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By @enablingevie, Nov 21 2012 05:11PM

Hey friends

thank you all so much for your lovely messages and thoughts, 'specially today. Had a loooooonng day up at the eye ho'pital to see how the horrid C is doing. Lots of poking around in my lickle eyes and lots of complicated words being used around me. I can't really understand it- Im only 10 months old :) So I will leave it to the growd'ups to explain what's going on....

Well done for all you guys out there holding fundraising events. I know my mummy's school is holding a week of events. You are all my heroes.

Over to the growd'ups

love you all

Baby Evie

xx

Ok so current update on the tumours...

Evie has tumours in both her left and right eye and they have required different approaches to treatment.

Left Eye: Currently has 3 tumours that are being monitored. Tumours 1 and 2 are on Evie's peripheral vision (the part of vision that occurs outside the very center of gaze- so around the edges). These were lasered at the beginning of treatment. Tumour 3 has been lasered twice but is still not in a stable state yet . Unfortunately another tumour was discovered today that required laser treatment too. The specialists report that Evie's vision is "potentially ok at present" but the future is very uncertain.

Right Eye: There is a large central tumour which is in a mixed state. Half has calcified from chemo (we want this) but the other half is unstable. This requires further laser treatment in 4 weeks time which should stabilise the outer edges if the tumour.

Currently the focus of treatment is on preserving Evie's sight as much as possible. There are still many discussions and plenty of research to explore in terms of thinking towards long term management of Evie's cancer and the implications of further treatment.

This is a long road and Evie, her mum and dad have a tough journey ahead.

They are the strongest, bravest people I know and I admire them more and more every day.

xxxx

By @enablingevie, Nov 14 2012 06:40PM

Hey friends- check out me trying to learn how to move and control my body. There is a video on the Videos page of my website under the Gallery.

Thank you for all your hard work to help me. Thank you specially to my mummy and daddy for finding the right people to help me (even if I do cry ALL the way through) I loooooove you :)

Baby Evie xx


By @enablingevie, Nov 2 2012 02:40PM

So the last few weeks have been a complete roller coaster. Where to start!? I have been really busy with going to lots of appointments that have only been possible because I have so many lovely friends that are helping me. I have found a new lady to see that is much closer to home. The car journeys to Harley Street were too much for me and mummy to manage. Kiki’s clinic is amazing and I really love going there with mummy. My lovely therapist Elke, helps mummy to learn the right techniques to pick me up, hold me, help me to support myself, be aware of my own body and feel safe with movement- including learning to be on my tummy and ‘reflex creeping’ which is like early crawling. Mummy and I do lots of practise at home- its hard work and I find the big ball a bit scary but we manage to have some smiles. There are photos of some of my hard work on my photo gallery page.

I think since I last wrote to you all I have had a few scans of my eyes. Unfortunately there is one very naughty tumour that hasn’t responded to yucky medicine. I had laser treatment on this 3 weeks ago to try and reduce it but my scan today showed that it’s still growing and I had to have more laser treatment today. I have to wait 3 more weeks and if it’s still being naughty- I will have to start another course of yucky medicine. This time, it’s a little more aggressive. It is known as IAM- this stands for Intra Arterial Melphalan and is a specialised chemotherapy treatment which is placed in the main artery of my eye. It goes up through a tube which carries my blood, in my groin and eventually gets placed into the tube that takes blood to my eye. This is a very tricky operation and comes with lots of risks and side effects. I know that my mummy and daddy are very scared if I need this. I heard my doctor saying something about genes and make up and vulnerability to a lifetime of cancer. I thought my mummy and daddy wore genes and make up?? But they were very sad when they heard this so I think I may have got it wrong as I don’t think it’s a good thing.

Life is tough. My mum often says that a clever man called Winston once said “if you’re going through hell, keep on going”. My mummy and daddy are the bravest, strongest, most amazing people I think I’ll ever know. I feel lucky that I have them to look after me. I just wish there were more days where I could show them how much I love them.

