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Kelly Gurney

Symbol cane or neon sign…

Alongside all of the medical people we have to see at the hospital, Eleanor also receives support at home and nursery from visual impairment specialists, one of which is a mobility teacher who will assist her in learning to move around independently.

Eleanor has been given two white canes. One is called a ‘Long cane’ and is primarily used for mobility purposes by detecting objects in her path. The other is a ‘Symbol cane’ and is exactly what it suggests it is, a symbol. A symbol which alerts others of her visual impairment.

Due to her age the long cane isn’t entirely necessary yet as she always holds our hands when out walking, she would also not be out walking alone, yet! It is, however, important for her to get used to holding it and using it so when the time comes she will be confident enough to start the process of becoming more independent.

Eleanor cane

I have mixed feelings about the symbol cane. In a way I feel at her age it is completely unnecessary. Eleanor is always with us and she never leaves our sight. However, people now move out of her way when walking towards her. Mothers move their prams instead of almost running her over. My job guiding her around people is made so much easier when she has that cane. People move on buses and trains, they actually get up and let us sit. That would never happen without it. People are more patient when we are walking up and down steps. Instead of rushing past, they stop and wait.

Despite all of those benefits, I still want to snap the bloody thing in half. It’s like a massive neon sign shouting to the world that Eleanor is blind. People rarely need to know she cannot see. I hate the fact that people now look at her with sympathy, or even worse, look at me with sympathy. People who would normally just walk past her and ignore the little girl skipping along with her Mum and Dad. I had my reservations as soon as it was mentioned she would be getting one, but I understand why she needs it and how useful it will be to her. Unfortunately, one of the first times I took her out with it my reservations were validated.

Tim was away working in Paris for the weekend and Eleanor’s ‘Nana’ & ‘Gaga’ (my Mum & my Step Dad) had come to visit. We had been out for dinner and decided to have a little walk. Eleanor was skipping ahead hand in hand with her Gaga, holding her cane and my Mum and I were trailing behind when a lady walked past, stopped, tapped her husband on the shoulder, pointed at Eleanor and said in a loud voice “Oh, look at that poor little girl, she’s blind”

I felt the tears sting my eyes and it took every ounce of strength in my body to keep walking and not scream at her. I was devastated. It made me feel sick with anger and pain. Her words still echo in my head every single time I see that cane. I wish I could have found the words to explain to her how that comment made me feel at the time. I wonder how she would have felt if I had walked past her, pointed and said “Oh, look at that poor lady, she is very overweight”

Would that have been any more acceptable!?

I am sure she meant no harm with what she said. She was simply pointing out the obvious in her mind. I am also sure that she would have been extremely embarrassed had she known how hurtful her words were to me, that poor little girls mother.

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People now look at Eleanor, not because she is a pretty little girl with a beaming smile (yeah, yeah, I am totally biased, I know!) but because of that neon sign in her hand. I walk around with my gaze slightly down, partly because I am now Eleanor’s eyes. I have to watch out for obstacles she might need to avoid or be made aware of; broken paving slabs which she could trip on or kerbs to step up or down, but partly so I don’t have to see the faces of others as they battle with whether they should smile or pretend they haven’t noticed.

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It will certainly take some getting used to. I still can’t quite believe that any of this is actually happening full stop, but one day I know I will be able to walk with my head up, talk to people if they say something which hurts my feelings or catch the eye of the odd stranger and smile, giving them the confidence to smile back and see my daughter for the wonderfully happy and confident little girl she is, instead of ‘that poor little blind girl’.

End of induction…

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Eleanor’s chemotherapy schedule is split into two parts. The first is called ‘Induction’ which covered the first 24 weeks of her 18 month schedule. This began with 10 straight weeks of weekly chemotherapy, followed by treatments on week 13, 17, 21 and 24.

From week 25 (which begins on the 3rd July) we move into the second part which is called ‘Consolidation’ During this phase she has 3 weeks of weekly chemotherapy followed by a 3 week break and this continues for just over 12 months.

