Story written 2010

Connor was diagnosed with stage 4 Neuroblastoma in November 2008. He started with 7 cycles of chemotherapy followed by a 7 hour operation to remove the tumour. He then had an 8 week stay in hospital for high dose chemo, followed by 3 weeks of radiotherapy, and last but not least, 6 months of tablets called retinoic acid.

Finally, after 16 months of treatment, Connor was given the all clear. Things were on the up until June 2010 when we were given the worst possible news anyone could ever hear. Neuroblastoma was back and this time there was no way of getting rid of the horrible disease, he was terminal.

The little fighter he is has now started more chemotherapy to try to slow things down. He’s not letting anything stop him and is living life to the full and is still the cheeky little boy he always was and will be.

Update January 2015

Nathan is doing well at school and enjoying himself once again. He would like to move on from Post Pals now so that other children can have a chance to enjoy receiving post, just like he did.

Thanks again for all your support.

Update 29th October 2013

Nathan started nursery in September and is loving it. He’s had quite a few hospital appointments as he’s having trouble walking due to his feet turning in. The consultant said he has relaxed joints and his hips are turned in so it will cause pain and he will fall over more than normal. We are waiting on an appointment for a second opinion.

Update 28th February 2012

We are very sad to say that Connor passed away this morning. Our thoughts go out to his family.

Update 9th June 2011

Not good news like I was hoping for with scans. They have showed that since treatment in London there is now an extra three spots of disease in his body, so not good news at all. He is now back on the chemo like before – 1 week on and 2 weeks off. He’s doing really well though, never misses school and is still his normal active cheeky self.

He doesn’t know yet but he’s got his wish on the 27th of this month from Make a Wish Foundation. He’s getting to go to a racing car track as he’s mad on cars so he should really enjoy his day. We’re also taking him away for a week in a caravan – he doesn’t know about this either. So 2 big treats for him, but he deserves them all.

Update 2nd May 2011

Connor has had all his treatment down in London and is doing well. He is back to school full time apart from the odd day when he has a check-up at hospital. He has a few scans/tests coming up this month to show what the treatment at London has done exactly. A bit of positive thinking though is that the levels in his urine they use to test for Neuroblastoma has gone down since the previous one he had done.

Update 17th February 2011

Connor has very recently just come back from a very hard time at the UCL (University College London hospital) where he has had two courses of MIBG therapy and chemotherapy.

He was isolated from everyone and wasn’t allowed out of the room with being radioactive. There were a lot of rules and regulations but Connor tried his hardest to stick to them all.

When he returned home he wasn’t allowed near pregnant women and under 18’s meaning he couldn’t be near his baby brother. It’s been hard but he’s only got another week left and he can see him. But as if that wasn’t bad enough, Connor went to his hospital for a blood and platelet transfusion and got a temperature so with being neutropenic he has to stay in for three days IV antibiotics. It just seems to be one thing after the other for him but he hasn’t complained yet.

The little gifts have helped lots and he brought the pens and sticker books etc into hospital with him. A big thanks to all the lovely people that have helped him through this, not forgetting Dottie, who he is cuddled up in bed with as I write this.

Update 19th December 2010

Connor is doing really well at the minute. He is still having chemo until he gets MIBG therapy at London after Christmas. He’s just had more scans that showed no improvement, but the consultant was pleased with that because it shows the chemo is controlling the horrible disease. So, finally some good news not long before Christmas.

Post Pals really cheers Connor up, he loves coming home from school to see what he’s got that day – letters, pictures or presents – he loves them all.

Story written 2012

Caitlin was born two weeks overdue and was a very healthy little girl weighing 8lb 1oz. She was a very fast learner and was on target growing up and hitting her milestones.

She had just finished her first term at school and even overcome her fear of water and did great in swimming lessons too. We broke up for school in December and Caitlin had been very restless pretty much from her 4th birthday in May, she was tired all the time and had weird bruises from playing with her sister and suffered nose bleeds at least once a month.

Well, Caitlin had a nose bleed for a week and we had had enough of doctors telling us it was normal, so on the 4th of January I’d had enough and went to A&E. After four hours of waiting we were seen and Caitlin had four doctors, two nurses, and someone from ENT (ear, nose and throat) come into this tiny room. Finally, after much poking, he said Caitlin’s blood test was showing some abnormal cells so decided to put a cannula in to do a full blood count.

We were taken into the children’s ward and had settled Caitlin down for the night (as we had now been in A&E for 9 hours and it had taken its toll). At 10pm we were taken into a side room away from Caitlin and two nurses and Caitlin’s doctor were there waiting. All I remember is the doctor said Caitlin had some abnormal cells and then I heard the crushing words CAITLIN HAS LEUKAEMIA.

We were rushed to Addenbrookes hospital where Caitlin endured test after test, cannula after cannula, and was put on 24/7 fluids and antibiotics until the 6th of January when we were told she has A.L.L.

It’s now the 29^th March and Caitlin has had 29 cannulas, 17 finger prick tests, fluids and leg injections galore, and we are now in week 10 of her new regimin C as regimin A wasnt working (this just means it is very intense). After having a neuro-gastric tube fitted, Caitlin had to have her hickman line removed as it was causing some dangerous temperatures and she was very ill.

Caitlin made a grown up decision at four years of age and said she was losing so much hair she wanted it shaved off.

My Nan lost her battle to leukaemia on the 18th of January so it has been quite a bad start to the year and Caitlin has been an inspiration and a rock for me and her step dad Luke.

I can’t imagine life without my daughters and Jessica (Caitlin’s younger sister) has been a guiding light and helped to keep Caitlin smiling throughout this whole ordeal.

We are blessed with our little fighter and her side kick.

Update 30th April 2014

I’d just like to say thank you to you all but I think it’s now time we stepped back and moved on from Post Pals as Caitlin received her last chemo today!!! We are over the moon and Caitlin is one happy bunny!

We’d love to thank you all for the post we received. Jessie loved her little gifts and notes from all over the world and learning about cultures. We have had some rather odd times, some good, bad, and horrifying times, but little Caitlin has done it – she won her battle!

We will now be writing to Pals and sending gifts, because although it may seem small to the person sending, receiving post is amazing and fills our hearts with love and fills our prayers with people to bless. Thank you all so very much for making my babies so happy when we’ve not had a great few years. They’re my little rocks and without them I’m just Alisha. You kept the smiles on our faces. We will take all our post we ever received out of our memory boxes, spread them out, and take photos of us and our new amazing friends.

Again, thank you so much. We love you and bless you every day. Take care xxxxx

Update 2nd September 2013

Morning everyone. From June until today the girls and I have been non stop. Caitlin had a rough month with a long stay in hospital with CMV pneumonia and I was quite close to losing her. Jessica stayed with my mum and saw her daddy weekends, but I couldn’t see her incase any germs caught would harm Caitlin. After we were home it was hard adjusting to our little routine again but the girls were amazing. My little rocks.

I do have some amazing news… the girls start school this week. Caitlin on Wednesday and Jessica on Friday. Cait will do Mondays, Wednesdays and Fridays for the whole day eeekkkk! Jessie will be doing all week afternoon sessions.

I have to warn you all we have a Beliber on our hands… Cait has gone Justin Bieber crazy!!! Posters, t-shirts, even a wallpaper on my mobile!! She’s hunting for him when we go out! It’s actually so heart warming because that’s a sign she is still keeping her innocence and childhood. We’re even getting out on her bike with Jessie too.

I want to say a massive thank you to our Becki and all our friends. Every week we get letters and pictures and the girls are so happy. Me… it just makes me so proud and happy that even when people have their own troubles they still give their time to make my greatest achievements, my daughters, start their days smiling and chatting about their friends all over the world.

I can’t thank Post Pals enough… there were good times you were there and sad times and the dark times. Always there with your smiles, pictures, letters, and kind words, to pick us all back up. We love you all and are blessed with you all in our lives.

Caitlin, Jessica, and mummy Alisha xxx

Update 9th June 2013

Caitlin has been diagnosed with Pneumocystis Pneumonia and is being transferred to Great Ormond Street for further treatment.

