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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.

Believe In Magic Ball - Natural History Museum - Holly Clark Photography

©Holly Clark Photography

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!