We are now at the end of the induction phase. I simply cannot believe how fast the time has gone and now we have reached this juncture, I feel like I have taken a big deep breath and started to reflect on the last 5 months of our lives.

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People say to us all of the time, “I just don’t know how you do it, I’d be a mess” and the truth is, you probably would be a mess, but you would still do it. You wouldn’t lock yourself in a room and leave your child to fight alone, I don’t believe any parent would. Yes you will find it hard, yes you will probably at times think your child is going to die, but you will still push on and you will still fight alongside them until your last breath.

There was a point right at the start when I thought I would never understand all of the medical jargon, that I would need to get a degree in nursing to even begin to make sense of any of it, but now I do understand the majority of it. I can usually reel off her last blood counts with the knowledge of what each one means and it may have been daunting at the start, but that part has become much easier with time.

Some oport doggyther things become easier with time. Instead of having to hold Eleanor down screaming when she has to have her port accessed, we now just have to talk to her, calm her and hold her arm or t-shirt out of the way so it doesn’t touch the part the nurse has just made clean and sterile. I always hold my breath until that needle is in, every single time, and I have lost count how many times that has been now. The process is getting easier, but it will never be easy to understand why she has to go through it.

You have a million people around you praising you for your strength and positivity, spurring you on, helping you over each hurdle. It’s amazing and heart warming but it also has kind of a negative effect. What if you have a day where you don’t feel strong? A day when everything is just too much and your haunting negative thoughts are overwhelming. A day where you just want to scream because it’s all so incredibly unfair. Will these people be disappointed in you? Will they lose their admiration? Will you lose their support? Because let’s be honest, it’s much easier to support someone with a smile on their face than someone crying into their coffee!

I think I am naturally quite a positive person so it comes easily  to me to be happy and positive and see the best in a bad situation. There are days when I do feel a bit hopeless though, I look at little girls riding along on their scooters or bikes with their parents trailing behind, playing in the park unaided or sitting quietly and watching Disney films and it breaks my heart that Eleanor misses out on those things. Those things that when you become a parent you just take for granted your child will eventually do. I feel jealous of people when they complain that their child has a cold. I wish Eleanor just had a cold. I wish I could give her some Calpol, a cuddle and it would all go away. But it won’t. When someone takes their child to the cinema to watch the new big film. I’m honestly dreading when the new Frozen film comes out. Eleanor loves Frozen, she was and still is a huge Frozen fan but she won’t be able to watch the new film. When all of her friends at school are talking about Elsa’s new dress it will mean nothing to her.

Thankfully these days are rare and when Eleanor smiles her beautiful brave smile or laughs her infectious laugh, all the pain just goes away, back into a little box inside my head, where I hope, one day, it will be able to stay.

 

 

 

Time for a little break.

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Thanks to the wonderful charity Momentum we were able to take a well IMG_7139earned family break in the New Forest at the end of May. We got to stay in Momentums beautiful cabin in a country park near Milford on Sea and had a fantastic week relaxing, making memories and relaxing some more. We took Eleanor to the beach a couple of times, and thanks to a friend, out on a boat for a day trip to the Isle of Wight.

Keeping a 4 year old child entertained can be a difficult at the best of times but when that child cannot see it makes things so much harder. It was heartbreaking knowing she couldn’t see the beautiful blue sky and the huge sandy beaches. There were some little bunnies that scurried around near our cabin and I would have given anything for Eleanor to have seen her favourite animal hopping around right near her. We did our best to describe everything we could, so she didn’t miss out on too much. We are so fortunate that she has memories of lots of things and seeing the smile on her face when you explain something she remembers makes everything worthwhile.

The week went way too fast and we are hoping we might get to go back again at some point this year!

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Scanxiety…

Thankfully the week following Eleanor’s cancelled MRI scan flew by and before we knew it, it was groundhog day and we were running through our pre general anaesthetic checklist and filling Eleanor with as much food as possible before she became nil by mouth in preparation for the rescheduled MRI.

