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 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 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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Jack T.S

20 May 2015

Story written 2015

Jack is 9 years old and has cystic fibrosis, an inherited life threatening condition. He was diagnosed at birth and required his first ever operation at just 22 hours old. He had meconium illeus which resulted in a part of his bowel being removed.

Since his diagnosis Jack has been in and out of hospital numerous times, often for long periods, and has had several operations. As a result of his cystic fibrosis, at the age of 2 years he was diagnosed with liver disease. Jack has suffered from numerous complications from cystic fibrosis and recently had surgery to stop him from being able to vomit. Previously he would vomit daily, resulting in weight loss and damage to his fragile lungs. Jack takes in excess of 60 tablets a day and also has daily physiotherapy on his lungs.

Despite all the things he goes through (invasive and time consuming treatments) Jack very rarely lets it get to him. He is a happy and active little boy who is always smiling.

Update 4th January 2017

We’d like to thank every single person who took the time to send us a Christmas card, there were so many! Thank you also to the boys’ Elves and other people who sent Christmas gifts. We are in the process of doing personal thank you’s but it’s taking longer than I’d like due to health problems. They are all very much appreciated and brought lots of smiles to our house.

Jack has a really long day ahead of him on Monday. We will travel the 100 mile round trip to see his team where his annual review will take place. This is really important. It takes the majority of the day to complete and can be a drag. On the same day he also has to dash to meet with the immunology team for the first time. I’m quite interested to see what they have to say.

Jack has been really struggling emotionally with his condition lately. We found that he had been chucking his medication and generally avoiding doing any treatments or doing very little. This has happened on and off for the last few years now. I’m worried that he’s going to undo all the hard work that has kept him well recently. No doubt the team psychologist will pop in on our visit.

Update 6th November 2016

Thank you to everyone who was kind enough to send post to Jack (and Luke). I want to apologise for my lack of thanks and acknowledgements these past few months. We’ve had a difficult time at home as daddy has been away again and mummy was also in hospital for a while, so online activity has been low.

Jack has had a good month, no need for any new medical intervention and he doesn’t need to go to clinic until next week – he’s managed a good 6 weeks away from hospital, which is great!

He has recently started up with his chest, but given that his brother has had a horrible cough/cold lasting a few weeks, it’s hardly surprising that Jack has picked this up. I’m hoping that he will be able to fight this on his own but we are back at clinic soon anyway, so can get help then if it looks like he’s struggling.

Jack is still waiting for his immunology appointment, which seems to be taking a lot longer than I had hoped – something to chase up next week.

All in all though a very positive month. Fingers tightly crossed now to get us through these winter months!

Update 2nd October 2016

Jack has gone back by about 5 years in terms of how he deals with needles. He had got to be so good at it, to the point that he would just sit there relaxed and tell the nurse to just do it when they were ready. For the last 3-4 visits though he seems to have regressed, each time getting worse.

Jack has been extremely lethargic over the last 3-4 weeks which is really really unlike him. He gets wiped after rugby and even after being out with his friends for any period of time will end up with him coming back shortly after and declaring that he is’shattered’. He will then go get changed into his pyjamas and get in his bed. Also anyone that knows Jack, knows that he is such an early riser – 5am early. Recently though, I have been having to wake him later to make sure I can get him to school on time. School too seems to tire him!

Jack has also been a bit weird chest-wise. He has been starting up with a chesty cough which gets to the point I think right, I need to ring his team, only for it to disappear again. It then restarts up a few days later?! Really bizarre and something we’ve not experienced before.

His team have taken bloods to try and find the cause for Jack’s lethargy and in the meantime have added in yet another medication to ‘cover him’ in the event it turns out to be a different bug/bacteria.

We are still waiting for Jack’s immunology appointment to come through and obviously the results of the tests from yesterday.

Thank you all for your continued support

Update 6th September 2016

We have just come back from holiday, it did Jack the world of good! He has just entered into his last year of primary school – year 6!
Jack has had quite a good month, we are still awaiting the antibody transfusion and clinic and hopefully this will happen before winter comes round. Always a bad time of year. Fingers crossed.

