Updated posts

By @enablingevie, Sep 28 2014 07:15PM

So I've umm'd and ahhh'd as to wether I should write a blog, but I think I'm doing it to get the past few weeks out my head and onto paper, maybe in an attempt to get my thoughts in some kind of order. Though I'm doubtful that's possible at this stage.

It must be very hard for all of you to understand how on earth this came about, it's hard enough for James and I and we are living it every day. So let me explain how we got to this point.

On Tuesday 8th august I took Evie to Great Ormond Street for a new feeding tube to be fitted in her tummy. The reason for this is that for around 8 weeks Evie had been out of sorts. I had taken her to A&E the Thursday before as she was pale and not right, lots of gagging and she was very unhappy being flat or being on her own.

A few weeks before that I'd had a very very scary moment when Evie's eyes began shaking side to side rapidly (nystagmus) for no reason and continued on and off all day, then stopped, then two days with nothing, then started again. I called her oncology team and in my panic that Evie had a brain tumour I asked for an MRI. After being reassured the cancer in her eyes was unlikely to have travelled to her brain we went down other avenues. A visit on one Friday in July to her paediatrician, an EEG the weds after and still no answers. All the time Evie is becoming more and more distressed, eye movements coming and going, vomitting, won't be put down, crying when her head fell forward and james and I at the end of our tether.

So I'm sitting in GOSH with Evie and Lyn from the Rainbow Trust (for this read wing woman, chauffeur, confidant, rock, fish pie maker) waiting for Evie to have a new tube fitted. She becomes more and more distressed in the hot, noisy chaos of the ward and therefore so do I, I have no choice but to remove her tube as her stomach was now doing summersaults. Evie breathed a sigh of relief and fell asleep.

An hour later and Evie woke up, her eyes began to shake, I talked to her and calmed her, but nothing worked, her breathing changed and I realised 15 mins later she was having a full blown seizure. I pressed the alarm, 20 mins later my angel was struggling with a full blown seizure. The emergency alarm was pushed and I was warned a lot of very highly skilled doctors and nurses would rush in to take over.

I stood back while both ends of Evie's bed were whipped off, Evie's arm was pulled about, needles put in her, amazing medical professionals doing all they could to try to stop Evie's terrible seizure. The trouble with seizures is, the more drugs you give to stop them, the more the drugs suppress breathing. I was warned she may stop breathing. I was warned this may lead to her heart stopping. I stood still. I watched the dr's and nurses take control of my world.

Evie was moved to a cubicle, she continued to need rescuing from her seizures for two days.....and remember I had removed her feeding tube....she was now on a drip.... And her veins normally last 6-8 hours on a drip. She has around 4 veins that work still. Nearly three years of blood tests and anaesthetics meant most of her veins are thrombosed. Drs do not like to be told how to do their jobs, to be honest I don't care, I had to ask 5 different dr's not to attempt sticking her feet, hands, wrists, ankles with needles. I asked for a specialist anaesthetist and an ultra sound. No one was coming near her, unless it was someone I knew could find her few remaining veins....I did not want a cannula in her neck or head just yet....that really is a last resort! It's very difficult to explain how a child with cerebral palsy and dystonia moves their arms, but if you imagine that uncontrollable jig that happens in your leg when it's crossed too long and times it by 10, your close, then try putting a needle in it!

So up to a neurology ward, a whole new team of dr's, an ultrasound and numerous blood tests, night time seizures, urine tests, poo tests and now 18 leads superglued to Evie's head to monitor her brain activity.....and we are only at Friday! At last she was stable enough to have a new jej (feeding) tube fitted. We all go down to theatre, james, myself, a neurologist, a nurse and the 5 radiologists. At last she can be fed.

Oh and Friday brought a visit from Orlando bloom....his response to my detailed description of Evie's life "[email protected]!k" yes Orlando, "[email protected]!k" that pretty much sums it up!

A few hours after her feeding began so too did more seizures, we couldn't help but think that the tube was some what responsible.

Now the caca really hit the fan, Saturday brought 3 hours of continual seizure, my question "could this kill her or cause severe brain damage that she survives" the answer "yes".

Nothing was stopping the seizures.... Nothing! Our only option was to take Evie to intensive care, to load her with morphine and a drug called midazolam to induce a coma like state. If this didn't work, a full blown coma would be needed, as well as a breathing ventilator to do the work for her.

Still we have no answers...... But my heart starts it's journey to breaking...james and I know this is bad....very very bad!

