Our Pal - Alicia R

Story written 2010

Alicia was born a healthy baby and we had no idea about the Cystic Fibrosis until we took her to Peru when she was 4 months old. She became sick immediately and spent 5 weeks in hospital there before we were flown home as a medical emergency. The next 5 months were spent in Great Ormond Street Hospital in P.I.C.U. At that time she had numerous operations including a hickman line (in and out!), Nissen’s fundoplication (which has since been redone twice) and a gastrostomy which was then taken out aged 3, but at age 6 she had another put in.

Once we got her home (a week before her first birthday) she did well until she was about 3 and a half when it was decided she needed to have IV’s every three months, so she had a portacath inserted. This kept her well for a while and they even extended it to be every 4 months.

Since January 2008 things have gone downhill. Alicia spent more than half the year in hospital with one admission to Great Ormond Street, then 2009 came and it was decided that Alicia should have permanent IV’s at home and be assessed for lung transplant. The hospital admissions became slightly more managed and less emergency, though we did have one blue light run to Great Ormond Street, plus suspected swine flu. At transplant assessment, it was decided that Alicia did not need it yet.

Now in 2010, Alicia’s hospital admissions are every 6-8 weeks if we can make it. Home IV’s, physio twice daily, a cocktail of medications, supplementary feeding, and overnight oxygen all continue as normal. While Alicia does go to school and manages to keep up most of the time, her timetable is shortened and she hasn’t done a full day since September 2009. Alicia is being statemented on medical grounds.

Alicia has got to the stage where she is fed up with it all. She doesn’t like going to hospital, doesn’t want to take her medicines (they are often found in the toilet!) and just wants to be normal. Because she had been so sick in 2008, she missed a dream holiday to Lapland but we are hoping to have a holiday to Portugal this summer – fingers crossed!

Family update January 2016

It’s nearly five years now since Alicia died, seems like yesterday and we miss her terribly.  Nico is now in the last year of primary school, which is hard as Alicia never got that far!  Can’t believe secondary school is looming and before we know it GCSE’s!! Nico remains sports crazy and we seem to live on one type of pitch or another. We got to go to one of the rugby World Cup games last year which was amazing, especially seeing the NZ Hakka live!
Thank you to everyone who continues to write to Nico, especially Bev, Kim, Marjolin, Toni, Connor & Karen. It still brightens his day when he gets home to his letters.

Family update January 2014

How can another year have gone by since Alicia left us? So much has happened that she has missed and we miss her more and more everyday. Nico continues to love his rugby, football, judo and swimming. He is a sportsman in the making, though once full contact in rugby comes into play I may stop him playing!! He is doing better at school and I think is coping better because Alicia’s friends are no longer around so he doesn’t get reminded so much. He loves receiving the lovely letters and cards that he is sent by the amazing people on Post Pals. It is a lifeline for him and keeps him smiling. So much support is lost when a sibling dies and to still have this is fantastic. I can’t thank you all more on his behalf.

Family update September 2012

Well I can’t believe it has been over a year since I have written one of these, and what a year it has been. A HUGE thank you to everyone that continues to write to Nico, it makes such a difference and keeps a little smile on his face. So many things ‘finish’ when your brother or sister dies, but to continue receiving post makes such a difficult time slightly easier for him. Nico loves his Dottie letters and also the Moshi stuff that he receives too.

A gigantic hole has been left in our lives since May 2011 and it will never be filled, but we try to continue onwards. We have had some lovely times and did manage to go away last summer with Nico which was lovely. This summer we have been watching lots of sport and even managed to get some tickets for the Paralympics which was a great day out.

Nico is going into year three and this should have been his first year at school without Alicia as she would have been starting High School this September. He struggled quite a lot at school last year and I hope that this year will be easier for him. He is very excited as he has Alicia’s old teacher this year so I hope that will help him too.

Update 17th May 2011

We are very sad to say that Alicia passed away today in hospital with her parents by her side. She was friends with Daisy N, and Daisy’s Mum Stephanie says;

“Alicia’s courage, determination, strength and will to live was such an inspiration to everyone who knew her – she embraced life and when she was not in hospital she lived life to the full going to brownies, school, holidays with her family, bouncing on the trampoline with her brother. I know Alicia’s family would want you to know how much comfort they all got from the support of Post Pals and how it made both Alicia and Nico smile.”

Update 5th May 2011

What a great April we’ve had! Only one outpatient appointment and the rest of the month at home or on holiday!!

