Story written 2010

Ella was diagnosed with Congenital Nephrotic Syndrome at 8 weeks old. This is a rare genetic condition resulting in kidney failure, which meant Ella had to have both her kidneys removed and needing dialysis for 11 hours every night.

Ella has spent an awful amount of time in hospital, and due to also having a low immune system, has spent many nights in ICU, HDU, and the renal ward. She has not been away from hospital for longer than 3 weeks this year, so the hospital has defiantly become her second home. Ella’s low immune system has also meant that she hasn’t been able to mix with other children as much as she would love to.

Although Ella is a really happy sociable little girl, this year has defiantly taken its toll on her. She sometimes has little energy and can get frustrated as her body won’t do as she wants it to. She is small for her age and doesn’t look like a 3 year old and although she can’t walk she gets about bum shuffling when not connected to a machine which brings a smile to the people she passes on the ward.

Update 8th October 2026

Ella recently turned 19 and is 12yrs post kidney transplant (2014). A couple of years ago her kidney function took a hit and whilst it didn’t improve the biopsy showed no rejection. She had had few admissions with infections and seizures after trying to wean her off medications . Last year Ella transfered from childrens to adults. Shes really struggled with this as she had 18yrs of the same hospital and adults is so different but she still needs that type of support that adults doesn’t offer so been a tough time for her.

For past 9 weeks Ella has been in hospital with pnuemonia which made her kidney function even worse. Luckily thats improved a bit . She’s on strong IV antibiotics, had blood transfusions and had her steroids upped which is playing havoc with her diabetes but if they reduce the inflammation and help get her better then we just have to manage.

Update 13th April 2016

Ella and her family are now moving on from Post Pals. We want to wish them all the best for the future. Her Mum said this:

Ella has loved receiving post, on way home from school she will always ask “has the postman been”. She will always have issues, delays and transplant is not a cure but she is doing well (dare I say it, I’m touching wood). There are so many children in hospital, I know how much it helps receiving post when inpatient and decorating the room with cards and pictures definitely helped brighten the grey walls.

Thank you so much for the past 6 years on Post Pals, it’s brought many many smiles over the years even when smiling was the last thing we wanted or were able to do.

Update 7th December 2016

Ella’s knees and back are continuing to cause her pain if she’s on her feet for too long and she has stopped trying to take steps. She took her first ever steps earlier this summer but because of her problems with her bones her legs and joints are not aligned straight and they hurt which is putting her off.

Ella continues to need between 5-7 injections a day as well as regular blood sugar checks. She is also still having epo injections to increase red blood cells, her thighs are like a pin cushion. If her bloods are good when we’re seen at the hospital then she can move to 4 weekly clinic appointments. Ella is very excited for christmas and loving all the decorations and lights

Update 23rd August 2015

Ella is still having water infections that she can’t seem to shift, but this is probably down to her low immune system and anti-rejection medicines she has to take.

Ella has been having pain in her back legs and knees, so she’s got some new special shoes and insoles to help support her feet and ankles. We hope this will help, but her feet, ankles, legs, knees and hips, are not in the correct positions, so it will always be an ongoing problem.

She’s also having to go back on epo injection again, as her heamoglobin (although better than it once was) is not where it should be. Add that to the fact she already has 4-6 injections a day for her diabetes and she’s feeling like a pin cushion, but once they’re done she’s fine.

Her hearing also seems to be getting worse, which is another side effect of the steroids, so it’s going to be checked.

After all her hair falling out, it has started to grow back. Although there’s no legnth yet, it is starting to get thicker, so she’s hoping it continues. Ella always has the horrible side effects to any meds that she has, even if small risk, and for a girl it is an especially big thing to lose your hair. She just wants princess hair and a plait like Elsa from Frozen.

Despite all this, Ella had a fab time at the transplant games in Newcastle where she won a medal and 2 in team trophies. On one race, right at end, she left her walker and walked over the finish line – she was so happy and I was a very proud and emotional mummy!

Update 24th July 2015

Ella has been well in herself although she has needed lots of trips to hospital for blood tests. This is because we’ve been struggling to shift a urine infection, so lots of new antibiotics too.

On a happier note Ella took her very first steps, at nearly 8 years old, which got her on the tv 3 times – twice with Granada reports and once on Good Morning Britain. She now tells everybody she is famous – she really loved being on tv and lapped up all the attention.

Despite the first steps being taken, this is causing problems with her legs, knees and back as they’re in funny positions. This is due to bone disease dialysis and not walking. When she does walk, this is putting pressure on her joints and back, but we’re hoping some more supportive shoes and physio will help this. Ella also needs to restart epo injections to help increase red blood cells, as hers are low so she’s a bit anaemic. It’s not good as it’s another injection and she already has insulin injections about 5-7 times a day.

Update 2nd May 2015

On 7th May it will be 1 year since Ella’s kidney transplant. It is a huge milestone for Ella and the family, so we’re having a little party for ‘sidney kidney’, as this is what Ella calls her kidney! Two days later on 9th May, Ella has been chosen to be race starter for the Morrisons Great Manchester mini/junior marathon. She’s so excited and has insisted she wants to do it with her walking frame not wheelchair.

Ella had a fab Easter – her first Easter that she could eat Easter eggs, as she couldn’t eat them before transplant due to strict renal diet. She was also in ICU at Great Ormand Street hospital last summer.

We are having issues with Ella’s anti rejection meds as her hair is falling out and there’s not much left now. If things don’t improve we may have to change meds, but a happy kidney is more important and so it will needs lots of thought. Diabetes is also still an issue, requiring lots of insulin injections every day, so it wasn’t short term as we had hoped. Ella’s had extra trips for blood tests at hospital this month due a to water infection, but luckily antibiotics sorted that out again.

Update 5th February 2015

Ella has had 2 hospital stays this month, both with very high temperatures. The first time was put down to viral infection and infection around her gastrostomy button site and the second time she had a water infection. Luckily once the antibiotics kicked in Ella was loads better and blood levels improved. We have to go back again on Monday for repeat bloods as her blood clotting level has gone too high again, so we need to adjust her warfarin medicine dose. Consequently she has been at the hospital a lot these past few months but luckily Ella likes it there.

Update 11th December 2014

Apart from the typical cough and cold, Ella has been well lately – it just takes her longer to fight bugs and illnesses as she is immune suppressed. Transplant clinic appointments are now every 3 weeks instead of every 2 weeks.

She’s going to school full time and doing well. At the moment she’s enjoying practising her school nativity play. She is opening the play and she’s in her element when on a stage, so she’s very excited.

Update 4th November 2014

Ella has been going to hospital each fortnight for transplant clinic. The doctors are happy although there’s still an issue with her heamoglobin level being low (which is ongoing) and her pottassium being high, but they assured me it can take a while to settle. Ella’s anti rejection meds are also making her hair fall out so we are also keeping an eye on that as it has gone very thin.

The good news is her growth is picking up, as at the beginning of the month growth hormone injections were being mentioned because she’s so low down on the height charts. However, over the past 3 clinics Ella has grown 2cm each time, so she’s definitely having a growth spurt and at clinic yesterday the doctor said we can hold off on the growth hormone injections.

Ella still has diabeties which I was hoping would have settled by now, but as she is still on steroids her sugars are going to be high, so she’s requiring regular insulin injections many times a day.

