Jessica's neuroblastoma story

Neuroblastoma diagnosis

After falling over at nursery and hitting her chin, Jessica’s pupils changed and we were told it was Horner’s Syndrome. Through that we discovered her tumour. Jessica was later diagnosed at three years old with a localised neuroblastoma. Jess relapsed for the first time in December 2013 when she was six years old; she complained of a pain in her neck and I found the lump. This has happened each time she has relapsed. She commenced frontline treatment in February 2014, chemotherapy, surgery, radiotherapy and retinoic acid. This treatment finished in December 2014. Jess relapsed for the second time in February 2015 followed by surgery, high dose of chemotherapy, radiotherapy and retinoic acid. Unfortunately Jess was denied immunotherapy as she didn’t meet the criteria.

Jess relapsed for the third time

Jess relapsed for the third time a month before the end of her treatment. Jess then commenced the BEACON trial in April 2016. Unfortunately this trial had no effect and Jess was started on chemotherapy again in September 2016 to stabilise her disease until another plan could be agreed. Jess again was denied immunotherapy as she didn’t meet the criteria. In January 2017 Jess had further surgery to remove the tumours; she began metronomic therapy but did not tolerate these medications and treatment was stopped halfway through her second cycle. Again, Jess was denied immunotherapy.

A billion T cells injected

We were exceptionally lucky as an anonymous donor came forward and funded the immunotherapy treatment for Jess and started this treatment in July 2017. Unfortunately Jess relapsed after one cycle and then she had immunotherapy with chemotherapy but in November 2017 her disease was back. In January 2018 Jess was the first neuroblastoma child to have a billion T cells injected. There appeared to be some positive reaction within two of the tumours but the other four tumours began to increase in size. In March 2018 Jess had cryoablation on the four active tumours. Cryoablation is a treatment used to kill cancer cells with extreme cold. Jess is still classed as a localised neuroblastoma patient but appears to be unique in her presentation of the disease. We are now waiting to see if the cryoablation has any effect on the treatment and our life as this disease continues.

Holiday, family and school

As Jess’ guardian we managed to get to Cyprus this year, although we have had to cancel three times previously. Very recently Jess was admitted to our local hospital and we had to cancel a sleepover she had been really looking forward to. She was absolutely desolate and she sobbed for quite a long time. Jess then refused to speak to anyone, including the nurses; it took her several days to get over this. Jess lives with her younger brother and sister, Taylor, 8, and Mia, 6. The older they are becoming, the more they are understanding. Mia especially finds the separation very hard whilst Jess is in hospital. We try to send Jess to school as often as we can, but Jess still has substantial absences. She can sometimes find going back to school very stressful; luckily she has an excellent school and a very good group of friends. Whilst not at school she keeps in contact with her friends via her phone. Jess loves designing and baking cakes, she also enjoys any arts and crafts. Neuroblastoma   Treatment