery to have this removed.

Holly has very complex medical needs, she has had far too many hospital admissions, invasive procedures, and days where she just cannot get out of bed. Holly is currently struggling to make it in to school.

Update 15th February 2017

I have spoken to Holly, and as she turns 14 in March she is more than happy to move on from Post Pals and allow other children to be part of this amazing charity like she was.

We would like to thank everyone involved in Post Pals for all of the support and generosity that has been given to us whilst Holly was a Pal.

Update 3rd May 2016

Holly really has not been feeling very well after her last infections and the decision has been made to bring her colectomy forward to this coming Friday. She will be in hospital for some time while recovering.

Update 24th February 2016

Holly has had a tough few months battling infection after infection, sometimes only going 4 days between the end of Ivab treatment before starting the next course of Ivabs. Her team at GOSH will be holding a meeting this week to decide what the next steps are. Holly needs to either have a total Colectomy performed or another stoma formed. Both of these options mean Surgery and a lengthy stay in hospital for Holly. Hopefully by the end of this week we will be told which surgery Holly will be having.

Holly would like to thank Mathew and his mum for the lovely Yellow themed monthly project parcel that she received.

Update 28th January 2016

Holly had a tough month of December battling infection after infection, she needed to have almost continuous IVABs to keep these under control. We now have an appointment with Surgeons at GOSH next week regarding a Colectomy for Holly. They believe her Colon could be the cause of all the infections she is continuously having.

Early January after nearly a year of planning, Holly and  I travelled to San Francisco to meet some Doctors, in the hope that they may have different treatment options or help with a solid diagnosis for Holly.
This was our first time travelling since commencing TPN, it was a rather stressful trip and by no means a Holiday!!! But Holly thankfully remained infection free our few days there.

Holly fell in love with Chinatown there and the huge amount of POPs that they had!!

Update 5th July 2015

Holly was well enough to finally go and visit the pandas at Edinburgh Zoo this month, a trip that has been postponed for the last two years due to Holly’s health. She really enjoyed her visit and actually saw Yang Guang (the male panda) laying down in his enclosure. Unfortunately Tian Tian was feeling lazy on the day of the visit and didn’t come out to see us.

Holly has just started some home schooling (3 hours per week) and we are hoping that Holly may be strong enough to do a few more hours at the start of term in September.

Holly has been overwhelmed with the cards/letters and gifts that have been sent to her during her fist month on Post Pals and each and every one of them has put a smile on her face.

Story written 2015

Frankie-Rose was falling more then normal and had sustained a lot of bruising. Countless trips to the GP were made where we were advised she had growing pains and without an examination they determined she was flat footed. On our 6th visit to the GP, a locum noticed she had coordination problems and sent us for a scan. An MRI showed she had acute hydrocephalus on the brain.

Within 24 hours Frankie-Rose was moved to Kings College for a life saving operation where a mass was found. Within a week she underwent more surgery where a biopsy was taken and she was diagnosed with a grade 2 brain tumour. She underwent 10 weeks of chemo, lost 19 kg, her hair and her spirit, only to find it was detrimental and the tumour had tripled in size.

We were advised radiation was our only hope and the NHS offered us conventional (but organ damaging) photon therapy where the risk of second malignancies are high. We started a ‘go fund me’ page and a miracle took place. Within 5 days we had raised enough money to fly our family to Oklahoma so she could receive proton therapy at ProCure. It is a much safer way as it targets the tumour site only and does not damage surrounding good tissue. She finished her 30th treatment today. She got to ring the bell and will  attend a graduation ceremony on Wednesday.

My baby has the courage of a lion and I am very proud of her.

Update 3rd May 2016

Frankie-Rose and the boys have received some beautiful gifts and fantastic messages of support. A huge thanks for the love and support my children and I have received during a truly difficult time. Despite the awfulness we have wonderful memories. Frankie rose continues to improve, physically, mentally, academically and socially every day. She still has a fighting spirit and an infectious giggle. She loves music and dancing and will be spending her days performing xxxx thank you

Update 27th January 2016

Frankie-rose is making huge progress every day. She continues to dance and has just started swimming lessons. She is watching grease over over and is determined to be a pink lady when she grows up. She has taken a liking to tracy beaker. She still loves one direction and had the opportunity to meet them just before Christmas. She is back in school almost full time and her confidence is improving. Alfie continues to do well at school and has completed the cherub series thanks to the post pal who got him started. Freddie has just turned 7 and received some really lovely cards. Thanks to everyone at post pals for your continued support and efforts in making my 3 children feel so special.

Update 9th September 2015

Frankie-Rose is doing very well. She returned to school on Monday and after two half days, she begged to stay all day. Although extremely tired, she managed it and was very proud of herself. Tomorrow she will get involved in her first P.E. lesson in 12 months, so she is very excited.

Frankie-Rose has also started a course of physiotherapy and plans to return to dancing next week. She is lovely the hectic lifestyle after spending so long in hospital and is being (as usual) a real superstar.

