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Kelly Gurney

5 going on 15…

The scary thing about brain tumours is that the list of possible side effects is absolutely huge. If you think about how your brain controls your whole body just a small lesion in any part of your brain can cause catastrophic and sometimes irreversible damage. We already know that eyesight can be severely damaged, but due to the location of Eleanor’s tumour vital hormones associated with growth can also be affected.

Towards the end of the school summer holidays, Eleanor pointed out that she noticed a lump under one of her nipples, of course our immediate reaction was panic, any mention of the word ‘lump’ in a place where one shouldn’t be is frightening. After a short time we rummaged around in the boxes of our minds and recalled a conversation with Eleanor’s endocrinologist (hormone specialist) back in early 2015; due to the location of the tumour there was the possibility that Eleanor’s body could be forced into early puberty (or precocious puberty) Like most lists of side effects you rarely think it will happen, usually it’s a small percentage that encounter them so you tend to put them to the back of your mind.

We managed to arrange an appointment for 4 weeks later with the endocrinologist – a long agonising wait as consultants are busy and we had to give her body time to build up hormones to ensure there were no borderline results. Following the appointment and over the course of around a month, Eleanor had a number of tests; a physical examination, a hand x-ray to determine her ‘bone age’ an ultrasound of her uterus and ovaries and an LH blood test to test for a particular hormone in her bloodstream (click on the link for more information on the blood test)

Once all the tests had been completed we met with the endocrinologist at the Royal Marsden for the results. At this point I was completely certain that she was going into puberty as a lump had now appeared under the other nipple too, but that strangely didn’t prepare me for the absolute certainty the consultant had when she looked through the results in front of us. Eleanor’s body was 100% going into early puberty. I cried immediately, I didn’t think I made a sound but Eleanor put her hand on my lap, looked up at my face and then put her hand on my cheek to feel my tears. She is so aware of everything, I suppose its true that her other senses are heightened due to her loss of eyesight. I couldn’t tell you why I was suddenly so upset, maybe just the confirmation and realisation that this was something else my darling girl has to face which will hurt her and could cause its own bunch of side effects.

We were told that treatment will consist of a monthly intramuscular (IM) injection that Eleanor will have to have exactly every 4 weeks until she is eleven. We were then told that treatment was to start immediately, as in, that day which we were certainly not prepared for, so we were given a prescription and sent off to the nurses on the day ward. When the time came Eleanor sat on my lap and her favourite nurse administered the injection. Unfortunately it wasn’t as straight forward as we had hoped; the needle provided with the drug pack was too thin for the gloopiness of the mixture so it blocked meaning the nurse had to take the needle out of her leg and replace it with a bigger one! Eleanor was rigid in my arms, sobbing and asking if it was over yet. Tears were running down my face, it never gets easier seeing your child scared and in pain. Never. It was quite a traumatic experience for her and despite her bravery it was all too much and she was sick in the car on the way home, resulting in an afternoon of cuddles and loom bands instead of school.

Thankfully this is something that can be treated but as with everything it brings it’s own set of challenges. She may have a change in mood close to the time the injection is due – imagine a 5 year old with PMT! There is also the chance that when the injections are stopped her body will not naturally go into puberty and she may need some help.

Yes, more injections!

A fond farewell…

Portacath removal day!

 

 

We arrived at St Georges Hospital very early on Monday 12th December. Walking through those brightly lit hallways again was the strangest feeling. We hadn’t been back there since we were discharged after Eleanor’s diagnosis almost 2 years previously and quite frankly we were both hoping we would never have to go back. It’s sad that you can hold such negative feelings towards a place that saves lives every single day, but like smells that transport you back to a certain time or place, being back in the place where we were given news that changed our lives forever it was hard not to feel angry at it’s very existence.  its a very big busy hospital but the corridors are eerily quiet at 7am.

We went straight to the day surgery ward and were shown to Eleanor’s bed for the day. After the usual paperwork, chats with nurses and long talk with the surgeon we settled ourselves ready for a long day of waiting around. Eleanor was her usual chilled self and didn’t seem worried or concerned about what was about to happen. She had grown quite attached to ‘Porty’ and was asking if she could keep it once it was taken out – thankfully the surgeon told us that wouldn’t be allowed!

The wait wasn’t long and as there was a child who didn’t make it on the day for one reason or another Eleanor was bumped up to second on the surgery list. She was weighed, blood pressure taken and her portacath accessed one last time ready for the anaesthetic to be administered.