Update 8th June 2013

Caitlin is in hospital and on oxygen as her sats were low. She managed a good half hour to 45 minutes on her own before having to go back on. She has an ultrasound tomorrow to check in there for anything suspicious. At the moment Caitlin is resting on her oxygen and her sats are ok. With her antibiotics up now and a cocktail of meds throughout her day, we’re praying that she is home soon.

Update 15th April 2013

What a year we have had. We have been so busy since our last update in November.

Caitlin got taken out of school as she had a very bad case of shingles and then as she started to recover she had a very bad nosebleed but she soon bounced back. We had our meeting with Caitlins school where we arranged for her to slowly start again, but she got a rare infection in her wiggly (hickman line) which really upset her as she was in hospital for so long. We managed to get home from hospital just in time for Christmas.

Caitlin and Jessica were very blessed and received lots of cards from all over the world. For New Year, Jessica went to daddys, so me and caitlin had lots of fun making New Years decorations and visiting family.

Since our stay in hospital in December, Caitlin has been doing well with her new doses of chemotherapy at home and we started to do little science experiments and had lots of fun in the snow too.

Now it is April and I celebrated my 25th birthday and the girls spoilt me with lots of kisses and cuddles and even cuddled up and watched my favorite Disney movie with me (the little mermaid).

Today I visited the school and we have set a new target to get Caitlin back in to school and we have all agreed we are happy with the progress she has made and I am very happy and excited that Caitlin is going back to school. I’m confident she will be happy and do so well.

I wish you all happiness, luck, love, and kisses, from me and the girls.

Update 25th November 2012

Caitlin has now begun her maintenance treatment again after a 4 week break due to shingles and a bad temperature.

Caitlin will now also be allowed to attend part time at a main stream school!! I am absolutely bursting with happiness that Caitlin can snatch back her education after attending one half day since December last year! Jessica will also be attending nursery

part time as well so they will go to school and nursery at the same time and be picked up at the same time.

Jessica is going to be tested for diabetes because a spell in A&E has shown her sugar levels are very abnormal for her. We are waiting for her blood and sugar test date. Jessica has been amazing with Caitlin and was such a brave girl with all those doctors prodding her with needles. It was horrible and took me back to the worry with Caitlin, but Caitlin called me as she was in hospital (my sister was with her) and said ‘It’s ok mummy we know how to beat cancer now.’ It made me melt.

Me and the girls daddy are no longer together, but we are now finding a balance with being very proud parents and keeping our beautiful girls happy, and that’s all that matters to us.

Story written 2012

Elizabeth is 12 years old and was diagnosed with Cystic Fibrosis when she was eight months old. Up until four years ago Elizabeth was living a relatively normal life, although she was still having 2 sessions of physio a day, nebuliser and medications.

As her health started to deteriorate she had to have IV antibiotics every three months which meant a two week stay in hospital. I (Mum) was trained to do the IVs at home which then meant she could carry on with school and her life could be as normal as possible. She was also diagnosed as an insulin dependant diabetic.

Recently she has been very poorly and it was decided the time had come for a transplant assessment at Great Ormond Street. We went there in August 2011 and she had all the tests and they decided she wasn’t quite ready for transplant and asked us to return in February 2012.

During those six months Elizabeth started using a wheelchair and needing oxygen. She is having her IVs every six weeks now and has to stay in the hospital for the first two weeks.

We went back to GOSH and she is now active on the transplant list.

Update 14th July 2013

We are sad to say Lizzie passed away last night, she was in ICU and free from pain.

Update 30th March 2013

Lizzie is still awaiting a lung transplant and is in hospital every 6 weeks for 2 weeks. She is not going to school anymore and has a tutor who teaches her at home.

Lizzie is now the proud owner of a pony… not that she can do much with her at the moment, but she does enjoy getting out in the fresh air.

Update 3rd March 2013

Lizzie is still waiting for a lung transplant and is spending 2 weeks in hospital every 6 weeks which is hard but it is keeping her as well as she can be. She is actually in hospital at the moment.

Lizzie loves receiving cards and letters and also gets very excited when a parcel arrives.

Lizzie no longer attends school and she has a tutor who sees her at home.

Thank you for all you do, it keeps her smiling.

Story written 2012

We knew it was likely Eloise had CF from the 20 week scan when I was pregnant as it showed echogenic bowel and consequent tests showed her dad and I were both carriers. It came as a huge shock as there is no history in either family but a chord blood sample of birth confirmed CF. We were extremely lucky in that despite the echogenic bowel, Eloise didn’t have meconium ileus. She spent a week in the special care unit, being fed by NG tube for some of that time as she kept vomiting up whole feeds, and having IVs. Her first routine medications of vitamins, prophylactic antibiotics, Creon and physio, were started on day eight and we quickly settled into our new routine. However, by the time we went to our first clinic appointment at two weeks old, we’d noticed she wheezed and coughed a lot. At six weeks old she was prescribed an inhaler and was started on her second course of extra antibiotics for her cough that she’d had since birth – nothing seemed to help her cough or her wheeze. She was still vomiting up whole feeds and was unsettled and distressed too, so we started her on drugs in case she had reflux. By the time she was two months old nothing had changed and our local consultant arranged for an immediate outpatients appointment at our specialist CF Centre in Cardiff. The CF specialist listened to her chest and admitted her there and then for two weeks of IV antibiotics, a bronchoscopy and a pH study to see what was happening in her lungs and whether she had gastro-oesophageal reflux. The pH study was inconclusive but she was started on omeprazole anyway and this helped quite a bit with feeding and weight gain. The bronchoscopy was invaluable for us as it got to the bottom of why Eloise coughed and wheezed so much – she was diagnosed with Tracheobronchialmalasia which basically meant her windpipe and airways were extremely floppy where the cartilage should have been stiff. They also warned us that her threshold for infections would be much lower as a result and she’d probably need IVs more than most little ones her age.

For the next 10 months we fell into a stressful pattern of being on oral antibiotics for a fortnight and them not working and then ending up in hospital for a fortnight of IVs as a result, often requiring oxygen. By the time she was four months old, venous access was so impossible that they stopped the course of IVs at our local hospital and put her on the emergency list for a portacath (permanent IV access) in Cardiff. The operation went well but two days later she was rushed to the high dependency unit and put on cpap, although we never really got to the bottom of why that happened. She was started on immunoglobulin therapy at 10 months old to try and help prevent so many infections and improve her wheeze, as well as already been on orals, 2 inhalers, multiple nebulisers and physiotherapy twice a day. Things did gradually improve in her second year and we had less admissions – 6 as opposed to 12 – and managed to stop the IVIg, but we continued to add medication to her routine on an almost monthly basis. Due to swallowing issues she had a repeat pH study, videofluoroscopy and a laryngoscopy in Cardiff where a speech delay was flagged up – we discovered she has bilateral low-frequency sensorineural hearing loss as well as quite bad glue ear, so she ended up with a hearing aid, although she manages without this at the moment.

When Eloise was three, with all the chest issues ongoing, we began to have the bowel troubles that we thought we’d escaped when she was born and she was diagnosed with Distal Intestinal Obstruction Syndrome (DIOS), which continues to be a big issue now and we are looking at other tests to rule out a problem other than her CF. Over the last couple of years she has grown H. influenza, Acinetobacter and isolated Pseudomonas, and she now has a chronic Pseudomonas infection that we have been struggling to get on top of since January 2012. Her weight has been a concern for the last 12 months but some of this is related to the DIOS, as when she is blocking it affects her appetite, so she has daily supplements and fortified food beyond just adding butter and cream.

Eloise is a very happy little girl but she has to cope with a lot, even if she does smile her way through most of it. As well as her physical health, we’re also waiting on a referral to see if she is on the autistic spectrum and she has speech therapy at regular intervals. At present she routinely has a minimum of 6 puffs of inhalers, 5 nebulisers, 2 lots of physio, 6 sachets of laxative, around 30 tablets and 5 liquid orals a day, and she is admitted for two weeks IVs in hospital every 12 weeks when well, but more frequently if needed.

Update 2nd June 2014

Eloise is now moving on from Post Pals. Thank you to everybody who has ever sent post to Eloise.

