ashlee easton new york vaccine neuroblastoma

New York, New York!

solving kids cancer ashlees neuroblastoma appeal

Please donate here

solving kids cancer ashlees neuroblastoma appeal

Ashlee’s almost reached her £239,000 target! Thankyou so much!

RAISED SO FAR 92.5%

Dreams do come true

We ‘dreamed a dream’ and it came true!

We arrived safely in New York on 14th March. We had a small window of opportunity to get Ashlee over before flights stopped from the UK. We quickly packed and jumped at the chance. It’s such a worrying time with coronavirus however we had to weigh this up with the worry of Ashlee relapsing as we may not have had this opportunity to access vaccine again for a while.

Huge thanks to Solving Kids Cancer and our oncology team in Glasgow for their efforts in getting us here, they worked so hard to make this happen for Ashlee and we can’t thank them enough. It has been a very stressful week for all of us.

Our heartfelt thanks to every single person who has contributed to our fundraising, we will be forever grateful to you for making this treatment possible for Ashlee.

Also, a massive £1,060.00 was raised on ebay for the auction of the wonderful Susan Boyle’s Britain’s Got Talent 2019 dress!

Susan very kindly donated her famous glitzy dress so that we could auction it on ebay.

Thankyou to all who bid to help raise this amazing amount of money for Ashlee’s appeal, and to all who shared the campaign and continue to support us through everything. It means so much.

Susan Boyle Ashlees Neuroblastoma Appeal
solving kids cancer ashlees neuroblastoma appeal
13-year-old Ashlee Easton is a shy but thoughtful young lady. She loves music (particularly singing), fashion, experimenting with make-up and animals, including her own dog Angel who has been a welcome distraction in times of upset or pain.
solving kids cancer ashlees neuroblastoma appeal
solving kids cancer ashlees neuroblastoma appeal
solving kids cancer ashlees neuroblastoma appeal

Ashlee’s Story

Ashlee was diagnosed with high-risk neuroblastoma at the age of six but relapsed for the second time in November 2018, devastating her family. They know that her future is uncertain as once a child relapses, their chances of long-term survival drop drastically to less than one in ten.

Ashlee finished more chemotherapy and received the positive news that her scans showed no active disease! She is now receiving immunotherapy, after which her family hope to access a vaccine in New York that aims to keep the cancer from returning.

They are fundraising for £239,000 so Ashlee can start the clinical trial in New York in February 2020.

In February 2013 Ashlee’s mum, Lisa, took her to the GP as she had complained on and off about abdominal pain and an ache down her legs for the past few months. Initially, it was thought her abdominal pain may be due to food intolerance but that evening, screaming in pain, Ashlee was taken to A&E.

She was kept in hospital for a week with suspected appendicitis before being moved to Yorkhill Hospital in Glasgow where she underwent various tests and scans.

“As much as my mother’s intuition told me she didn’t have food intolerance I certainly did not expect to receive a diagnosis of stage 4 high-risk neuroblastoma, an illness we didn’t even know existed. How was it possible my child had cancer?” says Lisa.

“From that point onwards we found an inner strength and held onto hope that we could get our daughter through what was to follow – it was awful. Hearing your child screaming, the look of terror on her face while being poked with needles, feeding tubes put up her nose and down her throat, trying to insert a catheter into her little body while awake which distressed her so much she hardly spoke for a week.”

“Her mum, the one she trusts and knows will protect her, was letting these awful things happen to her, telling her it was all ok when actually none of it was ok. We just wanted our little girl better again but how do you make a child understand that?”

Treatment

Ashlee’s treatment began and she endured a year of chemotherapy including Rapid Cojec, TVD and then the Beacon trial. In January 2014 surgeons managed to remove 100% of her abdominal tumour and she then went on to receive a stem cell transplant, followed by six months of immunotherapy.

“We felt immunotherapy was the hardest point of her treatment. Due to the combination of infection, the side-effects and an extremely low blood pressure, on her birthday in July, she ended up in intensive care. It was a very scary time,” says Lisa.

Free of disease

By December 2014 Ashlee had completed her treatment of radiotherapy and was finally free of disease!