Another ward, another set of rules, another set of nurses and dr's. There are so many wonderful nurses and dr's in most hospitals, the problem is COMMUNICATION. As a woman who gave birth to a suffocated child, that was then brought back to life, in front of my eyes, to be asked 8 times to recount the events that led to Evie's brain injury, whilst dealing with the second most horrific time in our daughters life, really is unacceptable, draining and inconsiderate. It's in her notes!

So we are now in intensive care, we are asked to leave whist they knock Evie out, put a massive tube up her nose, a pic line in her leg ( massive catheter that avoids lots of needles and lasts longer) and the ventilator hooked up.

The following 5 days saw more seizures, more emergency rescue medicine and lots of questions from doctors and specialists, including the tropical diseases team? Random, an MRI, daily blood tests, a stand up argument with a nurse about feeding, an amazing nurse who's loving kindness made me cry. Evie had cold hands so she made tiny hot water bottles by filing rubber gloves with warm water, a nurse who gently washed Evie's hair overnight ( we couldn't stay on the ward at night so were given a parents flat, which was strangely like being in student halls of residence at uni) me on an enraged march round the hospital to get Evie's MRI done as it had been delayed for 3 days. Thank you to June in MRI who actually, had not been told the severity of the situation and when I explained ensured the MRI happened that Wednesday afternoon.

The results of the MRI as well as the lumber puncture Evie had to have that day were to give us the answers we needed. I had known since Monday it was bad, I had a moment at 7am when Evie looked at me, her heart rate dropped below 50 and I knew she was telling me " mum, I love you, it's bad, I've had enough, I want this to all stop, please take me home" it took four days but I did what she asked.

Friday 15th august 10 days after admission. Being taken to "The Room" is always daunting, like being asked to put your head on a guillotine I expect.

Being told there is a change in your child's brain is never good. The pineal gland, the pituitary stalk and the meninges are all affected. The answer that most fits seems to be, that for whatever reason cancer had started to grow in Evie's pineal gland and pituitary stalk and this in turn had sent cancer cells into the fluid around her brain and spinal cord. Therefore creating not only a type of terminal meningitis from cancer but also two brain tumours. The cancer may have been there since birth, one or two tiny cells, from two or three days after conception, a simple flaw which replicated like dust on a photocopier, again and again.

So to recap, that's a brain injury at birth, cancer in both eyes, ten days of critical seizures, two brain tumours, and finally terminal Leptomeningeal carcinomatosis ( 2 years and 8 months old!!

The irony is, I gave up caffeine, chocolate, alcohol, as well as the big list all pregnant women get!

My body was shaking uncontrollably from Wednesday to Friday, how could one precious child be so afflicted and have no choice, no chance to ever have health, or true effortless happiness?!

With the support of an amazing Dr from a local hospice Shooting stars, Dr AK, we made it clear we wanted to get home as soon as possible, that moment would have been nice, to click our fingers and have Evie bathed, in her jammys and in her own bed. I walked back to my girl, with James and the nurses were asked to take off all the monitors and cables, needles and drips and to allow us to clean up our baby and get her ready to come home. I laid my head on Evie's cot and sobbed.

It was around 8pm when we left the hospital, both sets of grandparents had left to take all our clothes and belongings home. James went down to bring the car to the front of the hospital and I wrapped my angel in her blanket and as I walked, just me and her, out the ward, down corridors, past nurses exclaiming their delight at her beauty, and parents wondering where I was going, how sick was my child compared to theirs, I felt like I was in a slow motion film, liberation, escape, no strangers, no intrusion, time to be us again, for one last time.

6 weeks on and we have surrounded Evie with love, been supported by friends and family, been lifted by gifts, cards, flowers, phone calls, love in general, however it's been expressed has got us to this point.

Evie has days of suffering, when seizures break through, when pain rears it ugly head, her neck unable to move, her swallow gone, replaced by me suctioning her nose and throat. Her responses gone, curtains closed, hushed voices to ensure headaches are minimised.

As I type, I'm on my bed, candles burning, red, pink, yellow roses in vases all round the room, the smell of lavender in the air.

My brave girl lies next to me, still from drugs sedating her, relaxed from morphine easing her pain, more beautiful and precious than I ever knew was possible. An oxygen mask lies gently on the pillow beside her, offering her support as her lungs slowly fail her. The quiet click of the syringe driver that delivers a cocktail of drugs 24/7. Death approaches slowly, allowing her time to display her strength and courage, almost respectfully approaching day by day. Cancer taking its grip as softly and gently as possible, yet in the background her serenity on the outside belies the evil ravages of the terrible disease as it begins to alter her natural bodily rhythms and functions. A new normality has fallen upon us, one in which our world stands still and we exist day to day.

