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 while Molly remained perfectly healthy.  

Lilly's story

Before beginning her 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.

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 case 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).

A spokesperson for Addenbrooke’s Hospital has said: “The pattern of disease which has occurred in Lilly’s case is incredibly rare and is not something which experts in the UK or our international colleagues have seen in any other patient.” As a result of this, Lilly’s case has 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 in the US would improve her chances of survival – at an initial estimated cost from the hospital of £500,000. Costs actually reached £850,000. With the NHS unable to fund such treatment, the MacGlashan family, alongside their local community and Solving Kids' Cancer (then the NCCA UK), fundraised for the money to cover the costs of Lilly’s treatment at the Memorial Sloan-Kettering Cancer Center in New York.

On arrival in America, 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 as a result of the treatments she received.

Treatment

Lilly’s treatment started in March 2011. She 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.

Remission

The great news is that Lilly was soon in complete remission however she requires very careful monitoring. 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’s parents, Dawn and John, say: “Lilly’s retinas are really healthy. The 8h9 therapy to the brain and spine has had fantastic results for Lilly. She truly is a very brave and lucky little girl. Now she can go to school and continue to be a normal little girl who absolutely loves life. We cannot begin to tell you how happy, proud and truly blessed we are to have this little lady in our lives!!!”