C/O 20 Marsh View,
Gravesend
Kent
DA12 2LZ
United Kingdom

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

Email Pal

Caitlin M's Parents/Guardians

Julie

Caitlin M's Siblings

Caitlin M's Interests

Playing with dolls, riding her new pink bike, numberjacks (CBeebies show) and anything pink and girly.

Caitlin M's Favourite Colour

Purple

Is Caitlin M able to read?

No

Is Caitlin M able to use hands?

Yes

Is Caitlin M visually/hearing impaired?

No

Does Caitlin M suffer from any developmental delay?

No

Story written 2005

Until Christmas 2004 Caitlin had been a healthy child with no symptoms of any illness. After 3 ear infections after Christmas she seemed to lose her appetite, didn’t drink and didn’t want to play. Shortly after finishing her course of antibiotics that didn’t seem to help, she developed a bag cough. After going back to the doctors they rushed her into hospital with pneumonia. After various tests and a blood transfusion they concluded that Caitlin may have an underlying condition but they were not sure if it was Ceiliac Disease or Cystic Fibrosis. With no CF in the family we felt it was highly unlikely.

One night she had a heart block, her heart rate plummeted through the floor and the doctors did everything to get her heart rate back up. It was very frightening as everyone believed we were going to lose her. Following day, after an ultrasound, Caitlin was immediately transferred as they had discovered a problem with her liver. She was moved to Kings College Hospital, London.

During the following 3 weeks various testes were done including two sweat tests. They carried out a liver biopsy and a bronchoscopy which eventually concluded the diagnosis of Cystic Fibrosis. A total shock for the whole family. She was immediately put on IV antibiotics, various medicines and creon (pancreatic enzymes) which she has to take with all her meals and snacks that contain any fat to help her digest her food.

Luckily her lungs are still in reasonably good condition but she has some liver disease which is consistent with CF- all be it very early.

Caitlin now takes around 8 medicines a day orally, a nebuliser twice a day, and has to have regular IV antibiotics every 3-4 months to keep her well. We have to do physio every day twice a day, this no longer involves back slapping but just energetic exercise, such as trampolining etc. It’s very important to keep her active so that her lungs can remain clear, the more she runs the more she coughs so the more stays off her lungs. It is a constant battle to keep her free from infections.

Later in the year she will have a portacath fitted to make her IV’s a little les traumatic. Caitlin also has a nasal gastric tube, she has an over night feed of high calorie drink to help build her weight up.

It has been hard to accept the diagnosis, knowing that the average life span is only 31 for a CF person, and that ahead lies possibilities of transplants of lungs or liver. Despite that, we try and remain hopeful and positive, enjoy our little girl each and every day and just try our best to keep her well.

She has been remarkable and takes everything in her stride. We are very proud of her. We have a great support network in hospital specialists and home nurses, so between us we will battle to keep her well.

Story update 2007

Caitlin is doing well, her liver has improved and she no longer has an NG tube.

Update 16th April 2008

Caitlin is currently well and has managed to steer clear of infections for the last couple of weeks. We are due to Kings at the beginning of May for an annual review with the CF team and with the liver team also. So fingers crossed.

We then have planned IVS on May 18^th so we are going to Kings again for our regular hospital admission.

Thank you for all of the wonderful birthday and Easter cards. Caitlin was overwhelmed and happy to have so many. Special thanks to the following people: Julie Barrett, Kate, Nicky, Liz, Maria C, Bernice, Callum and Emma, Helen T, Cara, Judith, Erin F’s nan and granddad and St Matthews Sunday school. Thank you to everyone who also took the time to send gifts, Caitlin loved them.

Update 1st March 2008

Caitlin is continually fighting off one infection and then another one starts. We have just completed 7 weeks of different oral antibiotics and we are due to attend the CF clinic again on the 12th March to decide when the next batch of iv’s needs to be done. We have recently began to try and stretch the amount of time between courses of iv antibiotics as up to now she has remained fairly well.

We are due for a liver review in March so, as always, we’re a little nervous as to what that might throw our way.

In herself though, Caitlin is her usual bubbly self, running around and not letting anything bother or faze her. I continually marvel at her bravery and determinedness.

She loves school, and doing anything outdoors. We have just started to take her swimming again which she loves too.

A lot of changes have been happening at home too, so it has been a difficult time for us all, but we are always sooooooo grateful for the cards, letters, gifts and emails that we receive for Caitlin. So thank you to everyone for taking the time to brighten her day.

Update 1st February 2008

Caitlin is currently well and we are continuously fighting off all the usual winter colds and trying to prevent chest infections. We are due to go to kings in London on 6^th February for a clinic review, to book impending iv antibiotics and liver review.

Our family has been through a tough year last year, but we are now looking forward positively.

Thank you for all of Caitlin’s wonderful gifts, we are always amazed by people’s generosity and are truly touched.

Update 9th May 2007

Caitlin is currently has yet another chest infection, which we are fighting with various antibiotics. Hopefully we will be able to fend this infection off without another session of iv antibiotics.

We are due at Kings College hospital in London on May 25th for her first annual review. This entails scans, chest x-ray, lung function and blood tests, as well as a thorough examination, evaluation of her diet and physio and medication review, so it will be a long day.

Caitlin is mainly doing really well, her liver has stayed normal and the disease has not progressed at the moment. She is running around trying to be a typical little girl. So we are enjoying the good days and riding through the bad ones.

