C/O 211 Cannon Hill Lane,
West Wimbledon,
London,
SW20 9DB
United Kingdom

NB: this is a forwarding address for the Pal, we do NOT disclose home addresses

Email Pal

Daisy N's Parents/Guardians

Stephanie and Andy

Daisy N's Siblings

Theo 08/02/1997 He loves Pokemon, films especially those by Pixar and also computers. He likes general knowledge and loves to keep up with current affairs and voice his opinion!
Xanthe 07/03/1999 She plays the flute, enjoys drama club at school and attends Guides. She likes Glee and listening to music on her ipod.
Jules 04/08/2002 He loves anything to do with the Army / Miltary, planes, snakes and reptiles, dinosaurs and machinery.

Daisy N's Interests

Loves Disney especially Mickey and Minnie Mouse. She also likes looking at bright and colourful books, crafts, and music. Daisy likes imaginary play and playsets such as Littlest Pet Shop. Daisy doesn't like cuddly toys.

Daisy N's Favourite Colour

Pink

Is Daisy N able to read?

No

Is Daisy N able to use hands?

Yes

Is Daisy N visually/hearing impaired?

Yes

Does Daisy N suffer from any developmental delay?

Yes

Story written 2009

Daisy was born 3 days before Christmas in 2004 and was 2 months early. She spent 8 weeks in the neonatal unit and was diagnosed with Costello Syndrome. She spent most of her first year in hospital, both locally and in Great Ormond Street, and was diagnosed with a number of issues including a heart defect, visual impairment, and severe gastrointestinal problems. Children with Costello Syndrome are at a 17% increase risk of developing malignant tumours and she is screened for these every 3 months.

In spite of her diagnosis of Costello Syndrome, Daisy’s clinical issues have not always been typical of a Costello Child, and her geneticists are now testing her blood to see if she also has another syndrome running in parallel and making her completely unique.

Her struggles with her gastrointestinal system came to a crisis earlier this year- she has always been tube fed and normally spends around 20 hours a day attached to a feed pump. However, in September, her symptoms worsened and her Doctors at Great Ormond Street discovered she has aggressive pan-enteric colitis. This is where the entire gastrointestinal system is scarred and ulcerated. It has been caused by her immune system going haywire and attacking her gut.

Since this diagnosis, Daisy has been dependent on Total Parenteral Nutrition (nutrition through a vein) for all her nutritional needs. The initial treatment to manage her condition with massive amounts of steroids has not worked and she is now on large amounts of immunosuppressants. As her immune system is not functioning properly, she is at high risk of infection and is currently on large doses of highly toxic antibiotics to manage a blood infection.

She has been in hospital for the past 6 months and is likely to remain here (with regular visits to Great Ormond Street) at least until early summer.

The diagnosis of Costello Syndrome meant Daisy had a reduced life expectancy because of the associated risks and problems. Her severe gastrointestinal disease and autoimmune issues have reduced that prognosis further.

Every day with Daisy is a blessing, she is a much loved and treasured daughter and younger sister to her 3 other siblings.

She faces each challenge with positivity and a fighting spirit and her strength of character and happy nature keep us going through the tough times.

Daisy's siblings would like to ask not to be sent gifts as they kindly prefer Daisy or another child to receive them with the exception of Xanthe who enjoys doing craft kits with Daisy

Update 29th August 2011

Daisy is back in hospital at the moment. We have basically been in and out of hospital since February and have not had more than 2 weeks at home in a row or more than 2 weeks off IVs.

We made the decision for Daisy to have the colectomy surgery and this is planned for 9th September as a joint procedure with a Mitrofanoff procedure to her bladder. These are both major surgeries and we anticipate she will go to PICU post surgery and remain in GOS for around 3 months to recover. She will be going onto Squirrel Ward and will be admitted on 8th September.

We have such lovely people writing to the family, it gives us such comfort to know that people are thinking of us and we are not forgotten about - Daisy just loves getting post and gets so excited opening parcels or seeing her cards. Jenny, Glad, Rosie, Wendy & Kim are regular writers and we so appreciate hearing from them and all our Pals - we know you all have busy lives and it's so kind that you give some of your time to help our little girl smile so much.