Prior to the MRI scan we had a meeting with Eleanor’s Oncologist, we hadn’t seen him since February so it was nice to chat with him again and see how happy he is with her progress. She appears to be coping exceptionally well with the chemotherapy and is in very good health considering the toxic chemicals they are pumping into her tiny body.

I have to credit Tim here; having fought his own battle with cancer 10 years ago, he knows so much about keeping healthy when on chemotherapy. Tim is on top of everything and without him Eleanor would probably not be doing as well as she is. I am learning as fast as I can but I can honestly say that without Tim we would not be where we are now. If you are interested in reading about Tim’s experience, here is a link to the diary he wrote shortly after he was diagnosed in 2004 – timstollery.com – just make sure you have some tissues close by!

We talked about the impending MRI scan and Eleanor’s Oncologist told us that he understood how anxious a time this is for us and that he would call us the next day with the results of the scan so we didn’t have to wait too long and worry ourselves.

Tim and I had discussed how we would ideally want the results given to us. I was really against getting such important news over the phone and would have preferred to wait for another appointment with the Oncologist, than take a call which might not be good news.

Tim was happy to leave this decision solely up to me and I reluctantly agreed, providing the call would be from the Oncologist himself.

This also meant we wouldn’t have to wait too long to hear the results or wait for another appointment with the Oncologist. My reasoning behind only wanting to hear from the Oncologist himself was that if I had any immediate burning questions during the call, I would be talking to the best person to answer them.

After our meeting we headed back to the day ward. We chatted with the ward doctor, nurses and anaesthetist, signed some paperwork and spent some time racing Eleanor around the ward in a little car. Tim and I had secret eating shifts where we got to hide from Eleanor and stuff sandwiches in our mouths. We felt that it was unfair eating in front of her, despite her visual impairment her sense of smell is impeccable and especially as she kept asking how long it would be before she could eat something again!

We were just in the middle of putting her new Beads of Courage on the string when the nurse came into the room to tell us they were ready for us to take Eleanor down for her MRI. We grabbed everything we needed and carried a very frightened little girl through the hospital to another waiting room. Here we had a quick chat with the radiographer and ran through some general questions regarding Eleanor’s health and then we were ushered through to the room where she would be given the anaesthetic. By now Eleanor was very upset, she was crying and clinging to me saying she wasn’t ready yet and asking me to not let them do anything. We sat on a chair and she cuddled into me sobbing while the anaesthetist asked some more questions. Fortunately her port was already accessed so they just attached a syringe with the anaesthetic to the end of it and within 3 seconds she went limp and the doctors lifted her off me and on to a bed.

I turned one last time as we left the room and I heard those familiar words “don’t worry, we will take good care of her”. Tim and I headed back down to the day ward together holding hands with our hearts in our mouths, Tim was doing his best to hold back the tears and although we knew there would be no immediate news, there is always that tiny niggling worry somewhere inside which runs through every worst case scenario in fast forward.

After what seemed like forever, we saw Eleanor being wheeled back into the day ward and we got to have a cuddle while she slowly woke up. It didn’t take long and within an hour she was wide awake and stuffing her face full of snacks, after an hour had passed and she showed that she was well enough, we were allowed to head off home. Now it was just that agonising wait for the all important call with the results the next day.

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The next day I had to work but Tim promised me he would call me as soon as he heard anything so I spent the entire day watching my phone, trying hard to concentrate on my work. The anxiety was overwhelming, like nothing I have ever felt. I had a physical pain in my chest all day and each time my phone lit up I thought I was going to be sick.

Surprisingly, we didn’t get a call that day!

They say no news is good news, at least this is what you you try and tell yourself when you are waiting on news like this. Convincing yourself that everything is fine whilst your mind is in overdrive.