Update 8th August 2016

Jack recently completed a two week course of IV therapy for his current infections and lung function decrease. He is still growing the pesky micro-bacterium! Nineteen long months of a rigorous regime of treatment and counting – yet is still persists! At the end of his IVs Jack’s lung function had increased quite a lot, which was great!
We learned that Jack also has an immune deficiency problem. Boo! Not a complete surprise as this was the third time that they had repeated the relevant tests and each time they have all come back too low. He will have to have all his vaccinations repeated after his IVs as they haven’t taken at all and he’s at risk from pneumococcal etc, etc. He has now been referred to an immunologist to be seen in their clinic, where they will likely give him regular boost infusions of immunoglobulins through his port. The consultant said this possibly will help in his fight against micro-bacterium too. Fingers crossed!!

Update 12th July 2016

Just to let you know that Jack started his IV therapy today. He’s not feeling very good at all – his drug combination is very powerful and makes him quite ill. We have opted to try and do them at home and hope that Jack remains well enough to complete the 2 weeks with us rather than the alternative of spending it in hospital 🙁 We also learned today that Jack has an immune deficiency and therefore now has another new team of people alongside all the others, the immunologist. Daddy is away with the army so we are all having a bit of a rough time.

Update 7th July 2016

Jack is having a bad time with his lungs at the moment and will be starting a two week course of intravenous therapy from next week. His dad is away with work and has been for a number of weeks, so it’s a very challenging time for the family at the moment.

Update 2nd June 2016

Jack is doing well at the moment and his lung function remains high.

Update 6th May 2016

Jack has clinic again on Monday. He is having some tummy issues at the moment, which we will hopefully be able to better manage after clinic next week, but is otherwise still doing reasonably well.

Update 2nd April 2016

Jack is doing really well. His lung function is up and stable and he’s playing lots of rugby. He’s had a lovely Easter and is enjoying the break from school and hospital.

We are awaiting results from CT Scan and Dexa Bone Scans but anticipate that these will be ok.

Update 3rd March 2016

Jack has had a really positive month. After a two week course of some pretty intense and nasty IVs, Jack’s lung function has increased by 20%! The highest that it has been in years. Touching lots of wood that he remains on this high for as long as possible, he’s worked so hard and deserves this break.

Thank you to everyone sending cards to both boys, they both enjoy it so much.

Update 13th February 2016

Jack has had a very good month. He had his two weeks of IVs and they did him the world of good. His lung function leaped right up to the highest that it’s been in years! It was a tough couple of weeks but it was obviously needed and very worth it. He is now able to play rugby again, which he is thoroughly enjoying along with keeping up with karate!

He had a lot of tests done at his post IV appointment and we await the results of those in a few weeks time. There have been glucose tolerance tests (for CF related diabetes), liver scans (to check on his liver disease), kidney and bladder scans (for his stones), as well as a CT scan to monitor what this bacteria he is fighting is doing to his lungs. Fingers crossed that most come back good!

Update 5th January 2016

Over the Christmas period the children have had an enormous amount of post, it’s been so exciting for them. We would like to thank everyone who sent a card to the boys and to the lovely people who chose to be our family’s elves! The boys have had some lovely thoughtful and generous gifts. We would also like to thank the schools that have spent time with their classes making cards for Jack and Luke. To receive a huge bundle of handmade cards was lovely and the children had such fun looking at and reading them all. One school also chose to be an elf to the boys and what a huge surprise that was! They both received so many cards and gifts from that it was unreal, their faces were a picture.

We truly do appreciate each and every person who chooses to get in contact and create the smiles we see on our children’s faces. We try to reply to as many as we can and will always post to Post Pals Facebook page and group to thank as well. If it sometimes takes a while it’s not that we have forgotten or do not appreciate it, it’s just that we are either in hospital, at appointments or that maybe Jack isn’t doing so well. If we miss anyone it is not intentional.