The children had a family discussion about Post Pals recently and they all decided that they love receiving Post Pals mail but they know that as a family of four there are more than the average number of children to buy for. The boys have asked if they could not have presents bought for them but they do enjoy the cards and letters. Xanthe loves receiving craft/art sets so that she can do them with Daisy but they unanimously said that the greatest pleasure is seeing Daisy receive presents and they would rather she gets gifts than them (unless they are things that they can do with Daisy, as in Xanthe's case).

Update 9th June 2011

After 15 long and stressful weeks which included 8 anesthetics, Daisy has transferred to her beloved Chase Hospice for some respite for a couple of weeks. She has been left battered and bruised and mentally and physically traumatized by this stay. Sadly she will come home on even more pain killers and drugs and needing more interventions than before and this will be the story from now on. The doctors are now discussing her next major surgery which will be a full proctocolectomy and whether this is even safe to perform on her. Our only hope of this surgery is that it will remove the colitis which is the reason she is on immunosuppressants and steroids which greatly increase her risk of infection. We hope that we will get our longed for summer at home together as a family so that we can fill our days with happy family times and memories.

Daisy's determination, strength and courage are inspirational. Thank you to everyone who writes to her - believe me, the cards and gifts really do make her day.

Update 31st May 2011

We had hoped to transfer to the hospice today but unfortunately Daisy's hickman line has migrated and she will have emergency surgery tomorrow to remove it and repair the damage to her vein.

Update 25th May 2011

We’re still here in GOS. We are hoping to be home for the summer and then returning in the Autumn for the biggest surgery ever. Daisy loves to get post and Kate D saw how excited she gets when she visited us! It can really really brighten a long, stressful day.

Update 21st May 2011

Daisy is quite poorly at the mo and starting her 14th week in Great Ormond Street. She has had high temps for over a week despite being on several different IV antibiotics, her line cultures are negative but the docs are presuming this is the source of the infection as she is septic. The line is coming out on Monday and we are all keeping everything crossed she turns the corner then. She then needs a new catheter under GA and a new line, both done as separate procedures so 3 more anaesthetics to look forward to.

Update 26th April 2011

Thanks to all our pals for the lovely Easter gifts and cards - they really really brightened the children's holidays and Daisy's hospital wall.

We are waiting for a date for Daisy's bladder surgery and to reduce TPN to a more manageable level. Still hoping to transfer to our hospice for a respite break in the summer half term then home - fingers and toes crossed!!

Update 15th April 2011

It has been two steps forward and one step back, as always with Daisy. This week we restarted feeds at 5mls an hour but it caused her bowel to prolapse and as it was losing blood supply and turning black, we were in danger of losing a 5cm segment. Cue the emergency bleep to surgeons who had to act immediately to save the bowel.

Good news is that pain meds through the jejenum have been restarted successfully and next week we hope to wean her off the IV ketamine. Bad news is that a suprapubic catheter is looking likely, so that will be 5 stomas/pieces of plastic tubing she needs to keep going. All milk feeds have been stopped but we are making progress, albeit in baby steps.

Update 7th April 2011

Hi all, Daisy has been in GOS for 7 weeks now, 6 of them on 24 hour TPN and IV ketamine. She's currently in theatre having a surgical jejenostomy place so that we can have better access for painkillers which can be given when she is at home. The surgery involves creating another stoma which we know will set her back for a while as she does not respond well to anaesthetic or surgery, but we can begin to move forward once she has recovered from it and hopefully be home for the summer!!

Update 30th March 2011

Tomorrow we will start week 6 in hospital. We have been told that Daisy will be here for at least a couple more months and we will then go to the hospice for a stay before coming home.

It has been decided that the proctocolectomy surgery would be too dangerous for Daisy at the moment, so the doctors are trying to treat her with iv steroids. She has been on 24 hour tpn for the past month and the plan is hopefully for her to have surgery on her small bowel, to form a surgical jejenostomy so that she no longer needs a transgastric jej, and if it comes out again I can be trained to replace it.

We are waiting for a slot to have an MRI under General Anaesthetic to screen for tumours as Daisy has a very increased risk of tumour formation and the doctors are concerned this is the cause of her pain. The likelihood is that when we do get home it will be on intravenous pain relief; she has been on continuous ketamine for the past month supplemented with tramadol. She had a bad reaction to morphine so this is no longer an option.

