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365 days later…

One day at a time

 

A year ago today our whole world turned upside down.

A year ago today we were told our daughter has a brain tumour.

It is 9:30pm on Friday 8th January 2016 and I remember exactly what we were doing this time last year. We were sat around a bed on one of the children’s wards in St Georges Hospital, London following an MRI scan. My whole body was in shock. Nothing felt real except for the fear that was slowly rising inside me. Eleanor looked fine, she couldn’t have a brain tumour. Every nurse that came near us may as well have been speaking another language, nothing made any sense at all.

Fast forward a year and that fear remains. Sometimes I can box it up, push it to the back of my mind but sometimes it creeps up on me and those are the days that feel long and frightening. With chemotherapy treatment comes a lot of forward planning but beyond those hospital appointments I take each day as it comes and do my best not to look too far into the future. It is something we have so little control over so why worry before it happens!

Despite the tragic news that was given to us on that day, the past year has given me an insight to a world I never knew existed. A world where love and support is offered in incomprehensible amounts, a world where family, friends and complete strangers rally to raise money for a little girl some have never met, a world where old friendships are rekindled and existing friendships wither, a world where families who have nothing in common but a poorly child are forced together and create unbreakable bonds in the confines of a children’s hospital.

Many of the things that initially caused me worry following Eleanor’s diagnosis are now second nature. I understand the medical terminology that was so daunting at the start, I understand what it means when her blood counts are low and the signs to watch out for which may mean she needs to be taken to hospital. I understand the importance of hygiene and healthy eating. In some ways our lives have settled, but in to a new kind of ‘normal’.

In terms of the tumour, as far as we can see, nothing has changed in a year. The most recent scan revealed its stubbornness and despite almost a full year of gruelling chemotherapy it has refused to budge a centimetre even with the change in drugs half way through the year. This is the reality of this type of tumour – the cells are slow growing and are not attacked by chemotherapy in the same way fast growing malignant cells are. We are playing the long game here… there are no quick fixes!

It’s been a tough year for all of us, Eleanor especially, her poor little body and growing mind have been put through so much change; starting school – which is daunting enough for any 4 year old – losing her eyesight, all the needles, tests, drugs, doctors, nurses, hospital stays and yet, in the face of adversity our amazing, incredibly bright and bubbly little girl has shone like a beacon of hope every single day.

If it was even possible I love her more than I ever could have imagined right now. She makes me see the best in every day, she takes everything in her stride and brings sunshine to everyone who is fortunate enough to be in her presence. She is an inspiration and I pray she never loses her sparkle.

 

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Happy New Year – may 2016 bring health and happiness to you all.

Kelly x

Keep your hair on!

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ThaIMG_8248nks to the wonderful work of the Little Princess Trust and the team at Raoul Wig Makers in Paddington, Eleanor now has a beautiful blonde wig made of real hair and it looks amazing. She has had so much fun flicking it about!

A big thank you to everyone, you’ve made a very smiley 4 year old even smilier!

 

Limbo…

I haven’t written for a while, nothing much has happened to be honest. Eleanor has started school now and has settled really well making some lovely friends, the school is great and her teaching assistants are incredible. She is excited to go in every day and skips out smiling every day. It is such a relief and I have even braved my first children’s birthday party! Go me!

We are now ten months in and this is probably the calmest and most uneventful period so far since her diagnosis. Strangely it’s quite unsettling, I almost feel like I am waiting for something to happen. When you have had ten months of ups and downs you can’t help but feel anxious during a time of calm,

At the end of September, Eleanor had her first dose of Cisplatin which included a three night stay in hospital. Cisplatin was one of the drugs Tim was given back in 2004 and we had a long period of anxiety on the run up to the treatment date due to the  very unsettled night Eleanor had when she was given the Cyclophosphamide treatment back in August. The Cisplatin treatment was given over two days, 3 hours on the Friday and 3 hours on the Saturday with constant fluids from 3pm on the Friday until 9pm on the Sunday.  She was also given anti sickness medication every 4 hours to try and reduce the horrid sickness associated with Chemotherapy.

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The weekend went smoothly, Eleanor went off her food on Saturday and said she felt nauseous when her dinner was put in front of her but despite everything we were expecting, and had been told, she wasn’t sick once and she slept through the night all three nights. I had a couple of wet beds to deal with due to the constant fluids but I’d take a wet bed every hour rather than Eleanor upchucking her stomach contents!