Update 5th August 2013

Yet again I find myself apologising for the long delay in sending an update – there’s been a lot going on and some big changes for all of us.

I’ll start by saying that Eloise is in the best health she’s been in for over 2 and a half years and it’s a wonderful change for all of us. The admission to the Children’s Hospital in April was mostly uneventful and marked a steady improvement in her health following the bronchoscopy. She had 14 days IVs in the end as when they looked in her lungs there were markers of infection, but there wasn’t a great deal of mucus present which means that the physio we’re doing is helping keep her clear. Whilst none of the medics can explain it, within 7 days of the bronchoscopy the breathlessness was virtually resolved, the turning funny colours had stopped and her sats were steadily sitting above 94% for the first time in almost 9 months – she even hit 100% on a handful of occasions. Cultures from her lungs grew 2 bugs, but neither were ones that the team tend to treat. There was no growth of the bad bug we thought she had a permanent infection of (Pseudomonas Aeruginosa), however she has grown it again since, so we’re still not sure what the situation is there but as long as she’s keeping well we can live with not knowing for now. As well as the exercise tolerance test and bronchoscopy, Eloise also ended up on cardiac monitoring for 24 hours as there were some anomalous readings during her tolerance test, however the results from this were also fine. A highlight of the Cardiff admission was that we got to meet Jenny, one of Eloise’s assigned writers, and much fun was had playing Uno, chatting and generally having fun!

She had a little wobble a couple of weeks after being discharged and we had 3 weeks where her health was not the best again – a return to similar symptoms of breathlessness coupled with a cough, lower sats etc. but she battled on continuing to go to school where she could and after a switch in antibiotics we began to see some improvement. It took about 6 weeks in total, but she is now doing brilliantly and for the first time since the age of one we’ve been able to postpone her routine IVs – she’s now gone 14 weeks and there is no sign that she will need to go in any time soon. I’m trying not to get too excited, but this is a big achievement for her and we’re hoping it lasts for a while. The only concern anyone has about her at the moment is her weight as she’s lost a fair bit so we’re getting as much food and as many supplements into her as we can until she’s next weighed to see if we can stop the decline.

In May, we gave Eloise a choice to make: a holiday or a puppy. Surprise, surprise she chose the puppy and Marley the golden labrador joined our little family very soon after. She absolutely adores him although her behaviour does pose problems with him from time to time; thankfully he’s an extremely placid and accepting dog and a real joy to have around. Walking him is also excellent exercise for her and she frequently takes either her bike or her scooter.

Another impending change is that from the 12th August I will be returning to full time work – I’ve been working part time from home for the last 18 months, but haven’t been able to go back to full-time employment since Eloise was born, so this is a huge step for all of us. Derek will be taking over the majority of the caring role – I’m finding relinquishing a lot of her health and care responsibilities very hard and very scary, but it’s a step that I need to take.

Thank you so much for all of Eloise’s post over the last few months. She’s had some very thoughtful letters, cards and parcels and has loved opening every single one. I would love to thank everyone individually but there’s just too many to list. I don’t know where we’d be without the wonderful people that send her post – it’s a real help in keeping her cheerful at a time where she’s realised she’s different and doesn’t want to have cf any more. THANK YOU.

Update 10th April 2013

Yet more apologies for another delay in updating Eloise’s page. January, February and March have also been mixed months.

The issues I put in her last update are still on-going and she’s being admitted to the Children’s Hospital tomorrow for a minimum of 6 days for tests and to start her routine IVs. The blood tests done at the start of her last admission all came back fine which is both good and bad from our point of view as we’re obviously looking for a cause to the symptoms she has. The only thing that was flagged up was a historic infection of the Epstein Barr virus which causes Glandular fever, however she’s never exhibited any signs that would have led us to believe she had it or that lasted more than a couple of days. Her IVs in January were thankfully smooth and without any real hitches although she continues to be quite out of sorts for the first 48 hours or so, and the rest of January continued without anything new cropping up. At the start of February she caught a bit of a cold but it passed within 48 hours, however 48 hours after that she started coughing. We put her on secondary antibiotics but she continued to cough throughout the course. As she was due to see the specialist team for annual review at the end of February anyway she was given a third week of orals, however half way through her cough turned very nasty and we ended up switching to something stronger. To be honest it was the worst cough we can remember her having in the last couple of years and I was all prepared for her to be admitted for IVs when we saw the teams at annual review, however they were pleased with how her chest sounded and she did respond to the switch in orals after a few days.

Annual review was ok. We had no nasty surprises, nothing that we didn’t already know and in many respects was very positive. The physios were extremely happy with the work Eloise is doing and all the extra exercise she does. The dietician was satisfied in that she’s not losing weight, describing her as static at the moment, however she did go on to say that if she begins to lose weight or she remains static for a while we would need to look at other measures to help her gain such as NG feeding. This is something that has been mentioned in passing during most of our meetings over the last 12 months so wasn’t a shock or upsetting, and in actual fact she’s sitting on the 25^th centile for weight so it’s not even imminent. It’s just something to be aware of, particularly as a large proportion of her nutritional intake is already being achieved through the use of multiple nutritional supplements each day. The doctors were also pleased with how the year had gone although agreed that a bronchoscopy under general anaesthetic and exercise tolerance test would be a good next step in trying to work out the cause of her current issues, hence the admission tomorrow. She’ll be in for at least the next 12 days although hopefully transferred back to our local hospital for the second half. And hopefully we’ll have some answers by the end of it all.

March was a bit of an odd one. On top of the breathlessness and other issues she’s been getting excessively tired and that’s made everything seem a bit of an uphill struggle for her I think. She’s been very irritable and quite tearful which isn’t like her at all. She thoroughly enjoyed her birthday – we settled on a party at the local football club with an entertainer as she wanted to invite the whole class. They did circus skills like plate-spinning, had a magic show and then a bit of a boogie for half an hour. Eloise was thrilled as she got to be one of the magician’s assistants, although her favourite part of the whole party was when she blew out her candles and everyone clapped and cheered. She had a cake in the shape of a scottie dog and bone as the dog obsession has increased to infinite proportions and we are very seriously considering buying her a puppy once we return from our holiday in the summer.

Thank you so much for all the beautiful cards and gifts she received; just like Christmas we were overwhelmed by the number of people who had taken the time and effort to send her something. I have posted some more photos to the photo album I keep on facebook of her opening post and will share the album with the Post Pals page so that people can see the smiles they bring.

Eloise has received a vast amount of post over the last three months and it all makes such a huge difference. We can’t thank everyone enough. Each time I try to come up with the words to express what it means I get stuck so… thank you, thank you, thank you.

Update 7th January 2013

It’s been a mixed couple of months and apologies for the delay in sending an update. Eloise had a pretty good run October to November although there were still a couple of underlying issues and then things went a bit haywire after an amazing weekend in Cardiff for Children in Need.

Since September there has been an on-going increase in breathlessness on exertion that we haven’t really resolved. It’s not upsetting her, but it is having an impact as she’s been getting breathless doing things that have never been a problem before and it’s taking her longer to recover than usual – she’s such an active child that it is rather obvious at the minute. Her local consultant managed to squeeze her in before school the second week in November and did a chest x-ray that I’m sort of pleased to say came back unchanged from last March. A couple of cough swabs were taken – one for the ‘usual’ bugs that can cause problems with CF lungs and one for more unusual, slow-growing bacteria called mycobacteria – and she was started on secondary antibiotics on the off-chance she had an infection and an asthma tablet to damp down inflammation in the lungs. That weekend we were in Cardiff having been invited down for a live taping for Children in Need and she had the most amazing time – she was shown round backstage by Gethin Jones and spent time with Sophie Evans who she absolutely adored when they met filming on the ward in October. The BBC put us up in a beautiful hotel and we went down on the train as she was desperate to ride on one but we hadn’t been able to do it previously. She seemed a little subdued whilst we were away but we didn’t think much of it. On the Monday we took her to football training and she was stopping to catch her breath and sitting down a lot – when she came out, all around her nose and mouth was a horrible grey/blue colour. We took her in to be seen on our local ward, but their view was that as her lips and fingernails had remained pink they weren’t concerned. That night when I checked on her before bed she looked horrendous – same horrible colouration but also flushed and sweating profusely – she has been having perfusion (temperature/sweating) issues since July which had been somewhat dismissed. I rang the ward and spoke to the registrar for advice, however the view was still the same – not concerned. I wasn’t happy and sat up with her to make sure her breathing remained ok and the following morning, having spoken to her team, she was started on a hefty 5 day course of steroids. She was seen in clinic 3 days later, and although she was still turning funny colours, breathless on exertion, having sweats and temperature issues, for the first time ever with her local care I was not at all happy with the response we got. The additional medication made no difference although she was given another 5 days of steroids and this did eventually help with the colour issues.