On top of everything else she has already had two infections and IV antibiotics since being in hospital. Because she is permanently attached to drips and pumps we have not been able to leave her room and this means that family visits with the three other children can be very trying! We are finding this stay particularly hard as we just don't seem to have had a break from the relentless hospitalisations and bad news for years. It was 3 months since her last admission and that was the longest we had spent at home in a continuous period since 2008. Everyone is working hard at getting Daisy home but it has to be at her pace and in a way that means she can stay at home for as long as possible and we can be together as a family.

Jenny Ault has been such a star at making sure none of us are forgotten and thanks too to Jane B, Kate D, Kim L, Viks & the Post Pals gang. Big thanks to the person whose name I have forgotten who sent the little Monkey tree house playset to Daisy. She has played with it constantly and I am on the lookout for similar sets as she has had such fun with it!!!

Update 3rd March 2011

Sorry for not updating for ages, as always life has been full on here. We had a lovely Christmas and on the whole things have been reasonably stable apart from the continued high stoma output and Daisy's worsening night-time pain which is requiring stronger and stronger drugs. However we have not needed to make any middle of the night hospital visits which is the best thing.

We are now at the point that total removal of Daisy's large bowel is looking like the best option. She is due to go back into Great Ormond Street for a week's stay, during which she will have two procedures under two separate General Anaesthetics to look at her bowel function and also to replace her trans-gastric jejenostomy tube which came out again this week. We hope to meet with her surgeon to discuss the colectomy surgery and probable placement of a surgical jejenostomy tube which I could be trained to replace doing away with the need for an anaesthetic. We will also be discussing small bowel transplantation - although Daisy's large bowel is completely dysfunctional and will be removed, it also looks like her small bowel is also dysfunctional in that it works too quickly - her options are either a lifetime on TPN with all the risks involved or small bowel transplant. At this point we don't know if she would be a candidate, no child with Costello Syndrome has ever received a transplanted organ (or even had complete intestinal failure) so the risks may outweigh the benefits, but for Daisy's sake we have to leave no stone unturned even if it is a route we do not pursue, we owe it to her to have tried...

At the same time as this has all been happening we have been coming to terms with Theo's diagnosis of Aspergers Syndrome, something we had suspected for a long while. The turmoil of living with a child like Daisy is intensified when you have Aspergers Syndrome and crave routine and order and this has caused Theo considerable anxiety. We are currently going through the process of putting in place the support he needs and supporting him with his needs. I don't think an easy path was mapped out for our family but we keep rising to the challenges!

Big thank you’s as always to all our Pals, our children love getting post and being remembered - Christmas was lovely with all their gifts from elves and thanks also to Jenny for taking our children under her wing - Jules loves her letters, especially the ones about all the scary creepy crawlies and spiders and snakes!! Daisy loves cards - especially the ones made by Kim's Grandmother, they are works of art! Thank you for all you do, I feel guilty that I just no longer have time to thank everyone individually but please know that your cards and gifts really do make a difference and make our children smile!

Update 17th November 2010

A million apologies for not updating sooner, life continues to be hectic. 

Daisy left hospital in early September and returned to her beloved school. She managed to have a whole 6 weeks at home, the longest she has been out of hospital in 2 years, which was wonderful, however by week 6 she had yet another infection and ended up back at our local hospital on IV antibiotics. The course of this infection was not as straightforward as before, her stoma poured out making her very dehydrated and needing a lot more iv fluid, she also seems to have become resistant to one of the IV antibiotics we normally use for her so these have all had to be changed. We transferred to our hospice for respite from hospital and she came home needing even more TPN than before to make up for her very low sodium and potassium levels and massive fluid output. Great Ormond Street would like her to come back in for another inpatient stay soon and we have negotiated this for the New Year as we really don't want any hospital stays before Christmas if possible. They are hoping to see if there is anything that can be done to slow down her small bowel which is in overdrive, conversely, her now defunctioned large colon does not work and still causes her pain, especially as she continues to lose mucous and blood from her bottom even though she has an ileostomy. Andy and I have also decided that following this next in patient stay we will start seeking second opinions on Daisy's management and treatment. At the moment all care is palliative and we have been told that a small bowel transplant is out of the question; however we do not want to leave any stone unturned in ensuring that Daisy has the best and longest quality of life possible.

