Holly P

24 May 2015

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.

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Frankie-Rose L

21 May 2015

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.

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Isla J

20 May 2015

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 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 new one will be inserted. Isla also has a weeks admission middle of October with the endocrine 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. Surgeons appointment is also coming up to discuss the procedure of removing her colon. Still waiting 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.

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Alfie K

19 May 2015

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.

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