The boys are loving the normality that comes with us all being home and have also enjoyed the return to school.

We went to the Isle of Wight last week and made the most of the beaches, with everyone making sand art from Alum Bay cliffs.

Thank you for the post the children have received.

Update 27th August 2015

We finally got home from hospital after 12 weeks on 3rd August and weirdly it was a year to the day she was diagnosed. After a LOT of unpacking and a fair bit of cleaning we have finally settled in.

We went to the Tower of London yesterday, we’ve been to the movies, bowling, park and swimming. We are going to the Isle of Wight on Monday so we have made up for the summer we missed out on.

Frankie-Rose turned 8 on the 15th August and due to Post Pals we were inundated with cards – they covered every surface of our home. Thank you! Fred recieved some lovely water related toys and Frankie got a full Hawaiian outfit which she plans to wear everywhere! She has received a lovely framed picture, jewellery, stickers, welcome home balloon, hand made cards, beautiful words and messages, and so much more. The pleasure she feels when the postman comes every day lights up the room. She has never felt sorry for herself, but receiving such positive messages fires her belief that she is truly special.

You made her birthday so much more fantastic and that in turn has warmed my heart. Thank you will never be enough, but from Frankie-Rose’s mum and dad, a huge massive THANK YOU and a big hug.

Update 9th July 2015

We are in hospital with Frankie-Rose and have been since 8th May.

Thank you so much for all our lovely post, receiving it makes it feel like Christmas.

**Please do not send Isla food items**

Story written 2015

Isla is yet to be diagnosed properly. Since the age of one, Isla has been unfeedable and is totally TPN dependant. TPN is artificial feeding through a main vein next to the heart through a central line. Isla has inflammation of her bowel which had left her unable to be fed. Isla has not responded to treatment for this. She also has a large bowel that doesn’t work properly so has an ileostomy.

Isla suffers from lots of infections due to bad bacteria and spends a lot of time in and out of hospital. Isla suffers from kidney problems which have started this year and again are yet to be diagnosed. She often gets urine infections as well as line infections which leave her very poorly.

We don’t have a long term plan for Isla as yet but we are hoping that doctors will be able to do this for her soon.

Update 3rd February 2024

Isla is an Ariana Grande and Taylor Swift fan. Isla likes hair and makeup, pandas and fluffy socks.

Health wise – she’s coping well, we have regular bouts of pain but is managed at home. Mobility wise she’s able to get around more now since her leg operation but she has a significant amount of falls so is a bit vulnerable. She has a 1:1 at school and is on a reduced timetable and is coping as well as she can do .

She is currently having antibiotics for another bug growing around her gastrostomy site. She needs regular IV iron infusions and vitamin D injections as she is still unable to manage her levels herself.

Update 25th March 2022

Isla has a few complications going on at that moment that is stopping her from going to school.

She has a kink In her ileostomy that is stopping her output, when she gets backed up she suffers pain and sickness, the frequency is increasing, she waiting for a stoma reconstruction.

She is also waiting for surgery (now at GOSH) for a double leg Achilles heel tendon surgery, once she has this operation she will be in a plaster cast for a minimum of 6 weeks in both legs. This is so tough but hopefully, the surgery will improve her mobility.

Isla has finally been referred to haematology for her neutropenia, she is having some genetic blood investigations in the next few weeks.

Update 21st June 2021

Isla is still pretty Plateau with her health as she is still unable to go to school. She is waiting for her legs to be put into plaster casts due to the muscles in her legs have got to tight and she is unable to walk flat- footed 

Isla also continues to have an on going Candida infection in her stomach and around her gastrostomy device, she is back on treatment and due to have a new device inserted under GA this month. 

Update 20th August 2020

Isla has been doing better since having her large bowel removed in March 2019. She still suffers from daily pain, still has ongoing issues with her kidneys (nephrocalcinosis) this causes a lot of pain. 

But she’s so much happier then she was. She doesn’t have to spend so much time in hospital. Although she is still TPN dependant she is thriving. We manage the bad days well and enjoy her good days.

Update 20th April 2020

Isla is having a few issues with an ongoing bacteria overgrowth, she is waiting an admission to GOSH but due to the current covid-19 it’s too unsafe. She will be having a brand new gastrostomy new device fitted and IV  treatment.  