Update 18th September 2014

August has been a busy month with lots of clinic appointments to change Ella’s medication. She was having injections twice a day to thin her blood, but on top of all the insulin injections and finger pricks to test blood sugar, this wasn’t ideal. The medicine in this injection also really stings, so we were swapping for warfarin in a tablet form which is kinder than injections. However, this meant going every day to hospital for bloods until she reached the correct blood clotting level.

Whilst this was going on, Ella’s haemoglobin level dropped again so she needed a blood transfusion. This is not ideal for transplant patients so to prevent needing another Ella also had an iron infusion a week later.

The week before bank holiday Ella’s cmv infection returned, and although well in herself, this caused her creatine (kidney function) level to creep up which isn’t a good sign. She spent the week going back for bloods but each day it got higher, so Ella got admitted over bank holiday weekend and had operation number 41, which was for kidney biopsy and to start iv steroid infusions. We had a long 24 hour wait for results but luckily they came back ok and her levels had come back down. Luckily they could also stop steroid infusions as this caused Ella’s sugar levels to go through the roof and not even recording on the tester.

On a good note, Ella has been well and her legs are definitely getting stronger. She is using her walking frame for longer periods and getting more confidence using it.

Update 28th July 2014

Ella is doing really well (dare i say it!) and we’re nearly 3 months post transplant. Clinic appointments are now every 2 weeks instead of weekly. This is very strange for us as we’ve gone from going every other day, to weekly, and now fortnightly. It is a very nice strange though.

Ella had her 40th operation a few weeks ago to have her stent removed and her gastrostomy tube changed to a button as she needs this for all her medicines. Ella is still having to have blood sugars checked and is needing insulin, but she’s still on steroids and we’re not sure when these can be stopped. She obviously doesn’t like all the finger pricks and injections every day, but luckily will forget after a while. She is also still having blood thinning injections but the doctor did say we could possible swap for aspirin which would just be tablet so one less injection. Fingers crossed!

Update 5th June 2014

Ella had her kidney transplant on the 7th May and is doing well. She is still in hospital though as the steroids needed have affected her pancreas and she now has diabetes. We are hoping this will be a temporary thing but in the meantime she’s needing lots of insulin injections and lots of finger pricks to check her blood sugar levels which aren’t nice. However she soon forgets about them and is happy and playing again.

Ella got transferred to Manchester children’s hospital from GOSH last night (4th June) so we’re nearer to home now. We’ve been far away from family and friends for a long time.

Update 4th June 2014

Ella is on her way back to Manchester children’s hospital from Great Ormond Street after a good response to her kidney transplant.

Update 8th May 2014

Thank you for everybody’s messages, it has been such a hard 24 hours. The operation went really well (although it took 9 hours) but the surgeons were really pleased. She got taken back to theatre to open her up and look at the kidney as she wasn’t urinating, but thankfully after an hour the surgeons told us the kidney looks fine. They think it is just a sleepy kidney which is common, especially as the operation was so long.

She’s now doing 7mls per hour which we’re so happy to see as Ella hasn’t urinated since she had both her kidneys removed at 19 months old. Fingers crossed it starts to pick up more but after 2 operations in one day I’m not sure my nerves can take any more! It is never straight forward for my poor baby girl.

Update 2nd May 2014

Once again, plans were made to come back to Great Ormand Street on certain a date in preparation for transplant which is planned for 7th May. The day after getting this plan Ella’s dialysis line wasn’t working properly and then the next morning Ella had pulled it again. After a big panic and flap we got her to Manchester Children’s Hospital where we were blue lighted in an ambulance to Great Ormand Street. This was the day before Good Friday. Once at Great Ormand Street we spent the night trying to get Ella’s potassium/phosphate levels down. Due to not getting dialysis since the Monday these were high, as her body can’t break these down and are harmful and dangerous if too high. She was on 2 lots of different i.v meds and nebulisers hourly through the night to make her safe to go theatre. This took a while and she didn’t get to theatre until 12 midday. We were told this was a very tricky operation with no guarantees of getting a line in due to Ella having really bad access because she’s had so many lines previously. There was talk of maybe going into the liver but this was also very tricky. Luckily the surgeon got a new line in just above where her old one was. Ella had to go straight to intensive care on a ventilator after the operation as she was so fluid overloaded they struggled to get the breathing tube down her. They were worried if they took the tube out there would be problems, so she went to icu on continuos dialysis until all the extra fluid was taken off her. Two days later Ellaa was extubated (taken off ventilator and breathing tube taken out). On Easter Sunday Ella was transferred back to Eagle ward and allowed a little bit of easter egg. We’re still there now as it was felt best to stay here until transplant, so she’s had her ECHO ultrasound, chest x-rays and blood tests, all in preparation for transplant on 7th May. Throughout all this Ella has been oblivious as likes being in hospital and we’ve had chances to get out for walks and to the park.

Update 21st April 2014

Ella is now off the ventilator and has moved back on to the ward from ICU.

Update 19th April 2014

Ella is at Great Ormand Street hospital in PICU on a ventilator. She pulled her dialysis line out and as she didn’t get dialysis since Monday, all the extra fluid that built up made her extremely fluid overloaded. So she had operation 36 to put a new line in, which luckily they managed, as it is extremely difficult to find access. She went straight to picu and hopefully once all fluid is off they can take her off the vent.

Update 8th April 2014

After the past 2 transplant cancellations in February and March, Ella is now home and continuing her heamo dialysis at Manchester children’s hospital 3 times a week. We have been given a new “provisional” date for transplant as May the 7th. We would be going back to GOSH two weeks before (around 23rd April) so fingers and toes crossed and prayers it goes ahead this time.

Update 25th March 2014

Ella has had a very rough time after being admitted to hospital on 15th January with a line infection. She had to stay in for 6 weeks of iv antibiotics and whilst there we got a date for transplant, which was 19th February.

So, at the beginning of February we were transferred to Great Ormand Street Hospital from Manchester Children’s Hospital. Unfortunately, the day before transplant, whilst having dialysis, Ella had a seizure and the transplant was cancelled. She had an emergency CT scan and luckily this was ok and the seizure was due to the more intense dialysis washing out her medicines.

We were soon given a new date for transplant (18th March) and allowed to go home to return to GOSH on 11th March in preparation for transplant. A couple of days before leaving for GOSH we got a phone call saying transplant had been cancelled as there was a problem with theatre slots. We were assured this was all sorted so it left us all very angry and confused. Luckily, a few days later, we managed to get everything back on track and we went to GOSH the following day.

Whilst this was going on Ella had been complaining her leg was hurting and swollen and she wasn’t wanting to move it, so we got her leg scanned whilst at GOSH. This showed the muscle in her thigh was full of blood so she needed a trip to theatre which got cancelled at 10pm after being nil by mouth all day. Luckily, Ella went to theatre at 3pm the following day for operation number 36, to have her leg drained and leave a drain in.the operation went well and Ella was ok despite needing 100mls of blood draining just from muscle. The drain was removed the day before transplant, but after an echo scan on the same day, the consultants decided it was best to cancel the transplant again. So, in the space of a month we’ve had the transplant cancelled twice on the day before.

We are now at home but don’t have a new date yet. We’re waiting to hear back from GOSH as to what the next plan or date is. Ella is still in pain with her leg but nothing like it was, so we are hoping it’s just a case of needing time for it to heal, as she was left very badly bruised.