The next morning came and went. Shortly before midday Tim emailed Eleanor’s Oncologist and specialist nurses asking if someone could call us with the results. The waiting had become too much, we had a bank holiday weekend ahead of us and we knew there wouldn’t be anyone calling us until at least Tuesday.

Finally, a few hours later we received a call from one the specialist nurses. This was not what I wanted, we were promised we would get a telephone call from Eleanor’s Oncologist by him the day before. I was really disappointed, but by now I was so desperate I just wanted to know everything was okay.

The nurse told us that Eleanor’s tumour has not shrunk with the chemotherapy she has been given so far. This news made my heart sink immediately. She then said that despite this, the tumour has not grown, has remained stable and that we should be very happy with this positive news. I passed the phone to Tim and paced the living room floor crying a mixture of a relief and disappointment. The anxiety and pain in my chest was gone but had been replaced with a heartache of a different kind. I know the nurse said we should be happy the tumour hasn’t grown. It is good news, but I wanted better news, I was hoping for better news.

It took a while for the news to sink in. To be fair we are really only part way in to a very long chemotherapy journey and perhaps we cannot expect things to change that quickly. We have been told that this type of tumour can be stubborn to treat so it may take some time before we see any change.

We will carry on, we will remain positive and hopeful on this roller coaster of ups and downs, but most of all, we will do everything in our power to ensure our daughter keeps her fighting spirit!

 

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A duck and some beads…

There are some amazing, big charities out there doing some incredible pioneering work, then there are the smaller ones, the unsung heroes. The ones who tend to be overlooked but do something so worthwhile and so meaningful for a child going through such a traumatic experience at such a young age that they need to be recognised. I am sure there are many other similar charities out there but there are two which are now very close to my heart.

The day that Eleanor was admitted to the ward at the Royal Marsden for her portacath surgery we were given a yellow fluffy duck dressed in blue hospital scrubs in a plastic bag. We were told his name was Chemo Duck and that he came with a matching head scarf for Eleanor. At that point we never realised just how important Chemo Duck would become to Eleanor and how invaluable he would be to her during her treatment.

Chemo Duck comes cCDuckomplete with a portacath (or hickman line depending on the type of line the child has) which means the child forms an almost immediate bond with it. Our chemo Duck has a funny, kind of bewildered expression too which always makes me smile!

Chemo Duck also comes with his very own  ‘wiggle’ which attaches with velcro to his port, the lovely nurses at the hospital gave us a syringe which we attach to his ‘wiggle’ so Eleanor can give him his medicine just the way that she has hers. Every time Eleanor has any medicine be it though her port or tablets/liquid, Chemo Duck has some too. Every time we go to hospital for chemotherapy or a blood test, Chemo Duck has the same treatment. Listening to Eleanor talk to him and tell him what is happening is truly inspiring. She talks him through the whole process which without her knowing herself, is helping her understand everything that is happening to her. She tells him things won’t hurt, or that things might not taste nice but are really important. We play along, we do Chemo ducks voice and sometimes make him play up just like Eleanor does to see how she copes with it, mean parents aren’t we!  She would make an excellent nurse, at 4 years old she already has an incredible bedside manner!

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The following day whilst Eleanor was recovering from her operation, one of the play specialists came to talk to us about the Beads of Courage programme. It’s a reward programme, like a star chart for behaviour or potty training. Thankfully as well as being coloured, the beads are often tactile so Eleanor can feel them. Each bead colour signifies a different experience throughout her treatment. For example, a white bead is given each time she has Chemotherapy, black beads are for blood tests or any time her port is accessed and yellow beads are for an overnight stay in hospital/admission. There are lots more, I won’t bore you with them all! There are also special beads to signify overcoming medical challenges or hair loss.