Evie my tears are plentiful and I thank them for coming, they are a symbol of my love, my pain, my fear, my anger, my pride and my sorrow. I love you Evie. i miss you already x

By @enablingevie, Jul 5 2014 11:34AM

Well hey friends, looks like summer has finally arrived. Things have been very busy with the Shears family and I have been working so hard to try new things.

The lovely people at did a great job with my sensory shed and friends and family mucked in to help to make it my peaceful sanctuary. Mum and I have enjoyed sneaking off there to have a change of scenery.

I am also beginning to like being in my new buggy. I can go down the road in it now without being too scared of all the different feelings and noises. Mum and dad always hold my hand so I know I'm safe.

Let's talk cancer, or maybe talk about kicking it's stinky butt! So I had another batch of yucky chemo and had a scan 2 weeks ago. My doctor was really happy with the response in my naughty left eye that the nurses told mum he skipped out like his football team had scored a winning goal :) the cancer cells have flattened and shrunk, so a little bit of breathing space now before the next check on the 16th July.

So with that news, we've been really busy with physio and other therapies to boost my learning whilst I'm well. Cancer treatment is a real pain in the bum as it makes me feel so poorly and interrupts my nice sleepy time that It's so hard to learn new things whilst I have to have it.

I went to meet a nice new doctor at the Evelina hospital. He specialises in movement disorders and has agreed to help mum to manage things I need now and in the future.

Mummy was busy last month with talking to my lovely helpers from portage about school! How did I get so big that I ready for school?! It's a long process to get my paperwork ready to make sure that I can go to the right school where I can and have fun with friends. Exciting times ahead.

Other exciting things that have happened in the last couple of months include grandad Barry taking me for a walk in my buggy and I didn't cry; mum and I going to the supermarket for the first time in my buggy; Learning a new position to hold myself up so I can learn and explore new things in front of me; bbqs in the garden with friends and family. Also, mum met my warrior friend George's mum for the first time. They have been talking for a long time and helping each other. They went to a special day out to find new gadgets and gizmos to help George and I.

My pals Tom Nixon, Mark Parr and my hero- my dad and his team have all done charity events that have helped to raise money for us to get the help we need. Some things it's helping to pay for include: 1:1 hydro sessions with Lucy Harris, weekly physio with Lindsey and music therapy with Eleanor. We've also been able to buy a special seat called a 'goto' seat- check it out at

My lovely mummy had her birthday last week. I think she had a lovely day- even if I did a huge poop after our birthday selfie - oops- when a girls gotta go....

So it's been another busy couple of months and again I want to say thanks to all my friends and family for doing all you do.

Enjoy the sunshine whilst it's here, just remember your sun hats and protection!

By @enablingevie, Mar 30 2014 12:24PM

Here’s a message from her ....

Where do we start? Because this year so far has been so tough I decided to hijack Evie's blog. The new set of battles began at the end of last year, of course the fact that we are saying good bye to many of Evie's carers has been a constant stress and anxiety for the entire family and this week is their last week. I got very frustrated at the lack of communication and clarity between the powers that be and us as a family. So propelled by indignation, I contacted the local press who covered the story

At Christmas I had one of the scariest experiences probably in my life so far, worse than waiting for Evie to be hooked up to chemo, worse than waiting for the results of her eye checks, on par with her birth..... The week before Christmas I watched helplessly as Evie experienced her first massive seizure since birth. I dialled 999 instantly but watching Evie take what I thought were her last panting breaths was so surreal and shocking I lost all ability to think clearly. Evie had her seizures for nearly an hour. There were terrifying discussions of inducing a coma and the same response and questions greeted us in A&E....she has a brain injury, yes, and cancer, yes, cancer? Yes, where? In her eyes..... Umm. Oh is it terminal... Boom and there it is... The question everyone thinks but never asks unless they have to. No its not terminal, the nature of the eye is that it's trapped in there, unless it grows forward out the eye or backwards down the optic nerve, then we have problems.

I won't rant on here about the mistakes and unprofessionalism that followed instead I will thank the amazing nurse Berni, who reassured, supported and most of all listened and took on board the fact that I do I fact know my child as if she were me.