Update 23rd February 2014

Ella is being transferred back to Manchester Children’s Hospital today. We should have been going home today but because of her high blood pressure we’ve got to stay in hospital. She will be back to GOSH on 11th March ready to try transplant again on the 18th March.

Update 20th February 2014

Ella’s transplant didn’t go ahead yesterday after all the build up and planning and 6 weeks already spent in hospital. She had a seizure during dialysis on Tuesday afternoon (the day before transplant) so it had to be cancelled. Luckily, despite needing to be sedated and an emergency ct scan, there were no bleeds and they think it was all down to needing a higher dose of meds now that she is on anti rejection meds, as one of them lowers the seizure threshold. So it is a case of waiting for blood results for levels and also waiting for another date. More importantly though, Ella is fine in herself.

Update 5th February 2014

Ella is now at GOSH as we got transferred from Manchester children’s hospital today. I was hoping to get a couple of days at home next week before transplant as we’ve already been in hospital 3 weeks but we’ve been told we’ve got to stay in, so it’s looking like a very long stay ahead and far from home.

Update 29th January 2014

Ella has been in Manchester Children’s Hospital for the past 2 weeks. She had a line infection so is being kept in on 3 different iv antibiotics. Doctors have said they want her to continue the iv antibiotics for another 2 weeks, although this now may be longer as on Monday we got a phone call from GOSH with a date for transplant. The date is 19th February and so we may be on them up until transplant and are looking at a long stay in hospital.

Update 25th January 2014

We got a phone call from GOSH yesterday. Ella’s transplant will be on 19th February. She’s still in Manchester Children’s Hospital on ivs and will be for 3 more weeks. We are hoping we can go home for couple of days before we need to go to GOSH, but it looks like it will be out of this one and straight to GOSH, so we are looking at a long stay in hospital.

Update 6th December 2013

Ella has had a rough couple months and spent 5 weeks in hospital having 3 operations in the space of a week. This was due to problems with her central line which she’s dependant on for dialysis. Luckily the new central line was put in and an artery on the opposite side that had been blocked due to previous central line being there was unblocked and a stent put in to keep the artery open which was a relief. From this operation another clot was found which wasn’t there the week before and we found out Ella had abnormal blood clotting, so we had to stay in hospital on continuous heparin infusion to thin her blood and had to have bloods taken every 4 hours which was very stressful for her. She is now having this treatment by having an injection twice a day which she hates and gets so upset, but luckily after lots of cuddles she calms down.

As for the transplant, we were originally told it would happen before Christmas but that’s obviously not the case now, as we’re still waiting to hear back from GOSH. Despite all this Ella is very excited for Christmas and is loving all the Christmas songs and decorations.

Update 26th October 2013

Back home from an emergency admission / transfer from Manchester Children’s Hospital to Great Ormand Street Hospital. Ella’s line started playing up last Saturday as when connected to dialysis machine the flows needed to filter and clean her blood were not strong enough. After unblocking infusions it was a trip to theatre for a new line. This was operation 33 but unfortunately she came back from theatre with no line and the surgeon saying there is no way of dialysing Ella. Luckily, within hours we were on our way to Great Ormand Street and the next morning had operation 34. After a very long 4 hours a line was put in. It was a horrendous week but despite this Ella remained her cheerful self and just wanted to go in the playroom. We’re now waiting on a date to go back to GOSH for more detailed scans either next week or the week after.

Update 23rd October 2013

Ella was transferred to GOSH from Manchester children’s. Her operation on Monday night did not go to plan as the surgeon could not get a central line in which she is dependant on for dialysis. After a CT scan at Manchester, GOSH said they will try using balloons and stents, so Ella is in theatre now at GOSH having this done.

Update 1st October 2013

We’re still waiting to hear about next stage of transplant work up and still awaiting a date for this.

Ella has had a good month settling into her year 1 at school and likes her new teacher.

Update 18th September 2013

Ella had an echo scan at the hospital as build up for transplant. Luckily everything was fine so now we’re just waiting to hear back from GOSH.

A huge thank you to everybody who sent birthday cards for Ella. After looking at each card she shouted ‘thank you Post Pals!’. Huge thanks for the moshi monsters magazines too, I thought Ella was going to burst with excitement!

Update 21st August 2013

Tests are still ongoing with Ella’s Nanna who’s a blood and tissue match to donate her kidney to Ella but now is having scans and blood tests to see if her kidneys are working fine.

Next month will be 3 years since Ella’s transplant happened and failed within the same day and it was scary times as it is Ella’s only option, so it is very good news that Ella can have a second transplant as last year wasn’t an option due to poor arteries.

Apart from this Ella is enjoying the school holidays and continues to go hospital three times a week for her dialysis.

Update 31st May 2013

After having a new central line put in (after only having the last one put in on the 15th March) things have been ok. We are currently awaiting blood results from Ella’s Nanna to see if she is a match to donate her kidney. This will be Ella’s second transplant and due to the first one not working this transplant is being treated as high risk and being done at Great Ormand Street Hospital not Manchester. This means we will be a long way from home but it is Ella’s only option.

Ella continues to go hospital 3 times a week for her dialysis and enjoys using all her new colouring books and kits to occupy her whilst she’s connected to the dialysis machine.

Update 9th May 2013

After returning from Great Ormand Street where Ella had a new dialysis line fitted, this has since had to be removed and a new one put in. This was tricky as her access is poor, but luckily a new one is in and working.

In the past week we have heard back from Great Ormand Street, who after looking at results, have said there is a vein/ artery big enough for Ella to have a kidney transplant. This came with very mixed emotions as Ella’s first kidney transplant went very wrong. Last year we were told she was untransplantable though, so obviously this is good news now as transplant is the only option for Ella. We have no date or time span as to when this will happen, just that they will push for it to happen. A family member is awaiting an appointment to have further tests done to see if she can donate her kidney. In herself, Ella is doing well, enjoying school and getting excited for an upcoming holiday.

Update 1st April 2013

It has been quite a stressful month. Ella’s planned operation to create a fistula in her arm didn’t go ahead as the morning of the operation an echo scan showed a clot inside her main artery where her dialysis line lies. So another operation was arranged to remove the line as this would break the clot up or it would come out with the line and they would put a new line in. The operation seemed to go well and Ella was sat up wanting toast within half an hour of being back on the ward, but another echo scan showed the clot is still there and is in the same place and same size, so it felt like a waste of time. However, the operation provided an opportunity to put dye into Ella’s veins and arteries so the consultants can look at them and see if Ella can have a transplant again. We’re still waiting to hear back from GOSH so I’m not sure on the plan yet.

Update 9th February 2013

We are still awaiting the results of Ella’s scan she had done on her arms. It was to look at her main arteries and veins in her arms to see which would be best to create a fistula in her arm, as this is seen as a better way for Ella to receive her heamo dialysis in the long term because there is less chance of infection and it lasts longer than hickman lines do. We went down to Great Ormand Street for this and were then sent to Guys hospital for the scan. So up until we hear back from GOSH we won’t know what type of fistula Ella will be having and when. It is difficult trying to get information as Manchester children’s hospital have never put or used fistulas in children (just teenagers) so we just have to wait for GOSH to get in touch with Manchester and then let me know.

Ella had a short stay in hospital in January due to high blood pressure which led to her becoming unwell, but luckily was fine soon after.