“We craved normality again. Ashlee was well, thrilled to have her lovely hair growing back, enjoyed being back at school with her friends and loved to go out to play on her electric scooter. She had lots of energy and always wanted to be out and about,” says Lisa.

Relapsing, twice

“In July 2016 we were devastated when routine scans revealed our gorgeous girl had relapsed. How can life be so cruel after everything she came through?”

Ashlee had to start chemotherapy again, losing her lovely hair again, before receiving MIBG therapy at UCLH – the treatment working well on Ashlee’s relapse spot in her shoulder. She then had to have further chemotherapy to clear disease in her bone marrow and the family chose to do a maintenance treatment of Retinoic Acid for six cycles up until July 2018.

In November 2018 routine scans picked up another relapse, showing disease in Ashlee’s shoulder yet again and a few other little spots in her femur.

Thankfully, following even more chemotherapy, Ashlee’s scans showed no active disease. She is currently receiving immunotherapy.

“In July 2016 we were devastated when routine scans revealed our gorgeous girl had relapsed. How can life be so cruel after everything she came through?”

Ashlee had to start chemotherapy again, losing her lovely hair again, before receiving MIBG therapy at UCLH – the treatment working well on Ashlee’s relapse spot in her shoulder. She then had to have further chemotherapy to clear disease in her bone marrow and the family chose to do a maintenance treatment of Retinoic Acid for six cycles up until July 2018.

In November 2018 routine scans picked up another relapse, showing disease in Ashlee’s shoulder yet again and a few other little spots in her femur.

Thankfully, following even more chemotherapy, Ashlee’s scans showed no active disease. She is currently receiving immunotherapy.

Some facts about high-risk neuroblastoma

  • What is neuroblastoma?

    Neuroblastoma is a rare and aggressive childhood cancer that affects around 100 children each year in the UK. Most children are under the age of five.

    Solving Kids Cancer

    2019

  • Where in the body does neuroblastoma start?

    Neuroblastoma is a cancer of the sympathetic nervous system, with tumours often occurring in the adrenal glands or abdomen.

    Solving Kids Cancer

    2019

  • Does neuroblastoma spread?

    Half of all neuroblastoma cases are classified as ‘high-risk’, where the cancer has spread by the time it is diagnosed, and immediate treatment is required. Children diagnosed with high-risk neuroblastoma have about a 40-50% chance of long-term survival. It has one of the lowest survival rates of any childhood cancer and the causes are not known.

    Read more information on the stages of neuroblastoma.

    Solving Kids Cancer

    2019

  • What treatment is there for neuroblastoma?

    Due to the nature of neuroblastoma, treatment can be intensive and can include chemotherapy, surgery, radiotherapy, stem cell treatment and immunotherapy. Read more information on neuroblastoma treatment.

    40-50% of children diagnosed with high-risk neuroblastoma will not respond completely (this is known as refractory) during standard treatment, or the cancer will come back (this is known as relapse) after. If a child does relapse with neuroblastoma, their chances of long-term survival are less than 10%.

    Solving Kids Cancer

    2019

  • MYCN

    Another important factor is the presence of the MYCN oncogene, which is found in around 30% of patients and is strongly associated with a poor prognosis.

    Solving Kids Cancer

    2019

  • ALK – mutated ALK genes

    Anaplastic Lymphoma Kinase (ALK) is a gene that tells your body how to make proteins that help cells talk to each other. Having mutated ALK genes is often indicative of a lower prognosis but the third-generation ALK inhibitor Lorlatinib trial is available for those deemed eligible.

    Solving Kids Cancer

    2019

  • Neuroblastoma progress

    Despite progress in the treatment and understanding of neuroblastoma, survival rates – particularly when it comes to high-risk neuroblastoma – are still unacceptable.

    It’s essential that promising developments in research are translated into effective treatment interventions that not only save lives but also offer the maximum quality of life after cancer. Solving Kids’ Cancer is working to initiate and fund innovative neuroblastoma research.

    Solving Kids Cancer

    2019

Thankyou so much for your support. Every penny raised can make such a difference to Ashlee's dream of living a normal life.

solving kids cancer ashlees neuroblastoma appeal

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