Lilly

Lilly's story

In December of 2009, the MacGlashan family had twin girls, Lilly and Molly. But at just six weeks old, baby Lilly was diagnosed with stage 4s neuroblastoma (found in children younger than one). Lilly had a large tumour in her adrenal gland.   

Before beginning treatment, Lilly developed the dangerous bacterial infection e-coli from her Hickman line. This postponed her chemotherapy by three weeks – allowing the tumour to grow to nearly 8cm in circumference, particularly large for a baby of eight weeks. The tumour pushed on Lilly’s internal organs and her liver is still misshapen as a result. 

After overcoming the infection, Lilly had four rounds of low-dose chemotherapy at Addenbrooke’s Hospital, Cambridge. Lilly also had a successful operation to remove the primary tumour in her adrenal gland. At this time, follow up tests showed that Lilly was in remission. 

Relapse 

However, just two weeks after being discharged Lilly began vomiting and having fits. After being readmitted to hospital, doctors discovered that the cancer had spread to Lilly’s brain and spine. Lilly is the only known child where stage 4s neuroblastoma has relapsed in the brain. She is also the only child to have neuroblastoma inside her eye (as opposed to retinoblastoma, cancer of the retina). As a result of this, Lilly’s case changed the routine testing protocol for a child with neuroblastoma to include scans of the child’s head. 

Lilly’s relapse was treated at Addenbrooke’s Hospital, Cambridge, with high-dose chemotherapy, a stem cell transplant and a final round of intense chemotherapy, which had her in isolation for five weeks. However, oncologists believed that treatment at the Memorial Sloan Kettering Cancer Center in New York, not available through the NHS would improve her chances of survival. Lilly’s family and local community, supported by Solving Kids’ Cancer UK (then the NCCA UK) set out to raise £500,000.  

Treatment in America

When the family arrived in America in March 2011, doctors were amazed at how well Lilly was – while her vision seemed to be impaired, she had not sustained any brain damage or suffered mental difficulties because of the treatments she had received.

Lilly received radioimmunotherapy, a pioneering treatment that targeted the tiny specks of cancer in her brain, which scans did not pick up. She then received standard immunotherapy treatment for her whole body to target the cancer, which had since spread to her chest. End of treatment scans showed the great news that Lilly was in complete remission with just careful monitoring required.

Lilly and her family travelled regularly to America for long-term follow-up scans and appointments and she continued to make amazing progress. Previous calcified scarring in her left eye has now gone.

Lilly is now 13 years old and has been in remission for over 10 years!

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

_{Funds raised through a child's fundraising campaign for access to treatment are spent on their treatment and pastoral needs. Any remaining funds, and all funds raised after five years post the end of the child's treatment, are used to support other children and families through Solving Kids' Cancer UK's activities.}