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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…

 

thank-you

xxx