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They are therapeutic to both Eleanor and to us. We almost look forward to collecting the beads when we are at the hospital as much as she does! Eleanor is so proud of her beads, she loves showing them to people and will sit with me and go through them whenever she meets someone who hasn’t seen them before. She is most proud of her ‘Princess’ bead. This one was given as a special reward when she finally got over her fear of the blood pressure machine (or the squeezy puff as she calls it), for a while she wouldn’t let anyone come near her with it, as soon as she heard the noise of the velcro she would scream. It took Tim many hours of persuasion to overcome that hurdle. Big cheers for Tim there and his perseverance because it was looking like a losing battle at one point!

 

My favourite bead is the ‘Hope’ bead. It is one of a kind, given to Eleanor when she was officially registered blind. It signifies – for me anyway – not giving up. There is always a small chance that some of Eleanor’s sight may return as the treatment progresses. However small that chance may be, 5, 10 or perhaps only 15 percent, I am clinging to that and running with it, because even 5 percent is better than nothing at all.

Never give up hope. It is the only thing stronger than fear.

 

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So there you go. Two simple yet incredibly rewarding ideas that make such a horrible experience that little bit brighter!

Life is a rollercoaster…

After the cancellation of Eleanor’s MRI scan we had to wait another month for an appointment to become available. It is impossible for a child of Eleanor’s age to keep completely still for an extended period of time – she doesn’t even stay still when she’s asleep! – so a general anaesthetic is required which means a whole team of people are needed to make sure everything goes smoothly.

On the morning of the 22nd April we got up early to make sure Eleanor had plenty to eat and drink before she had to be nil by mouth in preparation for the general anaesthetic. We packed overnight bags just in case of any complications and made our way on the familiar journey to the Royal Marsden hospital in Sutton.

Eleanor had lots of fun playing in the playroom and we even had a visit from Doctor Dotty and Doctor Yoho from the Theodora Children’s charity. They sat and played with Eleanor and made her laugh for ages, it really helped to make the time go quickly.

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During the long wait, we had a chat with the doctor, filled in some consent forms and also met the anaesthetist who would be looking after her while she was asleep. We were told that because she now had her portacath the anaesthetic could be administered through that, saving the stress of the ‘smelly mask’. It would be quick and much less traumatic than what we had experienced previously when Eleanor had been given a general anaesthetic.

The scan wacuddles due at around 3;30pm and as the time drew closer I was watching the clock like crazy almost wishing the time away yet wanting to stop it at the same time. When I have spoken to other parents about this they have all said they have the exact same feeling and have affectionately named it ‘scanxiety’. Like any test you are having or waiting on results for, the conflicting feelings are overwhelming. I was desperate to know the results and at the same time petrified that it could possibly not be the news we had been hoping for!

The time ticked by and I was getting more and more anxious. I watched as another child was carried in by a nurse to her Mum after her scan and was sure we would be called next. Just as I was about to say that to Tim, the doctor came into the room and closed the curtain behind her. She told us that the child in the bed opposite had become very poorly and needed to be sedated and transferred to another hospital, because of this, and due to them only having one paediatric anaesthetist on at the time, they needed the one that had been assigned to us and Eleanor’s scan would have to be cancelled.

My immediate reaction was anger at the waste of a whole day, and I snapped that it was utterly ridiculous that they only have one anaesthetist, then it hit me that we would have to wait AGAIN for another scan and that’s when the tears came. I understood why the scan was being cancelled, I understood that there was a really poorly child that needed urgent help and I knew that if that had been my daughter I would want all the stops pulled out to make her better, but it didn’t stop the overwhelming disappointment that engulfed me. I was so desperate to know if all the crap they had been pouring into her over the last 15 weeks was having an effect on the tumour or if it had acheived nothing at all.

Now we had to wait, again, and we had no idea how long for.

I could see Tim was torn between comforting me and going with the Doctor to discuss a possible date for a rescheduled scan, you have to grab these Doctors while you can! He scooted off with the Doctor giving me time to compose myself and feed Eleanor. Having gone 7 hours with nothing to eat at all she was pretty hungry by this point. Funnily enough she wasn’t phased one bit, like with every thing else that she faces, she smiled and said “it’s alright Mummy, we can just have the scan another day”.  I love how kids can make you feel like an utter fool with one sentence!

