Together for their Tomorrows

Imagine being friends with people you’ve never met? Maybe not so odd in this day and age with everyone being so very online but ok, imagine you had some mum friends who you could talk to online knowing your children could never meet. Children of all similar ages who would no doubt raise the roof and have a whale of time together but because they all have cystic fibrosis they can never be near each other. Sad huh? Support for those in the CF Community is pretty much all online. If your lucky enough you may find a local mum similar to you who you could meet up with, I am lucky to have this too (Hi Louise!) But everyday I chat to five other mums who I met in an online support group.

As individuals we have all done so so much in terms of fundraising for The Cystic Fibrosis Trust but have now decided to come together as a team to see how much we can raise collectively and keep raising awareness for CF.

This year we take on Great Strides 65. No mean feat indeed. All of our efforts are now being publicised on our Facebook page so consequently all of my CF updates will now be on that page too.

If you are on Facebook please pop along and say hello, like our page to keep up to date with all of our training and fundraising and most importantly to see how our gorgeous little CF’ers are doing.

Check out our page here.

Sponsor us here.

Find out more about cystic fibrosis and Great Strides 65 here.

First Nebuliser

Following on from a bronchoscopy aged 20 months, Harriet came home from hospital with a new addition to her treatment regime, a nebuliser. Like with everything else, at first it looked terrifying and complicated and I was never going to be able to use it. Three months later I can safely say that I was, as usual with these things, worrying over nothing! D-Nase or Pulmozyme is an inhaled drug which thins the mucus in the lungs. At the time of its release it was seen as a major breakthrough treatment for cystic fibrosis patients so it can only be a good thing.

Generally people are a little older when they start it but because Harriet has been so plagued by virus after virus it was agreed she would start. There is some concern over whether children this young (Harriet is two) can inhale the full medication properly but I think, for the most part, she does now. Certainly in the beginning she didn’t. We had to start by just wafting it in front of her face then slowly built up to getting the mask right over her mouth. We did this gradually and it took approximately three or four days. At the time of her getting D-Nase she really loved bubbles and she would shout and ask for bubbles all the time. Because of this we decided to call the nebuliser her bubbles and four months later it has stuck!

We were told to do this treatment at least half an hour before her percussion physiotherapy so we decided to do it at tea time after she had eaten and was still in her high hair that way there was no escape! Four months down the line we still follow this routine unless we have evening plans and sometimes it suits better to do it before her morning physiotherapy session. We are not yet at the point where she will sit and hold the nebuliser herself. She has tried but won’t keep it still. It has to be held in a horizontal position so as not to spill the liquid contents. I know of a few little ones who, aged two, can do this so hopefully one day soon Harriet will too. Not that I mind doing it at all but she likes her independence and for a while anyway would see it as a novelty to administer it herself!

The cleaning process of the nebuliser is quite specific in that it all has to be washed immediately after use in warm soapy water. We are not able to touch the filter part so need to be very careful. The individual parts are then all laid out on kitchen roll to air dry over night. I know lots of CF parents do things their own way but we just do as our team have suggested. We also sterilise it in a steam steriliser which has been a godsend.

The vials of liquid come specially delivered to our house from Lloyds Healthcare which is great. We get a phonecall to arrange delivery when we are running low and a text message the day before with a time slot. We are so lucky as some people have to collect theirs from their hospital. Someone has to be in as the drugs need to go straight in the fridge too. The nebuliser we use is an E-Flow Rapid and takes two or three minutes to work, again we are so very lucky to have a really new machine as some parents have ones that take up to ten minutes to deliver the same drug. Certainly a challenge to get a two year old to sit with a mask over their face for ten minutes plus! It also comes with a mouthpiece but I really don’t think we are even close to Harriet being ready to use that. For now, she will happily have the mask and that is good enough for us.

In terms of its success, I can’t say she hasn’t caught anymore infections than normal but on the other hand I would hate to take it away and for her to be even more prone to infection. It is a very expensive drug and we are so grateful she is able to have it. If we had to buy the nebuliser (some CF parents have) it would cost approximately £600! The drugs themselves cost approximately £20 per day so not a cheap treatment at all. This really scares me as cystic fibrosis patients have to pay for prescriptions when they reach adulthood in the UK, a law decided when not many people with CF made it to adulthood. Another matter that needs to change.