Update 28th November 2019

Isla is doing relatively well, she is managing half days at school but it has highlighted how bad her mobility is so the school have referred her to occupational therapy to see if they can help. She is still on treatment for the ongoing Candida infection around her gastrostomy, even after a new tube was placed it hasn’t shifted. She is also having flair ups of bladder pain so she will be reviewed by her urology team soon to see if they can help. Considering how poorly Isla was this time last year she is doing amazingly well. She’s loving school and she’s enjoying doing all this things she has up to now missed out on. Hopefully this will continue 

Update 10th August 2019

Since Isla’s surgery in March she has been doing really well. She is spending more time out of bed, she has more energy and she is a lot happier. We’ve been on holiday and she’s even going to start integrating back into school in September. Isla being more active has highlighted how poor her mobility is, her legs give way a lot and she can’t walk very far anymore. The school highlighted this and will be doing necessary referrals. Isla also is struggling to shift a Candida infection on her gastrostomy site, it’s an ongoing problem and one we never get on top of. She is listed for a new peg site which hopefully will help.She is due to go into GOSH in the next few months for some tests on her small bowel. We now know Isla has a myopathic nerve disease in her bowel. Her large bowel that was removed in March was sent off to histology and was discovered that too had the same problem, along with diversion colitis. 

Update 21st March 2019

Isla has just got home from 2 weeks in Great Ormond Street Hospital after having big surgery to remove her large bowel. She will continue her recovery at home. We are having issues with her larger wound that won’t heal and is weeping and bleeding still. She is also getting awful intermittent cramps in her lower abdomen. 

Update 14th February 2019

 Isla’s recent biopsy results showed pancolitis which means her entire large bowel is inflamed. There is also active inflammation in her small bowel, and ulcers on her oesophagus and stomach. She has been on high dose steroids since Christmas and is responding well. She’s just feeling a little bit down because they have made her put on weight and she doesn’t like the moon shape face they give her. 

Isla is booked into have surgery at GOSH in early March to remove her large bowel. 

Update 1st November 2018

 Isla has been on a roller-coaster regarding her health. She recently has a serious line sepsis that involved the paediatric cats team being called out to her twice. She is still suffering with pain and lethargy. She is now under 5 teams at gosh as she has reoccurring urine infections and a low score bone mineral density. We don’t really have a plan at the moment for how to move forward health wise, we just take each day as it comes. 

Update 25th February 2018

Isla has had a really tough few months. She has an ongoing Candida infection that she needs to keep having IV antifungals for. Isla’s recent admission to GOSH for scopes revealed severe inflammation of her large bowel and after the procedure haemorrhaged and lost a lot of blood. Plans are being made to admit her for surgery and have a total colectomy.

Endocrine tests revealed an hormone deficiency so further tests are being planned to investigate further.

She’s been spending more and more time in bed, feeling unwell and pain levels increasing. It’s really hard to motivate her to do the things she once loved despite us trying so hard.

Update 3rd October 2017

Isla has been struggling with an ongoing line site and gastrostomy infection and has been on iv antibiotics for over a month. Unfortunately it’s been decided that she will need to lose this Hickman line and a new one will be inserted. Isla also has a weeks admission middle of October with the endocrine team at GOSH.

Update 21st August 2017

Islas still having a tough time with pain, hypoglycaemia episodes. She has a few admissions coming up to try and get her sorted. Surgeon’s appointment is also coming up to discuss the procedure of removing her colon. Still waiting  for a plan for management of the deterioration of her liver

Update 5th June 2017

Isla’s had a yo-yo few months, she has been fighting an ongoing pseudomonas infection of her line site which once treated with IVABS comes back within weeks. She has been fitted for splints for her legs as unfortunately her mobility has deteriorated so will need the splints to help with the muscles of her legs. She was referred to Kings College hospital from GOSH for her liver, as the bloods show increase in liver function is really abnormal now and needs to be managed by a specialist. Her appointment at Kings went well, lots of bloods taken and just today received further bad news, that the bloods have doubled so she will need to be admitted to GOSH for a liver biopsy. Her manometry results show that her colon has completely failed and it has been decided that this year Isla will need surgery to have it removed.

Update 2nd March 2017

Isla’s not had a great month. News from GOSH was that her colon has stopped working completely. We have a date to meet jointly with her motility & surgeon to discuss surgery to have the large bowel removed.

She’s also been down on her health. She has grown a bug around her line site and is on iv antibiotics, but we are struggling to clear it. It has also been revealed that’s Isla’s liver function has  trebled what it should be. Despite all this she is still happy & smiling just a bit more tired and sensitive and needing lots of mummy time.

Update 4th January 2017

Isla has had a really good month health wise. She hasn’t needed any hospital admissions and we have managed her at home. She’s due to go to GOSH in February to get the results of all the gruesome tests she had done in October/November. She’s had to have her immune suppression medication increased due to increased inflammation in her small bowel and the levels showing low in her bloods, although this hasn’t stopped her from enjoying her Christmas.

Update 4th November 2016

Isla has had a really rough October and the majority of it has been spent in hospital. She was admitted for a planned stay at GOSH for an ADM manometry and unfortunately that took a while to recover from. We were home a few days and then she was taken into our local hospital with a high temperature which ended up being because of her diversion colitis. She was needing IV fluids as her stoma output was so high. We then got transferred to GOSH again, who did emergency scopes and a clonic manometry. Unfortunately, Isla suffered too much pain with the manometry and it had to be a stopped, with fears they had perforated her bowel, due to a pocket of air seen on her x-ray (luckily it wasn’t). The pain she experienced was so traumatic that even the consultants gave her cuddles and had tears in their eyes.

