“I am only one,
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything,
I will not refuse to do the something that I can do.”
This is Hayley who, with the blessing of her parents, is the face of Guitars 4 Good representing the children for whom we are raising awareness.
Her parents weren’t satisfied with any of the diagnoses given and continuously asked for a referral to the hospital. When they eventually did get a referral, the hospital looked at the details of Hayley’s case and decided it wasn’t urgent. The family were told they had to wait 13 weeks for an appointment.
Not wanting to wait, the family paid for Hayley to be seen privately. On the same day as the consultation, Hayley was referred for blood tests. “The blood tests took place on the Friday and on the Monday we were called back in as Hayley’s blood test was abnormal” says Zoe.
When the family arrived at the clinic, Hayley was immediately taken for an ultrasound. Zoe and Brian recall that they knew it was bad news from the expression on the ultrasound technician’s face. Only one hour after the ultrasound had been completed, they were given the devastating news that Hayley had a tumour in her abdomen which they believed to be neuroblastoma.
“We were devastated and felt tremendous guilt. If it’s so rare, how were we unlucky enough to have both children have it? Was there something wrong with us? Was it our fault?”. (Zoe and Brian)
As the family prepared to go to Addenbrookes Hospital where Hayley would have more tests and a biopsy on the tumour, they noticed a large lump on Hayley’s neck which seemed to have developed overnight. “We now knew without needing to be told that the disease had spread and that it was stage 4. There was no doubt anymore,” says Zoe. To confirm the diagnosis, doctors needed to do a biopsy of the tumour but because it was so far back; they thought it was actually safer to do a biopsy of the tumour in her neck. The results of the diagnostic tests revealed what the family already knew, that Hayley had stage 4 high risk neuroblastoma.
Neuroblastoma is a particularly aggressive form of childhood cancer and the most common cancer outside the brain in children under 5 years old. In most cases it is only diagnosed when it has already progressed to a late ‘high risk’ stage, like with Hayley.
Hayley had a 3cm tumour in her neck; a tumour above her right kidney measuring 4.3cm x 2.2cm and a tumour extending up through her chest measuring 7.1cm x 9.5cm x 13.5cm. Her L2 vertebrae had started disintegrating because of the tumour and her spine was arching outwards where the tumour was. The disease had also spread to her bones and bone marrow.
Brian and Zoe were shocked by the extent of Hayley’s disease. “How had no-one picked this up until now?” Zoe asks.
Hayley’s frontline treatment included 8 cycles of chemotherapy and possible immunotherapy. After the 8th cycle, Hayley’s blood counts took 9 weeks to recover instead of the expected 3 weeks. This was the first time her parents were aware of any blood count recovery issues. Scans and tests at that point also revealed that Hayley still had tumours in her abdomen and sadly extensive disease in her bone marrow and bones.
The medical team decided to change Hayley’s frontline treatment to a different chemotherapy combination called TVD to try and clear the disease from her bone marrow. Brian and Zoe were informed that Hayley was likely to need 4-6 cycles of TVD [chemotherapy] as her disease was so extensive in her bone marrow and bones. For Hayley’s parents, this was difficult news to hear as it meant that Hayley would not be eligible to receive immunotherapy. Immunotherapy (also known as antibody treatment) is now given to children as part of their standardised frontline treatment in the UK to help prevent neuroblastoma returning. To be eligible for immunotherapy as part of the standardised treatment, only 2 cycles of TVD are permitted. “We’d heard promising things about immunotherapy and so we were disappointed that Hayley was not going to have this,” say Zoe and Brian.
Hayley began her TVD chemotherapy and after the first round, complications with her blood counts continued. “It took 6 weeks for Hayley’s blood counts to recover so for the second round, she only received 66% of the dose to allow her blood counts to recover quicker,” says Zoe.
After the second cycle of TVD, tests confirmed that Hayley’s bone marrow was clear of disease. However, there was some residual disease left on one side and the medical team decided that another cycle of TVD was necessary to try and clear it. Having now had that third cycle, Hayley’s bone marrow needs time to recover. Meanwhile, surgeons have reviewed Hayley and decided to plan for 2 surgeries to take place. The first surgery is planned to remove the abdominal tumour and the second surgery will be to remove the tumour in her chest.
Brian and Zoe are waiting for dates for both surgeries to take place but are hopeful these should be happening very soon. Once Hayley has recovered from both surgeries the next step is for her to receive high dose chemotherapy. This is specifically aimed at clearing any residual pockets of disease that may be left over despite the previous treatment and surgery.
Brian and Zoe also hope that Hayley can access immunotherapy in the future at another treatment centre in the UK so long as she meets the criteria as with all studies.
Brian and Zoe say “Hayley has handled her treatment, as well as all tests, scans, pokes and prods like an absolute star. Although Hayley is yet to be in remission, and needs further treatment, she is so incredibly brave and we are very proud of her.”
High risk neuroblastoma has a very real risk of relapse and survival rates for relapsed neuroblastoma are very low. It is particularly challenging to treat and there are limited options to treat it; all of which exist in the form of clinical trials, some in the UK and some abroad. Hayley’s family want to be prepared for the future. Many families just like Hayley’s will choose for their child to access these experimental therapies to stop the cancer from returning.
Your fundraising will mean that if Hayley’s family choose for her to access an experimental therapy abroad in the desperate hope of preventing her cancer from returning, she can access the treatment and is not prohibited by an overwhelming cost.
If Hayley does not need to access treatment abroad, the funds will be used to support other children affected by neuroblastoma.
“We need to do whatever it takes to get her well again and allow her the childhood she so desperately deserves. Thank you for all of your support” – Zoe and Brian.
Devastated to have to share the news that Hayley lost her battle on September 15th, 2018.