Hopefuly this post will help some when they too are faced with another addition to an already complicated treatment regime, it’s really no big deal I promise!

Read how we became CF parents here.

To learn more about cystic fibrosis and ways in which you can help click here.


Harriet is Two!

I can’t believe that Harriet turned two last week, seems like she’s been here a lot longer as she really has packed a lot into two short years. She has had three major surgeries, a bronchoscopy and about a million viruses! Throughout all of this though she has remained a very happy and content little girl. In fact she was so content that she decided not to bother with walking until she was twenty-two months old. In typical Sod’s law fashion, a few days before she had to have bloods taken to test for all forms of muscular dystrophy she started to walk. Now, aged two she has just mastered jumping, much to her delight as she had been trying for a few weeks! Really good news for us now though as she can start on the trampoline which is great physiotherapy for her.

A few weeks ago Harriet had her second annual review. These appointments are in a normal CF clinic but take that little bit longer. A regular clinic appointment generally takes about an hour as we sit in our own rooms and staff come to us to prevent cross infection. After being weighed and measured we see a nurse, physiotherapist, dietician and a consultant but for annual review bloods have to be done and a chest X-ray. This time was the first time Harriet stood up for her x-ray and she was so good! In fact I couldn’t believe just how cheery she was all day with everyone who came to see her. She had been in a phase of being not so happy for members of the CF team to check her over so hopefully this is a thing of the past.

The whole review went really well. She had gained weight and height. Her blood results showed that her vitamin levels were really high so we have to drop another supplement which is fantastic. We are, however, picking up another antibiotic for the winter called Septrin which will hopefully prevent her picking up as many coughs and colds as she has done in the last year. Fingers crossed! She is also doing really well with her nebuliser that she started in June. She has her ‘bubbles’ once a day, usually early evening before her night time physio. We are so lucky that she is so compliant, for now anyway!

In terms of Harriet’s development she is really coming on a treat. She can now put words together to form sentences, not so great when she’s shouting ‘mammy juice NOW!’ She is enjoying one day a week at nursery, especially this last week as she got to take a birthday cake in and everyone knows just how much she loves her puddings. She is now trying so hard to run, she will count herself down then try to speed off but her little legs just can’t quite get there yet. She looks hilarious trying though.

For her birthday we are having a little party with family and friends. We are also taking her to see Frozen on Ice with her big sister and I can’t wait to see her little face. She is so very excitable, she squeals with joy just spotting a cat in the street so I’m guessing she’s going to be off the scale excited seeing Elsa and Anna.
Over the last two years we have been through so much as a family. There is a lot to learn still about cystic fibrosis but we will keep going, keep on raising as much money and awareness as possible while bringing up two beautiful girls. We will do everything we can to achieve a life unlimited for our our daughter and everyone else with CF.

If you would like to read more about cystic fibrosis and find out how you could help click here.

Check out last years blog post from when Harriet was one here.

Never just a cold…

This is going to sound really awful but when my eldest daughter was smaller I would rarely bat eyelid if she had a cough, cold and snotty nose. As far as most parents are concerned it’s just par for the course when kids are building up their immunity. How totally and utterly rubbish to then fear the most common, pathetic of illnesses. To us they’re a chore, I just have no time for colds, so annoying. For someone with cystic fibrosis, however, a cold can be potentially very dangerous. Cough and colds can lead to hospital admissions for IV antibiotics and cause irreversible lung damage which we cannot have happen. We need to keep Harriet’s lungs in pristine condition.

Since Harriet was born I can honestly say she has caught every single cold and virus going and then some. Six weeks is the best run we have had in two years without having a cough which is a pretty depressing fact. Every time Harriet gets a cold or cough she has to go on extra antibiotics, more medicine twice a day on top of all of her other medicines. Since the start of the year Harriet has started to follow quite a regular pattern of illness which is both baffling and exhausting. Every two or three weeks for the past eight months Harriet will catch a virus of some sort. She will always start with a dry cough and anyone who knows me will have certainly heard about it! Once the dry cough starts it is incessant. For two or three days and nights we do not sleep, we sit up all night while she coughs without any respite. There are no gaps or breaks inbetween the coughs, it is literally NONE STOP.

