Katie Rose was a fun-loving, quick-witted, brave 14-year-old girl, who loved making slime, playing Fortnite on her PlayStation and jumping on her trampoline. She was diagnosed with high-risk neuroblastoma in March 2018 and sadly passed away on the 9th January 2025.
In December 2017, Katie Rose began to feel unwell with a temperature and rash. Initially, her GP thought it was scarlet fever.
Due to her ongoing symptoms, the doctor requested an ultrasound of her left hip as well as her abdomen. Katie Rose then developed yellow bruising around her right eye.
The ultrasound on her abdomen revealed a 7cm solid mass and an MRI later confirmed a tumour in her abdomen. Katie Rose was diagnosed as having stage 4 (metastatic) high-risk neuroblastoma.
One week after her diagnosis, Katie Rose began her treatment plan. She completed eight induction rounds of chemotherapy and had to have a further two rounds of TVD chemotherapy as scans showed she had partial clearance.
Katie Rose had her stem cells harvested over three days from 25th September, then one week later she had surgery to remove the tumour from her abdomen. Four weeks later she had her high-dose chemotherapy/stem cell transplant, during which she experienced horrible mucositis – a very painful side effect.
When she recovered on 31st January, she went on to have 24 sessions of radiotherapy to her abdomen and was in the middle of immunotherapy when scans picked up a new spot of disease. Katie Rose was not showing any signs of the disease.
We will never forget the initial feelings of shock and disbelief that this was happening to our little girl who had already so much to deal with having been diagnosed with type 1 diabetes at five-years-old. It has been complete devastation for our whole family, our lives changed forever that day." Katie Rose's parents, Una and Kevin
Katie Rose went on to access the BEACON trial, which involved six months of antibody treatment and oral chemotherapy and completed this in January 2020.
On the advice of Memorial Sloan Kettering Cancer Center in New York and Katie Rose's treating team in Belfast, the next step was for the family to travel to Barcelona for two cycles of hu3F8 (immunotherapy treatment), to increase the chance of success with the vaccine trial in New York. Katie Rose and her family travelled to Barcelona in September 2020, however after doctors from New York and Barcelona reviewed her scans, they decided Katie Rose would be eligible for the trial in New York without needing hu3F8. The family returned home in October with the plan to travel to America.
Unfortunately, her MIBG scan continued to show one residual spot. Her consultants believed it to be mature (non active) disease that wouldn't require any further treatment but a biopsy of the area was suggested to be sure. The residual spot was confirmed to be 'active' although not particularly aggressive but would require treatment. Katie Rose had 14 radiotherapy sessions which she completed on Christmas eve.
The family returned to Barcelona in February 2021 and started hu3F8 antibody treatment. In April 2021, Katie Rose had completed two cycles of treatment and her scans were all clear of disease. The family were given the news that they had hoped for, that she was now eligible to enrol on the bivalent vaccine clinical trial.
Katie Rose started the trial in May 2021, but sadly, after receiving her fifth vaccine (out of a total of seven) in October reassessment scans showed a new spot of disease, so she was no longer eligible to continue on the trial. Katie Rose returned to school and was keeping well during this time. Further scans in May 2022 showed her disease to be stable and that her disease had not spread, however there was a query over one area of disease so a spinal biopsy was planned. The results confirmed neuroblastoma and scans showed some changes with her disease. After much discussion the next stage of treatment for Katie Rose was chemoimmunotherapy treatment which she started in October 2022.
At the end of April 2023, Katie Rose completed her sixth cycle of chemoimmunotherapy treatment with scans showing a continued response to treatment and no progression. Further scans in October 2023 showed her disease to be stable. Katie Rose went on to receive oral chemotherapy given at home every month, which allowed her to attend school when she was well enough between cycles and maintain some kind of normality as it didn't require her to be hospitalised.
Katie Rose continued with oral chemotherapy treatment but devastatingly scans in October 2024 showed signs of disease progression and Katie Rose began to experience pain symptoms which resulted in Spinal Cord Compression. She was discharged from hospital to be cared for at home where she was most happiest, with my loving parents, sisters Grace and Olivia and her dog Marley.
Katie Rose passed away on the 9th of January 2025.
We regret to inform you that our beautiful daughter Katie Rose gained her angel wings yesterday, peacefully at home surrounded by her family." Katie Rose's parents, Una and Kevin
Funds raised in loving memory of Katie Rose will be used to support other children like Katie Rose and their families through Solving Kids' Cancer UK's activities. Any funds raised through a previous fundraising campaign for access to treatment which were not spent on the child's treatment and pastoral needs are used to support other children and families through Solving Kids' Cancer UK's activities.
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