Having said that she couldn’t find anything wrong with her, the local consultant told us that if she was no better by the Monday she’d ask our specialist centre to see her – long story short we had to wait over 3 weeks for them to see her and were told the only reason they were was because there was a cancellation in joint clinic at our local. I felt like we were being dismissed again, however the long and the short of the appointment was that they’re going to run a number of blood tests when she’s admitted tomorrow (Jan 7^th) looking at a number of things: tests for CF Related Diabetes (she’d be very, very young for this), full liver and kidney checks, serology to make sure there isn’t a viral culprit such as glandular fever, iron levels and the usual tests she has at the start of an admission. They’re also going to do a Mantoux test for TB whilst she’s in, however we were told that this is *extremely* unlikely and it’s more for the sake of being thorough. The view is that if all these come back normal then we can be fairly confident that there is nothing chronic underlying, however it still won’t explain why there’s been a change in her condition since the summer. We were hopeful when the cough swab they took on the same day came back with a growth of a bacteria called Citrobacter Werkmanii that we’d found the cause, however after two weeks of very strong antibiotics over Christmas, nothing has changed. The specialist team also started her on a proper steroid inhaler, however this hasn’t helped either.

On the bowel side of things, we’ve done another clear-out since the last update. How she happily drinks 10 sachets (625mls) of movicol a day I have no idea – she never ceases to amaze me! It’s helped though and we’re actually managing to go quite a while between clear-outs at the moment which is a big positive. She is complaining of tummy pain every now and then, but for some reason we can’t seem to get her pancreatic enzymes exactly right at the moment so we (hope!) think it’s probably cramps due to that.

Not CF related but a stressful experience for all of us was that Eloise somehow managed to sustain a gaping 2 inch wound to the back of her leg whilst in the bathroom at the end of November. She’d gone up to use the toilet, and whilst we still don’t know exactly what happened, we think she was messing about and caught the back of her leg on a free-standing, chrome toilet roll holder. At first we didn’t even know she’d done it – she was crying so we raced up the stairs, but the wound was on the back of her leg and there was no blood. It was only when I’d got her calmed down sat on my lap that she said her leg hurt and we turned her to look. I’m not squeamish but it was the most awful thing I’ve seen – suffice to say we were out the door to A+E with a clean flannel clamped over it very quickly. On first inspection we were told they thought it might need surgical input it was so deep, however one of the consultant’s examined her and said that it had missed the muscle by fractions and he thought it could be closed in A+E. Had she needed surgery we would have had to be transferred to the Children’s Hospital in Cardiff, as they won’t put her under or sedate her heavily without the back up of an intensive care unit. As it stood, she’d only finished her steroids a couple of days previously so they weren’t prepared to give her anything other than local anaesthetic. They put a topical gel on, but A+E was incredibly busy and unfortunately they left her too long so when they got to her again she ended up having to have local injected around the wound. She was absolutely amazing, really, really brave right the way through – I know how much I hate local anaesthetic. She ended up with 9 stitches, however the wound split when they took them out after 14 days so it’s still not fully healed now – she heals very poorly, one of the reasons why we’re looking to see if she has EDS.

We had our appointment with the genetic counsellor regarding the EDS in October and will now have to wait 6 – 9 months for her to be seen and examined by the consultant geneticist. The counsellor gave us no indication either way as to what she thought, however we did establish that there’s some ‘bendiness’ in both families and early onset arthritis on Derek’s side of the family, so we may not be barking up the completely wrong tree. We also had our long-awaited appointment to discuss her behaviour, and whilst it was said she’s not ‘obviously autistic’ she definitely does have a number of autistic traits and it needs to be looked at further. As a result, the educational psychologist has been asked to go and see her in school, and the children’s disability team have been asked to offer us additional support until the consultant sees us again in 6 months. There does seem to be a view with a few people we have talked to that due to spending a lot of time in hospital when she was younger, it may have produced some sort of slight social/emotional developmental delay – the 6 months is to see what, if anything, improves or changes in that time. For us, it’s just a relief that someone else sees what we see and acknowledges that there is something not quite right – for the last 3 years all we’ve had is people telling us she’s ‘fine’ and dismissing all our concerns. We also saw ENT a couple of weeks ago, and whilst she doesn’t have nasal polyps, the lining of her nose is very red and inflamed so she’s been started on a nasal steroid spray.

Health aside, Eloise is looking forward to getting back to ‘normal’ – she’ll be late returning to school due to her admission and she’s missed weeks of swimming, gymnastics and football due to both her health and her leg. All things considered she’s handled it all really well, however I know it’s unsettled her and she still doesn’t really understand why these things happen. We’re starting to think about what we’re going to do for her birthday in March and also looking at her starting things like min-hockey, karate and trampolining – she won’t be able to do them all, but even if we can’t resolve the breathlessness issues she has so much energy to burn that more outlets can only be a good thing!

Eloise had a good Christmas health wise despite being on antibiotics, although she seemed to struggle a lot behaviourally and emotionally with the changes it brought. Thank you so much to everyone who sent post in December – she received well over 100 beautiful cards and a number of lovely presents: craft materials, stickers, a much loved sleeping cuddly puppy, a beautiful hand-made skirt, a Barbie dress up doll book, a peppa sticker book… the list goes on and on. She received post from mainland Europe, America, Australia and Japan! The parcels included wonderful gifts from her two ‘Elves’ – thanks so much to you Laura, Rich and Doug Dog, and to Emma, John, Johnny and Harry (she very much liked that you thought she looked like a princess and she laughed out loud at the photos!). Also, thank you to Father Christmas’s ‘reindeer’ who took time out of their busy schedule to drop her a line – she loved receiving those letters. Whilst I’d love to thank everyone individually, there was so much post that it’s almost impossible to do, all of it brought smiles and was very much appreciated. I would however like to say a special thank you to all the school children who sent cards to her – she loved hearing about all the children’s favourite things so thank you so much. And also thank you for all the effort the teachers must have put in to encourage the children to make and write in the cards.

Eloise has received a vast amount of post since my last update and all of it has been a blessing and brightened some cloudy days: whilst Eloise is not ‘unwell’ at present, it’s very rare we go more than a week without there being some sort of issue or something becoming more problematic or changing. I will be posting a few photos to the Post Pals Facebook page once Eloise is discharged in a couple of weeks to share the smiles you’ve all brought.

Here’s hoping for, and wishing everyone, a happy and healthy 2013!

Update 19th October 2012

Following on from last month’s update, Eloise has remained fairly well, however there have been both bowel and chest issues on top of her routine admission for IV antibiotics at the beginning of October. She seemed to be getting quite blocked up again, so we did a weeks clear-out with an increased dose of movicol mid September, and at the time of writing the last update she’d just been started on 3 weeks secondary antibiotic for breathlessness and cough although was well in herself. The cough did appear to clear up and she stopped being so productive with physio with the antibiotics, which we were pleased about, however she remained more breathless than usual and even post IVs she’s still getting out of puff quicker than she was over the summer.