I know Evie’s nap lasts 27mins, I know her milk annoys her every night at 17:27 and she starts to complain. I know when she has a general anaesthetic she whips her head to the other side in protest 10 seconds before she drifts off, I know doing a lumber puncture whilst she's awake DOES NOT work, I know she hates her hands being grabbed, I know her temperature just by putting my lips on her temple, I know her weight just by giving her a naked cuddle, I know her every sound, every movement, every breath and if it's ok with you Dr as she is MY child I will say stop when you have attempted to put a needle in her more than 5 times because, actually she has had enough, and we can try again later...... Oops I said I wouldn't rant, that's it I promise!

Anyway Evie struggled for 7 days and nights we both had no sleep as I was hourly topping up her feed. Tests came back negative for everything and Evie battles on. In my opinion the seizure took 10% of Evie's strength and learning again. And it's only just coming back, along with her two year old attitude :)

Soooo we now have the added fear of a life dealing with epilepsy, but as they say cross that bridge...

Sadly the cancer in Evie's eye has continued to grow. Her right eye has remained stable but radiotherapy was unsuccessful, and we were recently told eye removal on the left was our only option. We refused and asked "what else?"

To help understand, Evie's right eye allows her peripheral vision, Evie's left allows her central vision. So without her left eye she can no longer see faces, books, or any detail about the world. We desperately need to shrink and kill the cancer in her left eye.

The plan is last Wednesday Evie had another dose of chemo injected into her eye up her artery. This will be repeated on 30th April with another chemo drug which is normally used on ovarian cancer, we will try anything. But the nature of the consistency of the vitreous jelly of the eye means the cancer is basically insulated so doesn't like to respond in the same way other cancers do.

Now onto the good stuff... Evie has her new specialised buggy and I have found a company that are wonderfully inclusive and make covers especially for them! Yay so over the next few months 3x a day building up her tolerance, we will start her process to get mobile. Evie screams and startles if I even move the buggy over the carpet gripper on the door frame, so a kerb or pavement is a long way off! But with regular sessions and physio we will get there.

Evie has learnt how to hit a communication switch and has also worked out when to hit it to finish the end of a song.

We now go to a play group every Tuesday for an hour, we tried more but Evie decides to stop breathing these days when she’s too hot, too tired, has wind, numerous little surprises for her mummy :) at playgroup Evie recently held a brush and was able to watch and appreciate what she was doing whilst I helped move her hand to spread glue on her sensory board, she has been hand painting, discovering toys in trays of rice krispies, great fun

Most if all she has been enjoying the fizz pod (little sensory room) which her wonderful portage workers have geared towards a jungle theme. A fully technological set up with a button alone triggering the bubble tube, a disco ball and the sound of a jungle rainstorm. I love it too as well as the love and understanding I get from Bev and Kay (they should be consulted for a national programme)

We have also introduced music therapy every Wednesday which Evie loves and so do I, all thanks to your donations!

Also Evie now has her own area in the garden, wind spinners, chimes, solar lights, I have an empty shed waiting to be turned into a sensory room and a half put together arch for solar lights, jasmine to climb over it and wind spinners.!life17/c1eux

Also how could I not mention the wonderful day we had celebrating Evie's 2nd birthday at The London Aquarium, with thanks going to the charity Merlin’s magic wand that made it all possible. the day was just perfect, mostly because Evie was such a good, strong brave girl.

Over the past few months Evie's fundraising has continued to lift us. Such generosity and kindness of friends, family and strangers. Evie even featured in The Metro newspaper as fundraiser of the day generating a massive amount of interest and around £300 in funds.

We have been able to hire the services of who are wonderful therapists and so very insightful. Here's hoping Evie goes from strength to strength.

Once again a massive thank you to everyone for your continued love and support, friends family and strangers x

By @enablingevie, Jan 2 2014 01:47PM

Friends, as we've come to the end of 2013 it's been a hell of an exhausting year. From spending my first birthday in hospital, to regular eye checks and laser treatment, a course of horrid radiotherapy and chemotherapy, hydrotherapy and physiotherapy and the list goes on....up to a very scary week before Christmas in hospital with a mystery nasty virus. What a year!

My eye cancer has responded well to radiotherapy. My right eye is stable and my left eye is looking ok. There's a little grey area which could be new cancer cells or just scaring from old cells dying. Check ups every 3 weeks to make sure there's no growth or change so let's hope for that.

My wonderful friends have been incredibly generous and with your efforts, you've helped me to have 40 physio sessions, 20 hydro sessions, and acupuncture treatment (sho -ni-shin), buy a specialist hydraulic bed, an interactive learning station, some switch adapted toys to help encourage hand eye co-ordination through cause and effect, one pair of specialist shoes, a dynamic movement orthosis suit (DMO), a massage bench, a physio stool, and some wonderful sensory toys!!! :) Without you guys, I would have none if this.