Medical issues aside, we have had the most amazing experience this month - the whole family were taken away for a holiday of a lifetime to Florida, staying in a village specifically for life limited children and visiting the Florida Theme Parks - it was like something out of a dream for us all, we were part of a group of 22 families, supported by volunteer helpers and medics and were treated like VIPs everywhere we went. Daisy had the most wonderful time, the week before we were due to fly she was still in hospital, but in true Daisy style she made it and was fantastic for the whole week. It has given us all a boost, and the happiest memories we will treasure forever. We are now looking forward to celebrating Daisy's 6th birthday on the 22nd December, there have been times over the past few years we did not think we would get this far, but Daisy is the most determined little girl ever and she embraces life to the full. She is wonderful and we are so happy that we have her!

Update 13th August 2010

Hi everyone - for those who don't see my facebook updates, I have not had chance to blog for a while as Daisy remains in hospital following her ileostomy surgery. Following problems with post surgery infections, she then spiked temps last week as a result of her chronic bacterial overgrowth and the inflammation in her bowel coming back, then just as she was picking up she contracted parainfluenza! On top of all of this her stoma output is massive, meaning she is on TPN for 20 hours a day plus fluid boluses and piggyback fluids and is still getting dehydrated - until this is more manageable she cannot go home and because of her problems with bacterial overgrowth and the flu, has been stuck in her room bar a couple of visits out for the entire stay. We hope to be able to get her to about 16 hours TPN and top up fluids and at this point we will be allowed (hopefully) to go home with regular bloods to make sure she is not becoming dehydrated.

Update 23rd July 2010

Hi Post Pals - I just wanted to let you all know how exited Daisy is when the porter brings the post to the ward, there is always something there for her courtesy of you lovely people.

It's tough for us at the moment as we have learnt that Daisy's condition is truly incurable. Everything we do for her is palliative and she will spend the rest of her life on TPN and transplant is probably not an option because of all her other problems. However, to know people are thinking of her gives us a lot of strength. Thank you to everyone that has sent a message, card, gift… your kindness means a great deal to us xxxxx

Update 7th July 2010

Daisy goes back into GOSH tomorrow for her surgery on Friday. As we know with all gastro children, things can take a long time to settle, so we are anticipating another long haul on rainforest and at our home hospital – or should I say bracing ourselves for a long haul and then we’ll be surprised if it turns out not to be! We don't even know if the surgery will help but Daisy has an unacceptable level of pain and discomfort every night so we have to try. When she comes home she will hopefully start on oral ketamine for the pain which should help as long as her gut absorbs it. 

Daisy loves receiving post - as she is visually impaired the brighter the picture the better. She is still a big Peppa and Thomas fan but a simple card or drawing will guarantee a smile and brighten her day. A big thanks to everyone who has sent Daisy and her siblings post recently.

Update 28th May 2010

Hi all - well another rollercoaster month has passed and this ride is not stopping!! Daisy ended up staying 3 weeks in GOSH and for 7 days needed continuous infusion of ketamine plus boluses to help with the massive amount of pain she was in. Her casts have now been removed and she is back to wearing splints for 24hours a day (not fun in the heat) - she is still unable to walk independently but we are really hoping that a two week stay at GOSH (which starts on Monday) for intensive rehabilitation therapy will get her on her feet and semi-independent again. At this stage we don't really know if the orthopaedic surgery has helped – her feet are flat to the ground but her Achilles tendons are inflamed and painful - only time will tell!

We were very excited to get a call this week asking us to come in for Daisy's ileostomy surgery at last - sadly a few hours later it was cancelled as no long term high dependency bed was available, so we continue to wait for the surgery which we hope will help with her pain. 

We met with the palliative care consultant at our hospice and at long last have a pain management plan! She has prescribed some new medications which hopefully, once we get the doses right, will help with the awful discomfort she can often feel at night.

Andy and I worked out the other day that over the past 2 years Daisy has not had more that 4 weeks at home between hospital stays - in her life she has probably spent a total of 3 years in hospital - and she's only 5!