The reason this post is called ‘A fond farewell’ is because that little device made those 18+ months in treatment so much more simple. Without it, every single blood test would have meant a needle in a vein. Every single chemo treatment and MRI scan would have meant a cannula. Over time, if accessed regularly, veins harden or just disappear making it extremely difficult to take blood or insert a cannula. All anaesthetic for future MRI scans (until Eleanor can lie still for 45 minutes, awake) will be administered via a cannula but as they are only every 3-4 months it shouldn’t cause any problems. Cannulas bloody hurt. Eleanor hates them but would choose them every time over the alternative, the smelly gas mask!

When we were called to take Eleanor around to theatre, I sat her on my lap and hugged her tight while the doctors and nurses scurried around turning on machines and hooking her up. After a few minutes the button was pressed and I whispered in her ear that I loved her and would see her soon. Feeling her go limp in my arms always takes my breath away for a few moments but I will do it until the day she asks me not to!

Eleanor was probably in theatre just over an hour. Long enough for us to pop and grab some lunch. When they called us to let us know she was out we headed towards recovery and we heard her before we saw her! Unlike her usual sleepy, groggy reaction to waking up from the MRI anaesthetic Eleanor was screaming the place down, she was hysterically crying and trying to sit up. We did all we could to calm her down and let her know we were there but it took a good half an hour before we could take her back to the day ward.

 

 

The operation was successful and only one cut had to be made to remove the port, unlike the two that were needed to insert it. Eleanor was sleepy and in pain but we managed to get her to eat a few bits so she could be discharged and we could take her home to recover. A few days off school should do the trick! x,

DIPG…

Being told your child has cancer is quite possibly the worst news you can ever imagine, right?

Wrong.

With a childhood cancer diagnosis there is always hope, hope of a cure, hope of treatment, hope of a future.

Not with DIPG.

Earlier this year I came across a story of a 9 year old girl in the states called Katherine ‘Katie’. A year ago she was diagnosed with a type of brain tumour called DIPG (Diffuse Intrinsic Pontine Glioma)
This is a malignant tumour located in the pons (middle) of the brain stem and is terminal upon diagnosis. Yes, you did hear that correctly. Terminal.

There is no treatment protocol for this type of brain tumour. Radiotherapy is offered, providing a small amount of respite but the tumour always comes back. Surgery is not an option. These tumours invade diffusely throughout the brain stem, growing between normal nerve cells. Aggressive surgery would cause severe damage to neural structures vital for arm and leg movement, swallowing, breathing and even consciousness.
Katherines parents watched their child waste away over the course of a year until she finally passed away in June, a fraction of the person she was, barely able to communicate in any way.

Here are some brain tumour statistics:

In 2013 there were 10,624 people diagnosed with a brain tumour.

In 2014 5,223 people died from a brain tumour, that’s 14 people per day!

 Only 14% of people diagnosed with a brain tumour will live for 10 or more years.

Brain tumours kill more adults and children under 40 than any other cancer.

1 in 74 people will be diagnosed with a brain, other CNS (central nervous system) or intracranial tumour during their lifetime

DIPG has a 0% survival rate and a child diagnosed with DIPG may only live a few months.

Stories like Katie’s absolutely break my heart, but I make myself read them and I make myself try to understand. There simply is not enough knowledge about brain tumours. We’ve almost cracked breast cancer but in 2014, brain tumours received 1.5% (£7.7 million) of the £498 million national spend on research into cancer. At this rate, it could take 100 years to catch up with developments in other diseases.

Last year in the UK an E-petition was started, it’s aim was to increase the funding for research in to brain tumours. Over 100,000 people added their signatures and it was the first E-petition ever debated in Parliament. The debate took place in April this year and hundreds of MP’s attended having spoken to people in their constituencies currently battling or having lost a loved one to a brain tumour. We hope this has shed some light and creates more awareness into such an unknown area. Our main aim and the aim of all parents who lay bare the lives of their children who are fighting such a battle is to raise awareness, one day we may find that miracle cure so that the families of children like Katie can at least have hope.

Rest in Peace, Katie x

This link to the website set up by Katherine’s parents. Please don’t look at this if you are easily upset or offended. Katherine’s parents are highlighting the devastating effect DIPG has had on their family.
http://katherinethebrave.org/

A Huffington Post article written by Katie’s Aunt.

Reality check…

Just when you think you are done, just when you think life can start to take on some normality, chemotherapy reminds you who is boss by punching you in the stomach and running off laughing….

 

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F*** you chemotherapy.

You might take her hair but you’ll never take her smile!

