James & I have taken on the challenge to walk in the footsteps of dinosaurs and complete a 25K walk across the Jurassic coast in 8 hours on22nd May 2021.

We are hoping to raise as much money as we can for James' little sister Chloe, so that she has the funds to help her in her next steps to recovery from Neuroblastoma. Chloe's story is below so please have a read and any donations that you can make will be so greatly appreciated.

This is going to be a challenge as Lockdown has meant that we have not done much walking over the past year!!! Now is the time to dust of our walking boots and get those steps in!!!
Please support in anyway that you can and any donation that you can make will be amazing!

Please read Chloe's story below as why this is so important.

Thanks James & Sarah :-)

Following Chloe's second relapse in February 2020, Chloe's family are continuing to raise money with Solving Kids' Cancer so that funds are available should a decision be made to access further treatment unavailable through the NHS.

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, 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 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 three 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 spent 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 six-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.

Second 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."

Travelling to New York

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.

Chloe accessed treatment in New York as part of the Bivalent Vaccine clinical trial at Memorial Sloan Kettering Cancer Center, New York. The trial hopes to prevent neuroblastoma from 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 and finished treatment in summer 2017. Chloe remains cancer-free.

“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.

February 13th 2020 Chloe had her 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 lethargic, pale and off her food. All worrying signs, her consultant arranged an MRI for 20th February. We found out the 21st February the day before Chloe's 9th birthday there was a tumour behind her left eye.

Chloe was taken to surgery on 27th Feb to biopsy the tumour and surgery 28th Feb for a Hickman line to be fitted. Chloe had a bone marrow aspirate 4th March and was admitted into hospital due to the severe pain she was now in. She was given lots of pain relief medicines to make her more comfortable and another MRI took place 5th March and an MIBG scan 6th March. Results from the biopsy and scans it was neuroblastoma and it was growing rapidly. We consented that day to starting Chloe on the Beacon trial, it was randomised and she was given the arm of Dinutuximab (antibody) and chemotherapy TemozoLouise and Topotecan. She started this on the 9th March.

We are continuing to fundraise with Solving Kids' Cancer, all money will remain in an account for Chloe for the next five years. Hopefully that money will not be needed by Chloe and will go on to help with research into neuroblastoma and getting further trials open here in the UK.

Sarah Reynolds