Discovery from her colonoscopy has shown Isla has a stricture (a narrowing) in her colon, so we are currently waiting another admission to plan what they are going to do with this and also make a decision on whether she will need the big surgery to remove her colon.

All Isla’s medications have been upped as bloods show she isn’t absorbing as well as she should, one of these meds is her immunosuppressives so we are expecting a few more blips with her health over the near future.

Update 13th September 2016

Isla has had a busy month, she was due for her admission to GOSH, but unfortunately due to her inflammation flair up it has been delayed. Instead Isla will be admitted in October for scopes, and a repeat bowel manometry tests under the guidance of the motility team.

Update 7th August 2016

Isla has had a rocky month. She’s suffering from diversion colitis and a gastrostomy infection that won’t shift. Her inflammation markers are sky high, but until her admission in September, unfortunately she just has to ride it out until then. Isla’s on all the correct medication, immunosuppressives and has done a course of steroids, but unfortunately it doesn’t look like she’s absorbing. Tomorrow IV antibiotics are being started and hopefully we’ll get some stability back. She’s coping well and we are distracting her the best we can.

Update 7th July 2016

Isla has had a great month. She’s still got ongoing diversion colitis, but she is handling it really well. Had her admission date for GOSH, which is September, if she doesn’t fall too poorly before then.

Update 2nd June 2016

Isla has remained out of hospital, but remains in a vicious cycle of bacteria overgrowth and inflammation/ulceration. She’s finding it difficult to keep her strength up again, and slowly slipping back into sleeping most of the day. She’s been retching and being sick due to her reflux and generally not her happy self.

GOSH has kept to their agreement of letting her be at home for 3 months without any hospital admissions, but the end of the 3 months is fast approaching.

Update 5th April 2016

Isla has generally been quite well. She’s had her new Hickman line inserted and some other tests for her yearly TPN MOT. She’s being treated for bacterial overgrowth and is now on an antibiotic and probiotic cycle, hopefully this will improve some of the horrible symptoms she’s been having.

Update 14th March 2016

Isla has had a pretty stable month. Scopes were finally done. This shows that the colon is still inflamed and also her tummy is still inflamed and ulcerated. The motility team want Isla admitted to GOSH again, under their guidance, to try and get things stable for home life and for some investigations (another lengthy stay)

Update 6th February 2016

Isla spent the first part of this year in hospital with viral pneumonia and a line infection. She has grown some very rare bugs and they took their time to shift, but we got there eventually.

Isla just managed to be well enough to have her scopes done, which we needed to beable to progress on with a plan for the rest of the year. She’s very up and down in health and we literally take it day by day. She will be admitted to GOSH again soon for repeat investigations and possibly big surgery to remove her colon.

Update 3rd January 2016

Isla is currently in hospital and has been since the 29th December, she is very poorly again and are waiting to transfer her over to GOSH. She has been suffering with high temperatures for the whole time she’s been in hospital and the team are trying their hardest to keep her out of PICU, till GOSH can take over her care, when a bed becomes available.

Update 2nd December 2015

Isla has still had an up and down month. The candida infection has left her very frail and weak. She’s been assessed for a wheelchair and one has been specially made for her to carry all her medical equipment for her, as she just doesn’t have the energy to do this anymore (she’s very happy as it’s pink!!) She  currently is fighting off a virus and because of this has had to have her procedures at GOSH cancelled, as she isn’t well enough to go under general anaesthetic. We are hoping to spend her first Christmas at home this year!

Update 2nd November 2015

Isla has spent the whole of October in hospital, she got really sick with a candida infection and was transferred to GOSH PICU. The infection has hit her body really hard, she’s having a tough time building herself up. She’s been left very weak, pale and lethargic. She’s very frail and spends her time drifting in and out of sleep, and although we were discharged last week finally, she’s still having IVABs and lots of pain IVs to help her through this tough time.

Update 13th October 2015

Isla is currently very sick in GOSH with line sepsis. She was taken into PICU and is still struggling to make a recovery. We are yet to see any progress from her so really not in a good place at the moment.

Update 7th September 2015

Isla’s had a bad month again. She had to have surgery to correct her stoma prolapse issues, after we unfortunately had another blue light ambulance to GOSH, where it had prolapsed and was stuck out. She’s been incredibly brave and is still managing to smile despite all that keeps getting thrown her way.

Update 4th August 2015

Isla has had a really tough month. Her stoma prolapsed and she had to be rushed to Great Ormand Street for emergency surgery for reduction. This left her really uncomfortable and needing morphine to help with her pain. She is now home again but is still having prolapse problems, so we’re awaiting another surgery date to fix this.

Isla is still on her steroid treatment for inflammation of her colon and small bowel, but this is making her moods change rapidly and unfortunately making her quite unhappy a lot of the time.

