Grace’s Journey

Grace-journey-round“Grace is progressing very well and living as near normal a life as possible, you would not know from looking at her that she had ever been sick. She recently started playing hockey in school and is a regular tennis player, drama is an area where Grace performs very well and at the end of last year recorded the highest marks for LAMDA in the school ( this included years 1- 6). Grace is very musical, plays the harp and sings in the choir.

Her school work is also at the required standard for her age. Grace has regular check-ups every 3 to 6 months but there is nothing of concern to-date. She takes a daily injection of a growth hormone as it was found that her levels were low. Other than that she does not need to take any medication.‘’
Grace’s parents Kevin and Millicent opted for her to receive surgery and antibody treatment at the Memorial Sloan-Kettering Memorial Cancer Center in New York. To begin the 3F8 antibody at the optimum stage it must be given as soon as possible after high dose chemotherapy and surgery. Grace started high dose chemotherapy the same week as her primary surgery. The antibody treatment was started in March 2008 at which time Grace had no evidence of disease. In addition to the antibody treatment Grace had high intensity radiation therapy throughout April 2008. While receiving the antibody treatment, Grace developed an asthma like illness, and then pneumonia, which was treated with a combination of antibiotics and inhalers.

Grace had 3F8 anti-body every three weeks with each cycle of treatment lasting a week. In August, after receiving her fifth cycle, Grace developed a reaction to the monoclonal antibody treatment which is called the HAMA response.

This reaction alters how effective the antibody is in destroying the neuroblastoma cells, so her antibody treatment was delayed. At this time, it was suspected that Grace was limping but as she had being in a car for most of the day it was not seen as a cause for immediate alarm. The limp was reported to her doctors in New York which prompted further testing of her brain and spine.

In September 2008, it was confirmed that Grace had relapsed with a tumour in her brain and required urgent surgery. Grace had neurosurgery ten days later, in which time the lesion in her brain had grown significantly. While the surgery was successful, it confirmed that Grace had relapsed with neuroblastoma. Grace endured intensive brain and spine radiation as well as high dose chemotherapy.

In November 2008, Grace’s brain scans showed that she was clear of the tumour. Further antibody treatment was carried-out, with 8H9 to the brain and spine. Tests showed that her body was still clear of any cancer. After completing this treatment, Grace began a course of oral chemotherapy. Grace started school at the age of two – due to the possible effects of brain radiation, doctors advised Kevin and Millicent that it was a good idea for her to begin learning as soon as possible. She had her port removed from her chest as no further treatment was planned.

Grace continues to develop normally. Since the relapse in late August 2008 she has remained cancer free. Grace is on the road to recovery and the chance of a normal life. She started school in Bath in September 2010. Grace will continue to have regular tests every three months to check she remains free from neuroblastoma. Grace has been completely clear of cancer since September 2008 and continues to do very well.