I tell everyone about Post Pals and how fantastic it is that people out there think of our family. I must thank Granny Ruth this month for Daisy's fairy outfit - she is a girl who loves dressing up and her tutu and flowery headdress are so gorgeous! And the students from Stourbridge College who designed and made books for Daisy are so talented - the book about Daisy's holiday is amazing - you have the family off to a tee!!! Thank you to everyone who remembers us - your kindness and generosity makes such a huge difference and really does put smiles on all our faces.

Update 23rd April 2010

Daisy came into GOSH for her orthopaedic surgery and TPN review on Monday, but true to form threw several spanners in the works. She did not do too well after the anaesthetic and had an allergic reaction to one of the drugs. Her tummy has shut down causing her a lot of pain and now to cap it all she has a line infection. She is back on 24 hour TPN, IV antibiotics, morphine for the pain, and her legs are in casts. She will be here until she is stable then they will try and get her back to the local. In the meantime the need for an ileostomy has become more urgent and the team are working to come up with a date. We are dreading this but it looks like the only solution to get her put off pain, the worrying thing is how she will cope with surgery.

Andy tells me there is tons of post at home for her; I can't wait to get her to the local so she can open it!

Update 15th April 2010

Theo was sent a fantastic book from Sara and Meggie recently - he could not find the address to say thank you - please could you tell them the book and joke set are so up his street. He was really chuffed to be remembered too - though he is 13 he is still a little boy at heart, although he thinks he is more grown up than the others!!

Daisy is going into hospital for the week on 19th April for her surgery on her feet which will mean that she should be able to walk again!! She will also have a lot of tests to look at how she is coping being dependent on TPN. She'll have two anaesthetics that week and then will go to our hospice to recuperate for a few days as she does not respond well to anaesthetic and straightforward procedures can sometimes be quite problematic. We have decided to ask for the ileostomy to be put back to the autumn as she needs it but it will set her back so much and at this point we really want to have some quality time together as a family over the summer with minimal hospital stays.

Update 31st March 2010

Daisy has had 6 hospital admissions this year (mainly through infections) and this sets her back, but the moment she is able to she wants to be back at school with her friends.

We met with her surgeons at GOS and an ileostomy is now the way forward to try and give Daisy some relief from her tummy pain and try and reduce her dependency on TPN. However, this is major surgery and as Daisy is already immunsuppressed, it will likely not be straightforward and involve a protracted hospital stay. After much soul searching on what is the right thing to do to improve Daisy's quality of life, Andy and I have asked the surgeons to delay surgery until early autumn, giving Daisy a summer (hopefully) at home with the rest of the family.

However, in the meantime, her orthopaedic surgery to correct her foot deformity has been booked for 19th April. She will also have lots of other tests that week including another upper and lower endoscopy under general anaesthetic. She will stay in GOS for the week and then transfer to our local hospital and then after the weekend to our hospice for some respite. 

Her muscles in her legs have become wasted and she now is reduced to shuffling around on her knees to move around the house, so once her plaster casts have come off and she has recovered from her surgery and procedures, she will then go back to GOS for a two week intensive rehab stay to try and get her built up again and walking independently. Of course all of this assumes she is infection free, which based on this year's track record is not looking promising! However, as always, Daisy is smiling, happy and brave; she is the one who gets us through it all!

Thanks to everyone who sends post, we try and write back when we can but at the moment we have weekly hospital visits (when not an inpatient) and my time is so precious. Every card is kept and every gift is treasured. I was particularly grateful to receive my Spa in a Box from Petra! And this week Daisy received the most fantastic dolly and baby buggy from Libby - just to let you know she has been called Lola and sleeps in Daisy's cot with her (and all her other cuddlies!). All the children get great pleasure from the mail and letters, even when it is for one of their siblings. They read the Post Pals site regularly and talk about some of the other children who are going through tough times - I think they find it reassuring that they are not alone. Thanks as always Post Pals xxx

Update 29th January 2010

Daisy is home but there are lots of things going on - we are able to get her home mainly because we can do home TPN and her bloods from here. She is still chronically anaemic and in spite of having iron in her TPN and enteral feed she is still losing it, probably as a result of her gut inflammation.

We are waiting for our date to come through to meet with the surgeon to discuss taking out the diseased bit of her colon and performing an ileostomy - we really don't want to rush into this as Daisy has so many issues going on and it's not a straightforward procedure at the best of times but could be even worse in her case.

