12-year-old Ashlee 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.
And Ashlee has had to deal with a lot of those times. She was diagnosed with high-risk neuroblastoma at the age of six and has just relapsed for the second time, 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 is now back on chemotherapy and her family are raising funds in case she needs to access further treatment not available on the NHS, to hopefully keep the cancer from returning again if she reaches remission, or try and clear the disease if her current chemotherapy doesn’t go to plan.
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?”
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.
“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. She is now back on chemotherapy with the hope of taking part in another trial in the new year.
Ashlee’s family are raising funds in case she needs to access further treatment not available on the NHS, to hopefully keep the cancer from returning again if she reaches remission, or try and clear the disease if her current chemotherapy doesn’t go to plan.
“As parents, all we can do is keep strong and not lose hope, we pray that Ashlee can beat this disease once and for all,” says Lisa.
How you can help
There are many ways you can help Ashlee: by making a personal donation; holding a fundraising event; getting sponsored to take on a challenge; or simply by following and sharing Ashlee’s story through her Facebook page.
Download our free Ashlee resources below, to support your fundraising, and CLICK HERE for even more resources, including fundraising ideas, templates and guidance.
To donate by text, send “ASHLEE” followed by any whole amount up to £20 to 70085. This will cost your donation plus your standard network charge. It won’t matter if you leave a space before the number, if you include a ‘£’ sign or whether you use upper or lower case.
If you’d like help supporting Ashlee’s campaign, please get in touch with the fundraising team on 0207 284 0800 and firstname.lastname@example.org.