Update 4th July 2015

Isla is still very poorly and she was admitted to GOSH for the emergency scopes. This revealed Isla has chronic inflammation that needs to be treated with steroids and more immune suppressive meds. She has a 10 week plan then scopes will be repeated.

Update 30th May 2015

Isla hasn’t been too well lately, she has an ulcerated stoma and it’s causing her lots of pain and discomfort. We were told she will be admitted to GOSH in July for a 4 week stay for some tests and to try and get on top of her pain. She also has to have some emergency scopes to check she isn’t inflamed inside.

Story written 2015

Alfie was diagnosed with Acute Lymphoblastic Leukaemia shortly before his second birthday. It was utterly unexpected as he had very few symptoms; I took him to the doctors in the morning thinking he may have a virus, and a few hours later, we were told it was 99% likely Alfie had ALL. We were taken straight to Great Ormond Street Hospital, where we spent 10 days starting Alfie’s chemotherapy treatment before being allowed back home. We had entered what felt like a completely new and frightening world where nothing would be the same again.

The treatment for ALL in boys is 3.5 years, with chemotherapy being given daily, alongside various other medicines (our kitchen is like a chemist!). Alfie had a port-a-cath inserted shortly after his diagnosis, through which he receives IV chemotherapy, and from which his bloods are checked every week. We go to Great Ormond Street Hospital every three months, when Alfie has chemotherapy given directly into his spine under general anaesthetic. Very sweetly, Alfie quite enjoys the feeling of being put to sleep – the doctors always laugh when he nods off smiling! – although finds not eating and drinking beforehand rather tricky!

The hardest part of Alfie’s journey has been the side-effects of the treatment, which are feeling very lethargic, sometimes quite sick, a little agitated and tearful (particularly due to the steroids). The other main day-to-day difficulty Alfie has to deal with is having his port-a-cath accessed with the needle. Although he assures us it does not hurt, he finds it very stressful, especially being held still when he wants to be doing his own thing (like any other 4 year old!).

We spend quite a bit of time in hospital due to infections, and this is also quite hard on Alfie as he misses out on a lot of things, like friend’s parties and nursery, and finds it quite boring and tiring. Despite the numerous ways in which Alfie’s life has changed due to his illness, he has blossomed into the most lovely, caring little boy. He tries so hard to please everybody by being brave and helping the doctors when they are examining him, even though he finds many of the processes traumatic. He has learnt to count down from 5 before his port-a-cath is accessed, which has helped him regain some control over the procedure. He is so willing to try. I am so proud of him.

The opportunity to be part of Post Pals would be incredibly rewarding for Alfie. To know that we are part of a bigger community of people that are being so kind makes us feel like there’s a network of support around us. We are so grateful for the chance.

Update 11th January 2016

Thank you for your message and Happy New Year! Alfie had such a wonderful Christmas despite quite a bit of time in hospital. The letters, cards and gifts sent by Post Pals made such a huge difference. It is such a special charity!! Alfie finished his treatment for ALL on Friday, which is very exciting (and slightly nerve-wracking!) time for our family. For this reason, we could like to be moved to the ‘moved on’ page please.

Wishing you all the best. My heartfelt thanks go out to you – I have tears in my eyes as I write this. I cannot overestimate the different Post Pals has made to our lives. It’s made us feel like we are not fighting this alone.

Update 5th December 2015

We had a short spell in hospital in November as Alfie developed a high temperature, which thankfully came down after being on mega-strength IV antibiotics. He and his little brother found being admitted to hospital harder this time round, probably because they both are understanding more and therefore questioning more as they get older. Alfie was so frustrated and fed up at times. I used the Post Pals post to cheer him up, and it worked no end. It was reassuring to me to have it saved up in my bag to pull out when things went downhill. It’s so lovely hearing from new people, as well as the kind people who have written to us over the past year or so. Thank you to everyone xxx

Update 13th October 2015

Alfie started school in September, so it’s been an month of new and exciting changes. He’s settled in really well so far, despite being very tired and picking up a viral bug in the first few days (unavoidable I think with 450 kids in one place!). The monthly dose of steroids continue to be one of our hardest obstacles; they really make Alf feel so rotten. The post we receive from Post Pals helps enormously during this time particularly as it provides such a brilliant distraction. It’s so lovely hearing from new friends from all round the world, as well as those kind people who have written to us repeatedly over the months. To know you are thinking about us helps hugely, and Alfie benefits enormously. We have received cards and packages for Alfie’s birthday which has been the source of much excitement! I feel like I repeat myself every month, but thank you so much to everyone involved in this. It’s so special

Update 14th August 2015

Alfie is due to finish his treatment for ALL in January 2016, which is exciting and nerve-racking. We all felt like it would get easier as we edged towards the end, as finally, after three years, the end is in sight. Strangely it is actually feeling harder – Alfie is so fed up of having his bloods done and can’t bear to be in hospital. His tolerance to the chemotherapy has increased as time has gone on, which is a good thing in a way, but means that the dosages keep going up and up. This has had an impact on Alfie in terms of the side effects of medication. He is more lethargic, has a permanent rash on his face and most of his body, and has lost his appetite. We have been very lucky however and haven’t had to have a lengthy stay in hospital for almost 5 months – truly such a blessing.

