Chloe

Chloe’s story  

Chloe had always been a bubbly healthy little girl; she was never ill. At 18 months, her parents, Karen and Richard, took her to the doctor after she complained that her tummy hurt. On referral to a dietician, the advice was to stop giving Chloe milk and leave her on formula milk. Chloe seemed fine. 

Eight months later, Chloe's parents noticed that their daughter's appetite had reduced, and she had become very lethargic, sweaty and pale, and her tummy very bloated. She was having difficulty walking and her parents became seriously concerned. 

Visits to the GP and local A&E resulted in Chloe undergoing a range of tests. On 25th October, an ultrasound was performed. Karen said that within an hour their world turned upside down. They were given the devastating news that their precious daughter had a tumour in her tummy believed to be a form of childhood cancer called neuroblastoma. 

Having never heard the word, Karen and Richard were in complete shock, but things moved at breakneck speed. 

Three days later the family were transferred to Great Ormond Street Hospital for further tests. They were told she had advanced stage 4 high-risk metastatic neuroblastoma, meaning the tumours had spread throughout her body. She had a large tumour in her abdomen and the cancer was in her bone marrow throughout her skeleton. They felt as if they were going to lose her at any minute.  

The family was determined not to lose hope and Chloe started treatment. Karen and Richard tried to keep Chloe unaware of their mounting fears.  

Chloe spent months in hospital enduring countless tests with chemotherapy, surgery, stem cell harvesting, high-dose chemotherapy, radiotherapy, surgery and immunotherapy. 

Karen and Richard identified an American clinical trial which aimed to prevent neuroblastoma coming back that Chloe could access after immunotherapy. In a whirlwind six-week fundraising campaign, Chloe's Appeal raised more than the £100,000 needed and access to the trial was scheduled for early 2015. 

Cruelly, Chloe's final tests before travelling to the US showed that the cancer had returned, which meant she could not access the trial for the foreseeable future. 

To try to get back in remission, Chloe underwent 14 more cycles of chemotherapy and 14 cycles of radiotherapy to her sternum, but still seemed no closer to remission.  

As the disease had not changed in the 14 months post relapse, Chloe underwent a surgical biopsy in March 2016. The results showed complete differentiated disease, it meant the neuroblastoma cells had matured and she required a further MIBG scan to confirm the progress. This MIBG scan came back clear, and Chloe and her family got the wonderful news that Chloe was in remission for the second time. 

In the hope of preventing another relapse, Chloe accessed the bivalent vaccine clinical trial at the Memorial Sloan Kettering Cancer Center in New York. She had her first vaccine in June 2016 and finished treatment in the summer of 2017. 

On 13th February 2020, Chloe had her routine 3 monthly check at Great Ormond Street Hospital. Her ultrasound, bloods and urine were all fine. 

On February 15th, Chloe started suffering with a headache on the left side of her head. Her left eye was also hurting. She became lethargic, pale and off her food. All worrying signs, her consultant arranged an MRI for 20th February. Chloe's parents found out on 21st February, the day before Chloe's 9th birthday, that there was a tumour behind her left eye. 

Chloe was taken into surgery on 27th February to biopsy the tumour. Chloe had a bone marrow aspirate on 4th March and was admitted into hospital due to the severe pain she was experiencing. She was given lots of pain relief to make her more comfortable and an MRI took place on 5th March and an MIBG scan on 6th March. Results from the biopsy and the scans confirmed neuroblastoma and it was growing rapidly. Chloe started on the BEACON trial on 9th March and in August 2020 started radiotherapy. Then, in January 2021, Chloe underwent a 4-and-a-half-hour surgery to remove her tumour via her nose, which was successful. 

After initial scan results pointed to a third remission with no active neuroblastoma cells detected, Chloe's parents were devastated to be told that another tumour had grown rapidly in the same spot behind Chloe's left eye. 

The family decided that the best course of action to try and get Chloe back into remission was to access treatment in Barcelona- 4 cycles of the HITS protocol. The family relocated to Spain in July 2021 and Chloe started treatment. Initial treatment stabilised Chloe's disease but disease reassessment scans in November 2021 showed the tumour had progressed. Chloe came off the HITS protocol and the family travelled back to the UK for Chloe to continue treatment at Great Ormond Street Hospital. 

Chloe passed away peacefully on 4th February 2022. 

_{Donations made in loving memory of children} 

_{Funds raised in loving memory of Chloe will be used to support other children like Chloe and their families through Solving Kids' Cancer UK's activities. Any funds raised through a previous fundraising campaign for access to treatment which were not spent on the child's treatment and pastoral needs are used to support other children and families through Solving Kids' Cancer UK's activities.}