IVs were a mixed bag. She was admitted on the Monday and started vomiting and spiking temps on the Tuesday which lasted into the Wednesday, however by the Thursday afternoon she seemed back to her more usual self – our first thought was line infection, however it thankfully turned out to be a bug. About 6 days in she began coughing and bringing up a lot of mucus, however this settled down by the end of the admission. We raised concerns about her body temp again whilst in – over the summer she had been complaining of feeling really cold, sitting fully dressed with two blankets on when it was 28 degrees outside on one occasion, however we’d been told it was a bit vague in clinic at the beginning of September. Whilst on the ward she was complaining of feeling extremely hot too, her perception of her body temp swinging wildly within the space of a few minutes, however a couple of times her core temp seemed to have dropped: she’d been out playing in the ward garden on a fairly mild day with a coat on and when she came in she was dripping in cold sweat and her temp was 34.3! We’re now going to keep a temp record for a few days to see if she is having a lot of dips, particularly as a blood glucose reading came back normal during one of many cold, clammy episodes on the ward.

Other than the temperature issues, the rest of the admission went well and we did have a really exciting day when Eloise and I spent 6 hours filming with the BBC for a Children In Need appeal film to be shown on the annual night in November. Eloise was a little star, doing 4 or 5 takes of some things without complaint, and was given many compliments by the crew. Most importantly she loved every second, particularly when Pudsey Bear came to the ward! She also made a friend in Welsh star Sophie Evans (runner-up on ‘Over The Rainbow’) who was the special guest doing the piece to camera and the voice-overs for the film. I’m so glad we agreed to do it as she had an amazing day and is excited about the prospect of being on TV.

The dieticians and physios are happy with things at the minute, although some advice is being sort from a psychologist over the best way to handle her eating; at present she prefers to be fed – if you leave her to feed herself she won’t really eat which is becoming an issue. We’ve tried explaining to her that if she doesn’t feed herself she’ll end up hungry as we’re not going to feed her anymore, but she’ll quite happily hardly eat for 2 or 3 days when we’ve done this and obviously that’s an issue from a weight gain point of view.

We’ve a fairly busy month to come – we have an appointment regarding her behaviour on Monday (October 22^nd) and we’re seeing medical genetics on October 26^th regarding the EDS query. She’s having a SALT assessment to see whether she needs more speech therapy at the start of November, and no doubt we will be in cf clinic by the time I write her next update. The ENT appointment to see if she has nasal polyps has been cancelled, so we’re waiting on a new appointment for that.

Eloise has received some lovely letters, cards and postcards since the last update, she’s also received a colouring book, stationery from a couple of people, stickers, moshi magazines, face paints, a flying hamster (big laughs!) and Dottie post. So, in no particular order, I want to say a huge thank you to the following people for the last month’s post: Sarah, Stefanie, Karen, Alison, Jen, Heikki, Rissy and Harry (and lola!), Natashja, Hilary and of course Post Pals for the regular post, face paints and flying hamster – I have photos of a tiger prowling round the house to share with you when I get round to updating the facebook album. A special thank you goes out to pal Adam W and his sister Hannah for their post – she was really chuffed to hear from another Pal. I hope I haven’t forgotten anyone, and sincere apologies if I have, but I’d like you to know that all the post Eloise received this month has put a big smile on her face and made her a very happy little girl, which makes me a very happy and grateful mum.

Update 13th September 2012

Although Eloise is new to the website, she’s been an ‘unofficial’ Pal since around June, and quite a bit has happened since I wrote her story in the spring.

Things have been a bit mixed really and whilst she hasn’t been really unwell there’s been a lot going on with her health. Chest wise, Eloise has grown Pseudomonas twice recently – once in March and again at the end of April – which takes the tally to 4 for 2012, 7 in total since November 2010, and leading her team to conclude that she now has a chronic (permanent) infection. Whilst on the whole she remains pretty well with it, statistically it’s not good and we had always held out hope we would reach a stage where she could go longer than 3 months between routine admissions – that’s now very unlikely. She was seen in joint clinic on Friday and started on 3 weeks secondary antibiotics due to being breathless and having a slight cough, the assumption being it’s probably pseudo again. The good news is that other than her routine fortnight stays in hospital in March and June, and one other short admission, she’s not had any additional stays. During her admission in June she had a rather nasty allergic reaction to Ceftazidime which has been one of her constant IVs since she was born – not a huge problem as there are lots of others she can have, however the horrendous rash, swelling and itching were very unpleasant for her. She was so good at trying not to scratch, a real trooper as always! Her port has thankfully been behaving really well after she was really poorly with suspected line sepsis in March. Her next planned admission is for two weeks starting on October 1^st.

Bowel wise, Eloise is having continued constipation and obstructions in her bowel despite a massive daily dose of laxatives, and movicol clear-outs being required every 4-6 weeks, and ended up having a single dose of gastrografin during her admission for IVs in March and a separate 3 day admission for gastrografin in May. The first time we attempted to give her gastrografin she ended up vomiting most of it up so were prepared for the prospect of giving it via NG tube as this time it had to go down and stay down – it would have been hugely traumatic for her as for a good 18 months she had a total phobia around her nose and mouth after having a probe put up her nose for a pH study. Although it tastes absolutely revolting, she took it with very little fuss and managed to keep it down this time. It worked really well and thankfully cleared the obstruction, however the morning we were due to be discharged she woke up vomiting and lethargic due to dehydration – gave everyone a bit of a fright when she started being sick and keeling over sat on the commode, but in true Eloise style she bounced back very quickly and we managed to get home the same day. Over the summer she’s been tested for Crohns, Coeliacs and thyroid issues but these have all come back negative. She also did a 3 week stint on a completely dairy free diet in July to see if a dairy intolerance was a contributing factor, however this had absolutely no effect and the specialist team from Cardiff are fairly convinced that it is purely a CF issue. We are not quite so convinced and are debating whether to push for a referral to a gastro specialist, but we’re still waiting on an appointment with a geneticist to look at the possibility of her having Ehler Danlos Syndrome (she’s hypermobile, scars easily, heals slowly and a couple of other things that could be related) which could contribute to the extent of her bowel issues. The plan now is for more frequent use of gastrografin as this does work for her even if it is foul. As a result of her bowel issues, Eloise’s appetite is horrendous at the moment and no amount of chocolate will tempt her. She is eating, but in an effort to try and maintain (and gain) weight, she’s having a large volume of high energy drinks like Fortini and we’re now adding even more supplements to her food to increase the calorie content of what she does feel like eating. The good news from clinic on Friday is that despite her lack of appetite the supplements are working: she’s gained 0.5kg in 7 weeks which now puts her on the 25^th centile for weight, a position we haven’t been in for a long time. She’s actually gained more weight in the last 4 months than she did in the whole of the previous 18, which is fantastic!

Due to snuffliness, we now suspect Eloise has nasal polyps, which is a minor issue in the grand scheme of things, but does mean another doctor involved in her care. She has an appointment with an ENT surgeon in November to confirm if she has them and see what treatment they require. Dehydration has also been quite a big issue over the summer even though we didn’t have much warm weather – there was one day she had nearly 1500ml of fluids but the next morning she still woke up dehydrated enough to make her sick. Hydration issues aren’t too unusual in cf and her doctor’s think her bowel issues are probably contributing, so we’re now encouraging her to drink as much as possible and have increased her daily salt intake which does seem to be helping. Her behaviour issues worsened before the end of last term, probably because the holidays were approaching, and as it’s now having a significant impact on her cf care, the referral to see if she’s on the autistic spectrum has been brought forward.

Health aside, she’s really glad to be back at school and we’re fortunate enough to have kept the same support worker to manage her treatment. She’s back swimming, doing gymnastics and starting football training after school today – great fun for her but also really good for her chest! We had a nice two weeks away with family and at Butlins over the summer and have booked to go back next year – something to look forward to and she’s already talking about going to see the pantomime again it made that big an impression!

Thank you to everyone who has sent Eloise post over the last couple of months – it’s generated real smiles at a time when they have been few and far between. Amongst others, she’s had a huge selection of postcards, moshi monster stuff, stickers, letters, jigsaws, a felt elephant, a quilt through Project Linus, books, as well as colouring pens, a party bag from the PP summer party and of course, Dottie’s brother arrived with us in July. Spot is a very welcome addition to our family and has already been on a few adventures. I had made a list of what she’s received and who sent it, however this seems to have gone astray at the moment, so can I just say a huge THANK YOU to everyone involved in the running and organisation of Post Pals and to all the lovely people who send post to these children. We see first-hand the difference you are all making and it’s amazing.

