Katie Rose's campaign

Katie Rose is the youngest of three girls, and loves spending time with her sisters Olivia and Grace.

In March 2018, Katie Rose was diagnosed with high-risk neuroblastoma, a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis. She had developed a solid tumour in her abdomen.

Since being diagnosed in 2018, 12-year-old Katie Rose has undergone extensive treatment both in the UK, Spain and the US accessing treatment that’s not been available on the NHS. Her family are continuing to fundraise for any potentially life-saving treatment needed in the future which isn't available through the NHS and could cost hundreds of thousands of pounds. Follow Katie Rose's fundraising campaign on social media. 

Katie Rose’s story 

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.

Treatment so far

 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 and will soon have reassessment scans to determine next steps.

_{Solving Kids' Cancer UK's children's fundraising campaigns} 

_{Funds raised will go towards helping Katie Rose and her family. If Katie Rose no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Katie Rose, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.}