After such a wonderful clinic last month things have turned again. We had to bring Jack back to the hospital early as his lungs were not good, particularly in the lead up to Christmas. After finding that Jack has dropped 14% off his lung function and he has lost about a kilo of weight, his consultant took the decision that Jack requires another two week course of IVs. These will start on 12th January. We also found out that despite being on a rigorous and tiring treatment for the last 12 months solid, the serious bacteria that is infecting Jack’s lungs is still growing in there, and is showing no signs of disappearing yet. This was a bit of a blow considering the amount of extra treatments that Jack has had to endure for the last 12 months. He will have to continue this regime for the foreseeable future in an attempt to eradicate the bacteria from his lungs. The IVs that he is to start on are powerful and quite nasty, they will make him sick and very tired. We are not looking forward to it at all, but know that it is necessary. We are fortunate that we are trained and able to administer these at home, providing that he doesn’t get too sick and are very grateful for that. Let’s hope they get his lung function better again!

Jack has also seen his urology surgeon and his urology consultants over the last few weeks. Things have been better in that department lately so that is good. His kidneys are a little enlarged and his levels are slightly high. The plan is to have ultrasounds every 12 weeks to track any changes and hope that no more stones occur. If they do his surgeon will deal with them as necessary. We are also supposed to try and collect any small stones or debris when we can…That could be a challenge!

Update 2nd December 2015

Jack had a fantastic clinic! I am so pleased that he is back on track again, his lung function has recovered and back up to a massive 87%!! His weight was up and he grew a cm in height! All great things, especially when they all happen at once! He also had his port flushed. His team are extremely happy with him from a CF point of view this time and therefore don’t need him back for 6 weeks! In the meantime they are going to liaise with his urology team and surgeon,, in preparation for Jack’s appointment next month to try and get to the bottom of the kidney side of things. Hopefully they will figure out why his kidneys are producing stones and hopefully come up with some sort of plan. Onwards and upwards – well done Jack!! Jack also got to enjoy a make a wish shopping trip where he spent time in a limo which took him to a shopping centre to buy some toys. He had a great time.We are all looking forward to our first ever IV free Christmas 🙂

Update 1st November 2015

Jack has been having a lot of blood in his urine, which has been persisting since February. Eventually, about 3 weeks ago he had a camera put into his bladder, as so far all other tests have been inconclusive. On his last liver ultrasound the sonographer happened to notice a lot of debris in his bladder, the recent camera procedure however turned up nothing.

Jack has never been in any pain or discomfort the whole time that this has been happening until Wednesday of last week. By Friday it had got increasingly worse so I took him and a sample which was a horrible brown colour, full of grit and little stones to the GP, so that they could look at it, as I was unsure where to go with him or what to do next. Between the GP, CF consultant, urologist and surgeons they decided that they wanted him to be admitted into hospital immediately.

They were concerned that although he had passed some kidney stones, that there may be more that had got stuck, given the amount of pain that he was still in.

It turned out to be a horrible stay as firstly Jack’s dad is out of the country with work, so I had to desperately call on people to help with Luke, Jack’s younger brother, and secondly due to dramas on the ward he was staying on. Eventually tests, scans and X-rays were completed, and as they couldn’t see any obvious stones or blockages and the fact his urine was returning to a more normal colour, he was allowed home on Saturday evening.

He had a good day all day Sunday until the evening, when he was in some considerable pain again and his urine was again red in colour.

Clinic day was on the Monday, so we again made the long two hour round trip to hospital.

Jack has lost 10% lung function and his chest sounds bad. He is quite productive at the moment, so a good sample was sent to the lab. We also learned that he is still harbouring the most harmful of bacterias in his lungs, even after nearly a whole year’s worth of aggressive treatment for it! They are going back to the drawing board on that one.

We had to wait a very long time at the clinic, as his consultant wasn’t happy with Jack’s kidneys and the amount of pain he was in, and so called the surgeon to come and see him.

We chatted for some time about possible causes and she came to the conclusion that none of the causes really fit, and that he was actually just very unlucky. It’s a very uncommon thing in children and he has none of the predisposing factors.