Thank you to all those who are continuing to do great things to help me. There have been so many events over the past few weeks including many people “running to the beat”; over 100 people playing netball in weather similar to that of a hurricane; men de-fuzzing their bodies of hair; a great clothes sale in Devon and washing cars in the sunshine at the Fire station. There are still more events happening before the end of the year- check out the events page. Please send an email to enablingevie@gmail.com if you are running an event and my friend Jodie can put it on the website so everyone will know what my heroes are doing to help me. I hope that one day I will learn to say “Thank you “, but for now my smile will have to be enough.



By @enablingevie, Sep 20 2012 10:42AM

Drama seems to be the buzz word :(

Last week - we had another big meeting. I know my mum and dad are feeling very frustrated at the chaos that seems to be my care. Over 20 people in the room and nothing really positive to say :( when will someone see that my care needs co ordinating by a professional in neuro disability?? My tube was playing up a bit again- I felt so yucky that even mummy rocking me didn't seem to work its usual magic. Then some indicator to why I felt rubbish- Thursday morning my tummy was full of milk. That may sound like good news to some- but my milk isn't supposed to go into my tummy- it needs to go into my intestine. This was terrible timing as mummy and daddy were going away for a couple of nights to get a break. Visit to a&e and then to gosh to be told nothing could happen that day or night but I had to go home and go back to gosh on friday :( Friday came and by4pm I had been seen and was home and grumpy. Mummy and daddy went - a day late but still was some alone time they needed. I had a couple of nights with Nanny Laura and her friend Leona. And then Auntie Jodie and Auntie Anna on Saturday with Nanny Laura. Girls nights all round - minus the sleep- sorry girls!! Mummy and daddy returned home Sunday and the start of the crazy week that has been this one :(

Monday morning with the nurses and bad times called again- my tube came right out as it wasn't done up tight enough and so it pulled right out of my intestine, which meant I couldn't have any milk or drugs. Mummy was very angry as she spent 5 hours ringing doctors last Thursday to try to get them to fix it and now it was broken again......*big sigh* A lovely lady came round and fixed up my tube so I could have water overnight. Mummy didn't let them put needles in me or a yucky tube down my nose as she wanted them to think how this could be avoided and luckily- it was due to some out the box thinking!

Tuesday I was supposed to be going to the Bobath Centre for an assessment for therapy but instead- mummy, Jodie and I spent the day in gosh waiting for my tube to be put back in. Had to have a general anaesthetic as they couldn't get it in the first time. Home for a bath and then up on Wednesday to the Royal London for my latest scan of my tumours. Sleepy, grumpy, uncomfortable and exhausted- mummy, daddy and I head up to the hospital with every finger and toe crossed for some good news. Well I must have missed a couple out as they couldn't give us good news:( the tumour in my left eye (the one where I had some chance of seeing from) has grown :( this means that is hasn't responded the way it needed to,to the yucky chemo I had. Naughty tumour :( I'm not sure how much more sad news mummy and daddy can take. I really want to hear them laugh. Their tears sound painful and I don't want them to hurt. They are good people. Life just doesn't seem to be fair :(

Have to wait 3 weeks before they scan again and then decision time :(

This world is a tough place to be :(


By @enablingevie, Sep 6 2012 09:54AM

Hi friends- its been a super busy couple of weeks but have managed to muster some energy to update you all on the latest news. So my mummy managed to get an appointment with the gastroenterologist at GOSH to talk about some of her and dad's concerns with my feeding tube. He was a very nice man and he explained each of the next steps to mum about finding out what is happening with my tummy and why it isn't working as well as it should be. Lots more visits and investigations at the hospital but hopefully we can find a way that means mum and dad don't have to draw bile out from my tummy anymore and it can get rid of it for itself. My site where the tube goes in my tummy has been very angry and sore and the nurses found strep b so we have had to treat it with some special cream. Thankfully it was caught in time and the infection is clearing up well. I have had a couple of appointments with a private neuro physio as well. The sessions are really hard work and make me soooo tired. I can't do much more than cry through it. She has told us lots of things to help my mum and dad to understand why physio is so important. The words dystonia and retained atnr with variable tone have been flying about. This means that my muscles are not co ordinated to my brain messages and my movements aren't voluntary at the moment. So I can move my arms and legs but not in a controlled way. The retained atnr refers to a developmental stage all babies have and stands for asymmetric tonic neck reflex. I should have passed this milestone by now but my body seems a bit stuck at this stage. The therapist is giving mum and dad lots of tips about trying to support me to keep my head more central so that the involuntary movements are reduced in the rest of my body and lots of exercises and stretches to do to prevent my muscles becoming too tight and contracted. I have a schedule now to do this at least twice a day and I really don't like it. It's always the way that you have to do the things you hate :( I have also been seeing a cranio sacral therapist. This is worth a google and it is helping me and my mum to understand more about my traumatic journey into this world and trying to help us feel safer here and to try and help me forget that very scary time. Will keep you up to date on how this goes.