I felt a bit downhearted over the next 24 hours. I cried a lot until we finally got the call the following afternoon to say that we only had to wait a week for another scan.

This whole journey really is one big rollercoaster of emotions!

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Thank you!

Since Eleanor’s diagnosis our friends and family have been such an incredible support to us.

My female friends from my home town in Hampshire have rallied around and made me feel like I’ve been in some kind of protective bubble of love – it’s almost impossible to feel negative when you have a hoard of girls filling you with positivity at every turn.

For the first ten weeks of Eleanor’s treatment we received a box every Friday filled with goodies to make our time in hospital that little bit more bearable. Each box was sent from a different one of my old school friends and each box was beautifully unique. Books, toys, chocolates, pyjamas, some lovely cards and even a jar of Gherkins (thanks Cathy!) were included, and I found myself almost looking forward to chemo day just to open a box! This was all organised by my wonderful friend Louise who has been a constant support throughout.

My friend Caitlin, who lives up the road, has even made dinner for us a few times and dropped it in to us so we didn’t have to think about cooking!

Friends, and people we don’t even know are raising money for Eleanor’s ‘fighting fund’, taking time out of their busy lives to spread the word and help us raise awareness in to the early diagnosis of childhood brain tumours. You can see details of some of these under the donations section of Eleanor’s Website

We really are beginning to run out of different ways to say thank you to everyone!

So… to anyone who has called or sent a quick message to see if we are ok, anyone who has followed Eleanor on Twitter or Facebook and shared to other friends to get her story out there. Anyone who has, or continues fundraising for her ‘fighting fund’. For all the cards and wonderfully thoughtful gifts that are still coming regularly, and anyone else I may have missed…

 

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xxx

A little bug and a birthday…

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Eleanor decided, a day before her routine MRI scan and two days before her birthday, to show us exactly how quickly children having chemotherapy can get sick and go downhill. On the Saturday she was her usual happy bouncy self and even when she woke on Sunday morning she appeared fine, but as the day went on she became tired, tearful and clingy. Her temperature was up and down peaking at around 38 every now and again. By the time the evening came we were getting worried so we called the hospital and were told to take her in for them to check her over…

We arrived at the hospital and a nurse took us straight into an isolation room to wait for the paediatrician to come and see us. Eleanor lay on the bed and barely moved the whole time, so we sat, worrying and waiting. When he arrived we saw that it was the same paediatrician we’d met on our visit to A&E back in early January – how far we had come since that day!

After an examination we were told that Eleanor had probably picked up an infection, so some blood was taken, she was put on intravenous antibiotics immediately to start tackling it and we were told we would probably be staying in for a few days so to make ourselves comfortable. Thank goodness for my emergency pre-packed hospital bag… this time I had something other than jeans to sleep in!

handsSeeing how quickly Eleanor went downhill from appearing absolutely fine was a huge wake up call. Chemotherapy really does horrible things to your body and makes you completely unable to fight the tiniest bugs that any normal functioning body would just remove without you knowing anything about it. Chemo is designed to attack rapidly growing cells but it doesn’t know the difference between cancer cells and the normal cells that keep our bodies working day to day, especially white blood cells including neutropils, our infection fighters! Even normal bacteria which live happily in our mouths and digestive tract can cause illness in a person with a low neutrophil count. Keeping Eleanor away from every single infection out there is impossible but we do our best to make sure we give her a fighting chance by following her around like OCD parents with anti-bac wipes and alcohol gel, whilst constantly reminding her to keep her hands away from her mouth!