Update January 2007

Caitlin has just had a wonderful christmas, she finished two weeks of iv antibiotics a week before christmas, but has already developed yet another infection, so we are starting her on another course of oral antibiotics. Her health has remained steady so far, have had some concern over her liver disease which is being monitered regularly. Caitlin continues her regime of several oral medications twice a day, liver medicines, nebuliser 3 times a day and physio twice a day. frequent clinic visits and hospital admissions are still regular and will be indefinatly. Its nearly two years since caitlins diagnosis and i know that everyone is amazed at her recovery from the pneumonia and since her treatment for cf and liver disease has begun her health has really improved she is like a different child now. Hospital staff are continually amazed at the fact she is still here with us after her bad start. She is a brave little girl of whom we are very proud.

Cannot thank everyone who helps and supports us enough, every letter and email, card and postcard i keep in a special box to remind us of how many people think of her.

Caitlin has now moved on from thomas tank engine and loves dora the explora and numberjacks, and anything girly especially jewellery.

Update 21st June 2006

Caitlin has now been on IV’s for almost 3 weeks. We went into Kings hoping for just a 3 day stay, but due to a reaction with an antibiotic and her liver we had to change to another one and were kept under observation until the friday. We were finally allowed home on IV’s and then going back to Kings the following week for blood tests and yearly review - e.g. lung function tests, swabs, general examination by doctors, physio and dietician. As she was still coughing, it was decided to keep her on IV’s for a following week.

We returned to Kings today for blood tests etc and were told that her liver bloods have gone up. They don’t think its anything to be overly concerned about, but they will let me know tomorrow what today’s results are.

They have also talked about a treatment called Dnase - it’s a nebulised enzyme that helps thin the mucus, loosening it enough for it to be coughed up - i know it sounds awful (!) but apparently Caitlin is still too young to bring anything up. Once she does though the benefit is that they will be able to test it and find out what infections she has got and treat it more accurately. Despite positive cough swabs, it is still thought that her lungs are already infected deep down with the pseudomonas bug - which you pretty much can’t get rid of once infected as it’s resistant to most antibiotics. Dnase will in effect improve Caitlin’s lung function and hopefully keep it from deteriorating too quickly.

Because Caitlin is starting Dnase, she will be entitled to a free Eflow nebuliser. These are brilliant - it currently takes us 20 minutes for neb colymicin twice a day - with the Eflow it will be down to 5 minutes! Her Dnase will take between 1-2 minutes and it is portable and not noisy - isn’t the art of technology wonderful? It will certainly make life easier for both Caitlin and me. She is not due to start this until September as all the paperwork has to be done.

Next hospital admission will be September 3rd - hopefully with another on the December 3rd as we are trying to make sure she is fit for starting school in January. We are also off to Darent Valley for outpatients’ clinic on August 16th.

I am just keeping my fingers crossed for tomorrows liver results.

Update 16th June 2006

Caitlin is now a year since Diagnosis of Cystic Fibrosis and Liver disease. She has made immense progress, she had put on weight so no longer has the NG feeding tube and the new medications have hugely improved her way of life. Caitlin is now a totally different child to a year ago.

Her lungs have already slightly deteriorated but her liver functions have improved. Caitlin is reviewed at Kings College hospital every 6-8 weeks with her cystic fibrosis, and every 6 months with her liver disease. Fortunately she has stayed reasonably well, although we are now on our 3rd week of iv antibiotics to clear an infection, and she had a bad reaction to one of the iv antibiotics recently so that was a fairly worrying time.

Caitlin is very brave and takes everything in her stride. We have now also just bought her an 8ft trampoline for the garden for physio time.

She is due to start school full time after Christmas but until then she attends a nursery every morning and loves it. She is finally trusting people again and making new friends.

We can never predict how or when the CF will really take hold, so all we can really do is make sure she stays as well as we can for as long as we can. We continue to live each day to day, and pray for a cure. We hope our little girl will grow up and do something bold with her life.

Post from Post Pals has made a huge difference to our lives, we know that there are people out there thinking about us and that brings us great comfort. A special thank you to Victoria for all the goodies she sends to Caitlin, she loves them.

Update 23rd December 2005

Many thanks to everyone who has sent Caitlin cards and gifts, we are truly touched. She is getting really excited about Christmas now, so touch wood she stays well for the next week or so.

Update 1st December 2005

Caitlin is doing ok at the moment, we have another clinic tomorrow at the
local clinic, she has a slight cough but is on strong antibiotics so we are hoping to avoid IV's before Christmas.

She's getting all excited about Christmas as its will be the first Christmas she will be well (hopefully) so will be able to enjoy it.

Update 14th October 2005

All went well with Caitlin’s operation. We went to Kings last Wednesday and they fitted her port on Friday. It’s already made all the IV’s so less traumatic and she loves her wiggly and her bessie bump, which is what we’ve called it.

Things are still manic as she is still on two weeks of IV’s, so although we moved down to our local hospital, I still have at least another 5 days sleeping at the hospital. We are now allowed some day release though.

All being well, the next course of IV’s will be in 3-4 months and they will hopefully teach me up at Kings to administer them myself, so it will greatly reduce hospital stays.

Caitlin is doing well at the moment although she does have her days and when you’ve been cooped up in a room with her 24/7 it’s hard sometimes. She can be challenging!

Anyway, your post always brings a squeal of excitement from her, and we are really grateful for all the lovely things you send.