This has been an incredibly tough year for my family and I, but your continued help and support has helped me to explore my world in my way.

I can't end this year without a special mention to all my wonderful friends from the Tadworth Children's Trust. You've truly been a lifeline to me and my parents and although you can't come and help us anymore- I hope this isn't goodbye. There are some goodbyes though- to our night nurses- Kelly, who flew back to New Zealand, as well as Sam, who had a little bubba all of her own. He was cheeky and came a little bit early, so he can definitely be in my gang of cheeky babies.

Mum, Dad and I have moved to our new house to help make things a bit easier as I get a bit bigger. Please do come see us in the new year. Friends -old and new are always welcome (as long as you don't have a naughty cough or cold).

I hope Santa was good to you all (only if you've been good though). I was given so many amazing presents by friends and family. Those of you that want to come over and read me a story- come on, hurry up! I got millions of crazy, funny books to share with you! As my Mum said- may 2014 bring more smiles and less tears. Oh nearly forgot- of course, I turn two in a couple of weeks!

Love you all

Evie xx

By @enablingevie, Oct 30 2013 01:23PM

I've made it! 20 days of radiotherapy- daily visits up to barts, drugs daily to make me sleepy (doctors call it a ga), and concentrated radiator beams into my eye to zap the horrid cancer cells. It's been a very tough ride but I've made it through the other side.

More positive news- we've moved into our very own house :) early days with lots of friends helping out with stripping (paper!) and cleaning. Mum said something about cleaning out the scummy hot water tank was like a really rubbish krypton factor- I don't know what that is but I hope it's more fun than what mum was doing! My room is lovely and big and will soon be ready for my new bed.

Had to go visit the tummy doctor this week as my naughty tube has been making me sick over the past few months. Will have to go back to gosh to have it put in again and hopefully I can stop vomiting all over the place. Don't want to make my new house all yucky with vomit!

Trying also to get a specialist buggy that will help me be more comfy to be seated so I can learn and explore more things. Mum has to fight so hard to get the right things for me. One size doesn't fit all and people keep mentioning 'budgets' to my mum. I thought they were little birds you keep in a cage but mum says its money chat. So thanks to my lovely friends- mum has managed to buy me my own custom-made bed that is made especially to make me (no one else!) comfy at nighttime. Next job is to try and get the right buggy.

So just a quick update. Got some recovery to go through now- I'm super super tired after such a hectic few months.

I love my new house and as Auntie Anna and Uncle Paul said "let the good times roll".

Love you lots friends

Evie boo xxxx

By @enablingevie, Sep 16 2013 09:08AM

So, that was summer! Hope you all enjoyed the sun whilst it was here. Probably need to update you what we've been doing. The shears family have had a summer full of house searching!

I'm getting bigger and have lots more toys and stuff so our little flat is tricky to move around in. After much searching and lots of disappointment, mum and dad have found us a great little house, with lots of space for my new toys. Fingers crossed we'll be in our new house by Christmas. But mummy and daddy won't trust it's ours until we move in!

Lots of people go on their jolidays over the summer and so we didn't do much of our regular stuff. It's tricky when you have a routine to do other things.

Ok so lets get the poopey stuff out there. Regular check ups and laser over the summer and a bit of a bomb just this last week :( my latest scan showed my yucky tumour in my left eye has grown quicker than ever expected! This means pretty intense treatment over the next couple of months. Mum and dad have to meet my special radio doctor next week and we will know more of what it means. It will be hard work and daily trips up to the hospital for about a month. I reallllllly want to keep seeing and so we have to try and make sure my yucky tumour shrinks so I can still see something afterwards. Not an easy job.

After all the dramas with my tummy tube- I had a good few weeks of not being sick, my tummy not filling with horrid stuff and was beginning to enjoy my daily taste of a few mils of porridge. Until a couple of weeks ago!!!! Grandma says when it rains, it bloody pours! Someone definitely left the taps on up there at the moment and I don't have my armbands on yet to stay afloat! Back to hospital this week to put my tube back in the right place and fingers and toes crossed I can stop being sick. My tummy hurting makes it difficult to do anything in my day without feeling poorly.

Mummy's been real busy fighting to get me some more help so I can learn to sit up and feel safe and comfortable, and learn to go in a car seat and a pushchair. She has to work so hard to get some people to listen- I think they all must play their iPods too loud coz they don't seem to hear very well.