A smooth weekend by all accounts – much smoother than the weekend went for the England Rugby team I am sure! We even had a magical delivery of a talking interactive unicorn and a pair of stunning shoes from Meg and Jean, the founders of Believe in Magic direct to Eleanors hospital bed! Thank you ladies, you really know how to make children feel special!

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The results from the last MRI show that Eleanor’s tumour has remained stable and unchanged. When we were told the news I didn’t get upset this time, I must have been expecting it. I am thankful there is no growth, but deep down I want some magic to happen and at the next MRI scan I will be praying for some change, even if it is just a tiny bit smaller, just something, something to show that the chemotherapy is doing more to her body other than making her immune system non-existent and her hair fall out!

On her current protocol she has 8 months of chemotherapy left, after that we are told they just scan every three to four months to monitor the tumour – we watch… and wait. I’m so unbelievably nervous about this time and my emotions are totally conflicting. The thought of her not being on chemo anymore seems like a dream, it takes over your life completely and there is a worry that surrounds us every time she gets a slight temperature, but at the same time the anxiety levels are going to be sky high while we ‘wait’ for each scan and ‘wait’ to see if the tumour starts to grow again… and if it does, it’s probably straight back on the chemo to stop it.  I have so many questions for her oncologist next time I see him, I hope he is prepared!

The next MRI is on the 30th November, please keep your fingers and toes crossed for us. We could really do with some positive news!

x

Think like a proton

Hair today…

 

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No sooner had I said “We are amazed that she’s kept the majority of her hair” Eleanor’s hair started to fall out. The day I had been dreading since she was diagnosed 9 months ago.

At the end of the first ten weeks of treatment her hair began thinning and I thought it was the start of the downward spiral but this was something else. She lost the majority of her hair in just over 2 days and it was everywhere! If you so much as brushed a bit off her face you’d end up with a handful, in the mornings it was all over her bed and pillow, I needed to hoover her car seat after each car journey and we were even finding it in our food!

I’m making light of it but in actual fact I’m devastated. It’s just another filling in this sh*t sandwich, the gift that keeps on giving! Her poor body is fighting so hard but the treatment really is taking its toll, it takes time for her body to recover after each treatment and by the time it has her three week break is over and it’s time for her to be blasted again.

A few days after it first started to come out Tim and I sat and talked with Eleanor about using Daddy’s clippers to ‘tidy it up’ it was starting to look terribly thin and you could see her scalp! She would sit and pull bits out, the confusion on her face when she tugged and it came out in her hands was really upsetting to watch.

When we felt the time was right we had another chat with Eleanor and with her consent we got the clippers out to take the remaining wisps off. She had one last long piece of hair hanging from the back of her head so I made a little plait and cut it off before we all sat together in her room

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However tough I had imagined that moment to be, it didn’t even come close to how it actually felt. It was agonising. She kept reaching out for us, tears running down her face. We asked if it was hurting or uncomfortable and she replied with a heartbreaking “No, I’m just sad”

“It’s only hair… it will grow back… she’s still beautiful… it means the chemo is doing its job…”

I’ve heard it all.

Yes, It is only hair and yes, it will grow back but right now, every single time I look at my daughter I am reminded of her illness. I can never forget, not even for a second.

Now she looks like a ‘cancer kid’ and if I thought her symbol cane was a neon sign, boy was I wrong! The sight of a bald little girl is like a shining beacon of interest for almost every single person we come across. Most smile and carry on but some actually stare, opened mouthed! We even spent an entire meal out with three kids on the table next to us staring at her. They even turned in their chairs and ate their food looking in our direction the whole time.

Now, don’t get me wrong, I know kids are inquisitive and you can’t get cross when it happens but when the adults are doing the same it’s hard not to feel uncomfortable.

So here she is. My precious, brave, courageous little fighter. Still smiling.

Still Eleanor.

