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Amy's Rollercoaster Journey With Neuroblastoma

13/11/2017

 
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Amy was diagnosed with cancer in 2014, when she was only seven years old. Initially, her parents thought she had a urine infection and took her to the hospital for a routine scan, but unfortunately, the scan turned into something much more serious when it revealed a growth on her adrenal gland, which is just above the kidneys. Amy had neuroblastoma, a rare type of cancer that affects around 100 children each year in the UK.

"You never think that this will happen to your child"

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The cause of neuroblastoma is unknown but it is less common in children over five years, like Amy. Treatment can vary greatly from patient to patient depending on the stage of the neuroblastoma and the age of the child.


Amy’s diagnosis was a huge shock to everyone, but thankfully, further tests and scans confirmed that the cancer hadn’t spread to anywhere else in her body. This meant that Amy wouldn’t need chemotherapy or any other unpleasant treatment, however, she did require an operation to remove the tumour. Amy underwent seven hours of surgery in November 2014 and the tumour was successfully removed.

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For the next two years, Amy underwent regular scans to check for any signs of relapse, but other than that, she was a normal, bright and bubbly little girl.

Sadly, this was to be short lived, as in November 2016 one of Amy’s scans showed an abnormality. Further tests revealed that the cancer was back, but this time it was in her pelvis, and surgery was not going to fix it. Her family were devastated. She had a Hickman line put in and began chemotherapy immediately.

"When Amy was first diagnosed we thought that we had been lucky in that she only had surgery and life went on, but when the scan showed it had returned, our lives fell apart"


​​Amy has two older brothers who adore her. Her oldest brother sat his GCSEs while Amy was going through her treatment, and her other brother had to spend a lot of time with friends and family every time Amy had hospital appointments.
 
Amy’s little body found treatment very hard to cope with and she became very ill. She also developed an infection, which resulted in sepsis and had to be rushed into surgery to remove her Hickman line early.

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The doctors had planned to give her a stem cell transplant but after eight rounds of chemotherapy, it was clear that her body would not be able to cope with it and the risk would be too high. Her family went to see a specialist to find out if Amy was able to trial a new treatment but sadly, she wasn’t eligible for that either, so instead, she had a new Hickman line put in   and started a new chemotherapy which was less toxic than the previous one.

Amy is now halfway through her current course of chemotherapy and she has been lucky to spend more time at home with her family this time around.

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"Amy still continues to fight and is doing a lot better on the chemotherapy than before!"

​Amy has been unable to attend school since December 2016 so her mum, Natalie, has had to give up work to look after her full-time. She has received support from social workers at the hospital who suggested that she contact us.

The hospital where Amy is treated is an hour away from her home, and she currently attends every day for two weeks, each month. The cost of their travel is having a huge impact on the family so, with your help, our care grants project will support Amy’s family by providing regular grants to cushion them financially.

Amy has lost a lot of weight as a result of her treatment and none of her clothes fit her so mum and dad are also hoping to buy her some nice, new, comfortable clothes.

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Update from Amy's mum - November 2017

​"Amy has had a scan over the last few weeks which was clear of any cancer, so she only has to do two more weeks of chemo (last one ending 1st December). She'll then have more scans and if all is okay she will move on to maintenance therapy after Christmas!

Amy is doing really well in herself but is finding it hard not being able to go to school at all to see her friends. She is feeling a little lonely after a long year of treatment. We are hoping that by the summer next year all this will be over and we can get back to some kind of normal if that is possible.

We thank you all for your financial support over the last few weeks it has made things a little easier and we are so very grateful!"

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