I can't say it enough, but still so many heroes out there are still doing so much to help me. Thank you all from me and my mum and dad. We'd be stuck without all your help.

Guys it's a tough old world, Churchill (not the annoying dog one!) once said "if you're going through hell, keep going!"

Think of me and I'll be as tough a cookie as I can :)

Much love

Evie xx

By @enablingevie, May 28 2013 02:17PM

Hi there friends

Another busy few weeks for the Shears clan. Who knew that my diary would be so busy!

So since we last had an update I have been back to hospital more times than I care to remember. So my tumours were tricking us and I needed to have another dose of IAM treatment for my naughty eyes! And some more laser treatment on both eyes. This cancer is just as strong as me but it only makes me fight it harder! Still on regular 3 weekly EUA to check on it- maybe it’s a bit like the tumours are on parole and they need to check in every 3 weeks to check they are on the right track and not being naughty!

Easter came and went- no chocolate for me but I did get some lovely Easter pressies- Thanks everyone for always thinking of me. Mummy and Daddy got to go to see a couple of friends ‘tie the knot’. I thought that meant they were sailors learning to tie knots but Mummy told me they did get married. Congratulations to Fiona and Matthew and Bec and Joe.

Some really big events have happened over the past couple of months that have been amazingly successful. So my friend Joe Frost ran the London Marathon and did it in the super fast time of 3hours 56 mins. He is amazing and I got to have cuddles with him before he ran – his tickly stubble was a bit itchy on my face though!

The day after the Marathon, was my very own Butterfly Ball. Everyone got to wear their special dresses and make themselves look super glamorous for the big event in Mum’s native land- Essex !There were SO many people there and they all had a fabulous night with performances from The Rock choir and acrobatics from Spellbound. There was a professional photographer who took lots of snaps- take a look at my LINKS & VIDEOS page for the link to see them all- you might have made a starring role. Thank you to Auntie Kerry and Auntie Francis for arranging such a fabulous night. Mummy and Daddy were very overwhelmed with the amount of support and just how successful the night was. Ohh and congratulations to Auntie Francis to having another baby- welcome to the world baby Beatrice. I can’t wait to meet you and show you what I have been busy doing over here. Maybe you can teach me some French?

Some more of my friends did the Tough Mudda challenge- Jade and Cassandra put themselves through a gruelling day of electrocution and wall climbing, bog water diving and ramp running all whilst running a half marathon! CRAZY people. Thank you again for being so crazy. Photos are on the FUNDRAISING GALLERY page. Thanks to East Sheen Primary School for making me a lovely sensory copy of my favourite book- Barry, The Fish with Fingers and for those who made scrummy cakes to sell to help Miss Fuller with her challenge.

Think that brings us up to date a little more. Last few weeks there has been more drama in my life- well what do I expect when I’m the daughter of the head of drama! After a bit of a nightime feeding accident and milk going into my tummy instead of my intestine, I have been very sick for the past few weeks. I think the stomach must remember things like an elephant and it was VERY unhappy about milk going in. The result of that has meant I have been very sicky and it makes me very sad. To add to that, the naughty feeding tube did come out of place and although mummy acted very quickly- it didn’t manage to get back in the right place. Had a few dramas with getting a new tube quickly and after 2 general anaesthetics, a week of poor feeding and 2 procedures later, and not to mention a very tired, stressed, emotional mummy, a new tube is in place.

What else can I tell you? I have a brand new suit as I have outgrown the last one. I couldn’t have got it without everyone’s help. I am trying to learn new things each day and I can now hold a little ball in my hand, turn some pages in a book and be quite a good shot at hitting the star on top of my ball. I EVEN managed to sit in the car seat for a couple of minutes without being too scared- check out my video on my LINKS & VIDEOS page. But my new most FaVOuRiTIsT thing in the world is fun-times with the fridge! I can’t explain but it makes me smile the most- photos are on my GALLERY pages. I hope they make you smile too.

Back to the Royal London hospital tomorrow for check on my eyes. I’m sick of the hospital now so I am hoping for good news.

Until next time.... Keep smiling- if you’re finding it hard- take a look in the fridge- it makes me smile 

Lots of love

(Not so much of a Baby anymore), Evie xx

By @enablingevie, Mar 16 2013 10:55AM

NauGhtY AunTiE JoDiE!!

Sorry friends, I have had a word with my naughy Auntie Jodie as I'm counting on her to post up here what's been going on. I am getting stronger every day but typing is asking a lickle bit too much! She has been very busy but she has promised me that she will try harder to keep you guys up to date.