We are very sad to say that Samantha passed away last night (15th April 2008) aged just 5 years old. Thank you to everyone who has taken the time to write to Samantha throughout her time on Post Pals. Sympathy cards can be sent to the normal address on Samantha’s page.

Samantha 18/03/2003-15/04/2008

Story written 2005

Samantha was diagnosed with Neuroblastoma Stage 4 on October 21st 2005 after intensive tests which included Xrays, CT scans, bone-marrow tests, blood tests, urine tests and a biopsy of the tumour was taken from her tummy.

This nasty aggressive childhood cancer which affects under 100 children in the UK each year has spread throughout her little body.

Over the next 6+ months our 2 year old little girl will have to endure intensive chemotherapy, surgery to remove the tumour and a kidney, Stem Cell Rescue (like a bone marrow transplant but Sam will receive her own bone marrow back, in stem cell form, which is like baby bone marrow seedlings) and further Chemotherapy.

Samantha or “Sammy” as we call her is such a brave little girl and the whole family is behind her to help her fight the cancer every step of the way. As parents our biggest task is to keep her smiling throughout and her spirits up, and would appreciate any help no matter how small with this as laughter after all is the best medicine.

Statistics will show that she only has a 25 % chance of beating this but as Cancer beater and Tour de France Champion Lance Armstong said “If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to hope? We have two options, medically and emotionally: give up, or fight like hell”.

Story update January 2008

We have found out that Samantha’s cancer has returned. She had been having pain in her arm which she is currently on Morphine for. An MRI scan showed a “large black mass” which is the Neuroblastoma.

Update 16th April 2008

It breaks my heart to write this, but brave princess Samantha passed away last night.

Update 12th April 2008

A huge thank you to each and everyone of you that has been kind enough to send Samantha an e-mail, card, gift, filled out her guestbook or have simply sent a positive thought her way. The love and support she has received is appreciated more than you could ever know. It is incredibly moving to think that she has touched the hearts of people in every corner of the world. What everyone at Post Pals does is priceless and really makes a difference to peoples lives. Each day when the post arrives, both Samantha and Louis are so happy to see they have mail and gifts. There have been several little cuddly toys sent which she insists sleep with her at all times.

This is an impossibly difficult time at the moment and it seems a little inappropriate giving daily updates on her condition which I am sure you can all understand and I’m also very aware that any parent of a recently diagnosed child with Neuroblastoma may one day be reading this site to find out more information, the most important thing to remember is EVERY child is different.

Update 6th April 2008

Samantha’s condition has worsened at a rapid rate as this truly awful disease begins to take over her tiny body.

Samantha is now back home and on morphine, although not in pain and she spends most of the day asleep. It’s heartbreaking to see her in this way and looking so ill. In only a week she has gone from being the life and soul of the party to a very poorly girl with black eyes and various lumps and bumps beginning to show and has very little energy.

Despite spending most of the day asleep and awaking very upset, every now and again she will return with a joke or a giggle. She really is an inspiration.

Update 5th April 2008

We have had the worst possible news.

Samantha’s Bone Marrow results have just come back and revealed the Cancer is everywhere and that further treatment or chemo could just make her worse and we may have to consider pain relief only so she can enjoy the time she has left.

All the doctors now agree that chemo would be pointless, and right now we feel so numb and in so much pain, trying to stay strong for both Samantha and her little brother…

Thank you so much for all your love and support, please continue to follow Princess Samantha and her journey.

Update 29th March 2008

Samantha had a Bone Marrow Aspirate on Monday, so we are awaiting results of this to see what we can do next.

As for Samantha how is, she of full of life, laughing, singing and smiling as always.

Update 5th February 2008

We have very bad news. Samantha’s Bone Marrow is full of Neuroblastoma, which means she is currently unable to have Stem Cell or MIBG treatment. She has started Etoposide chemo, and will scan again in a month’s time.

Update 9th January 2008

Samantha is currently on morphine for a bad arm. A scan showed that Samantha has relapsed and Neuroblastoma has returned.

Update 24th July 2007

Samantha has completed treatment and we now have a very anxious wait, hoping this disease never returns.

Her next scan is September.

Update 18th February 2007

Samantha is now back at Pre School and approaching her 4th Birthday. Currently taking Retonic Acid, she has a very, very anxious wait to see if she is clear from this nasty disease. She has won the battle but hoping to win the war.

Update 31st October 2006

Samantha is near to the end of her treatment; she has several months of Retonic Acid and has many scans on the horizon which we pray will show that she is NED! Please keep fingers crossed for good news.

Update 25th May 2006

I was having a difficult time with chemotherapy but I have been full of energy and having a great time recently. I’ve just got back from a little holiday. There is still Neuroblastoma in my bone marrow so I’m starting another 2 rounds of TVD chemo on Monday.

Update 7th March 2006

My Block 1 of 7 days TVD chemotherapy finally finished at around 6pm today which was a huge relief, but I still made it back home for 9pm, and made everyone smile as the first words to come out of my mouth when I opened the door were “HOORAY I’M HOME!”

Update 1st March 2006

It’s the first day of the month along with the start of my latest round of chemotherapy today in a bid to try and rid this nasty disease from my bone marrow once and for all. I am due 2 blocks, each block consists of 7 days of chemo, after this I will be taken for the usual scans to see if it is succeeding in reducing the cancer from my Bone Marrow. You may remember my previous treatment meant being hooked up to chemo for 24 hours at a time, so Mummy and Daddy were very worried at the thought of this stage lasting for 7 days at a time. However it’s not as bad as it first sounded because today’s chemo is only for 15mins, don’t get me wrong, it’s no walk in the park, but much better than we were expecting.

This chemotherapy is called TVD and is a new treatment so keep your fingers crossed for me this week as I fear as the week goes on we may have familiar tales of temperatures, blood transfusions etc.

Update 10th February 2006

Despite being dosed up on Morphine and Epidural I awoke properly at around 6pm last night and my first words were I Want Toys…..I want Toys….I want Toys…I Want Toys! It was quickly explained to me that I cannot sit up or move a great deal, so I settled down to a few books as a compromise and allowed Mummy, Nana Pam and Nana Diane to read a few lines each when I called their name.

So I can be monitored closely I am on a open ward which is very close to the nurses and have quite a few babies close by which I love as I love little babies, I’m not sure if Daddy is so keen on the crying through at night. Not that we got any sleep because every hour throughout the night I was woken up and asked to wiggle my toes, bend my legs and ice was rubbed on belly to see if I could feel it. This was fine upon until around 2am when even a patient girl like me got fed up with the routine. Imagine being woken up at 3am and told to wiggle your toes whilst you felt awful. I must admit to being a bit of a rebel and said no to all questions and simply requested that I wanted to go to sleep.

As for today I still feel a little groggy but guess that’s down to the morphine and epidural but at least I don’t feel any pain. Mummy was a little worried about me because I kept getting a little twitch in my arm today but I’m sure it’s nothing to worry about.

I’m quite excited about tonight though as word on the street is that Daddy’s friend Simon has dropped off loads of presents from people through Post Pals. I will thank you all properly tomorrow and let you know what I got and maybe even a picture of me.

Update 9th February 2006

Samantha returned after around 5 hours and is very sleepy; our little girl has wires coming from everywhere now. As you are all aware by now she has her NG Tube in her nose and 2 little wiggleys coming out of her chest but now she also has wires coming from her hand, foot and back too.

She is also on morphine and epidural to stop any pain caused from the operation, however enough of the bad stuff, you will be glad to hear that the operation went well and was a success. The team that was operating on her did not need to remove a kidney and they believe they removed the entire tumour which is fantastic.

Samantha is very tired and will be for a few days, but sure she will be back with a few stories of her own very soon.

Update 6th February 2006

Arrrrgh! This sickness is driving me nuts now, last night was my worst night and I was sick every single hour during the night. I can handle the sickness but getting no sleep is starting to get me down a little as I just feel tired all the time. Doctors think it may be the tumour lying funny in my stomach, so hopefully things will be much better after Thursday when I get this nasty tumour out of my little body.