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The following day the antibiotics continued and Eleanor was also given a blood transfusion due to her HB (haemoglobin) levels being low (another vital cell that the chemotherapy attacks). After a few hours playing and listening to music in her room, Eleanor was plugged in to the machine which would be giving her blood via a drip infusion. Initially I sat and stared at that bag of blood feeling a little uneasy about the whole thing. Someone else’s blood from someone else’s body. I sat wondering what kind of person the donor might be until I remembered what a selfless act giving blood is. It made me smile that a person gave their time (and their blood) to help keep my daughter alive and healthy enough to carry on with her treatment. If only I could thank them personally… if you give blood and are blood type O+ it could have been you, so thank you!

The rest of the day went by in a blur although we were lucky enough to meet Bianca, the co-founder of an incredible charity called Momentum. Momentum are an amazing charity which supports the families of children with cancer or life limiting conditions, based local to us in Kingston.

Bianca gave Eleanor a talking Minion as an early birthday present which provided hours of fun for us all and helped the afternoon fly by.

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Eleanor’s routine MRI scan that was due that day at the Royal Marsden was cancelled. I went to sleep that night beside her, excited but sad that we would be waking up in hospital on Eleanor’s 4th birthday.

It turns out that waking up in hospital on your 4th birthday is not actually as bad as you might think… cards, presents, cake and a beautiful rendition of ‘Happy birthday’ from the nurses on the ward made the morning a happy and smiley one. We were also given the great news that we would be able to go home that day to enjoy the rest of Eleanor’s birthday (although laden with 7 days worth of oral antibiotics).

Happy 4th Birthday Eleanor!

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Time flies when you’re having… chemo…

The remainder of January, February and the start of March went by in a blur of appointments. We saw community nurses, health visitors, an endocrinologist, an audiologist, and ophthalmologist, a psychologist, a vision impairment specialist plus Eleanor’s oncologist and many many nurses in both the Royal Marsden and our local shared care hospital.

I went back to work after a few weeks off but due to Eleanor no longer being able to attend nursery I reduced my days to only 1 day a week. My employers are an incredible support and continue to be which I am extremely thankful for. My Dad also flew over from Australia and stayed with us for a few weeks! #bonus

 

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By the start of February Eleanor’s eyesight had rapidly deteriorated and we noticed that she was struggling to see almost everything around her. She was relying more on sound and touch than sight and on the 26th February, at an appointment with a consultant ophthalmologist, our little girl was certified severely sight impaired  (the new, more politically correct way of saying ‘blind’ because apparently we shouldn’t say that any more!) Following that appointment people I bumped into would say how sorry they were and would ask how we felt, like it was some out of the blue news, in actual fact to me it felt like a relief. We were not just being over protective parents who analyse the crap out of everything, we were right, our daughter really couldn’t see and now someone official had agreed with us, it was all confirmed and we now have an actual certificate to prove it!

Eleanor tooIMG_6088k everything in her stride, each Friday we packed up the car and set off for the chemo appointment at either the Royal Marsden or Kingston depending on which drug she needed that day. On the weeks where she would just be having the Vincristine push, we were able to use Kingston, our local hospital. It took a lot of trial and error, not forgetting large amounts of screaming, but we started getting into a bit of a routine and learned what would keep Eleanor as calm as possible when they accessed her port, as well as things to help us cope with the whole ordeal (removing her shoes is now number one on the list after a few shoe in the face related incidents!)

As the weeks went by, Eleanor was becoming more used to hospitals and the nurses who treat her. She learned the names of the drugs she takes AND how to take tablets which is pretty impressive for any 3 year old! It all started to become a bit normal, which, as horrendous as it sounds, was what I had been hoping for from day one.
The future surrounding Eleanor’s sight is unclear. It is impossible to know that ‘if’ the tumour shrinks with chemotherapy, that she will regain any of her vision. All we can do is hope… and hope, and hope some more.Screen Shot 2015-05-28 at 15.55.19

Tests, tears & chemotherapy…

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The day began with a huge wake up call. The night shift nurse came by to check Eleanor’s port was working and to take a blood test prior to her chemotherapy treatment which would begin later that day. The line that was inserted into Eleanor’s port, or her ‘wiggle’ as she affectionately refers to it, wasn’t playing ball, it appeared that it may have been dislodged in the night or moved when Eleanor had been tugging on it when she was coming around from the anesthetic. There was only one thing for it, the dressing needed to be removed, as well as the line and a new one inserted so they could be sure that the port was in working order.