I had a day with daddy a couple of weeks ago whilst mummy took some time out to see her friend. I tried very hard to be good girl for him and we had a scrummy day together. I still wake up quite a lot at night- mum and dad say its every 2 hours but it feels like I have been asleep forever when I'm asleep! Mummy has heard from another mummy who has a baby girl quite like me- she liked to be perched on people's shoulders and hated the car seat and buggy like I do! This other mummy told my parents that she doesn't remember when all the crying and distress stopped but it did. I am trying very hard to not cry so much but there is still so much to cry about right now. I'm trying I promise, mummy and daddy :)

There are so many different treatments out there that are being explored to find out what I would benefit from. All these treatment need money and I can't thank you all enough for your generosity. I wouldn't have been able to have done any of the above without your help. Unfortunately it's a lifetime of this level of input and more, so it's great to hear that there are more events coming up. As well as intensive weekly neuro developmental physiotherapy, we are looking at a therapy called Vojta therapy- this is also very intense but would love to hear from anyone who has heard of or had any of this therapy. My auntie Jodie recently said that "poison and medicine are often the same substances but given for different intentions" I know that mum and dad are keen to not give me too many medicines so they are looking into alternatives and this includes trialling high dose of vitamin c to support muscle growth and maintain inactivity of my cancer, magnesium muscle spray to help with my muscle tightness and fennel tea to help my tummy and my windy pops. That reminds me- I have a check in 2 weeks on how the tumours in my eyes are doing. Keep your fingers crossed guys that they are shrinking like old grapes!!

It's been a busy time and it's only going to get busier. Please keep your visits up- its getting towards winter and mum and I hate being at home on our own in the daytime.

I look forward to hearing about the events coming up and seeing some of you soon.

My grandad larry had some good advice for my mum the other day about staying cool whilst all the chaos goes on around us. He said "keep your tongue out!" (like the doggies do)

Bye for now friends

Baby Evie

Xxxx

By @enablingevie, Aug 9 2012 08:27AM

Nothing is ever straightfo​rward!!!! It's been such a tough month for me and mum and dad. I know that we're all waiting for the day when something feels right! Soooo after an exhausting meeting in my last blog- we were quickly given an op date for my peg j tube - a feeding tube to go into my tummy with an extension into my intestine and be pushed through my tummy wall so I don't gave to be fed down my nose anymore. 2 general anaestheti​cs later with 2 separate operations​- a 9 day stay in gosh and it's in place. Never simple- those 9 days were exhausting​. I can't even remember how long mum and I went without sleep in there but I was in too much discomfort to sleep. Now mum and I are home with dad but the site (on my tummy where the tube goes in) is very sore and has become slightly ulcerated. It's tricky to keep clean and dry!! The tube is also too big for me as they don't have smaller ones. This means it hangs down to my knees and scratches my thighs a lot. It mustn't move too much too or the site gets sore and infected..​.. But I'm just a baby and i can't control my bodies movements because of my hurty brain so its not easy to "stay still"! It also means that my mummy and daddy have to do the work of my tummy for me. As the tube is too big outside my body it's also too big inside so my tummy needs help getting rid of the acid it makes. Mum and dad have to syringe this out :( Not something they were prepared or informed they would need to do :( so right now this tube isn't making me much happier. I feel a bit stronger and my nappy size has gone up although it seems to cover my whole body!! I'm still on lots of yucky medicine- my mum tells me when she was little medicine used to taste yummy like bananas but I don't know what taste is like!! I had my examinatio​n today under anaestheti​c to see what activity is happening with the horrid tumours. Chemo course has finished but the dreaded c is still active and the tumours still present. The examinatio​n has shown the tumours are 'stable'. So for now we have to wait and see.Next scan will be in 6 weeks. People keep talking about the silver lining.... Feels like the cloud over me and my mum and dad has had its lining stolen for the time being- I hope someone finds it soon xx