Update 11th December 2012

Ella’s mri scan was cancelled last minute as her consultant decided it would be best for her to have a general anesthetic rather than just sedation, so that will be happening on the 7th January. Hopefully we’ll then get an appointment at GOSH to see a consultant as nobody at Manchester has created a fistula in a child as young as Ella (just teenagers) but luckily they have at GOSH. So, once we’ve had her appointment we will hopefully get a date for operation number 30. Ella needs a fistula creating in her arm for her heamo dialysis, she has always had rubbish IV access and has had lots of central lines which she uses at the moment, but central lines don’t last long so fistula is the best option for Ella.

Ella is very excited for Christmas and is looking forward to her school nativity play and Christmas party at school.

Update 12th November 2012

Ella is continuing her heamo dialysis 3 times a week at the hospital and going to school on the days we’re not at the hospital. She is doing really well at school and has settled in well in her first year at school.

After spending most of summer in hospital, we made it through October without admission.

Next month Ella is having an mri scan to see veins in her arms. This is so they can put a fistula in her arm so that we are not dependent on just the hickman line for her dialysis. We have to go to Great Ormand Street Hospital which we have never been to before, as no surgeon at Manchester children’s hospital or nearer to here has done this operation on children, only on teenagers, so it is all new for them as well as us. Luckily GOSH have done this on young children. After had scan at Manchester, we will hopefully get a date soon to go down to GOSH and talk about having the operation to create fistula in her arm. This will be Ella’s 30th operation but it probably won’t be until January.

Update 13th September 2012

Ella has had a rough couple of months as she spent most of summer in hospital. In May, we had to take her to A&E with the same reoccurring problem of severe tummy pain and vomiting. After being given way too much morphine and it not even helping, Ella had operation 27 to repair a huge hernia and to remove a small part of bowel and insert a support for her tummy wall where it had broken away. She also needed a new hickman line putting in as this operation meant she would have to temporarily switch to heamo dialysis instead of the dialysis she has at home (peritoneal dialysis) as any fluid going in would put too much pressure on the large scar after surgery.

Ella had a long recovery as she had high blood pressure and she’s had that much surgery on her tummy that things took a while to start again and then her scar started to open a little bit which needed vac therapy treatment. By the middle of July she finally came home although she’s still having to come to hospital every Tuesday, Thursday and Sunday for heamo dialysis.

Unfortunately, with being in hospital, Ella missed all the settling in days for her new school and we also had to cancel a family holiday. By August, the nurses tried her back on peritoneal dialysis, but the catheter for this was blocked so operation 28 went ahead in the hope of getting a new one in time for starting school. The operation seemed to go well as the surgeon managed to get a catheter in and although Ella was well and in good spirits when she first got back to the ward, I noticed after a few hours that she was breathing fast and had a high temperature and was then complaining of tummy pain. Three types of I.V. antibiotics were started but as days went on there was no improvement, so 4 days later Ella went back to theatre for operation 29 and unfortunately the surgeon had to remove the PD catheter and said her peritonaeum had adhesions that weren’t there 4 days prior, and although fluid went in, non came out, so home dialysis was no longer going to be an option.

The next day Ella started vomiting badly and needed an NG tube putting in to free drain all the bile in her tummy and was put nil by mouth. Luckily (and finally) by September and the weekend before her birthday, Ella started eating and drinking and moving about and being back to herself and was finally discharged from hospital.

Although Ella missed her first day and first week of school, she has started her ‘settlings in’ this week. She did an hour on Monday morning and did 2 and a half hours Wednesday and really enjoyed herself. It will be a long process settling her in and she still needs to go hospital for dialysis, but she can at least go to school on Mondays, Wednesdays and Fridays.

Ella also had a fab 5th birthday on the 9th September and enjoyed a party with friends and family. Thank you for all her cards and gifts!

Update 3rd July 2012

Ella has had a very tough 2 weeks and is still poorly in hospital. She had her 27th operation last week and needed part of her bowel removed – luckily only small part, but it was still not expected and she had to go straight to HDU. Ella also had a bad reaction to the morphine and had to be kept on oxygen and was also requiring blood sugars and gases done every hour so she was being pricked every hour. Due to the operation they had to change her form of dialysis – she was on peritoneal dialysis but has had to change to heamo dialysis to give her tummy a break. We are hoping she can go back onto pd dialysis before she starts school in September. Ella’s also had to be put on feeds as after 2 weeks she is still not eating or keeping fluids down. On the plus side, Ella is now off oxygen, morphine and ketamine, so I’m hoping things start settling down and improving very soon.

Update 16th April 2012

Ella had another stay in hospital with her re-occurring abdominal problem of extreme sickness and pain brought on by constipation, which resolved itself by day 4 . Doctors are thinking her intestines may be getting affected by her dialysis and numerous surgeries on her tummy, so not much can be done at this point apart from manage it as it occurs with i.v. pain relief and fluids, lactolose and suppositories. Unfortunately this admission happened on Easter Sunday so Ella not only missed out on celebrating that but she also missed out on going to see cbeebies live as we had tickets for her for that day.

On a better note, Ella is loving her new house and has more space to practice getting her legs stronger by being helped to walk about whilst we hold her hands. Her latest x-rays have shown her ankles are in a better position than they were 6 months ago too. They’re still not in the right position but are much straighter than they were so we’re hoping this continues now her parathyroid level has improved and she has the strength to try and get up on her feet. She also got a walking frame today which were excited about.

Update 8th April 2012

la is back in hospital again with the same symptoms as the last few admissions – very bad tummy pain and sickness. I’m hoping iv pain relief works better but we need to find one that works better because they said they can’t give morphine as it will make things worse (can apparently make you constipated).

Update 3rd January 2012

The operation Ella was due to have in October that got cancelled (due to her having a cough) is at present no longer required. She was to have her para thyroids removed as they were over active and causing all calcium to leak out of her bones. This was making her bones spongy and weak and so leaving her with bone disease and unable to walk. However, bloods taken since October have shown her pth levels drop from 2500 to 150 (this is still not a normal level as it should be below 50, but it is a huge improvement on what it was), and i am noticing the difference as Ella seems to have more strength in her legs and is always asking to be stood up. Although we still have to hold onto her, this is a massive improvement as she couldn’t do it before and would cry if we tried to get her to do it, so I’m hoping this continues.

A huge thank you for what you do. This is an amazing charity! Mornings can be quite stressful in our house with medicines and dressing changes, so when the post gets delivered my daughter gets so excited and soon forgets the trauma of sticky dressings and yucky medicines. I have often had to say to Ella to have the medicines quickly and then the post man will be here!

Update 5th March 2011

Ella’s operation went ok but unfortunately we can’t go home today as she now needs i.v. antibiotics because she had a high temperature, so we’re waiting on blood results.

Update 1st March 2011

Ella is having another operation on Friday to have a pd catheter fitted so hopefully when tested in a couple of weeks time we can go back to having dialysis done at home rather than in hospital. There’s no guarantees as her peritoneum was damaged but fingers crossed it has now healed and we can do dialysis at home as Ella has spent way too much time in hospital!

Update 14th January 2011

Ella has now been moved to the ward after spending a week on a ventilator in ICU. MRI and CT scans have shown little bleeds on the brain and sign of a stroke down to a condition called PRES (posterior reversible encephalopathy syndrome). We have to be patient as recovery will be a long slow process and we’re not sure by how much.