I defy any loving parent to lie in bed all night and listen to their child going through this without going in to comfort them. I say comfort, in our case she sits in our bed and watches the iPad while I try to cuddle her! She doesn’t get distressed at all, unlike me, who has in the past taken her to hospital when this first started happening. It is clear that she cannot sleep for coughing so I am certainly not going to make her try. I have discussed, or rather moaned at great length about this to our CF Team but no one knows why this is happening. Our team are really only involved if Harriet gets a wet cough, those are the troublesome ones, so at first we thought she may have recurrent croup. After two or three days of the dreaded dry cough it always then turns wet. Again, sounds awful but as soon as it goes chesty it is so much more manageable. She will then barely cough and can actually sleep all night. We were given a blue inhaler to try with the dry cough but we have found it provides little, if no relief.  So puzzling, if anyone in the CF community has experience of this please get in touch!

We have to be thankful that throughout all of this Harriet has never been unwell with each virus. She is always full of life, happy and a joy to be around even when she’s not sleep for days- unlike me! Because we have followed this pattern for such a long time now, Harriet is going to have a winter antibiotic called septrin. She will take this daily throughout the winter to try and stave off any viruses. I have high hopes as I do not know how much longer we can keep up with these all nighters every few weeks! Fingers crossed for us it does the trick and breaks this awful cycle we are in.

If you’re reading this and have a cold maybe spare a thought for those with CF and be thankful that in a few days you will be back to full health. After seeing what my daughter has been through in her two short years and how she deals with it all so well I try to never moan or complain (much!) again. I read somewhere that one persons cold could be another persons hospital admission so please think of the vulnerable people around us and try to keep your germs to yourself! 

If you would like to learn more about cystic fibrosis and ways in which you could get involved please click here.

Our Summer 2016

I feel like this summer is in someways our last hurrah. I am returning to work after two years out, my eldest daughter is starting school and Harriet is starting nursery. Gulp. As always my main reason for updating this website regularly is, for the most part, to raise vital funds and awareness for cystic fibrosis. I do, however, like to show that despite having a child with CF, happy family life can still go on.

Travelling with someone who has chronic condition means you never pack lightly but who does with small children anyway?! Our first trip was to London which was just incredible, I want to sell everything and move down there! We did all the typical touristy things; red buses, Buckingham Palace, The Natural History Museum and Hamleys. The girls had such a great time and can’t wait to go back…Christmas maybe?!

We travelled to The Lake District to visit South Lakes Safari Zoo. We totally lucked out with the weather and spent a glorious afternoon out on a boat on Coniston before visiting the zoo the following day. I guess the clue is in the name but it really wasn’t what I had imagined at all! My nerves were fried walking amongst all kinds of creature big and small with two little children but they loved it!

My year just wouldn’t be complete without our trip to Flamingo Land either and we managed to squeeze that in at the end of the school holidays. The perfect way to end our Summer even if poor Harriet got stung on the nose by a wasp!

In terms of travelling with CF medication for more than just a day trip I do struggle with dealing with unfamiliar set ups. At home we have a cupboard full of neatly organised medicines, tablets, syringes, nebuliser etc. When we have been away there hasn’t always been access to a fridge to keep the refrigerator only things in but there’s always a solution. In London we just had a Tupperware box with our names on which was kept for us in the fridge. Yes, a pain when you schlep two small children all the way up to your room the realise you’ve forgotten to collect the medicine on route (!) but a small price to pay when everyone is having such a good time.

I also miss my steam steriliser so much! Boiling kettles to sterilise everything can become a bit of a pain but in the grand scheme of things worth it. We will continue not to let CF control our lives and keep fighting till a cure is found for our little girl.

If you would like to read more about cystic fibrosis and find out about ways in which you could help please click here.