It was 6:30am and Eleanor screamed for the entire 10 minutes it took for our very lovely nurse to take off the huge dressing and remove the needle that was inserted into the port.  Then as there was no time to apply any local anesthetic to the area, the new needle had to be inserted without anything to numb the pain. Cue another bout of screaming. When it was over I’m not sure who looked more traumatised!

 

Image: Port-a-cath needle and line

After a few hours, some breakfast and before Tim and my Mum arrived we were whisked off to the Nuclear medicine department so Eleanor could start the process of an EDTA test. This would test the function of her kidneys by injecting a small amount of radioactive material (called EDTA) into her blood. A blood test would then be performed at two, three and four hours later to test how her kidneys had processed the EDTA. This went as well as the first part of the morning, with Eleanor screaming and refusing to hold out her cannulated hand, it took three of us about 15 minutes to persuade her it wouldn’t hurt whilst using bribes ranging from a sticker to a whole book of stickers (plus the standard sweets and chocolates I am sure most parents resort to in times of need!) Thankfully, eventually she relented. Sat on my lap she cuddled me tight and the first part of the test was performed, we were then taken back down to the ward to wait for Tim to arrive and to play for a couple of hours before the first blood test needed to be taken.

Tim and my Mum arrived shortly after we got back so I took the opportunity to head off for a shower while they entertained Eleanor and she told them all about her morning.

When I closed the door of the shower room behind me, I had to take a deep breath to stop myself from bursting into tears. I had been running on adrenalin all morning and suddenly it all seemed to wear off and it became overwhelming again. I put the toilet seat down and sat there for a few minutes with my head in my hands, just telling myself to breathe and that it was all going to be OK. I held it together until I was in the shower and then a whole weeks worth of emotion flooded out all at once. I sat on the floor of the shower and cried like a baby. I cried because I couldn’t believe it was happening. I cried because seeing my little girl so frightened was by far the worst pain in the world. I cried because I thought, if I feel this weak and overwhelmed so early on how will I ever cope with the roller coaster that is sure to follow. I have never asked ‘why us’ at any point in our journey so far. I cannot justify asking that question as to me that means that I would wish for it to be someone else, instead of us. I can honestly say that I would not wish this on my worst enemy.

The afternoon came and went quickly with visits from various people. We met a dietician. We had a nice chat with a Clic Sergeant social worker who talked to us about the support they can offer us along with a tonne of other information. IMG_0013We were also given a book called ‘Mary has a brain tumour’ I’m sure it is a great resource for children to understand what is happening to them, but it’s not really my idea of a bedtime story. I think I will stick to the Mr Men books!

A play specialist came around and talked to us about Beads of Courage  and Chemo Duck (I will talk more about these incredibly rewarding programmes in future posts, they really are simple yet extraordinary concepts!) Then before we knew it the nurse popped by to tell us that the chemotherapy was ready and that we could start.

On Eleanor’s treatment protocol, she is given two different chemotherapy drugs; Vincristine and Carboplatin. In Eleanor’s case, Vincristine is given in syringe form (a push) it is a quick process where the syringe is just attached to her ‘wiggle’ and pushed through over a few minutes. The Carboplatin is an infusion so she is attached to a machine which drip feeds the treatment in to her over an hour. Toilet trips are fun as it means wheeling the machine and directing Eleanor without getting tangled up in the wires!

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Once the chemotherapy treatment was complete we were told we could go home that night as long as Eleanor seemed well and that she showed no signs of a reaction to the drugs. After a little while we were given our discharge papers along with a plethora of anti-sickness drugs and antibiotics and sent home to return a week later for chemo number two.