Just before and during the Christmas period of 2018 Grace started to become more and more lethargic and was not her usual happy self. We took her to her GP on several occasions and she was prescribed antibiotics initially for an ear infection and then a chest infection. We also explained that her carers at nursery had informed us that they thought Grace’s tummy appeared quite big but the GP reassured us that she just seemed to be constipated.

On Friday 4th January 2019 Grace was still very lethargic, had no energy & did not want to play. On Saturday 5th January we contacted the Out of Hours GP and after an appointment Grace was admitted to the Countess of Chester Hospital that night. Following an examination and tests the Consultant ruled out infection and informed us that he had detected a mass in Grace's abdomen and was pretty certain it was cancer. We were transferred to Alder Hey Children's Hospital in Liverpool the following day where Grace was diagnosed with Stage 4 High Risk Neuroblastoma.

Grace had a large tumour originating from her kidney, into her abdomen and this was also detected in her bone marrow. What followed was an intensive period of tests, scans and procedures. Grace had a central line fitted in her chest under general anaesthetic & an NG tube passed into her stomach. Grace required admission to the High Dependency Unit for a couple of weeks to support her with her breathing due to restricted space left by the tumours growth.  At this time we were informed that children diagnosed with High Risk Neuroblastoma have a 5 year survival rate of 40% to 50%. This was a very difficult time for us but we were encouraged by the incredible care and support the staff at Alder Hey gave us and Grace,  in particular the staff on Ward 3B & HDU. 

Grace immediately commenced 8 rounds of chemotherapy followed by extensive surgery in April 2019, which included a procedure to remove an ovary to hopefully preserve her fertility for the future. She then had a stem cell harvest (of her own cells), high dose chemotherapy then her stem cells transplanted back, having to stay in isolation for just over 3 weeks. She then completed 14 sessions of radiotherapy. She is currently receiving Immunotherapy to help destroy any remaining cancer cells as well as to hopefully  prevent the cancer from returning. During her treatment programme she has also received multiple blood and platelet transfusions. We would love to thank all those blood donors out there who make such a difference.

Grace has achieved miracles during her time receiving treatment. She has remained a confident and happy child despite what she has endured, charming everyone she meets with her constantly happy and positive outlook. She has spent a lot of time at home between her treatments and she always looks forward to returning to Alder Hey where she is cared for so well by her extended family on the ward.

Many children are not as fortunate as Grace and do succumb to the disease during their treatment or encounter other physical health issues. For those who are found to have no evidence of disease at the end of their treatment the outlook is positive, although there always remains a real possibility of relapse. If this happens the options for treatment are very limited. More common childhood cancers such as leukaemia have deservedly received significant funding into research and as a result the survival rates have been transformed for the better. The outcomes for Neuroblastoma have lagged behind because it only accounts for 6% of childhood cancers and so attracts less funding. However, I'm sure you'll agree that children like Grace deserve the same investment as any other child. It is for this reason Neuroblastoma UK desperately need your support to fund future research to find better ways of treating Neuroblastoma and preventing relapse.

You can see from the photo that Grace is looking great and is such a joyous little girl. Her hair has grown back and so have her little cheeks! She is looking healthier and more grown up every day. She will have a reassessment following the completion of Immunotherapy so we are hoping for positive news by the Spring or Summer of this year.

Grace's Racers promise to do everything they can to complete the 100 mile course, despite one of us being 72! In return please, please donate what you can afford to Neuroblastoma UK so Grace and others like her have a better chance of growing up & living the life they deserve.

Thank you for taking the time to read this.

Suzanne and Ian, Grace's Mummy & Daddy (On behalf of Grace’s Racers)

xx