Team Harriet: The Great North Run 2016

Time is slowly ticking away and before we know it the day will be here of The Great North Run. One of the worlds most famous half marathons set in our beautiful home territory. Last year we had four runners who between them raised approximately two thousand pounds for The Cystic Fibrosis Trust, how good is that?!

This year we have four runners again taking part to help our beautiful Harriet and everyone else in desperate need of a cure for CF. First up is Harriet’s Dad, Chris. Now, he will be the first to admit that training has not gone as well for him this year! So much so that he claims this year will be his last- worth a sponsor for that alone. I have no doubt that he will get it together for the actual day and pull off a respectable time. Last minute Larry that he always is!

Secondly, we have Harriet’s Auntie Emily, virtually a veteran GNR runner now. This will be her second year running for The Cystic Fibrosis Trust and I know she will do well and support her brother along the way too. Third up is Harriet’s godfather, Chris’s best friend and all round lovely person, David. Now I’m expecting big things from David who is super fit and will no doubt find this years run a doddle. Lastly is our my best friend’s husband Adam. Like David, Adam is an experienced runner who is going for a personal best this year and there is no doubt in my mind he will achieve that.

We appreciate any support for our cause so much but when people offer to run a half marathon for your little girl, well that really is something else. I get teary just thinking about Team Harriet running all that way in the hope that one day we can all say we were a part of a cure for cystic fibrosis. Last year was such an amazing day, we will be there just up from The Robin Hood Pub with our CF Trust banners supporting all runners but saving our loudest cheers for those wearing their yellow vests.

Chris, Emily and David have a joint JustGiving Page as we all know and would ask a lot of the same people for sponsorship. Collectively they have to raise £1000 and at the time of writing this they are sadly nowhere near. Please, please consider donating what you can. Our runners are doing all the hard work it is much easier to press a few buttons and donate a pound or two.  Click here to support.

Anyone who knows Adam and would like to support and thank him for raising money for our cause please click here.

Huge thanks to everyone who has donated so far, we continue the fight against cystic fibrosis to ensure our daughter lives a long, happy and healthy life.

To read more about cystic fibrosis and find out about other ways you could get involved click here.

Harriet’s 21 month Update

The last few months post IV’s have been so good for Harriet. Following her stint in hospital for a bronchoscopy and subsequent IV antibiotics her health has been stable which is just what we want! She did come down with another cough six days after being discharged but that soon settled with a course of azithromycin. This medicine seemed to work the quickest of all she has ever tried. Looking back over the first half of 2016 I’m not entirely sure how we got through it! It has been a pig of a time. Harriet was getting sick every few weeks and we were in an awful cycle of coughing all night, sitting up all hours desperately trying to get some relief for her but couldn’t. Because of this at her last clinic appointment we were given an inhaler to use with her if needed. I knew that once I got something to try to help it wouldn’t happen again though and touch wood, so far I was right!

The last clinic went really well; chest clear, swabs clear and weight gained! We were so pleased. Harriet had lost a little weight the last time and I take it so personally, silly I know but I am sure every other mother would feel the same. I had gone back and forth deliberating with her eating. She happily eats sweets, puddings etc but we have always struggled with savoury. My sensible head said she shouldn’t really have pudding if she isn’t eating her main meal but after the weight drop I let this go and decided to let her have whatever she would eat. Thankfully this hasn’t done any harm as she has gained weight and lately has surprised us all by trying so many different savoury foods! Hopefully it was just an awkward phase and she will now continue to go from strength to strength with her eating.

Another big change to our routine was the introduction of a nebuliser. While in hospital, Harriet started on D-Nase twice per day initially then dropped to once. Obviously it was new and scary for her at first but gradually she has accepted it. We tend to do it after she has had her evening meal so she is still in her high chair – no escape route! She loves bubbles so that’s what we called it at first and now it has just stuck. She will even ask for her bubbles once she’s finished eating! Whether her improvement in health is down to starting D-Nase, who knows but I for one am glad she is on it now!