Thank you to everyone who has written to us in the past month! The letters, cards and packages provide such a wonderful distraction for Alfie when he is distressed or fed up. Every single one has enhanced his – and my – feeling of wellbeing. Thank you all!

Update 8th July 2015

We have been so touched by the emails, letters and parcels we have received. I am so sorry we have not replied to anyone, I wish I could write to you all individually to let you know how much your pure kindness means to us. Please know that you have made such a meaningful difference to our lives.

Update 31st May 2015

Thank you so much to Wendy for the lovely and incredibly thoughtful package she sent Alfie. The balloons are hanging in his room – Alfie couldn’t believe you even sent the ribbon in his favourite colours! We are going to hospital for IV chemo next week, so we are saving the superhero sticker book for while we are there. It’s always quite a stressful day, so the book will be a brilliant distraction, and provide a perfect treat for afterwards. Thank you so much. Thank you also to Skye, who emailed us all the way from Australia. Your words were so kind and I will remember them and think of you when we are feeling low.

Story written 2015

Jakub was diagnosed with long segment Hirschprung disease when he was four days old. For five years he was on total parenteral nutrition as he didn’t absorb any food and due to that he was listed for a multi organ transplant.

In September 2014 Jakub had his transplant and everything went well. Unfortunately, two days after discharge from hospital, he started rejecting all organs. Since 10th October 2014 he has been at King’s College Hospital. After very strong drugs, Jakub’s rejection was under control and we thought he was getting better, but in January he became unwell again.

After lots of tests, Jakub had to go to theatre for another surgery as he had an obstructed bowel. The transplant surgeon said to us that Jakub’s bowel didn’t look good and that it looked like one big cocoon. Due to the obstruction some of the bowel had to be removed and it was sent for tests. When the results came back we were told that Jakub has cancer in his new bowel.

Jakub started chemotherapy in January 2015 and it has now finished after just four doses. Jakub also spent a long time in intensive care after his last surgery. After all the post transplant complications, we know that it is impossible for these organs to work again, and so Jakub is re-listed for another multi-organ transplant of five organs (small bowel, large bowel, liver, stomach and pancreas).

Jakub is now on total parenteral nutrition again and all of his medicines are given intravenously. As Jakub has been in hospital for a very long time, he has lost his mobility. He’s desperate to be able to walk and run around again like he did before transplant.

At the moment Jakub remains stable and as well as he could be. It’s still a very long way to go but we don’t lose our hope.

Update 6th November 2016

We are very sad to say Jakub passed away peacefully last night. Thank you to everyone who has sent him post or fundraised for our Chessington trip. His last weekend out of hospital was spent at Chessington, going on rides, laughing and even eating pasta!

Update 9th October 2016

We’re still at King’s and Jakub has been on the intensive care unit since Monday afternoon.

After all the investigations and tests he’s had done we finally got the results. Now it’s black and white, Jakub was diagnosed with GVHD. A lot of things happened since this diagnosis. It all started with a rash and then he was struggling to keep up his haemoglobin and needed a blood transfusion every day. We stayed all that time on High dependency unit as nothing was getting any better. His skin was getting worse everyday, all of his blood results were bad. Dr’s made the decision to start rutuximab, ganciclovir, many antibiotics, high doses of steroids and also photopheresis. To start photopheresis Jakub needed a new line. So far he only had ECP (photopheresis) for two days. Again everything was awful and the pain was just too much for my little boy to deal with. Every touch was so painful. That’s why at the moment Jakub is on PICU. Unfortunately this week his blood results are not good and he’s so neutropenic and his white cell count is very very low so he couldn’t have photopheresis this weekend. On Monday he’ll be having stem cells. Jakub’s eyes are also affected by GVHD. His skin is still really bad… At the moment there isn’t any chance to extubate him as it’s just too much.

Only one positive thing in all of this is that Jakub’s haemoglobin is holding nicely. As always we would like to thank you everyone who is helping us. Every message, every prayer, positive thoughts means a lot and helps us to get through it.

We would love to thank everyone who sends Jakub post, cards, letters, parcels and everyone who remembers about him in their prayers. He really needs it now.

Update 27th September 2016

Jakub has again spent most of the year in hospital.

