Callum-Lee

Callum-Lee’s story  

In November 2012, Callum-Lee became unwell. He had a high temperature and pains in his stomach and by Christmas, he was still not getting better, so his worried parents took him to the hospital. 

The doctor at hospital thought Callum-Lee’s stomach muscles were going into spasm and referred him for tests. But his condition worsened as they waited, and his parents took him back to their local GP who referred them to the Royal Albert Edward Hospital in Wigan to see a paediatric doctor. 

On 1st March 2013, Callum-Lee and his family visited the hospital where the doctor was concerned that Callum-Lee’s tummy was hard and swollen. Callum-Lee had blood tests which doctors believed showed he had an infection and they prescribed antibiotics. 

Callum-Lee was discharged after a week. By June, he was limping and unable to put any weight on his leg, had stopped eating and even collapsed at nursery. Doctors diagnosed rheumatoid arthritis on 14th June and referred Callum-Lee to another doctor at Alder Hey Children’s Hospital in Liverpool. 

On 24th June, after examining Callum-Lee for just fifteen minutes, the doctor diagnosed him with neuroblastoma. 

Callum-Lee went through chemotherapy and had surgery to remove the tumour, after which he had his stem cells harvested and transplanted back into his body to boost his immune system. 

Callum-Lee’s scans came back with no evidence of the disease in December 2014 and life began to get back to normal with Callum-Lee going to school, making friends and enjoying caravan holidays with his family. 

In January 2017, a lump appeared on the right side of Callum-Lee’s neck. After an ultrasound and biopsy, it was confirmed as neuroblastoma. 

Callum-Lee relapsed two more times and went through 12 months of a chemotherapy regime on the BEACON trial, followed by an oral chemotherapy drug.  

In August 2018, the family were told the cancer had returned in his neck, spine and near his pelvis. Treatment for this included surgery, after which Callum-Lee was enrolled onto the MiNivAn clinical trial - a combination therapy of MIBG radiation therapy and antibody treatment. Sadly, after the third cycle of antibody treatment Callum-Lee's disease returned in his spine. He underwent emergency surgery to remove 95% of the tumour. Callum-Lee later became eligible for a CAR T cell trial at GOSH but scans after the first cycle sadly showed progression of his disease and a new tumour.  

Callum-Lee passed away on 16th May 2020. 

_{Donations made in loving memory of children} 

_{Funds raised in loving memory of Callum-Lee will be used to support other children like Callum-Lee 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.}