After being diagnosed with rare cancer, three-year-old Ava’s best hope is an experimental vaccine
The family of a three-year-old girl who was diagnosed with an aggressive cancer have raised £290,000 for life-saving treatment.
Scott, 34, and Natalie Bolton, 35, first noticed something was wrong with their daughter Ava when they saw her limping, pale and lethargic in January. At first, the couple thought she had picked up a virus, but when bruising started to appear on her eyes, they took her to the GP.
Ava was referred to the University Hospital Crosshouse, Kilmarnock, Scotland and following tests her parents were told she had stage four high-risk Neuroblastoma in February - a very aggressive and rare childhood cancer with a poor survival rate. She has now completed chemotherapy and radiotherapy and starts immunotherapy in a week.
Her family are hoping to take Ava to Memorial Sloan Kettering (MSK) Cancer Centre, New York, for further treatment that will hopefully stop the neuroblastoma from returning.
Scott, a technician, from Mauchline, Ayrshire, Scotland, said: "We were in pure shock. You don't ever imagine that you will be told your child has cancer - there is a lot more out there than you think. Throughout the year, we have been fundraising to get Ava new vaccination treatment in the US.
"Neuroblastoma has a high relapse rate of 60 per cent and this treatment will stop it from returning. We have raised our total of £250,000 - but are continuing to fundraise as we don't know what other costs there will be."
‘Not her usual self’
Natalie, a nurse, and Scott noticed Ava was not her "usual self" over Christmas 2022 and she was still unwell in the new year. Scott added: "We took her to the GP who we had an emergency appointment with and they told us to go straight to our local hospital."
Once they arrived, doctors suspected Ava was suffering from Transient erythroblastopenia of childhood - a slowly developing anaemia that occurs in early childhood. Doctors also said that Ava's blood counts were low because of an earlier virus and it would resolve on her own - leaving Natalie and Scott feeling relieved.
Scott said: "We were not prepared for what came next. Ava had further checks and they sampled her bone marrow. Preliminary results came back that night which showed abnormal cells.
"She then had a second bone marrow test and a CT scan which confirmed that Ava had cancer."
Ava has had eight rounds of chemotherapy and radiotherapy and is due to start immunotherapy next week.
Scott added: "She has coped really well, she has taken it in her stride. It is not until you see them through something like this that you realise how resilient they are."
All throughout Ava's treatment, her parents have been fundraising to fly her to New York for a new vaccination that will stop her cancer from returning. The family have raised more than £290,000 on the GoFundMe page here and are continuing to fundraise as they don't know the full cost of her treatment.
Scott said: "Ava needs to finish her NHS treatment before we can fly over there. Once she has completed the immunotherapy we will find out if she is completely free of cancer - if not we will carry on with the treatment.
"I feel very mixed emotions about what we have been going through as a family but we are so grateful for all the support we have received."
Vaccines for neuroblastoma
Cancer vaccines are another form of immunotherapy, the Memorial Sloan Kettering Cancer Centre says. They train the immune system to identify and destroy neuroblastoma cells lurking in the body after chemotherapy.
MSK says it has the most experience in the world with cancer vaccines for children with neuroblastoma. More than 250 children have received a novel neuroblastoma vaccine invented at MSK Kids. This vaccine is currently being evaluated in clinical trials here and around the world. It is called a bivalent vaccine because it targets two proteins found on neuroblastoma cells: GD2L and GD3L.
It is the only pediatric tumour vaccine in existence. It helps train the body to do the work of naxitamab. MSK adds this treatment is designed to help people who have no evidence of disease remain clear of neuroblastoma without needing ongoing naxitamab therapy.