By @enablingevie, Jul 12 2012 08:17PM

Ahhhh it's been a busy few weeks and I have some work to do to get myself a bit stronger for the next steps I have to climb. Auntie Jodie has offered to update the blog for me as I need to reserve my energy. Love hearing from you all and my mummy and daddy love seeing you all. Keep coming :)

Over to Jodie- I'm off for a doze

Much love

Baby Evie xxxx

So the past few weeks for the Shears have definitely been a rough ride. Evie's feeding tube has been incredibly difficult to manage and stabilise. After the insertion of a nj tube (still going through the nose into her tummy and down further into the jejendum) she was very sickly after session 6 of chemotherapy. This led to increasing amounts of vomiting and this eventually led to the tube being dislodged and coming out. Soooooooooooooo back to the ng tube but as Evie was having a ph study to look towards alternative feeding methods, she wasn't allowed to have her reflux medications for 3 days. This meant a really hard time for all with lots gagging, vomiting and feeling awful from chemotherapy. Due to a catalogue of frustrating errors and problems demonstrating the health system is clearly under too much pressure, it was 2 full weeks before the new, right size nj tube was reinserted and Evie could keep a sufficient volume of feed down to begin putting weight back on. A big set back in terms of wellness, thriving for minimal weight gain and overall reduction of distress. So many professionals and mum and dad are very disheartened that the teeny tiny flashes of progress that we saw a glimmer of hope, have to be initiated all over again.

Another impact meeting on monday and a room full of professionals. So incredibly overwhelming and draining for all of the family. Many things were discussed but the outcomes have been a bit sketchy. To summarise:

1) all being well with Evie's blood counts by next week, she has been booked into GOSH to have her hickman line removed and then a tube inserted through the intestine wall to feed her to stop the naso- feeding issues. She has to be stronger for this so fingers crossed she can get some more sufficient calories in her and some strength to go under general anaesthetic.

2) they are looking into providing an additional nights support for mum and dad to get some more help over the weekend.

As you can imagine after 2 hours to come out with 'possible' actions is very draining and hard to take, but fingers crossed these 2 things can go ahead.

There is also a big date coming up on the 25th July where Evie undergoes her examination under anaesthetic to review the next stages of treatment for Retinoblastoma. A big day as of course we all have our fingers and toes crossed that the tumours are responding to the chemotherapy.

Thank you to everyone who has been in touch, been to visit, followed on twitter and continued to help the family with thoughts, love and strength.

The website will be going under some maintenance at the weekend so please keep your eyes open for updated photos and changes to the fundraising pages.

Please do continue to get in touch if you have new ideas or any questions through the website contact form

So much continued love and admiration for the shears.

Much love and strength to baby Evie too

Jodes xxxx

By @enablingevie, Jun 25 2012 09:23AM

HAPPY BIRTHDAY MUMMY :) Let's eat cake :)

Well its been a hell of a weekend I can't lie! Chemo went ahead so hopefully with any luck there is no more of that yucky stuff for me! And I can get this annoying tube out so I can wriggle around in the bath :) Unfortunately last treatment was the worst :( made me soooooo sickly that I was sick up my horrid feeding tube. I couldn't help it but it made my Mum and Dad panic and they said lots of words I have not heard before! I don't think they meant for me to hear them!!

So off to the hospital again to try and put the tube back in. As this new tube goes into my intestine- its a bit trickier than my old tube so it means I need a doctor to do it and then I have to have a photo taken of my tummy to check it's in the right place. I REALLY didn't like this- it feels so yucky to have something stuck down my nose and sliding down the back of my throat, through my tummy and into my jejennnidum- that's what that word sounds like anyway:) More bad luck as they couldn't get the tube in the right place so I just had to had the tube into my tummy and then come back to the hospital next week to try again! It's soooooooo tiring- don't they know I have had chemo?!

I had a surprise visit from Mummy's friend Martine at the weekend. She sounds different to me but Mummy says its because she's from Ozzietralia :)

I hope I feel a bit better soon and I can bring you some good news.