Her endocrinologist is fixing a date to bring her back to GOSH to look at why her blood sugars keep dropping even though she is on treatment to manage this.

The other big thing we are dealing with is the problem with Daisy's tight heel cords. Having originally thought this would be the most straightforward of her procedures this year, we have been contacted by some of the other Costello syndrome families urging us to rule out tethered cord syndrome, as apparently some of the children with Costello have developed a condition where the spinal cord remains attached to the spine and this causes the tight Achilles tendons to develop if the child has a growth spurt or is treated with growth hormone (as Daisy is!). This would then mean complex neurosurgery added into the mix.

We try and protect the rest of the children from all of this but Theo had quite a set back when Daisy was readmitted to hospital and he is now getting support from a counsellor in school to help him talk through things. Jules and Xanthe are becoming real experts at signing and we are all learning more and more signs to help Daisy with her communication which is coming on in leaps and bounds.

We are so touched by the kindness and generosity of our Pals - we must mention Claudia from Germany who has sent the most brilliant presents through to the children - Jules has had the best time with the Dinosaur dig it out kit! We also have four lovely eggs on our windowsill growing assorted mermaids, princes and swans thanks to you! I will email Alison, our elf, properly and thank her for the lovely Christmas gifts. As always, we are so grateful to Charis and Lydia for their cards, messages and gifts for Daisy.

We are hoping that whatever happens medically for Daisy this year will no longer be emergencies but will be planned and focused on her quality of life.

Thanks to everyone at Post Pals for your wonderful work - you really are making a difference.

Update 4th January 2010

Tomorrow Daisy goes back to GOSH for a new Hickman Line. She was poorly with a chest infection over the latter part of Christmas/New Year so I am hoping this doesn't make her recovery longer.

The doctors are now talking about placing an ileostomy as her colon is so damaged. This is such a big step and we are really torn as it would hopefully relieve some of the pain she experiences but it is such a major thing with no guarantees. She also has to have the Achilles tendon surgery followed by at least 6 weeks in casts. Once these are off she will be back into GOSH for a fortnight of intensive rehabilitation under the rheumatology team.

I wasn't quick enough to get a picture of the children opening their elf boxes but have taken a lovely picture of them all by the tree with all the cards they received so I will email it when we get back from GOSH.

Happy New Year and thanks for everything!

Update 8th December 2009

Sorry have not updated for a while - we have been in and out of hospital with the usual high temperature crisis. Although they don't seem to be line infections it is all related to Daisy's gut going completely on slowdown and bugs moving around, being immunosuppressed doesn't help either.

We have been meeting with some of the consultant's looking after Daisy recently and the consensus seems to be that her already non-functioning bowel and gut has been damaged by the inflammatory bowel disease, this means that she faces the possibility of an ileostomy next year to see if it will help her gut restart and repair itself.

Before that she needs surgery on her heel cords which have become so tight that she will soon not be able to walk anymore until this is done.

Her hickman line is also going to have to be replaced electively as the repair to the tear in it that was done has become weak as she throws herself around so much in pain and pulls on it.

In spite of all of this she manages to get to school whenever she can and embraces everything life can offer her. We are really, really hoping that she will not be in hospital for Christmas or her birthday on the 22nd and have somewhat optimistically booked a trip to Center Parcs for a couple of nights for her birthday - since she has been on TPN we have never been further than our hospice in Guildford so we are keeping everything crossed that we can get away and really celebrate her 5th birthday in style. However, at the end of the day it doesn't matter where we are as long as we are all together.

Thank you so much for the mail, particularly the fantastic letters from Reindeer and Elves - Jules and Daisy are really loving these. As always Lydia makes Daisy's day with a mutual love of all things Peppa Pig.

Update 22nd November 2009

Well, Daisy is back in hospital. We thought it was a line infection but it is looking more like her inflammation in her gut is back. We recently had a big meeting with her consultants where it was decided to try an increase her enteral feeds with a view to trying to reduce the dependency on TPN, but unfortunately the tiny teaspoon an hour increase has sent her poor tummy on strike and made her poorly, so it is back to the drawing board. She's chronically anaemic and will need another transfusion soon. We hope that she can go to our lovely hospice at Chase for a few days next week for a break and to stay away from germs as she is also neutropenic.