Earlier in the year Jakub had some good times and was able to be at home, but in early June he had to be readmitted to PICU and placed on a vent due to PCP. While recovering from PCP he developed severe skin problems and light sensitivity which was put down to a drug reaction. He was discharged at the end of August, just in time for the Post Pals Chessington weekend. Jakub had a fantastic weekend but a few days later was back in PICU as his HB fell to only 2. He is now in HDU and his skin is getting worse, it’s completely blistered, very painful and itchy. It has been confirmed he has Graft-vs-host disease, as steroids haven’t worked they tried to start him on photopheresis treatment (a little like dialysis, the machine takes the blood out, treats it with UV and returns it to the body) but his line was too small. Jakub will have surgery for a new line and start the treatment. He will be in hospital (HDU) for a long time again.

A big thank you to everyone who has sent Jakub post and made him smile.

Update 10th December 2015

Jakub was discharged from King’s at the beginning of November. We have mostly been able to stay at home, although we have had lots of hospital visits. Jakub is such a strong little boy and he has been through so much. After his second transplant, he had a few complications as he had a leak in his stomach, but it healed on its own. He had two bouts of rejection and he needed high doses of steroids for it, luckily he responded well to the treatment. He had a Hickman line infection and then the line was broken, which meant he needed surgery to replace it. Jakub had a CT scan with  a contrast injection through a cannula, the contrast leaked and it resulted in a very bad injury on his arm.

Jakub’s EBV was again very high (this could cause the cancer to return) so the doctors decided to start Rituximab. When we thought we would finally be able to go home, Jakub had a very bad chest infection and ended up with a chest drain. He could not tolerate much milk through his NG tube and was on PN, but once all fluids from his chest drained, he made very good progress with milk.

At home he made an even bigger progress with a milk feed and Jakub doesn’t need PN anymore; this is such a big thing for me. Jakub still needs IV fluids, but hopefully soon we can stop them. We had to go over to King’s for infusions, but just for a few hours and then we returned back home. We also had to go over to our local hospital for IV correction of magnesium a few times. Jakub had a cold, but this time round just oral antibiotics helped, and we didn’t have to stay in hospital.

All I can say is it’s the best thing ever for Jakub to be at home, as he’s making really big progress with his walking, and we have our boy back. Same cheeky, smiley, and happy Jakub.

As always we would like to say a very big thank you to everyone who is supporting us and Jakub, as it means a lot to us. We also want to thank you to everyone who sent Jakub birthday wishes, presents and cards.

Unfortunately as usual Jakub spent his birthday in hospital, but let’s hope this Christmas we can stay at home for the first time ever since Jakub was born.

Update 7th September 2015

Jakub has been doing very well following his transplant. Within a week he was in HDU and then moved to the main ward. The pictures of the organs taken out were shocking and so far these new organs have been doing well. Following a line infection the scopes however have shown mild rejection in his bowel. He is managing to eat small amounts and tolerate 5mls an hour feed, as well as using his walking frame a little.

Update 13th August 2015

Jakub got his call! He is currently in theatre receiving another 5 organs, he was very happy to get his call and laughed all the way to theatre!

Update 7th May 2015

We’re still on Rays of Sunshine ward and we’ll stay here for bit longer I think. The doctors mentioned home about a month ago but we didn’t go anywhere, as Jakub started spiking temperatures again. We have also had a few problems with our local hospital. They said that they want us to go there as they want to see Jakub, but we disagree with their plans. This is because we’re too scared to take Jakub there whilst he’s well enough to be discharged home in case he’ll catch something, as unfortunately kids like him are in high risk of catching infections and we really don’t want to be stuck in another hospital.

Jakub’s bloods results are still not great but we know that they won’t be good until he’s had another transplant. His chemotherapy is finished and haematology consultant is happy with Jakub’s results.

Jakub is so happy as we’re going out every day just to give him a little bit of break from hospital. He started to stand up for a very short time but it’s a huge step for him and he’s desperate to be able to walk again.

As we’re going out every day, we have our little routine, and every day we’re going to the hospital post room to check if there are any parcels or letters for Jakub! He absolutely loves it! He has the biggest smile ever if there’s something for him! We would love to say a big thank you to Post Pals and Share A Star as it really makes a huge difference! We’ll never forget about the help and support we get from you and everyone around the whole world who thinks about us. THANK YOU SO MUCH!

We meet lovely people in hospital who have been here for a long time, like us. Unfortunately April wasn’t a good month in this hospital, as two beautiful kids who spent a long time in here passed away. It’s so hard to be here for so long and we just hope that we can go home soon.

Update 30th March 2015

After 40 days on PICU and 37 days on HDU we finally been moved to Rays of Sunshine ward! Jakub is so happy to be back here and so am I! He’s still on a lot of medicines for his blood pressure, antibiotics and painkillers. We’ve been told that he may have influenza and that can be the reason why he’s spiking temperatures every day. Let’s hope it will only get better now and we don’t need to go back to PICU and HDU for the third time during our stay in here.

Update 7th March 2015

After a long 40 days in the intensive care unit Jakub is extubated and today we are moving to HDU. He’s still very sleepy and has a few issues with his high blood pressure. He still has 4 more doses of chemo to go but it’s lovely to have my little boy back and hear him talking about so many different things when he’s awake!! I’m so happy and pleased!!