In terms of Harriet’s development her speech is coming on in leaps and bounds. She can count to ten, enjoys making animal noises correctly and enjoys to sing and dance. She went to watch her older sister in a dance show and loved every single second! She stood up in her chair dancing the whole time! She is, however, still not walking. She can do it and we are making progress every day but it is very slow. She will walk when she feels like it and we have been told by health professionals that now it is purely a choice issue. She chooses to shuffle on her bottom as she knows she can get to where she wants to be faster than walking. Anyone who sees me on a regular basis knows just how frustrating this is for us as a family. I have almost given up taking her to the park as she refuses to walk and thinks she can scoot along the ground. Groan. So many tantrums have taken place after she won’t walk so gets put back in her pushchair to watch her sister run around playing.

Harriet will be two in October and starts going to nursery in September as I am going back to work. She will only be there one day a week but naturally I am very nervous about handing over her care to others. I will do her medicines, nebuliser and physio treatments at home so while at nursery the only medication to do will be her creon (enzymes to help her digest food with a fat content.) Harriet’s nurse will also come in to speak to staff before she starts so I know she will be fine and no doubt enjoy herself but it is naturally going to be difficult for me at first. She has her first visit this week so wish us luck!

If you would like to learn more about cystic fibrosis and ways in which you could help click here.

Fundraising Update

Just a brief update from me this week as I am currently drowning in exam papers but needs must! We have a few things coming up and ongoing campaigns that everyone could get involved in. Firstly, if anyone is looking for something to do today please head down to Harton Quays Craft Market. It is located just along from The Customs House in South Shields with lots of stalls selling crafts, handmade gifts and tasty treats. As ever, my lovely auntie will be there selling her wonderful artwork for The Stuart Gordon Fund. The weather forecast is good so definitely worth a trip, we will be there too supporting.

We continue to collect stamps for The Stuart Gordon Fund too. Please keep yours, ask family and friends, workplaces etc. Every little helps. We have recently received large donations from some of my neighbours and the chemist we use for all of Harriet’s medication so thank you to all involved.

We have a few people signed up for The Great North Run this year so any sponsorship would be fantastic. Monies collected here will go to The CF Trust. My husband, sister-in-law and Harriet’s godfather have set up a page together to save the same people sponsoring each individual and we also have a good friend of ours running. Please click the links below, takes very little effort, unlike running a half marathon.

Finally, July 1st is ‘wear yellow’ day in the UK to raise money and awareness for The Cystic Fibrosis Trust. If you haven’t already please text YELLOW to 70500 and donate £5. The only way we are going to beat this disease is to keep going. To keep raising awareness, keep raising funds. Harriet managed six days out of hospital before she got sick again. This is not good enough. Please help her to live a long and full life unlimited by cystic fibrosis.

To sponsor The GNR Team click here.

Help Adam reach his target for the GNR and click here.

To read more about cystic fibrosis and more ways to get involved click here.

First Admission for IV’s

When I think of a two week course of intravenous antibiotics I imagine being hooked up to machines for hours on end and a person looking very sick indeed. How wrong was I?! While Harriet was still under general anaesthetic the doctor placed a long line in her arm into which her medication would go. I was shocked to find out that it was one syringe, just like her oral meds done at home, but connected up to her line and pushed in. Took all of a minute maybe! So we were in there to have that done three times a day and around those times we could come and go as we pleased.

After a few rough nights following the bronchoscopy, things settled down and we got into the routine on being on the ward. I have nothing but praise for the staff, they really do everything they can for you. Harriet’s morning and evening medicines were all brought in to us, the physio would come to do her percussion and she had access to every toy imaginable. I had made the mistake of going and buying books, new crayons and activities for her beforehand and was blown away by the amount of resources on the ward. All the toys were so lovely and clean too which made the neurotic in me happy!

When the weather was nice we went out into town, even getting a free pizza one evening. Chris said he is going to bandage Harriet up in public more often! We did alternate nights at the hospital where inevitably Harriet was an angel, sleeping through everything for Dad and then not for me. So unfair! In all of this our older daughter, who is four, was such a superstar. She just goes with the flow, went about her daily routines going to nursery then not complaining once when she had to go backwards and forwards on the metro to the hospital. She is such an amazing big sister to Harriet.

