Chloe is receiving treatment as part of the Vaccine clinical trial at Memorial Sloan Kettering Cancer Center, New York. The trial hopes to prevent neuroblastoma returning by causing Chloe’s immune system to attack any neuroblastoma cells that may come back.
Chloe and her family first travelled to New York in June 2016 for Chloe to receive her first vaccine. Early January 2017, Chloe completed the 6th out of 7 vaccines required. Chloe’s most recent MRI and MIBG scans early September 2016 were completely clear of neuroblastoma!
“We feel extremely fortunate to be in this position… Without all your kindness and donations to Chloe’s Campaign we would not be so fortunate to access this preventative treatment path for Chloe. We have no guarantees but you have helped us to know that we as parents have done all we can to keep Chloe in remission”- Richard and Karen, Chloe’s parents.
Chloe’s family and friends are continuing to fundraise to make sure that all options are open to Chloe throughout her journey. Any fundraising and donations are hugely appreciated and are reserved to support Chloe and her family.
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 cow’s milk and leave her on formula milk. Chloe seemed fine.
8 months later, Chloe’s parents noticed that their daughter’s appetite had reduced and she had become very lethargic, sweaty and pale, with her tummy becoming 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 the 25th October, an ultrasound was performed. Karen said that “within an hour our world was turned upside down. We were given the devastating news that our precious daughter Chloe 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.
Just 3 days later the family were transferred to Great Ormond Street Children’s Hospital for further tests. Karen explains: “We 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”.
Like more than half of children diagnosed with neuroblastoma, the cancer was already at an advanced stage by the time it was discovered. “It felt as if we were going to lose her at any minute,” they said.
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 has spent nearly 7 months in hospital – enduring countless tests with chemotherapy surgery, stem cell harvesting, high dose chemotherapy, radiotherapy surgery and immunotherapy.
“Chloe brings light and laughter even during the most difficult days” says Karen.
Karen and Richard had identified an American drug trial which aimed to prevent neuroblastoma coming back after immunotherapy. In a whirlwind 6 week campaign, Chloe’s Appeal raised more than the £100,000 required to pay for this experimental treatment (and associated costs), which was scheduled to begin in early 2015.
Cruelly, Chloe’s final tests before travelling to the US showed that the cancer had returned, which meant that Chloe could not go to Michigan for treatment for the foreseeable future.
To get back in remission Chloe underwent 14 more cycles of chemotherapy and 14 cycles of radiotherapy to her sternum but 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.
Chloe’s parents said “A fear of relapse will always be there as this journey has shown us never to take anything for granted and enjoy and make the most of every day”.
Chloe’s fundraising campaign
High-risk neuroblastoma has a high rate of relapse, and the survival rate for relapsed neuroblastoma is very low. Relapsed neuroblastoma is particularly challenging to treat and there are limited options to treat it; all of which exist in the form of clinical trials in the UK and oversees. Many families, just like Chloe’s, will choose for their child to access a clinical trial, in the hope of preventing a relapse, or, to get their child back in to remission.
Accessing a clinical trial oversees is not NHS funded and can cost hundreds of thousands of pounds. Supporting Chloe’s fundraising campaign will help to ensure that Chloe can access a clinical trial abroad as part of her cancer therapy, giving hope to all the family.
How you can help
There are many ways you can help Chloe; by making a personal donation; holding a fundraiser; getting sponsored to take on a challenge; or simply following and sharing Chloe’s story through her Facebook page.
You can make a donation via this page or by texting CHLE88 and your amount £1 – £10 to 70070.
If you’d like any help supporting Chloe’s campaign, please get in touch on 0207 284 0800 | firstname.lastname@example.org You can also download free Chloe resources (below) to support your fundraising, and access more fundraising resources, including fundraising ideas, templates and guidance.