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The world is not a wish granting factory…

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There are a number of reasons why but I’m really struggling with everything at the moment. Eleanor starts school in a few weeks. The whole idea absolutely terrifies me. At the moment she only goes to nursery two mornings a week, in her protective little bubble where the teachers care a lot for her. They know her and treat her the same as they always have, before she was sick, before she lost her eyesight. Sending her off to ‘big school’ feels like I am removing her from this protective second family. I know she will be absolutely fine, she is extremely excited and wants to wear her new school uniform every day. I’ll remind her of that when she is 16 and wants to burn it! I also know that her class teacher, teaching assistants and everyone else at the school will be amazing and she is going to get so much out of being there, so it is hard to explain why I have this rising feeling of anxiety inside me.

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This should be a really exciting time, but I am not excited. I am petrified. I am already worrying myself about how life will be for her at school. Will she be left out because she can’t do the same things as all the other children? How will I cope if she comes home and tells me no one wants to play with her because she can’t see? I’d love to think that this wouldn’t happen but we all know how honestly cruel kids can sometimes be. I am already worrying myself about birthday party invitations, especially at a soft play centre or park. Do I politely decline and say we have other plans that day or do I take her and highlight the fact that she can’t run around and play like the other children. I can’t take my eyes off of her, so while all the other parents are sat bonding, talking and making friends, I would be climbing over foam castles and stopping other children from bowling my unsuspecting daughter over. Coupled with that, Eleanor, being on chemotherapy has next to no immune system, so soft play centres are like sending her into a biological germ warfare zone!

All of these worries and stresses are, in the grand scheme of things, pretty insignificant. Our main focus should purely be on Eleanor’s health but her mental well-being is so important to me. I desperately want her to be a normal 4 year old and do all the things normal 4 year old children do.

I hope this anxiety fades once the school terms starts, things always seem worse in your head and perhaps I’m focusing on ‘worst case scenario’ to protect myself.

I know the world is not a wish granting factory, but if I had just one at the moment (aside from the obvious), it would be for her to enjoy school. I want her to be able to look back in years to come with fond memories and have loyal caring friends around her, just as I am fortunate enough to have.

What goes up…

We’ve had a wonderfully busy and fun week of smiles, laughter and endless excitement but as with everything in life, what goes up, must come down, and it unfortunately ended with Eleanor starting her second cycle of chemo in this consolidation phase. The cycle where the new drug Cyclophosphamide was introduced. Unlike what we’ve been used to this drug requires an overnight stay in hospital, so additional intravenous fluids can be administered. 3 hours of fluids, followed by an hour of chemo and then a further 12 hours of fluids along with a drug called Mesna. Cyclophosphamide is a bladder irritant and the Mesna is used to protect her bladder/kidneys and reduce any risk of infection or bleeding.

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Eleanor was given her usual anti sickness medication in tablet form during the day and then intravenously as she slept overnight… I say ‘slept’ but I use the term loosely! Due to the constant fluids we had three wet beds and a number of bouts of sickness. Eleanor slept a while but I barely slept a wink. Couple the wet beds and sickness with a noisy hospital ward and the 3 machines Eleanor was hooked up to taking it in turns to play the sound of their people (“beeeeeeeeeeeep!!!”) all night… just try to imagine how hard it was to get any rest. I was on edge all night with sick bowls and bed pans within reach and as soon as I heard as much as a whimper from Eleanor I was there like SuperMum with a bowl at each end!

Saturday morning came and Eleanor slept for the majority of it. We were sent home around 2pm and she seemed her usual bouncy self! We decided as she was feeling well that we would head out for dinner that night. The minute we turned up at the restaurant Eleanor smelled the food and immediately started to feel sick, almost emptying her tummy right outside the door! Tim sat outside with her and I quickly grabbed a takeaway instead.

She didn’t eat much that night and was tired so she went to bed early. Tim and I slept in her room with her, sick bowls and medication at the ready! She continued to feel sick the next day, every so often the colour would drain from her face and we would rush to her with a bowl.

I absolutely hate seeing her so unwell. She always looks so terrified when she’s sick, I don’t think it’s something you can ever get used to no matter how many times it happens. She grabs my hand and says “Mummy” over and over and I can see how frightened she is. It breaks me every time. It’s almost easy to forget just how poorly she is as most of the time she looks so well. We are amazed that she’s kept the majority of her hair and although she’s quite thin she looks like any other child her age, not how you’d expect to see a child on cancer treatment. So when we have these days where she’s not herself, not wanting to eat and being sick it really hits home to us what’s happening to her and it really feels so unfair.