All in all it certainly wasn’t as bad as I had expected. The beds for parents aren’t great but at least we had our own room with our own bathroom and a nice view of one of the old university buildings. Harriet got to try some different foods while in there and managed to gain some of the weight she had lost previously. She did really miss her sister though and one evening after she had left for home with dad, Harriet bumshuffled the length of the corridor to the exit and stood for ages calling her name. Even when we went into the city centre and passed the metro station she would point at it and cry saying ‘toot toot’ as if she wanted to go home!

Finally, when her cough stopped we were able to come home. On top of all of her usual medication we now have a nebuliser to use once per day to help thin her mucus. We also have a months worth of extra antibiotics to run alongside her prophylactic dose so fingers crossed it does the trick. The bug she keeps growling, haemophilus, had gone on her most recent two cough swabs so hopefully it has been eradicated. We have to take heart in the fact that despite such an awful run of luck there was nothing sinister to report from her bronchoscopy and that gives the clearest picture of what’s going on in her lungs. We are all so happy to have her home and long may it continue.

If you would like to learn more about cystic fibrosis and ways in which you could help click here.

First Bronchoscopy

Preparing yourself and more importantly, preparing your child for a hospitalisation is never going to be easy. At nineteen months old, Harriet had to have her first bronchoscopy. Sadly, we are no strangers to theatre as she was born with meconium ileus and had to have surgery at only five days old, awful. Handing her over again at six months old for a stoma reversal was awful and this time was truly awful too. Never gets any easier. If you have read my previous post, preparing for a bronchoscopy, you know the reasons why we have got to this point; persistant coughing plus growing haemophilus, twice!

Alarms were set early as Harriet wasn’t allowed anything to eat past seven am. We decided to fill her up as much as possible before then and she was only allowed water after that. Thankfully she’s not too fussy and we find when she does have a bug or cough her appetite dwindles anyway. Big sister was happily packed off to Grandma’s for a day of fun and we headed up to hospital. The wait was long, we had hoped she was going to be first at 1.30pm but it was around 3.30pm when she was called. We had managed to keep her going and entertained all day so by this point she was desperate for a nap and fell asleep in my arms five minutes before walking over to theatre. I just prayed she didn’t wake up until it was all over! Only one parent was allowed into the room where she would be put to sleep so I carried her in, still snoozing! The anaesthetist held the gas mask near her face and she stayed asleep, it could not have gone any better. I still cried when they told me to kiss her goodbye and had to hand her over and walk away. Any parent who has had to do this will know just how horrible it is.

Luckily our room on the ward was ready so we could go and unpack for our potential two week stay. Theatre staff would ring when Harriet was coming round and we would be escorted back down to see her. I overheard a phonecall which seemed to be about her but the nurse looking after us wasn’t there so we would have to wait. The poor staff in theatre couldn’t wait though, after a few minutes I heard a commotion outside the room and there she was being wheeled up! She had kicked up such a fuss on waking that they brought her straight to us! She’s so funny!

For a while she seemed fine, a little pale maybe but happy to watch Frozen for the billionth time. Our consultant came round to tell us that they hadn’t found anything suspect in her lungs which is just the best news. She had a little area of extra secretions which they sucked out but other than that all good. We were told she could spike a temperature and possibly vomit that night but she was doing great. The plan was to do ten days of IV antibiotics and start DNase, a nebulised solution which thins mucus, twice per day.

After a while Harriet became increasingly clingy and just lay on me cuddling in. She gave me quite the shock when she vomitted all over me! I’m not used to it as she’s never been a sickly child. Thankfully it was just the once and she settled again. In terms of coughing she still seemed quite bad. A bronchoscopy can stir things up and this was certainly the case on day two. At around 6pm the following day she started coughing NONE STOP. She did not stop until 6am! We sat up all night watching the iPad, watching Frozen, watching birds on the university roof opposite, we saw it all. After this my husband and I did alternate nights! Everything settled after that night though so I think it was all down to the procedure.

Watching your child go through this is never going to be easy but it is the best way to find out exactly what is going on. I do hope that we don’t have to have another one for a long time, if ever. The only way to try and stop this from happening again is to keep raising awareness and funds.

If you would like to read more about cystic fibrosis and ways in which you could help click here.