Today was good day though, she’s moving arms and legs a bit more and her eyes are focusing/following a little better. She also blew a kiss to her favourite nurse and gave her daddy a high five.

Update 8th January 2011

Please could everyone pray for my little girl Ella. She’s on a ventilator in ICU. MRI and CT scans have shown bleeds on brain. I just want her to get better so I can give her a huge hug. I’m missing my cuddles and need them more than ever.

Update 3rd December 2010

Ella had her kidney transplant in September, but sadly the transplant failed and Ella was only allowed home on the 2nd of December.

Story written 2011

Keeleigh was diagnosed at age 2 with kidney and liver disease. We were told that she would need a combined kidney and liver transplant by the time that she reached age 8. She shocked all the specialists and continued to do really well. We have now reached the point, age 12, where she needs her combined kidney/liver transplant. She is on the transplant list and we are just hoping that the call comes soon.

Keeleigh is a very strong willed person and always has the attitude of not letting her illness beat her. She is fully aware of what is happening and what is going to happen and still all she says is ‘Mummy, I’m going to get through this as I love you, Daddy and Klaiton so much, I don’t want to see you all worry anymore and when I’m better I’m going to be the best daughter and big sister in the world.’

I know my little girl is a fighter and she will beat this. Her kidneys are only functioning at 16% now and yet she still hasn’t started dialysis. Fingers crossed her transplant comes before she needs to start dialysis.

Update 2nd December 2015

Keeleigh had an appointment yesterday at Birmingham children’s hospital, they are pleased with her, but her liver bloods have risen to double the normal level, we are now waiting for a call back to see what happens next. She’s really down about it, its 1 year since she had liver rejection, so we’re all quite scared. Her brother Klaiton is doing ok, full of cold and off school but hopefully he’ll be back on track next week. I will let you know what Birmingham decide.

Update 15th October 2015

No changes, Keeleigh has been very tired lately as her medication has changed, we are Back to Birmingham  on Dec 1, for bloods and check up, will update when we’ve been.
Many thanks to you all for your continued support.

Update 15th July 2015

Keeleigh was at Birmingham children’s hospital on Tuesday. We’re waiting on blood results now and they want her to have a 24 hour blood pressure monitor, as her blood pressure is trending a little high.

We travel to Newcastle in 2 week’s time for the transplant games which she’s really looking forward to.

Update 11th June 2015

Keeleigh is struggling a little at the moment, as she’s having pain and has now been constantly bleeding for 11 weeks. They’ve just started her on another new medicine to try and stop it and fingers crossed it works. She’s back at Birmingham in July and I will let you know how we get on with the new medicine.

Klaiton has been suffering badly with his asthma recently and we also found out he is allergic to tea tree and eucalyptus.

Update 1st May 2015

We have had a phone call to let us know that Keeleigh’s repeated bloods show an improvement in kidney function, but no change in liver. We’re now waiting to see what they want to do next, as some liver bloods went up, some down, and one stayed the same.

Thank you for all Keeleigh and Klaiton’s post, and for Klaiton’s birthday cards.

Update 16th April 2015

Keeleigh went to Birmingham children’s on Tuesday for clinic. Her liver bloods and kidney bloods have come back quite high and they want to re do them next Friday. If there’s no improvement then they want to do an ultrasound to see what’s going on.

Update 10th November 2014

Keeleigh is being discharged tomorrow. The doctors confirmed it was liver rejection and we’re not in the clear yet, but she’s a lot better. They’ve altered her meds and bloods are heading in the right direction. She’s got bloods again in a week to keep a close eye on things.

Update 7th November 2014

Keeleigh is back in Birmingham children’s hospital and she had a biopsy today. She has some liver rejection and they have started her on a 3 day course of iv steroids. They will review on Monday and if needed she will have another 3 day course.

Update 6th November 2014

We’re now on our way to Birmingham and they’re operating tomorrow.

Update 5th November 2014

Keeleigh’s liver function has deteriorated further and we’re now waiting for a call from Birmingham children’s to admit her when they have a bed on the liver unit. They’re going to do biopsies then hopefully treat whatever is going wrong. We don’t know how long she’ll be in yet and she’s very down at the moment.

Update 24th October 2014

Keeleigh’s bloods have come back, her kidney is doing fine but her liver bloods are abnormal. They are majorly high and they want repeat bloods done on Thursday. If there’s no improvement they will admit her to Birmingham for biopsy, so fingers crossed they improve by Thursday. She’s very scared and feeling down about it.

Update 21st October 2014

Keeleigh hasn’t been too well and she’s still not back in school. We were at Birmingham children’s hospital today and everything seems to be going ok, but she’s bleeding a little heavy so we have to do a seven day blood pressure observation and wait for blood results.

Klaiton is going through a rough time too as he’s just been diagnosed with scoliosis.

Update 27th August 2014

Keeleigh’s doing ok at the moment. She went to the transplant games in Bolton and brought back a gold, silver and 2 bronze!

They are still sorting out her starting medical tuition at the moment as the doctor says she’s not fit enough to attend mainstream school. Fingers crossed she’ll be back in education very soon.

Update 31st July 2014

Keeleigh’s appointment went quite well. We’re still waiting for blood results and will hopefully get them in the next few days.

Klaiton isn’t having a good time at the moment as he’s had another bad fall and has an open fracture of his knee. They’ve put him on antibiotics for the infection risk and the x-ray shows evidence of blood around the joint, so we have to go to fracture clinic on Tuesday to see what they’re going to do. He’s in a wheelchair and has a rigid splint on it. What a start to the school holidays!

Update 21st July 2014

Keeleigh is still very down. We are back at Birmingham children’s hospital on 23rd July and are hoping they might be able to help. She is not in school anymore and they are sorting out medical tuition for September with support.

Klaiton has also been unwell. They’re worrying about his joints a lot and he is waiting for splints and special boots.

Update 1st May 2014

Keeleigh has had a rough few days and couldn’t keep anything down, but she’s managed to have a few biscuits today. The doctors are happy for her not to be admitted as long as she keeps improving. I have to check her blood pressure and temperature twice a day for the next week.

Keeleigh has also been worried as her dad was in hospital but has now been discharged and must rest. He has broken 3 ribs and dislodged cartilage behind the ribs.

Update 11th April 2014

Keeleigh is still bleeding badly and they’ve started her on a new drug. They think she’s got some bowel involvement now so she’s having ongoing tests to see what’s wrong. She’s having a lot of anxiety and panic attacks, but her bloods are fairly stable and being re checked next week.

Update 5th February 2014

Keeleigh is having a really having a rough time at the moment. They’ve now found a problem with her bowel and she’s having panic attacks with depression. We’re waiting on more tests and she has been started on 2 new meds.

Update 2nd December 2013

Keeleigh’s bloods weren’t too good so we had them done again on Friday and are waiting for results. She’s been a little up and down the last week and we are back to Birmingham children’s hospital next Tuesday (10th), liver clinic on the 11th, and kidney clinic on the 12th. Fingers crossed bloods will be a bit better by then.

Update 11th November 2013

Keeleigh is struggling emotionally to come to terms with her transplant and what she has been through the past few years. Post seems to be the one thing that makes her smile.

She hasn’t been feeling very well for the past couple of weeks and her bloods are a bit low but ok. Klaiton is having tests to see if he has Juvenile Arthritis.

Thank you to everyone who has sent cards and letters, Keeleigh loves them and thank you to everyone who sent Halloween things. Thank you for all your support.