So what can I tell you. Well a lot has been going on since we last caught up. I had my Examination Under Anaesthetic (EUA) a few weeks ago and there was good news! My tumours had begun to respond to the the agressive treatment of the IAM Chemo. Soooo I was allowed to have my injections :) This was a big step to me being able to socialise in more open, public places with other children. They did hurt a weeny bit, but I am such a brave girl now- my mummy and daddy tell me this every day so it MUST be true!

I still had to be checked to make sure the naughty tumours are still making the right choices and listening to the medicine and getting smaller.

3 weeks later I was back at the Royal London 'opital and back under EUA. NAughty TUmours! A little bit of bad news- the tumours weren't doing good listening and I needed to have both my eyes zapped with laser to make the tumours listen better.

Lots of naughtiness the last few weeks! Even I have been a lickle bit naughty but I am trying to feel safer lying on my own and being brave. My mummy and I work SOOOOOO hard with our physio every day. My mum keeps saying she is getting arms like Madonna!? Who is Madonna- is she a lady called Donna who is mad??!

I had my next set of injections and Mummy got busy with organising some special swimming sessions for me. There is a Specialist Hydrotherapy pool very close to my place and mum found a clinic who can send a lovely physiotherapist who comes in the warm water with me and helps me to do my special exercises.. I had my first session this week. Check out my photies. I think it'll take some getting used to. It's not as hot as my luffly bath and it doesn't smell the same. But my mummy and daddy were there and it helped me to feel safe knowing they were in the water too.

So my tummy has ALSO been very NaugHTy! My milk has been changed and the tummy doctors are working hard to find out why I keep being sick. I am trying hard not to be sick but I can't stop. Mummy, Daddy and Grandma Laura took me on a really looooooong road trip to somewhere called Oxford- I wonder if Grandma Laura is from there as her name is Ford. We went to see a very clever man who has written lots of books about babies with poorly brains like me who have naughty tummies that don't listen! So he didn't have any miracle cures but my mummy and daddy felt that they understand my tummies and its working day more now and have some ideas on how to help my windy pops and to try help to stop me being so sick. We have to wait til I grow a bit bigger for any more answers though.

We had mummy's day last week. I know my mummy finds it a really hard day but I did tell my Auntie Jodie to tell you all that my Mum is the BESTEST mum in the whole wide world. I am the luckiest girl on the planet to have her.

Please take a look at all the special days that are happening over the next few weeks from all my friends who are trying to help me.

Without you all, I couldn't see my friends at Kiki's clinic who are helping me to learn to feel safe and teach my body to listen to what my brain is telling it to do. I couldn't have my special sessions in the hydrotherapy pools.

It's nearly the end of lent- well done to all of you who have given things up. Just 2 more weeks to go. I decided to give up, "giving up". I think I'll keep going past Easter Sunday. Some people tell me that I'm just like my mum- strong, determined, stubborn and tenacious. I wouldn't want to be like anyone else :) She's my hero- I love my mum


By @enablingevie, Jan 20 2013 09:38AM

HapPy BirThDaY to me :) I am 1 whole year old :)

So the snow arrived in time for my birthday and I've had the best weekend effa. A lickle hiccup on my

actual birthday but it wouldn't be my day if it went as smooth as a babies bottie :)

Freezing cold and boiling hot because of snow and a yucky infection in my tummy tube saw the magic numbers hit minus and then in the hundreds! Short trip to a&e and a bit of medicine and home to my

own bed. We didn't even get to cut my scrummy cake but we made up for it yesterday. Feeling much

better, my mummy and daddy took me to a very special place, Fanny's farm shop. They telled me that it was somewhere they went when I was in mummy's tummy. It was soo pretty in the snow. There were some chickens and piggies there and lots of lickle treasures to see. More importantly- lots of scrummy homemade cakes to eat :) We met some friends and family there and they stuffed their faces. My medicine made me a lickle sleepy so I did fall asleep for a birthday doze- Birthdays are exhausing- I don't know how my Great Nanny Cath has managed to party through so many of them :) My mum and dad were smiling and laughing all the day and that is the best present effa.

You must go to see Fanny with her piggies and chickens at the farm shop- they really looked after us and made my 1st birthday very special. Tell them Baby Evie recommeded it- don't fink it'll get you a discount though, we did set the fire alarm off with out sparklers! oopps ;)

ThaNk YoU so much to everyone for all your luffly messages, pressies and thoughts. I really wish I could send a special thank you to you all personally but I have so much to do each day just to keep growing and be as well as I can be.