 

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End of chapter one…

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Today my incredible little girl rang the end of treatment bell at our local hospital after receiving her final infusion of chemotherapy. She has endured 18 months of being poked, prodded and injected with toxic drugs, yet not once has she complained.*

*That’s a lie, she complains about the nil by mouth procedure every time she has a scan because, and I quote:

“it’s too long to go without food and when I wake up I’m starving my head off”

Unfortunately due to the nature of Eleanor’s condition this won’t be the last time she rings this bell and we are facing the prospect of more chemotherapy. If we are REALLY lucky she might avoid chemotherapy and the next treatment will be radiotherapy – or hopefully proton beam radiation therapy – when she is around 8 years old.

We’ve reached a point that feels like an end and we’re cheering because we’ve finished this leg of the journey. Everyone is pleased and we’re pleased, it’s a huge accomplishment because I cried for months and could never imagine being here feeling remotely OK with the hand we’ve been dealt, yet here we are.

However… despite the massive and amazing achievement, we have the haunting, looming shadow of knowing that something bigger, harder, scarier could potentially leap out at us at any point. It’s hard to feel too good and my stomach ties in knot at random moments when the thought enters my head. It feels like we’ve been sent on our way with our little girl who has a ticking time bomb in her head only we aren’t doing anything about it now!

The next phase we enter is called ‘watch and wait’, As I explained in my previous post Eleanor is scanned every 3-4 months and if the tumour shows sign of growth chemotherapy is resumed only with a different combination of drugs. All we can hope for right now is a good chunk of time where her tumour remains stable and her little body is given the chance to recover.

Today is for you my little hero. You’ve opened my eyes over the last 18 months and without even knowing it have taught me what real strength is.

Eleanor, a true warrior princess.

My daughter. My whole world.

I love you x

Today…

Today we are stuck in hospital watching poison being pumped into our daughter’s body when she should be out enjoying one of her school friends birthday party’s.

We are running for sick bowls when we should be running in the park.

It’s a parents worst nightmare come true, but we fight every day with a smile on our face. It will never beat us down.

#eleanorsvoice

Image Courtesy of: I draw childhood cancer

Small Victories!

 

When you are part way along a roller coaster of emotional upheaval and things seem to be steadily going downhill you can find yourself reluctant to celebrate the small victories that pop up at unexpected moments.  I see the positives in most things, I like to enjoy the moments when something good happens, but does that make the low moments lower?

I don’t think so. Low moments are not softened by refusing to celebrate the high moments, bad news is bad news and you can never truly prepare yourself for that. It doesn’t make receiving bad news any easier if you are mostly grumpy and miserable or mostly happy and joyful.

With that in mind I have some unexpected and extremely positive news to give you all. Following Eleanor’s recent MRI scan…

It’s only gone and bloody shrunk!

It is a tiny amount, a few millimetres perhaps but WOW, after 15 months of treatment and countless ‘stable’ scans I was seriously not expecting to be shown a scan where there is a visible change to the shape and enhancement of that damn tumour.

The plan is to continue and complete the chemotherapy protocol which takes us to the end of July, unless Eleanor shows any signs of toxicity (high temperatures leading to hospital admissions or requiring blood or platelet transfusions if her cells struggle to recover) Once that has finished Eleanor will have a small operation to have her portacath removed and will be scanned every 3-4 months to check for signs of growth. All we can really hope for at that stage is a long period of stability. The tumour is likely to grow at some point and then a new protocol of chemotherapy will begin to hopefully shrink or stabilise it.

Until then I will bask in the sunshine of positivity and be grateful for these small victories that give us chance to feel that there is something to be thankful for!

 

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The Purple Gala Ball…

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To all our guests…

For us, the Purple Gala Ball was a truly magical event and we wanted to say thank you. After such a fantastic night
we came back to reality with a bang; the very next day Tim went away with work for 5 days. Eleanor was back at school on the Monday, not long after, started week 61 of chemotherapy treatment and Kelly went back to work. Also and most excitingly, building works have commenced on our house! It has quite simply been a whirlwind 2 months so far. The Purple Gala Ball is a fantastic memory, one we’ll never forget.

Where do we even start with this thank you? There are so many words we could use to describe how successful the ball was; the objectives, to not only raise awareness but also to improve our home was surpassed in a way we could’ve only dreamed of, and YOU made this possible! The money you collectively helped to raise for our family will change our lives forever and has already begun to create a safe, spacious environment for Eleanor to grow in.