Update 23rd December 2012

Keeleigh is doing really well at the moment. She is now 12 months post transplant and has just had biopsies and scans done which we are awaiting results of. She has at last started to grow a little too.

We have had numerous ups and downs over the last 12 months. She had her stent removed earlier in the year and this caused a few problems as it was left in situ a little too long and had embedded itself into the kidney. She picked up an infection from this and it resulted in a hospital stay. She (once again) ended up in hospital two weeks ago for a urine infection and had iv antibiotics, then she then was admitted to Birmingham children’s hospital for her biopsy etc. I will update you when we have had the results of the biopsy.

She has recently started at a new school as she was being bullied for being ”different” but thankfully she loves the new school and is getting on really well.

We have had bloods go funny too over the 12 months, but thankfully with a bit of adjustment on meds they have sorted themselves out.

We have also had Klaiton quite poorly and the doctors have discovered that he is highly allergic to eggs. He ended up having an anaphylactic shock after having the flu jab. He is struggling to walk now too as the arches of his feet are collapsing.

Thank you for your continued support and we all wish you a wonderful Christmas and New Year.

Update 21st February 2012

Keeleigh went to theatre today and all went well. She’s back on the ward eating and drinking. She did have a bit of a wobble but is fine now and hoping to be home in the next few days if the bloods and scan is better tomorrow.

Update 19th February 2012

Keeleigh is back in hospital; the stent that was fitted during transplant has slipped and is causing some swelling inside the kidney. She has also picked up an infection and so she is going to theatre tomorrow to have the stent removed and they are hoping this will improve the kidney function. The infection is slowly working itself out and they hope to see her white blood cells improve over the next few days as they are very low. If they don’t see any improvements in the next few days they will be transferring her back to Birmingham. She is feeling very down at the moment and fed up as she is on strict isolation due to infection risk.

Update December 2011

Keeleigh has had her transplant! She is now back home but the recovery is a long road.

Update 16th May 2011

Keeleigh has been back to the hospital today and we have been told that she will go live on the transplant list for kidney/liver today. They hope that we won’t be waiting too long (they say around 12 weeks is the average). I will keep you all updated and thank you for her cards that have been making her smile.

Update 12th May 2011

Keeleigh went to the hospital again yesterday, she had bloods done and her kidney function has deteriorated further. She is going to Birmingham children’s hospital on Monday so hopefully there will be no further decline. Keeleigh was also taken to hospital this afternoon after having a nasty fall. They are unsure if she has broken her nose as she has a black eye and a lot of bruising to her forehead and cheek bone. They said they can’t tell if she’s broken it until the swelling goes down. She is feeling very down now as they have advised me to keep her off school.

Story written 2011

We knew at the 24 week scan that Phoebe would be born with Chronic Renal Failure. Phoebe was induced one week early as there was no amniotic fluid and the first few hours were critical. Phoebe had a peritoneal dialysis catheter put in when she was 24 hours old and she has been on dialysis ever since. Phoebe spent nine weeks in the neo-natal unit before coming home.

In September 2008 Phoebe had her gastrostomy button put in so her NG tube could come out. Phoebe is fluid restricted due to no urine output and is fed special feed through her button. She does have some pureed food orally and likes licking and tasting.

In March 2009 Phoebe lost her sight due to pressure on the brain. She had a VP shunt put in due to hydrocephalus and was registered blind. She currently wears glasses to strengthen what sight is left.In April 2009 Phoebe got peritonitis and her peritoneal dialysis catheter had to be removed. She is now on heamo-dialysis and has two tubes in her chest, which run into her heart. Phoebe has dialysis on Mondays, Wednesdays and Fridays for three hours a time.

Phoebe’s Dad, Lee, is a good kidney match for her and we are awaiting results from various tests to see if a kidney transplant can go ahead.

Phoebe has had 28 operations to date and a recent bladder test showed that her bladder is too small so we know more operations are to come. Phoebe has a brilliant character and is always smiling.

Update 20th May 2014

Phoebe is now 2 years post transplant and she is ‘moving on’ from Post Pals. I’d like to say a huge thank you to everyone who has sent Phoebe and Libby (and even us parents) post and parcels. Each and every one has made us smile at how kind and generous people all over the world are. THANK YOU x

Update 17th March 2014

Thank you to everyone who writes to the girls and thanks for their special Valentine cards too.

Update 1st February 2014

Phoebe’s birthday is coming up and she has some cards and parcels that I have put by until the day. Thank you to all who write to Phoebe and send post.

Update 27th September 2013

Phoebe is now 20 months post transplant and from a kidney point of view all is going very well. I cannot believe the 10th January 2014 will be 2 years.

Phoebe was recently admitted due to a tummy bug that caused her tummy to be damaged and needed time to get better, it is improving but it’s just knowing what kind of things to avoid (sweets and cakes are a massive NO at the moment). We are trying hard to get phoebe drinking as she relies a lot on her button (gastro button) but she is not having any of it. She’s very stubborn not to drink.

We often get asked about our pets. We have a dog called Sandy who is very old, a cat called Toby who is 6 years old, a rabbit called Caramel who is 3 years old and we also have 2 fish.

Phoebes next lot of surgery will now be after Christmas as we are going on our summer holiday in October due to cancelling it from August after Phoebe was admitted. We all so need this holiday and are hoping we can get to go.

We would all like to say a massive thank you too all that send us all post and parcels.

Update 28th May 2013

Phoebe and Libby have a beautiful new baby sister, Trinity-Leigh, born on the 5th of May.

Phoebe is waiting for a date to go in for an operation to plumb her kidney to her bladder at last, but there are complications and risks that could jeopardize her transplanted kidney. This is due to happen around July.

Update 20th November 2012

Since Phoebe’s transplant from her dad, she has been doing much better – it has been 10 months now and she is eating properly and has LOTS of energy. We have to maintain her fluid to make sure she gets enough so she still has a gastrostomy button in, to which we are able to give her water boluses. She is trying very hard to drink this herself but it is a lot for her to drink. The hospital do want the button out so our next step is making her drink and also toilet training. We have had a few problems with this as Phoebe has an urostomy, meaning her urine comes out of a little stoma like hole on her skin, and we have recently had help with and started using bags, as she was getting wet and school was unable to control her amount of nappy changes needed. Over night the bags have helped, but it’s hard to keep stuck to her skin, so it’s still trial and error, although it has helped take some pressure off. We are still in conversations with hospital about eventually plumbing her kidney to her bladder.

Phoebe attends hospital every 3 weeks for routine check ups which means she has not missed school. This is good as she loves going and has started learning braille and is actually very clever with it – she has picked it up really easily and is willing to learn – she has become a very bright little lady.

I would like to thank everyone for their smiles in the post, Phoebe and Libby love receiving their letters and gifts.

Update 25th March 2012

Phoebe is doing very well with her new kidney. She is having her haemo dialysis catheter removed on the 2nd April so will spend a night or two in hospital.

Thank you to everyone that has sent us post.

Update 12th February 2012

Phoebe is now 5 weeks post kidney transplant from her dad Lee and they are doing extremely well. Phoebe now has a urostomy which she now urinates from. It is free flow as Phoebe has no bladder function and it comes straight from the kidney, which means later on (approx in 1 year) they will transform it into a mitrofanoff. So we’re now half way there at making Phoebe’s life a lot better.