The end of term went well for Alicia and she managed to take part in the class play at the end of term and attend the last week of school. She also passed her grade one in riding so felt very pleased with herself. Then it was the holidays and we had lovely weather and a restful time for the first week and then for the first time in about 4 years all four of us went on holiday together, on the same day!! Yes, we managed to get to Switzerland and had a fantastic 5 days there with our friends. The weather was fantastic and we managed to get around quite a lot of the countryside, plus a few days in Zurich. Alicia did struggle with the altitude at times but we had oxygen so that was fine.

We got through the holidays and Alicia went back to school full of beans last week. We have her transplant review on the 19th of this month.

I had hoped to just have a happy update, but unfortunately not. Alicia has to be admitted into hospital today for another lot of iv’s so here we go on the roller coaster again! Fingers crossed we don’t end up at GOS again, but we shall see.

Thank you to everyone who sent post to Alicia and Nico last month and made a lovely month at home even lovelier!! You all know who you are without writing all your names (plus the list is at home!!) and you’re all very special. Thanks for all the lovely Easter cards for both Alicia and Nico. There’s still so much chocolate in the house we’ll be eating it till Christmas!!! Thank you very much for all the lovely things we have been sent to make and do this month too.

Update 13th April 2011

Well March was a hard month as we spent most of it in hospital. Alicia couldn’t seem to shake of the chest infection or what ever it was that really knocked her down. The doctors were baffled and as usual with Alicia the tricks that normally work with other patients didn’t work with Alicia! Eventually we were discharged on the 25th March from Great Ormond Street having been in there 5 weeks and 1 week at our local before that. Alicia got to school for the last week of term so that she could see her friends again.

We’re now on holiday and hoping to get to Switzerland to visit friends next week for a few days. As usual everything is in place and we’ll wait and see if Alicia makes it with us!! So far it’s looking ok but who knows? Hopefully the holidays will help Alicia refresh herself and make it back to school next term!

We have to have a reassessment for lung transplant next month which is a shame as we normally have this annually but it has only been 7 months since the last one, so they obviously thinks something is not great.

Thank you to everyone who sent the children such wonderful post whilst we were in hospital, it made Alicia’s room very colourful and kept Nico from getting too sad. Thank you to Mandie, Vicki, Fiona, Jane, Claudia from Germany (Nico was really pleased and wanted to know if you lived near his cousin who lives in Bremen?!!). Thank you for Nico’s memories book, we are slowly getting through it! Nico looks forward to each letter from Dottie and loves hearing from him – one day we will write back.

Thank you to everyone who helps with Post Pals, it is truly amazing how a small card can make children smile.

Update 5th March 2011

Well, we have not had a good February. Alicia has been in hospital since the 14th and got transferred to GOS. We have been there for 2 weeks. At first they thought it was a line infection but everything has come back negative which is great news as she has only had that line for 6 months!! So it is just a really bad chest infection. For the first week she couldn’t get out of bed and was on 10 litres of oxygen 24 hours a day. We have now weaned that down to 3 litres 24 hours a day but obviously we need to get back down to zero oxygen, and that seems a long way off at the moment!! They are talking of starting steroids to see if that helps. We have also been started on Bi pap to help just before physio. This seems to be working so it looks like that will be another thing that I will have to add into the mix on a daily basis! Oh well, if it keeps her out of hospital. She is really fed up in herself and I can’t wait to get her at least to the local hospital so she can see friends again which would be great.

Hopefully March will be better, so fingers crossed.

Thank you for the lovely Valentines cards, they loved them and made Alicia’s admission to hospital the same day a bit brighter. Sarah thank you for you crafty bits, they have made hospital more fun! Jane, the teddy is lovely! Jenny, Nico loved the game and hasn’t stopped playing it! Kim, Alicia’s box was superb and she has had fun with all of it. Samantha, we haven’t got round to reading the book but she loves it. Sheely from Florida, the crazy bandz are great and have been swapped and worn. She loved the Hello Kitty bits from Soila in Finland too, so thank you everyone. Thank you also to St Mary’s School in Bishop Stortford for their letters and also Cheltenham County High school for their letters in December, sorry its late!! To Davorin Jenko Primary School in Slovenia for their FANTASTIC cards and letters that they sent a long lime ago, but the pictures are still all over her bedroom!!!

Thanks to Post Pals for making our present situation more bearable and brightening up our days and Alicia’s hospital room!!