When our daughter was diagnosed with a brain tumour in 2015 our lives were quite literally turned upside down. All our hopes and dreams were shattered and we had to very quickly adapt to a new way of life, a new normal, but the amazing kindness of others has lightened our darkest days, and made us see that despite the hardships we might face, we are never alone.

Of course we cannot write this without a few individual and more personal thank you’s…

Our biggest thank you must go to Charlotte Baxter-Hassall of Heart Anchor Events Limited. The Purple Gala Ball would never have happened if it wasn’t for Charlotte’s kind heart and tenacity. She truly is an incredible friend and we will never be able to thank her enough for the difference she has made to our family.

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Secondly a huge thank you to Aaron Brown of Onecom, our fantastic friend and real life fairy Godfather, who, with a little help from his team, worked alongside Charlotte to help make the ball such a success. Without the help of Aaron the corporate presence of the ball would not have been what it was. Another person who has made such a big impact on our family and another person we are extremely proud to call our friend.

Thank you to Ed Giddins of Full Event Management for all his help and the silent auction which was a huge success! Ed is a friend of Tim’s and was deeply touched by Eleanor’s plight, offering his time and fees for nothing, an extremely kind gesture on his part.

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Thank you so much to Imperial Car Supermarkets, our Platinum sponsors, who’s beautiful cars adorned the entrance. Imperial very generously provided the welcome champagne and nibbles reception, which certainly kicked off the night in style!

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Thank you to all the Gold and Silver sponsors, too many to name individually, we hope you all had a great night and enjoyed yourselves, thank you for helping to make the night what it was, and to everyone that kindly donated an auction or raffle item we are overwhelmed by your generosity.

A huge thank you to the companies who donated their time and products to make our ballroom and entrance look so beautiful. ‘Strawberry Fizz‘ who worked overnight and all morning prior to the ball to dress the tables and ‘Doris Loves‘ for the incredible light up letters so #ELEANORSVOICE could welcome you as you arrived.

 

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A heartfelt thank you to the splendidly wonderful and glamorous host Emma B, auctioneer Matt Hopper, Jim Davidson OBE (Heads & Tails), The London Function Band and Marley Blandford for the entertainment and music they collectively provided.

There were so many players in bringing the Purple Gala Ball together so precisely with such professional ease. If you haven’t been mentioned you’ve certainly not been forgotten, we are eternally grateful for all your help.

Lastly, to all our guests, without whom there would have literally been no ball, you made such an effort to be there on the night, you were all more than amazing and were certainly dressed to impress, we just cannot thank you enough for being a part of this and supporting our little family.

Tim, Kelly & Eleanor x

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An invitation to Parliament…

 

Thanks to our lovely local MP Tania Mathias, we were all invited for tea and scones at the House of Commons and were given the incredible opportunity to meet the inspirational Lord Chris Holmes.

Lord Chris Holmes is Britain’s most successful Paralympic swimmer with a tally of 9 golds, 5 silvers and 1 bronze. He was also LOCOG’s Director of Paralympic Integration, responsible for the organisation of the 2012 Paralympic Games in London.

After retiring from competitive swimming Chris worked as a journalist before qualifying and working as a commercial lawyer specialising in employment and pensions. He also took non-Executive Director roles at the Disability Rights Commission and UK Sport and was an Ambassador for the successful London 2012 Olympic and Paralympic bid.

On top of all of this at the age of 14 and completely unexpectedly Chris went blind overnight and his list of achievements has only grown since. A huge inspiration to us and people of all disabilities proving anything is possible!

#YesIcan

Acceptance…

acceptance
əkˈsɛpt(ə)ns
noun
  1. the action of consenting to receive or undertake something offered.

is it possible to accept that your child has a potentially life threatening tumour in their brain?

Is it possible to accept that due to the location of this tumour their eyesight has been reduced to almost nothing?

It is a really hard question to answer. On my many positive ‘good days’ I would say that yes, I have accepted it. These are the days when I feel most confident about what the future holds for Eleanor, the days when I can push past the possibility that the minuscule amount of sight she does have could be taken away if her tumour decides that it wants to grow.

I think that is the reason why young children fighting terrible illnesses do so with such tenacity, they do just simply accept it. They don’t think ‘why me’, they don’t dwell on the past or worry about the future, they live in the moment. If something uncomfortable or upsetting happens it’s all forgotten the second someone passes them a sweet or a sticker.

We could all learn something from children, they have the beautiful ability to find joy all around them. Every day is new, move on, be brave, be courageous and laugh every day.

 

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