She is still smiling and happy in spite of her pain and the ongoing pain in her hips and feet which we are still waiting surgery for - life is just a waiting game for us at the moment.

However, we are busy making big plans for a Christmas to remember – it’s Daisy's 5th birthday is on the 22nd of December and that will mark the start of Christmas for us - every other birthday has been spent in hospital or at our hospice so we are really hoping that now we are trained to administer her TPN and IVs at home, we can keep her at home for the festive period!!!

Thanks to everyone who sends cards/messages, it's lovely to know that in our day to day struggles we are not forgotten.

Update 3rd November 2009

Daisy has been home for nearly two months now which is so wonderful. Being home has thrown new challenges - Andy and I are managing all the medical needs as we battle for the support she needs, this takes up so much of our time and is mentally and physically exhausting. She has added a rheumatologist to her team of consultants as she now has inflammation in her hips and knees - they are trying to decide if it is caused by inflammatory arthritis or a side effect of her hypermobility - whatever it is another MRI under general anaesthetic is looming. We are also waiting for the date for surgery on Daisy's Achilles tendons as they are so tight she cannot physically put her feet to the ground - this would also involve 6 weeks in plaster casts as a minimum - fun!

Nothing has changed with the intestinal failure issues - Daisy is still TPN dependent and it looks like this will always be the case, a small bowel transplant is probably not an option for her, this will be confirmed once and for all at our appointment at Great Ormond Street on Thursday, so all care is palliative. We are still struggling with the amount of pain she is in, particularly at night time, but this is outweighed by the benefit that we have her all to ourselves and not cared for by a medical team!

Since being home Daisy's cognitive development has increased massively - she is loving being back with her siblings and is so happy all the time. 

Thanks so much for the Legoland tickets - they were used for our first family day out a month after she came home from hospital, it was so nice to do something normal again as a family. Thanks as always for the post we have received, the children loved their Halloween cards from the US, and Lydia and Charis just know that Peppa Pig is the thing that makes Daisy happiest in the world. So sorry for not updating for so long, we just don't stop and life, though so much better than being full time hospital, is one big juggling act! 

Update 15th August 2009

Unfortunately Daisy only managed 18 days at home before going back into hospital with an infection. The fluid on her hip is back and the doctors think it is linked to her Inflammatory Bowel Disease. On top of all of this, her jejunostomy has come out and will need replacing surgically.

We are transferring back to Great Ormond Street from Queen Marys on Monday and really hope that she will be home soon. We are missing being a complete family again.

Update 10th August 2009

We have been home for two weeks now, the first spent at home and the second at our hospice, just spending time together as a family. We are slowly getting into the swing of things, but it is impossible to really relax, as Daisy coming home does not mean she is better, it just means that we have now been trained to manage her care to have her at home. However the bonus is that we are all under the same roof at long last! 

Life is not without its worries - she is neutropenic at the moment which means we cannot mix at all, and her orthopaedic issues are getting worse and worse, probably meaning that surgery is not far off. We are managing the TPN at home and keeping everything crossed she stays infection free and out of hospital for a while. 

Thank you so much, as always, to all our pals all over the world who make sure Daisy and her siblings are remembered. Jules was especially pleased with the birthday cards he received. Thank you Viks and Post Pals - you are all truly fantastic!!

Update July 2009

After 10 months in hospital, we are HOME!

Update 16th June 2009

Just to let you know that Daisy has taken a bit of a backward step and will not be discharged home as hoped on the 24th June. Instead, she is on Rainforest Ward at Great Ormond Street for the forseeable future. Everyone is working to get her home at some point but we just don't know when - next month she will have been in hospital 10 months. We are all missing being together as a family - particularly while we are in Great Ormond Street as I rarely see the other children and Daisy is currently too poorly to cope with a visit from them.

Thanks as always for the lovely mail and cards - some of the pals are so clever with their cross stiching, arts and crafts and photography! And the Peppa Pig sticker book from one Pal has been the biggest hit ever - it arrived at a time when Daisy was feeling really poorly and really cheered her up. Thank you everyone xxxx

Update 9th June 2009

Daisy got yet another line infection in May, this time during a respite stay at our hospice away from the hospital for a while. This resulted in her being blue lighted from our hospice to Royal Surrey Hospital, stabilised and then transferred back to Queen Mary's. Last weeek she was transferred back to our other second home, Rainforest Ward at Great Ormond Street, and she will be here for the forseeable future. She has already had a couple of blood transfusions and a procedure under general anaesthetic and is waiting for another detailed scan of her kidneys to see if they are damaged and causing her high blood pressure.