We attend the hospital 4 mornings a week at the moment so they can do observations and bloods to keep an eye on her levels; as if there were signs of rejection they could do something sooner rather then later. So far so good though, but we have been warned the first year is the hardest. We have had concerns with Phoebe’s breathing at night so have been referred to ENT for adenoids and tonsils to be removed to help her breathing.

We’ve had some wonderful post, especially for her birthday. Thank you everyone! Thank you to the girls at the high school for all their drawings too – a beautiful idea. It’s an amazing feeling when Phoebe opens her post – she loves all the surprises.

Update 9th February 2012

Phoebe’s kidney transplant has been a success and things are going smoothly. Her dad is in more pain whereas phoebe is thriving off the new kidney. She is in hospital daily for blood tests but all is doing very well.

Thank you all for your amazing post! I love how some cards are hand made and Phoebe always feels them or the stickers on them etc. We have had some really beautiful cards!

Update 12th January 2012

Phoebe had transplant on the 10th January! Her dad, Lee, donated his kidney (they say often it takes longer for the person donating to recover than the one receiving) and then it was transplanted into Phoebe. Lee and Phoebe were both back on the ward the same day – they were tired and sore, but Phoebe was WEEING!

Lee is going home today and Phoebe is going for a scan as her urine isn’t flowing well, but it is to be expected due to the swelling.

I’m sure Phoebe would appreciate some cheery post!

Update 9th January 2012

Phoebe is having her transplant this week with a kidney donated by her dad.

Update 5th October 2011

Phoebe has been in hospital with heart problems and was on 48 hours monitoring.

Thank you to a young girl called Lilly who sent Phoebe a beautiful touchy feely card as it was lovely. Phoebe loves receiving her post and it brings smiles while she has her treatment.

Update 29th June 2011

Phoebe has been doing relatively well. We had a blood pressure problem which seems to have resolved itself now. She recently had to have more work up for transplant injections too which she was very brave for.

We are looking forward to our first family holiday at the beginning of August. It’s just a weekend but it will be a first.

Phoebe has been granted a wish to Paultons Park to see Peppa Pig World on the 14th July and both she and Libby are excited about it.

Thank you to everyone who has sent the girls post.

Update 29th April 2011

We had a slight scare with a clot blocking Phoebe’s line on Monday but thankfully it became free.We have had a lovely Easter weekend and Phoebe and Libby have received some beautiful parcels, letters, and drawings. Thank you Viks for the wonderful Easter egg game too as it was great fun.

Story written 2010

Max was born with chronic renal failure, which meant that both of his kidneys were not working and he has only ever had about 5% kidney function. Max was 8lb 6oz at birth but had a lot of fluid around his body and within 24 hours he weighed 7lb 4oz. Max has undergone several operations in the past 2 years, the first one at 3 days old to create an artificial opening through his tummy wall into his bladder so urine could drain constantly, and to insert a dialysis catheter, which was never needed so was removed when Max was 10 weeks old. More operations followed and Max has spent lots of time in hospital, or at home attached to one machine or another, but he has always been so brave and resilient.

Max has had dialysis previously but had constant infections in his catheter line so was taken off dialysis in September 09, and by nothing short of a miracle, Max has not needed dialysis since. All Max’s doctors are baffled as to how Max’s little body is coping, and how he remains so well, as he really should be critically ill, but Max is a fighter and doesn’t let anything get him down or stop him.

Max is waiting for a kidney transplant and is about to go on call for a donor, whilst his mom and dad are both being assessed as potential donors. Max has regular blood tests to monitor his condition and he has an injection once a week, and is fed via a gastrostomy. Max has a huge food phobia but with the help of several therapists is slowly learning about food and can now touch certain foods, although he doesn’t eat anything at all.

Although Max is 2 and a half, he is very small, in only 6-9, or 9-12 month size clothes!! Max is due to start pre-school in September, so we are currently trying to order uniform for him, in his tiny size!!

Update 2nd June 2014

After a very difficult 8 months we are very pleased to say that Max is doing really, really well! Max’s transplanted kidney is working well and he’s now able to eat and drink and has even managed to go back to school!

With this in mind we feel it is time to move on and let other children who need the smiles more receive the post and lovely gifts you guys send!

We are extremely grateful for all the post Max and his siblings have received over the past few years, and for all the love and support shown to us during some difficult times!

With love & best wishes

Michelle & family x

Update 7th March 2014

I’m very happy to say Max is now home after 5 months in hospital following his kidney transplant… and so far so good!!

Update 2nd January 2014

Max has been in Southampton General since 28th November and still no sign of coming home.

Jack has decided he’d like to give up his post for poorly children as he’s older now, but thank you to those who sent to him. Kacey and Max still both love receiving post, so a massive thank you to anyone who sends things.

Update 3rd December 2013

Thank you so much for all the love and support you have all shown towards Max and our whole family during Max’s kidney transplant. Max is doing really well and the new kidney seems to be working well. We’ve all had a sick bug recently which meant Max needed to spend a couple of days in Southampton hospital, but hopefully we’re over the worst now.

Update 29th October 2013

Three weeks ago today my baby had his kidney transplant! What a long 3 weeks it has been, with lots of ups and downs! But… (all being well!) we’re transferring back to Southampton for a couple of days then hopefully HOME!! We all cannot wait to have Max home and have some family fun time! Thank you for your support along the way!

Update Sunday 13th October 2013

Day 5… Max is doing well, he’s able to move himself in the bed using his hands and feet, and he’s sat out in the chair twice! His bloods are still coming down but very slowly, and his urine output is good. Ultrasound shows good blood flow to the kidney. Max has a small amount of internal bleeding in his bowel, which is being very closely monitored, so he’s only allowed sips of squash at the moment.

Max is very vocal, and is saying the funniest things, making us all laugh so much… he’s one amazing little lamb.

Update 10th October 2013

Max is doing ok, he’s been in a lot of pain but pain relief has been increased, so he’s now sleeping a lot. SAM (the kidney) is still sleeping but is doing well and we are hopeful it will kick in soon, meanwhile Max’s kidneys are holding their own. The surgeons and nephrology team are happy with the situation and its just a waiting game now. Max is having lots of IV fluid so is very puffy. Thank you for all your good wishes and for keeping us all in your thoughts.

Update 9th October 2013

Max had his kidney transplant yesterday. He had a restless night in ICU but is battling on as always. Max’s dad, who donated his kidney, is up and out of bed and hoping to be able to visit Max soon.

Update 7th October 2013

Max is currently in hospital and is going to receive his dads kidney.

The address to send post whilst he’s in hospital is:

Beach ward, Evelina children’s hospital, Lambeth Palace Road, Lambeth, London, SE1 7EH

Update 3rd April 2013

Max continues to have haemo-dialysis 3 times a week in Southampton Hospital, which is very time consuming and poses many restrictions, both socially and physically due to his perma-cath lines. Max is always positive and such a happy cheeky little chap though, you can’t help but love him!!!

We are all very grateful to everyone who stops to think about, and send a little card, note or gift to brighten his day. The colouring and sticker packs are brilliant, we create many pieces of art, which hang with pride! Kacey and Jack also love receiving their post, and it is so lovely to see the smile on their faces, so THANK YOU so VERY VERY much.