Update 2nd February 2011

Well my last update was just before a GOS appointment and this one is just after a GOS appointment. We had a really good appointment today; her lung function has gone from 27% three weeks ago to 44% today! Her weight has gone up 1.1kg in three weeks and generally they were really pleased with her progress! So much so that she has been discharged tonight after three weeks on IV’s – hip hip hooray! There had been threats of another week, going on bi-pap and all sorts. Thankfully we have by passed that stage for the moment (our thoughts are with Jon Paul and his family, we had a couple of years when we were lucky to be out of hospital for 2 weeks and I hope he gets over the worst soon).

We have had an ok month despite Alicia being in hospital for most of it. Nico’s birthday was lots of fun and Alicia was allowed home for the weekend so we didn’t have to go back and forth to hospital. Alicia’s school statement has finally been approved so we can now get her the help she needs in class. We also had a weekend down at the hospice which was really relaxing and we all had a great time.

Alicia is looking forward to going back to school and seeing her friends again.

February should be a quiet month and hopefully hospital free. We are not due back to GOS until the beginning of March and then they want to admit her at the end of March – fingers crossed she lasts that long!

Thank you once again for all the post and smiles that my children have received this month, it really cheers them up and makes their days. I hope we have written all our Christmas thank you’s, but if not, I’m really sorry and will do my best to get them done as soon as possible. Thank you everyone for all of Nico’s birthday cards and birthday gifts. Thank you Jenny for the camera, Alicia’s had lots of fun taking photos!! Mandie, your letters and gifts were wonderful. She loved the Jacqueline Wilson book. Thank you to Charlotte and Vicki too for their gifts. Thank you to Kati and her family from Finland for the cards and stickers. Alicia loves getting post from Finland because it is where her cousins live. She would have written back but there was no return address, so thanks again and from Nico too for his stickers! Post Pals has been great putting smiles on my children’s faces in a normally depressing month! Thank you everyone.

Update 12th January 2011

First and foremost Happy New Year to everyone who reads this. Thank you to everyone who takes the time to make all the Pals smile, especially my two! We received some lovely cards, letters and gifts during December, words cannot thank everyone enough. To who ever wrote Nico’s reindeer letters, they were amazing and he is still talking about them, and who was the fastest and who could watch tv through his antlers etc etc. The icing on the cake was the Rudolf card and amazingly this came last (I say amazing only because of the problems we had here with the post in December!). Each letter was eagerly awaited and we all read them with laughter. Fantastic, thank you. I can’t remember the post mark on the stamps, but I hope you’re not being affected by the floods at the moment, if you are I hope and pray that everything will turn out ok in the end for you and the family. Alicia also received some fantastic birthday cards and presents so thank you.

We had a great December and for once everything went to plan! Birthday celebrations passed off (10 girls watching a movie and X Factor! Lots of fun with 2 sleeping over!). Then term ended, but we had a minor threat of hospital admission before Centre Parcs which also threatened Christmas, but that was put off as she improved. We had a lovely break at Centre Parcs with some friends and then a quiet Christmas at home which is the first time we have all been together for 4 years!

Term has started and she is very well, holding her own and happy to be back at school. We had three days in hospital last week for her to have her bone medicine and she sailed through that which was a relief as it can make her sick. The only downside is she has stopped eating so her weight is plummeting (2.5 kgs in three weeks) and this will probably mean an admission soon!

… A few hours later. We have just come back from a day admission at GOS for a kidney function test and review by the CF team and we’re now sitting in hospital at the beginning of a two week admission! Boo Hoo! Her lung function was down to 27% so they have said we have to come in to try and improve this. She had a rough day there and is now fed up, especially because she feels she will spoil Nico’s birthday (next week) by being in hospital for it. She always thinks of others before herself. Fingers crossed it will only be two weeks and everything will go smoothly.

Thank you everyone who continues to support our family and make us smile, you’re amazing. Thanks for all the lovely Christmas cards that we received for both of the children. Also for Alicia’s birthday cards. Words cannot thank everyone enough for all the lovely thoughtful gifts that both Nico and Alicia received this month. Sarah, the brooch is beautiful, Vicki, Adam W, Holly and the elf who sent the Ben 10 Lego, thank you so much. Thank you Amy for the dream catcher. Mandie, as ever words cannot say thank you, even the envelope gets admired by all! A letter is on the way! Everything has been made, used, listened to, and put to its use.