The exciting news is that we have begun training to administer Daisy's TPN and IV drugs and the plan is that when we actually leave here we will go home!! The reality is that after nearly 10 long months in hospital, the end is in sight! We are trying to put the support in place for when we go home and are also getting help from the palliative care team in managing Daisy's pain. The other children are so excited that Daisy will be coming home at last but there will be a massive amount of readjusting to do for all of us. I feel very institutionalised and will need to get used to caring for all four children under one roof!

We are constantly cheered up by the Post Pals mail and Daisy absolutely adored the "You are my sunshine" balloon, demonstrating it to all of the doctors! I have kept all of the cards and envelopes with addresses at home and we will write thank yous when we get back home. Thank you so much Post Pals for brightening up our long, long hospital stay.

Update 25th April 2009

We are back in Queen Mary’s after a months stay at Great Ormond Street. Within 24 hours of being back Daisy had spiked a 40.2 temp and was back on antibiotics. I learned today she has staph in her line and they are still wondering if she also has Cdiff.

However, we were so cheered up by the MASSIVE amount of post waiting for us all. Daisy particularly loves her Chemo duck and has been showing it to everyone. Her cubicle is having a deep clean on Monday so we can't put anything up on the walls yet but I will be putting strings up after the clean to get all the cards and pictures on display. We just do not have enough time in the day to write thank you’s yet but we will be doing so very very soon. Thanks Post Pals!!!

Update 23rd March 2009

Daisy got yet another line infection in May, this time during a respite stay at our hospice away from the hospital for a while. This resulted in her being blue lighted from our hospice to Royal Surrey Hospital, stabilised and then transferred back to Queen Mary's. Last weeek she was transferred back to our other second home, Rainforest Ward at Great Ormond Street, and she will be here for the forseeable future. She has already had a couple of blood transfusions and a procedure under general anaesthetic and is waiting for another detailed scan of her kidneys to see if they are damaged and causing her high blood pressure.

The exciting news is that we have begun training to administer Daisy's TPN and IV drugs and the plan is that when we actually leave here we will go home!! The reality is that after nearly 10 long months in hospital, the end is in sight! We are trying to put the support in place for when we go home and are also getting help from the palliative care team in managing Daisy's pain. The other children are so excited that Daisy will be coming home at last but there will be a massive amount of readjusting to do for all of us. I feel very institutionalised and will need to get used to caring for all four children under one roof!

We are constantly cheered up by the Post Pals mail and Daisy absolutely adored the "You are my sunshine" balloon, demonstrating it to all of the doctors! I have kept all of the cards and envelopes with addresses at home and we will write thank yous when we get back home. Thank you so much Post Pals for brightening up our long, long hospital stay.

Update 25th April 2009

We are back in Queen Mary’s after a months stay at Great Ormond Street. Within 24 hours of being back Daisy had spiked a 40.2 temp and was back on antibiotics. I learned today she has staph in her line and they are still wondering if she also has Cdiff.

However, we were so cheered up by the MASSIVE amount of post waiting for us all. Daisy particularly loves her Chemo duck and has been showing it to everyone. Her cubicle is having a deep clean on Monday so we can't put anything up on the walls yet but I will be putting strings up after the clean to get all the cards and pictures on display. We just do not have enough time in the day to write thank you’s yet but we will be doing so very very soon. Thanks Post Pals!!!

Update 23rd March 2009

Daisy is currently dealing with another infection and has been transferred back to Great Ormond Street to have her Hickman Line taken out. She is also going to have an upper and lower endoscopy to see if the drug therapy has helped heal some of the damage and lesions in her gastrointestinal system. She will also have a jejunostomy placed at the top of her intestine so that we can try and get more milk into her and reduce her need for TPN.

We have been so excited to receive the lovely cards and gifts from our Post Pal friends. All the staff on the ward get excited when there is new post for Daisy and her cards are decorating her cubicle walls beautifully. It's so nice to know that although she has been in hospital for 6 months she is not forgotten! Thank you from us all.