In October 2013 at the age of 2 years 8 months old Chloe was diagnosed with a rare childhood cancer called Neuroblastoma. It’s a cancer of the nervous system, initial symptoms were, lethargic, no appetite, pains in the stomach and legs. After visits to the GP and several A&E admissions a CT scan showed a large tumour present in the abdomen. Chloe was transferred to Great Ormond Street Hospital for further tests and a full diagnosis.

Unfortunately Chloe was diagnosed with Stage 4 high risk Metastatic Neuroblastoma which means the cancer has spread to her bone marrow and was prevalent throughout her skeleton, particularly in her legs, spine, skull and chest.
Neuroblastoma is a rare form of childhood cancer, only 100 children a year are diagnosed in the UK and of those nearly half will have the life threatening Stage 4 high risk. Although there have been massive strides taken in curing Childhood cancers over the past 30 years, Neuroblastoma is second only to domestic incidents in the cause of childhood fatalities in the UK.

Chloe's treatment programme started on the 8th of Nov 2013, she started the Siopen high risk protocol. This involved chemotherapies, vincristine, cyclophosphamide, Etoposide, cisplatin and carboplatin. She was given Chemotherapy every 10 days for 70 days with the aim to kill the Cancer found within her bones and shrink the primary tumour into and operable state. The induction Chemotherapy was a success and Chloe had her primary tumour removed in her abdomen via a 9 hour operation on the 11th of February 2014. Chloe went on to have High dose Chemotherapies Bulsufan and Melphan with Stem Cell transplant. She then had 3 weeks of radiotherapy at UCH having a general anaesthetic everyday. We had great news in July at disease reassessment that she was NED (no evidence found of the disease). 6 months of immunotherapy CH14:18 followed. Chloe had disease reassessment in Jan 2015 and we hoped to get her on a trial in Michigan called DFMO to help prevent her relapsing.

Disease reassessment unfortunately brought news we feared the cancer had returned. Chloe could no longer go to Michigan for treatment. Neuroblastoma had returned to her sternum a single spot on an MIBG scan. She started chemotherapies cyclophosphamide and Topetecan Monday 26th January 2015. She received 13 cycles of this combination then 14 sessions of radiotherapy to the spot on her sternum. Scans results showed no change.

Chloe was filmed by True Vision in her first year of treatment for a documentary called ‘Raining in my heart’, it aired on ITV 15th April 2015. This can be viewed on the following link.

Chloe had a biopsy on 29th March 2016 to the sternum they resected what they could see of disease. The biopsy showed Neuroblastic tumour, extensive Ganglioneuroblastomatous differentiation with no undifferentiated Neuroblastoma. Meaning all cells removed were mature and not aggressive. This was such amazing news to hear. An MIBG scan was repeated and results showed Chloe to have no uptake of disease. Chloe was classed as in 2nd full remission.

As there is no preventative treatment available in the UK, we made the decision that we wanted Chloe to take part on the Bivalent Vaccine Trial with B glucan at MSKCC in New York. It's made up of 2 antigens GD2 and GD3 and the aim is to cause Chloe's immune system to make antibodies against the antigens to attack any Neuroblastoma cells that may return. She would be having 7 vaccines over 12 months and scans every 3 months for 2 years. We travelled to NY at the end of May 2016 where we stayed for the next 4 weeks. Chloe had the 1st vaccine Monday 6th June, the 2nd vaccine 13th June and 3rd 20th June. All went smoothly and we returned home.

Chloe had her Hickman line removed on the 4th July 2016 at Great Ormond street, a huge milestone was reached.

We took Chloe back to New York for her 4th Vaccine due 25th July 2016. Unfortunately Chloe had an elevated ALT level so she couldn't have it on the date planned. Chloe was finally at the required level by the 11th August to have the Vaccine. Chloe had her 5th vaccine on the 17th October. Chloe had the 6th Vaccine on 9th January 2017. Chloe’s 7th and final Vaccine was on 30th May 2017. Her scans and bone marrow were all clear of disease throughout and 12 months after the vaccines.

From June 2018 Chloe then went onto have 3 monthly ultrasound and blood/urine tests every 3 months at Great Ormond Street.

February 13th 2020, chloe had a routine 3 monthly check at Great Ormond street hospital. Ultrasound, bloods and urine were all fine. February 15th Chloe started suffering with a headache on the left side of her head, her left eye was also hurting. She became pale, lethargic with no appetite. All worrying signs, her consultant arranged an MRI for 20th February. We found out the day before Chloe’s 9th birthday there was a tumour in the sinus behind her left eye.

Chloe was taken to surgery on 27th Feb to biopsy the tumour. She had a Hickman line fitted the day after. Bone marrow aspirate early March, MRI and MIBG. She was admitted to hospital due to severe pain she was now in, lots of relief medicines were given to make her more comfortable. Results from the biopsy and scans confirmed it was Neuroblastoma, a second relapse. It was a localised tumour behind her eye in the sinus and it was growing rapidly.

We consented to chloe starting the Beacon Trial 9th March 2020, it was randomised. She was given the arm of Dinutuximab (antibody) and chemotherapy Temozolomide and Topotecan. Chloe had 6 cycles of this treatment ending on 4th Aug 2020. The tumour had decreased in size. We consented to her having 14 sessions of radiotherapy at UCLH in Aug 2020. She then started another cycle of Chemotherepy Topotecan and Temozolomide on 21st September. She went onto have 4 more cycles of this. Scans after were showing a decrease in size of the tumour and it was now seen as operable. On the 20th January 2021 chloe was taken for an Embolisation procedure under a GA, a Catheter was inserted in her groin and they were aiming to cut of any blood supply to the tumour. Once they were in they found the tumour no longer had a blood supply. On the 25th January chloe was admitted for surgery to remove the tumour via her nose. The operation took over 4 hours and was complete success with complete resection. The Histology on the tumour was positive news mainly scar tissue and no active Neuroblastoma. We were hopeful chloe next scans would show no disease and third remission was close and she would for the second time access the vaccine trial in New York.

Chloe had an MRI 18th February and MIBG scan 19th February 2021. On the 22nd February Chloe’s 10th birthday, we heard from her consultant it wasn’t good news. Both scans were showing a tumour had grown in the same location behind her left eye in the sinus. Absolutely devastating news. Chloe was started on chemotherapies cyclophosphamide and Topotecan on February 25th in the hope to stop progression of the tumour. She completed 2 cycles, disease reassessment scans in April have shown the tumour has grown a further 15-20%. Chloe started a different chemotherapy Etoposide orally on 18th April and she will be starting radiotherapy on 4th May. We hope this will at minimum stabilise the disease to allow us to take her to Barcelona for HITS protocol - HU3f8 immunotherapy and a chemotherapy combination. This is currently only available in MSKCC New York and SJD Barcelona’. This will give Chloe the best chance of getting her into 3rd remission.

We are continuing to fundraise with ‘Solving Kids Cancer’ all money will remain in an account with them for Chloe for the next five years. Any money not needed for Chloe will go towards helping with research into Neuroblastoma and getting further trials open here in the UK. Please share, like Chloe's page and donate if you can. Anyone that would like to help with fundraising you can contact Laura at Solving kids cancer. [email protected]
Thank you for your support in helping our little girl. X

Joanne Thurston