Update 14th February 2015

Jakub is still in intensive care. He’s still on filter for his kidneys, still on a vent. He had a few more tests done – CT scan, bone marrow aspirate, etc. Some of them looked good, some of them not good. He’ll stay as he is for another good couple of days.

Last Saturday they had to start chemotherapy as his liver started to play up and his bowel isn’t in good condition. We’re still waiting for more results from histopathology and hopefully next week we’ll have more information. Last x-ray showed that his lung is collapsed so he can’t come off the vent. Once he has finished 6 doses of chemo he’ll need stronger chemotherapy in Great Ormond Street.

Jakub has now became resistant to most of the sedation drugs so he wakes up and all he wants to do is pull all his lines and tubes. It’s not good for the nurses but that’s my boy! I know we have a long journey to go but we can do it!

A massive thank you for all the cards and parcels from all around the world for Jakub!! I can’t wait to see Jakub’s big smile when he sees them!

Story written 2015

Emma was daignosed in 2011 with Fanconi anemia, a life limiting blood disorder. This causes bone marrow failure and a higher chance of head and neck cancers.

Emma will undergo a transplant in spring 2015. Her dad will be the donor as we have been unable to find a matching donor. Her brother was tested but also has the condition. Emma is often tired and weak and she has regular blood and platelet transfusions.

Update 24th July 2015

We have decided that it is time for us to focus on the coming weeks and thought it was best that Emma move on from Post Pals.

We would like to thank all the wonderful people who have made both my children grin and play with the letters and tokens sent by post.

Whilst we have a challenge ahead of us as Emma is admitted for her BMT, we have decided to focus on giving rather than receiving and thought another child in need could benefit from her moving on.

We have made a decision and commitment to write to a different Pal each week hoping to make many more smiles.

Post Pals is amazing and I feel very fortunate that Emma found you when we did.

Update 2nd June 2015

Emma goes into hospital for her bone marrow transplant at the end of July and we have been told this will be for 6-8 weeks. We have a box with all the post we have so far recieved that I am planning to take with us so that we always have something to read each day.

Thank you for everything you do, it is very much appreciated.

Update 1st May 2015

Emma had her hickman line inserted as she now requies transfusions weekly. Her transplant is planned for June. We still need to find an unrelated matching donor.

Thank you for all her birthday cards and gifts.

Story written 2015

Sophie woke up on her last day of school with a very bad pain in her chest. She wasn’t able to breathe properly and couldn’t walk very well. We ended up going to our local hospital and they said it was gastroenteritis, but a nurse suddenly wanted to do tests when her sats dropped a lot. The tests later came back saying that Sophie had acute kidney failure and the gene of pancreatitis.

Sophie was in intensive care for nearly 3 weeks on a ventilator fighting for her life. In the end, Sophie fought for her own life and came round and started to hallucinate for days with all the drugs she had been on. Months later we found out that she would have to receive dialysis 3 days a week.

Update 14th June 2016

Sophie is currently revising for her exams that she missed at school because she was taken ill, she has been very stressed over the past 2 weeks because of this. As Sophie turns 18 in August she is moving to her local adult hospital and is having a appointment with her consultant there very soon.

Update 29th January 2016

Sophie went to see the kidney man at the Royal Liverpool for a chat and spoke about transplant, about what the risks were and what medication she would be on.

Update 3rd January 2016

Sophie has been feeling under the weather these past few days with her stomach. Hopefully it isn’t anything serious! She should be having an ultrasound within the next few days.

Update 5th December 2015

Sophie has been quite stable over the past few months! Treatment is going well and she is looking forward to Christmas!

Update 13th August 2015

Sophie was supposed to be having a peg fitted so that she can feed through the stomach instead of having a tube through her nose. However, the stomach pain she’s had shows that the vessels in her liver are expanding. As a result, Sophie is not able to have a tube in to her stomach, as there would be a risk of her bleeding in to the stomach and attacking the vessels.

Update 24th July 2015

Since Sophie had her gallbladder out she has gone down hill. She is being sick once a week which isn’t normal and is having regular ultrasounds. These past two week’s Sophie has been in chronic pain with her back and stomach and is taking regular paracetamol which seems to ease the pain slightly. She had an ultrasound which showed that her liver blood vessels are enlarged and if she is sick with blood she needs rushing into our local A&E.

Update May 2015

Sophie was admitted into her local hospital with pains in her stomach and was put on IV painkillers (paracetamol and morphine). She had to stay over night and was transferred back to Alder Hey in the early hours of the morning. She had a CT scan to show that she has gallstones!

Due to Sophie having pancreas problems and the fact she is now 16, we had to go to the Royal Liverpool for surgery to get her gallbadder and gallstones removed. Luckily, Sophie was only in hospital for a night and her recovery was brilliant!