We had some bad news today, as I have suffered a slight setback in my treatment. The Doctors have advised that the results of my Bone Marrow scan have come back and they are still showing traces of the cancer. This means that they will not be able to perform stem cell rescue (transplant) after the operation and I may have to endure more chemotherapy.

Over the next few weeks we will be advised on what treatment and options I have ahead of me, but feeling a little down, knowing even after my big operation, my uphill hill battle against Neuroblastoma still has a very long way to go. Not the best of days I’m afraid but not being the kind of girl to feel sorry for myself, I will just carry on with a song and a smile and feel more determined than ever before to beat this nasty disease.

Update 23rd January 2006

I’ve been very poorly lately with sickness and I have shingles. I have finished my chemotherapy and my tumour has shrunk, we are waiting to be told if my bone marrow is clear.  The Doctors said my big operation to remove the tumour will be on February 9th, so I’m starting to feel like my battle against this nasty disease is moving forward.

Update 30th December 2005

Samantha made it home Christmas Eve night and was able to wake up Christmas Morning and open her presents from Santa like most children. She was so happy, playing with her brother and even sat down and tucked into Christmas dinner at the table with everyone, complete with party hat. Unfortunately she had to return to hospital Christmas Day night and has been in and out since. Chemotherapy starts on Friday so it’s New Years Eve in Hospital.

Thanks to Georgies Fund for support, huge thank you to Lauren my Elf this Christmas who sent the biggest box of gifts from USA which had so much time and effort put into. Grafton Junior School, thanks to all the children who made Samantha Cards. Julie Barrett who made Samantha Pal of the month on her card making site and Samantha had so many cards everyday. To each and every person who sent a card, e-mail, or gift which kept Samantha smiling throughout a difficult Christmas in Hospital, thank you.

You guys really are stars of the brightest magnitude, I have witnessed first hand the joy and pleasure that you bring to a poorly child’s face and it’s a magnificent sight. Samantha was so sad some days but her smile lights up the room when we bring her cards to open of gifts from Post Pals.

We appreciate it more than you can possibly know, to put a smile on a child’s face is priceless.

Update 12th December 2005

Had my worse night yet since treatment began last night as my temperature remained over 38, Blood Pressure is still very high, sickness and diarrhoea all night long.

Despite being only 2, I’m a big girl and never wear nappies, however for the first time last night I had no control at all and had to wear nappies again, which is something I don’t like doing at all and got a little upset about.

Update 11th December 2005

I woke up in a great mood thanks to so many people at Post Pals who put so much time, effort and thought into sending me cards, presents and e-mails. I had so many special gifts I had a smile on my face all morning and will be thanking you all very soon.

My Post Pals Elf Lauren deserves a special mention for sending a HUGE box of goodies all the way from USA, there was lovely drawings and pictures all over the box and the thought that went into the box and its contents is appreciated more than you know. This also goes to everyone who sent cards.

In the afternoon, I became very poorly and my temperature rose to 38.9, I also became very sick and my infamous NG tube came out again. If that wasn’t enough I’m also having a nasty time with sickness and diarrhoea. I have felt poorly all day. Round 5 of Chemotherapy has wasted no time in knocking me back.

Update 9th December 2005

Mummy had a little scare last night when I appeared to have a reaction to my medicine or food again and went straight to sleep and awoke very teary. The Doctors kept me off my feed last night and monitored me closely but I’m fine again, so it’s business as usual today. Although feeling good, it time to prepare for yet another bout of chemotherapy again.

The Doctors also revealed that my tumour before treatment was approx 6×5 inches but the Ultrasound scan now shows it at around 3×2 Inches which is fantastic news as it shows the treatment is shrinking the tumour as planned. We are still awaiting the Bone Marrow test results though but I will keep you all posted.

Daddy’s friend tells me I have 2 massive parcels from Post Pals and loads of cards too, so quite excited about opening them too, sounds like some more fun pictures coming your way.

Update 7th December 2005

I was sick again last night and my NG tube had to be pushed back in for the 2nd time within a few hours, something that I don’t look forward to at all, my screams could be heard throughout the ward as it wasn’t very nice at all.

Daddy and me then slept until 09:15 am this morning, and I woke up to CBeebies with a song and a smile, so looks like I am in for a good day if that’s anything to go by.

A huge thank-you to the mum of Pal Daniel B, who sent me a lovely present. She very kindly brought me a lovely new doll, and we all know I have a soft spot for dolls, my new doll has been keeping me company in my hospital bed with me. Viks at Post Pals also sent me some cool gifts including a wicked glow stick which I had a good old fashioned rave with.

I hear that I have some more prezzies coming too! What a lucky girl I am, I will let you know as soon as I open them, YIPPEE!

Update 4th December 2005

Despite problems with my blood pressure I am home from hospital for the first time since November 5th! Having a great time playing with my brother and decorating our Christmas tree. I have to return to hospital at 8pm Sunday night to be wired back up to the machines again. I will be in hospital all week again as the Doctors will be performing various tests to see if it I am responding to the treatment, so keep your fingers crossed for me.

Update 26th November 2005

I can confirm that I have Chicken Pox! I have now been moved to a different hospital ward to my own room and not allowed to leave the room, so things could get interesting over the next few days when they try and stop me sneaking out to the playroom.

My chemotherapy (round 4) has been postponed at the moment and I am now on even more medicines to get me well again very quickly so they can resume treatment.

We are very sad to say that Rebecca L passed away on the 20/06/2008.

Sympathy cards can be sent to Rachel (Mum) and Josie (sister) via the same address.

Beki 10/09/1995- 20/06/2008

Story written 2006

Becky was diagnosed with Cystic Fibrosis at three months old. Becky is ten years old and attends Italia Conti, where she recently gained a scholarship in acting. Becky loves singing, dancing and acting and tries not to let her condition affect her daily life.

Recently she had to have an operation to repair a hernia, and surgery for a new port after her last one was damaged when Becky was in a car crash. She also developed a blood clot so is on medication for that which complicates her regular IV’s (antibiotics).

Update 22nd June 2008

It is with deep sadness and heartbreak that I have to inform you all that my gifted beautiful daughter Rebecca passed away on the 20/06/08 after a long battle with a C.F related lung infection. No words can express my deep heartbreak but I know I will see her again one day in heaven. Goodnight Beki Angel and the brightest star in the sky now. Love your heartbroken Mum X

Thank you for all the kindness and uplifting messages sent to Beki. Lots of love to you and each and every pal on Post Pals XXX

Update 17th June 2008

Beki is in intensive care at Plymouth’s Derriford hospital due to a lung infection that she hasn’t been able to fight off. We are all praying she will get better and wish to thank all those who have sent lovely uplifting cards for Beki as she loves to read them.

Anyone who wishes to send get well cards to Beki, please send them to:

Intensive Care Unit, Level 4, Derriford Hospital, Derriford Rd, Plymouth, PL6 8DH

Update 21st April 2008

Beki’s recent gastrostomy operation went well, though this past week Beki has had a chest infection/bug and she may need I.V’s.

Update 24th February 2008

Beki has to go to Bristol in March for an operation to fit a gastrostomy due to poor weight gain. Weight gain can be a problem with C.F sufferers so the gastrostomy should help Beki a lot.

Beki is keeping well and enjoying LAMDA at Italia Conti. Beki wants to get an agent so hopefully with some assistance financially, her dream may come true.

Beki has got her own playlist page on Myspace singing Avril Lavigne and Britney covers.

Lots of love to everyone who has sent cards and gifts and of course to all the other pals xxx

Update 10th January 2008

Beki is going into hospital for 2 weeks IV’s due to her not being able to shake off a chest infection. Beki’s in good spirits even though she’s going into hospital and is going back to dance classes on Saturday which she is enthusiastic about.

Thanks to everybody who sent cards and gifts over the Christmas period, they really cheered Beki up.

