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COMING SOON… 4 years later…

Back to School…

I can’t quite believe this little one is starting Year 3. She is 7, has two brain tumours, a severe visual impairment due to the location of one of them and is currently on weekly chemotherapy for a year, her second chemotherapy protocol since her brain tumour diagnosis in 2015. She has been fighting cancer for more than half of her life, but she doesn’t let any of that hold…

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Tests, timings and organisation….

    Now that we have been thrown back into the world of chemotherapy it means that our lives need to become slightly more regimented than we have been used to over the last few years. As this chemotherapy regime is very different to the last we need to make sure that all the cogs in the wheel, so to speak, are working together and that everything runs smoothly. While…

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Surgery…

We were lucky enough for Eleanor to not only have her port-a-cath surgery at the Royal Marsden but also by the same surgeon who fitted her first port-a-cath. Medics, like everyone in the world come in many flavours and finding a good surgeon who is both great at his job AND personable can be tough. When you are leaving your small child in the hands of a surgeon you WANT…

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Hello chemo our old friend…

  A year and nine months chemo free, we should be grateful… Unfortunately Eleanor’s last scan has shown her new, smaller lesion is not going to stop growing without a little help… help in the way of another chemotherapy protocol. Second line treatment (in the UK) for this type of brain tumour is a 52 week course of a chemotherapy drug called Vinblastine. This will be given every week for…

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We believe in Magic…

  Today we said our final goodbyes to the beautiful, selfless and kind hearted Meg Bhari. A young girl who brought joy and happiness into the lives of hundreds of poorly children despite fighting her own brain tumour battle. She set up the incredible charity ‘Believe in Magic’ when she was just 16 and organised out of this world trips, gifts and the amazing Cinderella ball which we attended in…

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Support, empathy and awareness…

  Right at the very beginning, very soon after Eleanor was diagnosed Tim and I decided to set up a social media profile to document her journey. Initially it was a way to update the countless friends and family who wanted to know how she was in one hit, but swiftly became an excellent way to raise awareness of childhood brain tumours. Social media is so incredibly powerful and can reach places…

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One Step Forward…

  Well, she did it. Her first ever MRI without anaesthetic! We are proud beyond words… 45 minutes lying completely still enclosed in a noisy machine with her head wedged tight. I was allowed to sit in there with her and can confirm that even with earplugs that machine is NOISY! Children are given headphones and the option to listen to music or watch films to keep them calm during…

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Prepare…

The week following the scan is when the scanxiety really kicks in. Over the past two and a half years we have usually not been able to wait for a whole week to see Eleanor’s oncologist for results so we ask a nurse to call us with the basic results from the radiologists report. Since our journey began each scan has given us a stable result but since treatment stopped…

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