Update 1st December 2010

November has been a quiet month really. Alicia was in hospital from the 3rd to 19th and thankfully this was a run of the mill visit. We had a clinic appointment at GOS and they have decided that she needs to have a break from her home IV antibiotics. This is great as it means she can go swimming and have as many luxurious deep baths as she likes, but also very scary for me. Mainly because it is winter and December is a busy month for us, what with birthday and Christmas, and I do my utmost every year to keep her out of hospital for these two events (and have only failed once!). Added to that, this year we are going to Centre Parcs too… recipe for disaster. Well, she has stopped the antibiotics and so far so good. I am hoping to be proved wrong and that she will continue to do well. Please keep your fingers crossed.

Since coming out of hospital she has been back at school and loving it. This is the first year she has been out of hospital to enjoy the snow and is making the most of it.

December as usual holds parties, festivities and Christmas in store. Hopefully it will be a quiet and well one! She is singing in the Carol concert at school and looking forward to that, as well as getting in as much swimming as possible before they decide to put her back on her IV’s.

Let me take this opportunity to thank each and every one of you who send post not only to my children, but also all the children at Post Pals, and to wish you all a very Happy Christmas/Happy Holidays/Happy Festive Season and a wonderful and healthy New Year.

Thanks this month for the lovely cards from Davorin Jenko Primary School in Slovenia, so much time and trouble was spent making them and they are all beautiful and their English is fantastic. Hello Kitty featured highly in the cards this month – how to make a girl smile!! Thanks to Lucy for the lovely name made out of beads and Jayne for the clock, snow globe and pen, it will all compliment her pink sparkly bedroom! The snow globe is waiting for a picture of her birthday party! Thanks also to Post Pals for the choccie parcel. Thanks too for Nico’s stickers.

Update 7th November 2010

The end of the month was fairly uneventful. Not only did Alicia get her ‘pen license’ at school (which means she can now use fountain pen rather than pencil at school) but at half term assembly she also got a headmistress special award for being in school every day for the whole of the half of term!! She hasn’t done this since late 2007 so everyone was really pleased for her and she felt pleased too. However it has taken it out of her and she was very tired by the holidays. We had planned to go away but I decided to cancel and let her rest at home for the week and hopefully put off the inevitable hospital admission. Our hospital appointment was cancelled. We had a lovely week at home and had lots of fun with our Halloween gifts; they had two Halloween parties and went trick or treating. We even got to meet Jacqueline Wilson one day which was fantastic!

Alicia went back to school on the Tuesday after half term, but by Wednesday I knew I was pushing my luck, so we decided it was time for all good things to come to an end and she went into hospital on Wednesday night! Her lung function was down to 35% so it was time. She was upset, but understands and actually it’s a good time for her to have a rest so that she is fully recovered in time for December (birthday and Christmas and weekend at Centre Parcs, fingers crossed!). She got sent a lovely quilt from Lovequilts so that has gone in with her and she is getting used to being spoilt by the nurses again! We have just had a weekend down at Chase, the hospice where she is cared for, so that was a nice break from the hospital routine and a rest for all of us. She will probably be in hospital for at least two weeks (that is the minimum time) unless she doesn’t get better and it will be extended. We have an appointment at GOS this month which is a CF clinic, but they are also doing tests to see if she has diabetes so we may find out then if she does – just another thing to add into the mix really.

Thank you once again to everyone that sends both of the children post and continue to put smiles on their faces! Thanks for the lovely Hello Kitty cards from Laura and Sarah and the 2 cards from overseas! Amanda and Alicia could be sisters they like so much of the same things! Sarah G your letters keep us laughing out loud, we all love them so much! Thanks to Mandie once again, she loves your post. Thanks also for the Halloween gifts from Post Pals and Sian, they were great and we had fun making them. They both loved the bracelets from Donna, thanks. She is going to make the peg dollies this week and thank you Mary for those. Emma, thanks for the notebook and your note to me (mummy) too!

Update 18th October 2010

September was a surprisingly quite month. I spent the whole month waiting for Alicia to end up in hospital as she has done for the last 3 years, but no, she has now not been in hospital since she was discharged on 12th August to come to Portugal!! This is now the longest she has been out of hospital in 3 years and is doing really really well! It is also the longest consecutive number of weeks that she has spent in school for 3 years, she has almost done half a term! All of these may seem like small things to many, but for children like Alicia it is a miracle! She did however say to me last week, “When am I going to hospital?” I asked her why and she replied “I think I’ve been at school too long now!!” It just goes to show that you do get institutionalised even at 9!