Update 31st October 2007

Rebecca had her audition for the hit show Britain’s Got Talent at Covent Garden on 30/10/07. Beki gave a sparkling performance of the song All That Jazz (Chicago). We all hope Beki gets through this stage to perform in front of Simon Cowell, Piers Morgan and Amanda Holden. We are keeping everything crossed!

Update 23rd October 2007

Beki has an audition in London for the show Britain’s Got Talent. She will be singing Rhianna – Shut Up And Drive. We will keep you all posted on her progress! Beki’s a lot better and will be going to Florida next month to swim with dolphins.

Thanks to all who sent cards and well wishes.

Update 16th October 2007

It has been a hectic few days as Beki went into intensive care here at Bristol. Not to worry though, as she’s now doing a lot better. Beki had bronchial spasms after her operation for a new portacath, as her O2 was a bit low. Beki’s getting back to her old self again and eating etc. You can send a card to Bristol Childrens Hospital Intensive Care Unit, though they will most probably move her to ward 35 tomorrow.

Update 14th August 2007

Beki has been to London Kings again for another operation involving banding of enlarged blood vessels as a result of Portal Hypertension (CF related). A new portacath is going to be fitted soon due to a breakage in her present one which was discovered at Kings. She has been in and out of 3 different hospitals.

Although Beki has had lots of things going on health wise she is happy and looking forward to going to secondary school and Italia Conti for new term. We are all being positive and hoping things will get better soon for Beki.

Update 25th June 2007

Rebecca has been airlifted to King’s Hospital with Portal Hypertension related to her CF which caused her to vomit blood and for blood to come out the other end at the same time. She has been in and out having banding to prevent further bleeds and she is back again next month on 5th July for further tests, banding etc.

Please send out love to Beki, she is a fighter. Thank you all at Postpals for the love and kindness you have shown Rebecca and all the children on Postpals. Love from Rachel (Rebecca’s mum).

Update 10th March 2007

Rebecca is being positive since her recent hospital tests and is carrying on with her dance classes which she loves. Thanks to everyone who sent cards.

Beki has been granted a dream holiday swimming with dolphins in Florida, planned for later in the year with Dreams Come True charity.

Update 18th January 2007

Beki has a few hospital visits this month to Bristol and Kings Hospital London. Beki has to have intensive scans to check her heart liver and spleen. Beki’s spleen has recently become enlarged, partly to do with the CF and also the aftermath effects of the car accident. We are all being positive and will keep you updated on Beki’s progress. Thanks to all who have sent lovely cards and gifts, my girls love them.

Best wishes, Rachel (Beki’s mum)

Update 5th January 2007

Thanks to everyone who gave cards and presents to both Rebecca and Josie at Christmas, also love and best wishes to all the pals, helpers and staff at Post Pals. Happy New Year to you all xx

Update 25th October 2006

Rebecca is to be one of the children starring in Plymouth’s Christmas pantomime, Snow White and the Seven Dwarfs at Plymouth’s Theatre Royal. Rebecca is thrilled to be starring on stage in this year’s panto with Linda Lussardi and Leslie Grantham. Rebecca got through the audition and only 8 children got through from 60 applicants. We are all very proud of Rebecca and look forward to seeing her in the panto.

Update 23rd August 2006

Becky is in for 2 weeks of IV’s again but is keeping well generally. It’s Becky’s birthday in 2 weeks and we are going to Alton Towers for the day for a treat.

Update 27th June 2006

Rebecca has been nominated for the 2006 Woman’s Own Children of Courage awards and will be featured in the July 24th issue magazine. Rebecca is doing well and practising for her show at the end of July along with her sister Josie.

Update 28th May 2006

I (Mum) have been in and out of the hospital as Becka’s in for her IV’s. Becky’s doing ok, she’s in for a routine visit and she can come home in between her IV’s; which makes life easier.

Update May 2006

Becky and Josie are in a summer local theatre show with Italia Conti in July, they are singing songs from My Fair Lady and other musicals. Becky’s has got 2 weeks of IV’s (antibiotics) starting on 22nd May. She’s a bit chesty and needs her IV’s but is not too bad other than that. She has now recovered from her hernia operation.

Thank you to everybody at Post Pals, I think it’s a wonderful site.

Nikita passed away on the 24h of December 2006. Thank you to everyone who sent her post.

Original Story:

Nikita was diagnosed with cancer in 1999. They removed the tumour and just under five years later it returned in her lung. She received chemotherapy for twelve weeks, and then one year later it returned in her pleura. They removed two thirds of her lung and part of the pleura, and Nikita had 5 weeks of radiotherapy. Seven months later it returned in the other lung. We decided to go to America for alternative treatment which cost £28,000. Her DNA was made into vaccines which were injected into her to try kill off the cancer, but nothing has worked. The doctors here in England haven’t given her long to live, but we will still keep going until we find a cure.

Update 11th January 2007

Nikita’s funeral was beautiful, she’s sleeping now with the angels and she is wrapped up warm in her quilt Post Pals sent. Thank you for everything you did for us, in the short time she was on Post Pals she had many smiles brought to her face and i will cherish those memories forever.

Update 24th December 2006

Nikita passed away this afternoon, she was a brave cookie and bravely bore until the end.

Update 21st December 2006

Nikita is still hanging in there, she is in hospital and struggling to breathe. She has very little energy but finds some when it comes to opening post! She also texts the lady (whose forwarding address is used) daily to ask what has arrived.

Update 12th December 2006

Nikita was taken in to hospital yesterday afternoon as her breathing has become more difficult and the pains in her back are becoming too much for her to cope with. At the moment she is very weak. Hopefully she will rest and be home with her mum and dad soon.

Update 7th December 2006

Nikita received her parcel today from the christmas postpal elf. In the box was a huge bear (i am attaching a picture for the site). Also in the box was a beautiful heart shaped cushion with a hot water bottle inside, 2 pairs of feather socks, and a little lilac soft and cuddly doggie. Nikita was over the moon with her parcel; please thank Lou on Nikita’s behalf. Nikita also received a few letters and cards, one was from Viks’ grandmother, and she was pleased.

On a sad note, Nikita is getting very weak and she is saying this is all too much. She is using her oxygen almost constantly.

Can i also just mention Cherie in FL, USA? She has sent many cards and little gifts that keep Nikita smiling. Cherie, thank you so much for all your prayers and thoughts, Nikita has gotten into a habit of waiting for your next letter.

Update 4th December 2006

Nikita is still unwell having had another infection causing her to spend a day in hospital for tests. Her breathing is becoming very rapid and shallow. She is now using oxygen often and has been given a wheelchair from the Red Cross so she can go outside without being exhausted after 5 minutes.

Her personality is still outgoing and flamboyant, and her character is happy and full of mischief and fun.

She has her weepy moments (although as any teenager does) I’m sure she understands what the doctors have said. When she is due anything in the post she says ‘mum do you think i will make it to Tuesday?’ (if that’s when her post is due). Tracey has found something on the internet written by a guy in New York who is now in contact and advising Tracey and Nikita on her diets and he has some promising results and testimonials that give us all hope.

Nikita is going to be a godmother for her friend’s daughter, she has to survive to be able to teach her goddaughter about hormones and boys, (and knowing Nikita a lot of mischief will be passed on too). Nikita has every reason to live at the moment, everyday is a gift, and every smile is another one to treasure.

Nikita has received many letters, cards and little presents this month, it’s almost as if she lives for her post at the moment. She looks forward to mornings; thank you to everyone, including the lady who sent the watch because Nikita loved it. Thanks also to the girl who cross stitched her card for the first time, Nikita was thrilled.

Update 29th November 2006

Nikita was taken into hospital again today as she is spiking another temperature, and her breathing is becoming shallower and shallower. Tracey said that although they didn’t actually say in so many words (the doctors) it’s a case of give up and go home. Anyway Nikita is home tonight with more antibiotics and her dad is picking her up a wheel chair in Melksham tomorrow from the Red Cross.

Update 22nd November 2006

Nikita received a huge box today from a balloon company and she is absolutely thrilled, inside the box there was an eeyore balloon and a changing colour pen with some other little bits and bobs. I cannot express the excitement and pleasure that came from our delightful friend so please pass on our thank you’s!