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Bibbidi Bobbidi Boo…

I am so lucky to have some incredible friends around me. Their support and love is endless and I cannot thank them enough.

Organised by my lovely friend Louise they all got together to pay for Eleanor to have a trip to the Bibbidi Bobbidi Boutique at Harrods a couple of days after the ball. My oldest friend Jemma drove up from the South coast to spend the day with us which made it all the more special.

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What a magical experience it was. The staff were amazing and Eleanor was treated like a princess from the minute we arrived.

I don’t want to give too much away because in all honesty I wouldn’t want to ruin the experience for anyone who wants to go. It’s almost as exciting for the parents as it is for the children…

Well, it was for me and Jemma anyway!

If you are wondering about a gift for me, I’d quite like to be made up as Rapunzel one day!

Thank you girls, I love you lots x

 

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Do you believe in magic?

Sometimes through all the dark clouds and rain there is a glimmer of sunshine.

Recently, we were extremely lucky enough to be contacted by Meg, an amazing 20 year old girl who runs a charity called Believe In Magic along with her Mum Jean. Despite suffering with a debilitating brain tumour herself, Meg and her Mum selflessly run this charity and grant wishes for poorly children in the hope of spreading a little happiness with a sprinkle of magic.

Meg called to say she had heard about Eleanor and invited us to an exclusive ball in central London, which was to take place in just under a weeks time on the night of Monday 10th August. We were told a dress would be made for Eleanor and all we needed to do was provide some measurements, her shoe size and stand by for further information about the location of the ball. Due to the host of the ball being Louis Tomlinson from One Direction, the location needed to be kept secret to prevent a million screaming One Direction fans from surrounding the place!

By the Sunday afternoon we still had no real idea what was happening, where we needed to be and when! Meg had been taken in to hospital a few days earlier and as she was our only contact we were a bit in the dark. Fortunately Tim took a call late Sunday night, on behalf of Meg from another parent telling us we needed to be at the Langham Hotel at 2pm the following day to have Eleanor’s dress fitting. We were also told to bring our overnight bags as a room had been booked for us too!

Monday morning flew by and we arrived at the hotel just after 2pm, met some other parents and chatted while the children who had been invited were given their dresses and suits to try on. Eleanor looked absolutely beautiful in her dress, it really was fit for a princess and expertly made by the team at Little Bevan. To top it off she had gorgeous sparkly silver shoes and a fairy wand with her name on it.

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After the dress fitting we went and checked into our room for the night and quickly got ourselves ready so we could all meet in reception to be driven to the ball. The ball was to be held in Hintze Hall at the Natural History Museum and we were told there were quite a few fans who had found out the location and were already lining the gates outside the museum!

When our car pulled up at the Natural History Museum I could not believe the amount of people standing outside of the gates! Through the gaps I could see a huge red carpet lined with candles, the whole front of the building was lit up purple and there were fake paparazzi located at the top of the steps for the children as they walked up.

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It was like a dream, people cheered as we walked along the red carpet and we all felt like celebrities for a few minutes – whilst I was trying desperately hard not to trip over my dress! When we walked inside it was red carpet all the way, just stunning.

After a champagne reception (and Eleanor having a little nap on me) the children and parents were taken upstairs whilst all the guests took their places at their tables. We then walked down a sweeping staircase, with Eleanor leading the way, down into the main room with everyone clapping and Louis standing at the bottom.

We had food, wine and fantastic entertainment. There was an auction where people were bidding unfathomable amounts of money for things like a T-Shirt that belonged to Harry Styles or lunch with Simon Cowell! The ball itself was funded by Louis and any money made on the night was given direct to the charity to enable them spread more magic and make more dreams come true for children who truly deserve a sparkle in their lives.

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IMG_7599For us, the night was incredible, Eleanor met Louis and had a cuddle, she danced on the big stage singing ‘Let it go’  at the top of her lungs and was even serenaded by Ben Haenow – the winner of the 2014 XFactor!

So if you asked me, do I believe in magic, my answer would be yes, a big yes, thanks to Meg, her lovely Mum Jean and the Believe in Magic charity. x

Ed…

Thanks to our wonderful friends we were given the amazing opportunity to go to Ed Sheeran’s concert (or gig as Eleanor likes to call it!) at Wembley Stadium on the 12th July. Not only was this an incredible opportunity in itself, we were also extremely lucky to enjoy the concert from a private box.