She has spoken to the lovely surgeon who carried out Jack’s nissens operation, and who happens to be a urology surgeon who has agreed to take him on. We therefore have to carry on with our pain management plan in the meantime, and look out for certain symptoms, meaning that we would have to return him immediately.

It’s been an extremely tiring few days for all three of us.

Update 15th October 2015

Jack has just been discharged from a stay in hospital due to a surgical procedure and a steady decline in lung function.

The procedure went well and after two weeks of IVs his lung function has improved. His chest still sounds bad and there is a lot of physio work needed at the moment to try and help him move the extra mucous. We are working hard with him for the next two weeks, when his consultant will review the situation again.

Jack has been back to enjoying rugby since being discharged and even won himself a trophy and a medal which he has nattered on about all week!

Thank you everyone who had sent post, he particularly enjoyed Helen’s Leeds Rhinos drawing which has taken pride of place in his room.

Update 7th September 2015

Jack has had a really good month as he’s been hospital free and is keeping reasonably well. This means that he has been able to indulge in his number one love (rugby) a lot more! As well as playing in a number of festivals, we took him down to Wembley to watch his team, Leeds Rhinos, win the Challenge Cup. He was also able to go to a couple more matches over at Leeds. He’s been a very happy little boy!

With school returning this month though, we are hit with a great big dose of reality.

Jack has clinic next week and then the following week he gets admitted for his investigatory procedures to try and find out the cause of his kidney/bladder troubles. Fingers crossed that it will be a straight forward in and out situation!

Both Jack and Luke have been enjoying hearing from Dottie the Dalmatian – Luke gets so excited when he spies the paw printed envelope land through the door!

Thank you to everyone who sends post, the boys really do appreciate it.

Update 3rd August 2015

Clinic for Jack went well. Weight stayed around the same and he grew a whole centimetre! His lung function had dropped a little bit but remains stable. A good clinic appointment overall and we don’t have to go back until early September!

We’re just waiting for his investigatory procedure with urology now. Hopefully we won’t have to wait too long!

Update 4th July 2015

Jack started IVs for his chest at the beginning of June and these were being administered at home, as I always have done since he was about 18 months old.

Unfortunately this time he suffered a reaction to one of the drugs and after being seen in clinic and sent home again, then later admitted onto the ward and then discharged again, Jack found himself as an inpatient once again!

This time though they have discontinued two of the three drugs he was having and replaced it with another. This seems to (fingers crossed) have solved the previous issues.

His team have resorted to giving him the drug that they really didn’t want to. It’s known for its horrible side effects and really was/is the last and only drug available to Jack. It was kind of a last resort/back up plan. So I guess now we have nothing to fall back on.

Anyway, daddy was staying with him as I’ve had my own health issues to deal with and it’s been incredibly hard for us the last week.

It’s always nice for Jack when daddy is staying in with him as he gets to have some respite from the ward. He was allowed out one day and they went to watch Jurassic Park together, followed by tea out!

As always, many thanks to those that have helped out, and also to those sending post – I was swapping with Jack’s dad and taking it up to him then.

Update 1st June 2015

Impromptu clinic visit today! Only 3 weeks since we were on top of the world about how well he was doing, rejoicing at the fact he was given an 8 week break until his next appointment. He has been having breathlessness on and off for a while, but maintaining his lung function well, so us and his team decided to see how he went.

Friday night, from what seemed out of nowhere, a nasty cough developed. Over the weekend Jack’s chest has rapidly declined. He has been struggling to breathe, producing loads and loads of sputum and having trouble sleeping with it all. He’s woken in the night struggling and asking for physio to help clear things to allow him to breathe better. He’s even asked to go to the hospital, bless him.

It seems that the mucus is intermittently blocking his lower lobe of his lung, preventing air from reaching there. If we don’t keep the mucus moving there is danger of a partial collapse. His samples have been sent off (fingers crossed that there are no new bacterias growing down there!) and he is going to be starting a two week course of IVs and see how he does from there.

I’m a bit gutted and honestly surprised about how fast this happened, but hopefully he will be fighting fit again soon.

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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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