I'm off to eat cake with my Mummy and Auntie Jodie- but Jodie's on a silly diet so she can only sniff the cake!

love to you all

Baby Evie

xx xx

By @enablingevie, Jun 20 2012 06:07PM

Sorry I've taken a bit of time to update everyone- things have been so crazy I'm not sure where to start. So daddy did the 3 peaks challenge a couple of weeks ago with some pals at work. I had a girls weekend with Mummy and Auntie Jodie- we watched some great movies- Home Alone 2, Hocus Pocus and First Wives club :) we had lots of fun playtime on the mat too and they showed me some different pictures that moved on a screen. I worked so hard to concentrate but it's very tiring. I am trying to lift my head up to see this world people talk to me about. I'm not liking bath time too much anymore. I'm not sure why but it just makes me a bit scared. My new favourite place is on my changing mat. My room is nice and bright and I really like laying in there. Another busy week and then a big day on Saturday 16th. Daddy was playing in a big football tournament that his friends arranged to help me. I really would have liked to have come but I hear there were tonnes of people there and it was a huge success. Thank you to everyone who helped :) Mummy and I stayed at home playing with Nanny Ford. I managed to wear a pretty party dress for my day- but I was sooooo sleepy I dozed off in it!! Daddy came home very tired - I think he thinks he's still 21!! ;) but luckily he got to sleep in on Sunday as it was Daddy's day- his first one. Everyone thinks their Daddy is the best, but I know mine is :) I hope he liked my present I got him :) we had a good day together and shared some smiles :) I love you Daddy :)

Over the past few weeks I've been having a few tests. My EEG (monitoring my brain) showed no change so the doctors aren't taking me off my medication yet! I don't like it much at all :( I had some bloods taken this week to get ready for chemo session 6- the last one I hope. My Mum was sooo pleased with me as my neutrophils were 4.0!! This is good apparently as they usually are 0.3-0.5!! However- a small hiccup today and Mummy had to take me to Epsom hospital as my Hickman line (where they put my yucky chemo) has an infection :( this is not what I need. A whole day of antibiotics today and we'll have to wait and see. Mummy has been quite sad today. She has been remembering her friend Anne. Unfortunately I didn't get to meet her but I know Mummy misses her dearly and wishes I could have met her.

Anyway I must go as I'm so very tired fighting this infection and have a tough few days ahead with chemo if I can have it.

Thanks again to all who helped make Saturday such a success. I think there are some pictures on this site of the day. Next week I hear there is a music concert at my Mummy's old school. Check out my events page to find out more.

Keep smiling- I'm trying to! Keep coming to visit us- I love hearing new voices

Love to you all

Baby Evie xx

By @enablingevie, Jun 2 2012 03:30PM

what a week!! Mummy and Daddy had a massive meeting on Monday to meet all the people who are involved with trying to look after me. It was really hard for them and hugely overwhelming. There are so many people and I find it tricky with so many new voices - this world is a pretty scary place.

Had to say goodbye to my friends at the Chase this week. I know its not goodbye forever but I have met some lovely people who try very hard to make me feel better. I wish I could show them that I like it there but the pains in my tummy hurt too much and I feel too poorly. I can only tell them about that right now.

After a hard week of fighting a nasty infection and trying to get a little stronger, I was allowed (that doesn't sound right?!) to have chemo this week. A long day on Thursday in a VERY hot GOSH. Session 5 done so hopefully only 1 more session of this yucky medicine that is making me feel even more poorly. I hope it's worth it!!

We had some new visitors the last couple of nights- some night nurses so that Mummy and Daddy could get some sleep. They are both so very tired. I wish I could let them sleep more but I'm too little to make myself feel better.

I have been hearing people talking about a special weekend this weekend. I hope everyone has a lovely time celebrating a special day for the Queen. I wish I could see all the parades and everyone having fun. I know my Mummy and Daddy would love to celebrate as they love the Queen and all things patriotic.

If anyone is around this weekend- please call my Mummy and Daddy to see if you can come visit. I worry they may feel even sadder this weekend and I am too sickly to stop crying.

Feeling sleepy from all my horrid medicines so I think I'll try steal some moments shut eye. I can't feel that lovely sunshine that makes me feel good. I hope it comes back.

hope to have cuddles with some of you soon

much love

Evie

xxxx


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