Not only did Alicia manage to finish the 7 1/2 mile sponsored walk (well she cycled) but she lead from the front the whole way round and her dad had to run to keep up with her! We managed to raise loads of money too which is great.

Nico started his Judo class and loves it. He has settled into year 1 well, though has been worrying that you have so much more work to do now at school and not enough time for playing!

Even though we’re half way through October now, I will update at the end of the month, especially as we have hospital next week which may change things. But just to say she has to go into hospital for 3 hours everyday for Tues, Wed and Thurs of this week to have an IV infusion to strengthen her bones as she has osteoporosis and they are trying to stop the deterioration of her bones. She has to have this every 3 months and we are a month late, purely because they were waiting to do it at the same time as she was in hospital but she hasn’t been in so we have to now do it as a stand alone treatment. The medicine tastes revolting (even though it goes through her veins she can taste it!) and makes her really tired. I’m worried because the last time she had it as a stand alone treatment she got really poorly and ended up in hospital! I suppose all good things have to come to an end!

Thanks this month to Mandie for your wonderful gifts again and for remembering Nico! To Rachel, Alicia loved the Tinkerbell stuff. To the person in Finland, thanks again for the Hello Kitty stickers and Kate W thanks for yours too. Helen and Hayley, we’ve made and sent the cards already and thanks for the other bits too. To Sarah, your letters make us all chuckle, thanks!

Thank you Post Pals for making my children smile and all those other children too!

Update 10th September 2010

Well, best laid plans never turn out right! We were in GOS having Alicia’s lung transplant re assessment and that went really well, she doesn’t need listing this year. This is fantastic news and we could at last get excited about going to Portugal 2 days later! Saturday morning we were packing to go home and the doctors came in and said she couldn’t go! Typically, she has had a port a cath for 6 1/2 years and never had a line infection, but the day before we’re due to fly to Portugal she gets a fungal infection in her line and so she can’t go! We decided that Nico and I would go on to Portugal (we were going with her granny, aunt, uncle and cousins too!) and if she was allowed she would come out later. A week of iv antifungal drugs and the line had to come out but she got discharged from GOS at 5pm on Friday and at 9am on Sat was in Portugal! Hooray! Well done to daddy for sorting that so quickly! So she got a week of her holiday at least! Since the line came out she has been better than she has been for the last 6-8 months and surprisingly her lung function has been improving instead of deteriorating like normal. She has been making the most of not being on her iv’s daily and we have swum loads as this is something she can’t do all the time because she can’t swim when her line is accessed. She has also had loads of deep baths and pampered herself, as she can only do that every two weeks normally. It’s the small things in life really!

The rest of the holidays whizzed by and we had a lovely time. All too soon it was over.

For the first time in 5 years she got to start school on the same day as everyone else as she wasn’t in hospital and she was really happy about that. She has also managed a whole week in school and is only in hospital now because she is having her port put back in so hopefully we won’t be in for long! She seems to be loving being in year 5 and long may that last.

We wrote a list yesterday of thank you’s for all her post and of course left it at home! Off the top of my head here goes; thanks to Mandie for the photos, dvd, stickers, pencil etc, Sarah the beautiful necklace (her comment on seeing it was ‘how did she know my birthstone?’, Poppy the poodle, what a lovely letter, Kim and Viks and someone (no name on the card) from Finland who sent cards! Her cousins live in Finland so she was very excited about this! Mike for the email, and I can’t remember who sent her the pencil case kit, but thanks. To Jane, thanks for the animal jokes and card. I hope I have all of this right – like I said it’s all off the top of my head. Sorry if I have missed anyone or attributed the wrong name to a gift or card, I have a memory like a sieve! Nico loved his doorbell, thank you! It has really cheered Alicia up getting all this post and she feels very special and loved. I thank you all too as it is so nice to see a smile on her face again!

Well, what does the next month hold? Hopefully out of GOS this weekend. She should have started her Diamond riding tomorrow, but we will see. She was really looking forward to that but as always… best laid plans! No planned admissions for the moment for iv’s but we will go back to her home iv treatments. We are doing a sponsored walk for CF in two weeks time, 7 1/2 miles round Richmond Park which hopefully she will walk the whole way, no mean feat for her, but we will take her buggy just in case! Needless to say Nico will probably run the whole way, chasing the deer!

Alicia is out of theatre now and all went well. Port is back in and a sleepy, grumpy, but brave girlie is lying next to me! Thanks for all the wonderful work you all do!