I feel a very special and lucky girl right now and had the best birthday effa. Check out my photies to see how very lucky I am :)

lots of love

Baby (but becoming a big girl) Evie :) xxxx

By @enablingevie, Jan 6 2013 09:22PM

Happy New Year to you all- friends and heroes. Sure am glad to see the back of 2012 and hoping that 2013 can show me how to find comfort and happiness.

Sooo it's been a while since I have been able to update you all. Its been a busyfew weeks.

Mum and Dad had a humungus meeting at Great Ormond Street with all the big wigs looking after my care. They had lots of questions for them. The problem is here.... the horrible C tumour in my left eye continues to grow and decisions need to be made. 2 options- laser treatment to continue and see if having enough of an impact on the tumour to reduce how much all the lickle mean parts of it are dancing around keeping the tumour active OR IAM- intrat arterial melphalan. Mum and Dad really want to help me to save any "potential for vision". Life is gonna be pretty hard for me as it is with my poorly brain- and they want for me to be able to have as much vision as possible so I can see the world around me and learn through sight. Laser treatment has risks that mean it may not treat the horrid tumour enough and may hurt my potential for vision. IAM is a medicine that has it's risks too. Its a new treatment that has been used since 2008 and they have only treated one other baby like me before with this treatment. The treatment involves feeding a tube into my artery in my leg (femeral) through the artery that feeds my brain (carotid) and into the artery at the back of my eye. Then the medicine is fed through this tube directly into the yucky tumour. SOOOO decisions have to be made. My mum and dad are asking for all the information from the big doctors so that they can make informed decisions. They aren't easy to make!

Thanks to all of your fundraising, I was able to get a special suit made just for me. Check out my photies to see it- it's purple, lycra and VERY tight. This helps my skin to send messages to my brain so that I know where my body is in space and I can feel safe. It also helps me to feel safe lying on my back and sit with a good. healthy posture. Thanks soo much to all my heroes and my new friend Sam who helps me fit and adjust my DMO suit as I grow.

In the meantime we spent our first family christmas over at Grandma Laura's and Grandpa Larry's. Grandma Laura made me a bed at her home- she got me a cot and my cot wedge and my cuggly teddy mat to make me as comfy as possible. We had a lovely time being out of the flat. Grandma Laura has a lovely garden and I love being outside- even if I do scream a lot :) It was sooooo very nice to see my mummy and daddy smile - its been a long time since I saw that. And oh my goodness- this guy called Santa did come and brought me some amazing presents. I was a very lucky girl.

After a few days in the Essex air, we came back to london and saw Nanny Lorraine and Grandad Barry where I got spoilt all over again. I'm a lucky girl to have all my grandparents around me.

New years Eve arrived and Mummy and Auntie Jodie took me to have my earry holes checked. Daddy had to go back to work for a few hours. He works sooooooooo hard- my dad. So we arrived at the hospital for 10.30 and the lovely lady there needed me to fall asleep before she could do anything. I had such a nice sleep the night before I just wasn't 'leepy! They were trying all the tricks, lights off, rocking, singing my favourite songs, and then I couldn't fight it anymore and dozed off about 12. Not for long though - I only have tiny little cat naps in the day but in the 20 mins they were able to get 3 frequencies on my left ear tested. They did this by attaching discs to my head and behind my ears and attaching a machine to the discs to measure my brain responses to sound. I needed to be asleep so that my brain wasn't responding to other things! At first the lady told mummy that she wasn't getting a response in the brain stem,but she was getting a reading and so the sounds are getting through somehow. And then Ta dah :) I was awake! As she couldn't finish it, I will need to go back and have the test done under sedation ( I'm used to that stuff!). The reading aren't normal apparently so it will take longer to get the information they need. So they year ended with a little bit of good news- I can hear high frequency sounds in my left ear when loud and clear, the rest is still to be tested!! So all you men out there- you need to raise your pitch so I can hear you :)

A quiet week this week whilst everyone slowly gets back into work mode.

This week- C treatment goes ahead. Likely to be IAM. I know my mum and dad are very scared. Not exactly how they thought they would see my first birthday- recovering from cancer treatment :(

Speaking of which- my first birthday is coming up. I love you all so very much- if you want to help- please sponsor my heroes who are doing crazy things throughout the year to help raise some money for new treatments so I can be more comfortable in my baby skin.

wish me luck this week

much love

Baby Evie xxxx

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