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We were even lucky enough to get a message from the man himself on the run up to the concert…

Eleanor is a huge fan of Ed and despite being only 4 knows the words to almost all of his songs and we are forced to listen to ‘fan loop radio’ at home which is basically Ed Sheeran songs, on a loop, all day long. Thankfully, I love him too and it gives me chance to work my vocal chords – though, I’m sure my neighbours don’t enjoy that very much!

Another bump in the road…

Week 25 marked the start of the consolidation phase of Eleanor’s chemotherapy. The following 12 months will comprise of around 10 x 6 week cycles whereby she’ll have three weeks of weekly treatments followed by a three week break. The schedule changes but the drugs remain the same (Carboplatin and Vincristine)

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We turned up at the Royal Marsden on the 3rd July just as we have many times in the past and ran through the normal checks prior to any treatment session. Eleanor had a little play with one of her friends, she danced and sang to the jukebox entertaining all the nurses and staff and then once everything was ready we headed round to a bed so the treatment could be started.

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The Vincristine treatment was given first, then Eleanor was hooked up to the machine ready for the hour infusion of Carboplatin. Our specialist nurse popped by and we had a nice chat before Tim disappeared off to the canteen to get us some lunch while I sat with Eleanor helping her to eat hers.

I was just about to put some food in Eleanor’s mouth when it suddenly occurred to me that her lips looked a bit red. Within seconds they had swelled and she began complaining that they were hurting. Before my very eyes they were getting redder and bigger, I knew instantly that she was having some kind of reaction and I also knew I needed to get someone quickly, so in a split second I made the decision to run and grab a nurse instead of hitting the alarm even though I had to leave her alone for a few seconds. By the time we got back Eleanor’s lips looked like she had been injected with some dodgy botox and she had developed welt like rashes on her head, neck and back.

The nurses immediately stopped her treatment, unplugged her from the machine and within minutes a doctor and Eleanor’s specialist nurse were by her bedside checking her over. Her line was flushed and she was given hydrocortisone and antihistamine through her port which quickly started to bring down the visible swelling.

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Seeing it all happen in front of  my eyes was so unimaginably scary, it was like everything was happening in slow motion. When I ran to get the nurses I felt guilty for leaving her alone knowing that she couldn’t see her surroundings and was probably in a complete panic herself, but in high stress situations like that your parental instincts kick in and decisions are made without you even realising you have thought about it!

During all of this I was frantically trying to reach Tim on his mobile but the phone reception at the Marsden is unbelievably terrible so the Mum of the little boy Eleanor had been playing with earlier ran off to get him for me – I am so grateful to her for doing that for me!

By the time Tim returned, Eleanor’s lips had pretty much returned to normal and the welts had almost disappeared. She was drowsy from the antihistamine and we were told to stick around for an hour so she could be monitored regularly in order for them to decide whether or not they would be happy for us to take her home. I have to add here that EVERY SINGLE time we go the hospital I take a prepacked bag for Eleanor and I, just in case we ever need to stay the night. The journey is around 40 minutes by car so would be a massive pain if one of us had to drive home just to grab some overnight clothes. So, of course, I had made the decision earlier that day as we were leaving that I never need the bags and that it was unlikely I would need them so left them at home!

Thankfully, within an hour, Eleanor – although still very tired – was given the green light and we were able to head off home. She slept the whole way and then most of the evening on the sofa.

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Everything changes now. Eleanor had a nasty reaction to the Carboplatin treatment despite being at week 25 of her schedule, and now that particular drug cannot be given to her again. She will continue to have Vincristine, but the Carboplatin will now be replaced by two different drugs; Cyclophosphamide and Cisplatin, which will be alternated due to their high toxicity. The schedule remains the same but each time she is given one of the two new drugs we will have to spend one or two nights in hospital as they are given over a longer period of time and are followed by up to 24 hours of fluids to flush her system of toxins.

Just when you think you finally understand what is happening the roller coaster peaks and you are sent hurtling back down the tracks. Obviously our concerns now relate to the effectiveness of these drugs and if her tumour will respond to this new treatment regime, also how her body will react and if she will remain as well as she has so far.

Only time will tell. Our fingers remain crossed.