Update 8th March 2013

Max is doing well, though still dependent on haemo dialysis 3 times a week at hospital, whilst waiting for a second kidney transplant, either from a live, or deceased donor. Max has many restrictions and has a lot to cope with but remains happy with a positive outlook, which keeps the whole family going.

Update 5th November 2012

So sorry for not getting in touch for ages, Max has kept us all on our toes!!

He’s had quite a good run of health over the past few weeks, until last week (30th October) when he became quite poorly with high temp etc, so he was admitted to hospital where he stayed for over a week. He has now come home but we have to return to the hospital daily for IV antibiotics, due to the infection that Max had, which we now know is a blood infection!! Max is still on haemo dialysis 3 times a week, but he copes well and now does some school work whilst having dialysis.

Update 28th February 2012

Firstly can I say a MASSIVE thank you to everyone who has shown us all so much love and support over the past few weeks, we have all been through a really tough time, so THANK YOU!!!! We really appreciate it!

Max is doing ok, he’s now on haemo dialysis at Southampton hospital 3 times a week, he copes well with it, and it means he is closely monitored, which he needs right now. He needed a blood transfusion last week, but seems a bit better now. He returned to preschool for the first time today and loved it, after screaming and crying for the first 20 minutes!! We are all hoping to establish more of a routine now, so a little bit of normality can creep back in to everyday life, or is this to much to ask for?!

Max continues to be happy and cheerful most of the time, he can be a cheeky monkey, but it is his fantastic personality that carries us all through the ups and downs!

Thank you to everyone at Post Pals, you’re all stars!

Update 19th January 2012

Max is having yet another trip to theatre, this time to remove the new kidney as the transplant has failed and it’s making him very poorly.

Update 18th January 2012

Well, after a very long and exhausting roller coaster journey, tomorrow is going be d-day! Kidney stays and we struggle on? Or kidney comes out and we get my baby well, recovered, and home with a plan! Personally, after seeing him struggling to breathe today and needing oxygen, I think we should remove it and let him heal. Nobody wants a half hearted transplant that’s causing more problems than previously had! So let’s wait until tomorrow to get a plan and do it. I just want my baby safe and well, we’ve all had enough now!

Update 16th January 2012

Max was doing really well after his kidney transplant and was hoping be home at the weekend, but he wasn’t transferred as ‘bloods showed early signs of rejection’. It meant he had to go to theatre for biopsies as the scans showed the kidney wasn’t emptying properly and so a catheter was put back in. IV meds were needed, but after 6 needles that day he had no veins left, so they had to wait for a PICU doctor.

Max’s bladder wasn’t working properly but the biopsies showed no sign of rejection. He is now in ICU. Surgeons removed a large blood clot from the artery to his kidney. The kidney has been saved but he has had to go back on dialysis to give it a rest.

Update 7th January 2012

Max went into theatre for his kidney transplant on the 4th January. He was put on a ventilator and sedated in PICU but was quickly off it and the first thing he said was ‘can I have some coke and stand up now?!’

Our thoughts are with Max’s family and also with his donors’ family.

Post can be sent to Max in hospital, he would love to receive some smiles!

Address: Beach Ward, Evelina Children’s Hospital, St Thomas Hospital, Lambeth Palace road, Westminster, London, SE1 7EH, United Kingdom.

Update January 2012

Max got his call and had his transplant! He is getting stronger by the day and hoping to transfer to his local hospital soon.

Update 18th August 2011

Max is doing really well on dialysis at home, but it means we are sometime restricted by the routine. However, we manage and Max’s siblings are amazingly understanding and supportive. No news on transplant yet, but hopefully it wont be to much longer, although sometimes it seems like an impossible dream!

Thank you so much for every piece of post, which the kids just love receiving, and really brighten up their day. Jack (Max’s brother) had lots of birthday cards which is just lovely. We’re all very touched by people’s generosity.

Update 13th April 2011

Thank you so so much for your lovely cards and gifts sent to Max during his long hospital stay whilst his dialysis was established and balanced out. The post really cheered him up and helped pass the time of day. Max is home for now, long may it last!

Update 13th March 2011

Max now needs dialysis daily (12 hours out of any 24 hour period) and will be going into hospital tomorrow for 3/4 weeks (maybe home for a couple of days in the middle somewhere!). He will be going to theatre on Tuesday afternoon to insert the dialysis catheter, and hopefully starting dialysis after about a week or so.

Update 1st March 2011

Max continues to do well against all the odds!! We have been told it is only a matter of time before Max requires dialysis again so we enjoy each day as it comes at the moment!

Max has recently gone from a cot to a big boy’s bed – a massive step for someone attached to machines over night – and very scary for mummy too!! He has done fantastically though and is such a big boy now!!

Thank you to everyone who continues to put smiles on the children’s faces with your lovely cards and gifts. Thank you for Max’s lovely teddy which he now snuggles up with in bed, and thank you for Kacey’s fabulous parcel. The packaging was brilliant, almost too nice to open! Kacey loved all the items in the parcel and has had great fun. Many thanks.

Update 2nd January 2011

Thank you so so much to everyone involved in the elf scheme. Max and his siblings had some amazing gifts and their little faces light up when receiving such amazing parcels. Just magical, thank you.

Thank you to EVERYONE for everything, from cards to gifts, they all mean so much and make Max and his siblings so happy.

Update 2nd October 2010

Max continues to do extremely well with very little medical intervention, which completely baffles all our doctors, who describe Max’s condition as ‘eye wateringly painful to read on paper’. Yet Max is doing well at present as though he has no illness, so he is allowed to plod on for now, although we have been told he could become very very poorly very very quickly as his blood results already show that he should be chronically ill, so we make the most of every day. Max has started Pre School now and he really does enjoy it (once I’ve left him and he has some dutiful tears, for my sake of course!). We are hoping to meet the transplant surgeon as soon as possible to get the ball rolling for Max’s transplant, but it is quite hard to co-ordinate appointments when we live 160 miles away from the hospital!!

A massive thank you to Beckie for Kacey’s box of goodies for this month’s theme, she was so excited walking home from school that I thought she might actually burst, she LOVED it! Everyone loves the Dottie project, our litter mate Ellie goes everywhere with us, and we do get some strange looks when we are taking pictures of her! She even has her own facebook page! And THANK YOU to everyone who continues to send post and put a smile on the children’s faces!

Update 31st August 2010

Max is due to start main stream pre-school on the 8th September after the staff receive some training from the medical team. This is such a marvellous milestone which we didn’t know if would reach, so it is quite an emotional time right now.

Max has about 4% kidney function at the moment, but continues to fight and live life to the full with very little medical intervention. This really baffles the doctors and consultants, but in their words, something is working so don’t change it!! We are due (overdue really!) to meet the transplant surgeon and transplant consultants in London soon (hopefully this month) to get Max listed for a deceased donor and to continue the work up for a live donor.

We are hoping to get away for a few days towards the end of the month, not too far, just  a little break, which will be nice.

Thank you to everyone who has sent post to Max and his siblings, they really do enjoy receiving their post. Max and Kacey were really excited to receive a letter from Dotty, and cannot wait to meet their new puppy – they have lots of adventures planned. Max loves sticker books so has had lots of fun playing with them this month, especially as the weather has been rotten!! Thank you so much to Donna & Matt for the gorgeous hand made teddy for Max, he loves it.

Update 18th August 2010

Max and his siblings really love getting post; it is amazing to see such a huge smile from such a small gift/letter, so thank you so much to every ‘friend’.