Phoebe’s been fighting neuroblastoma since she was nine months old. She is funny, inspiring, cheeky, determined and very cute. She adores her big sister Amelie, who loves her to bits.

After initially being diagnosed with stage 4 neuroblastoma, which in children under 12 months old can regress of its own accord, Phoebe’s disease progressed to the much more serious high-risk neuroblastoma.

Now four, Phoebe continues to fight with a smile on her face despite all she has been through. She has endured extensive chemotherapy, surgery and high dose chemotherapy, including the ALK inhibitor drug which worked in stopping the progression of her disease. She is currently receiving immunotherapy and recently the family received the amazing news that Phoebe is in very good partial remission.

Her mum, Naomi, wrote:

"Such huge news that has felt so far out of our reach for so long. It’s taken 1,254 days (almost 3.5 years) to get to this point."

Phoebe’s family are fundraising so that if they choose a treatment option that is not available on the NHS, they have the funds secured to access it.

Phoebe’s parents, Naomi and Russell, say: “Phoebe is an amazing little girl. She has coped incredibly well with everything that has been thrown at her. This is a long road and she has not followed the textbook. Her disease has been resistant to treatment, and we have seen time and time again just how sneaky neuroblastoma is. We know that in the future Phoebe may need to access treatment that isn’t available on the NHS, and we need to be prepared should this be the case.”

Phoebe's story

In October 2015, following what seemed to be a normal cough and cold, Phoebe developed a lump on her chest, with more appearing over the coming weeks. After a couple of visits to the GP, he referred her to see a specialist. When the appointment came through for January, and more lumps had appeared (now seven in total), the GP sent Phoebe to A&E where her parents were told that these were most likely to be developmental cysts.

Phoebe was suffering increasingly with constipation and vomiting however being nine months old her parents didn’t think this meant anything serious was wrong. In the week leading up to Christmas, the vomiting became more frequent and Phoebe’s sleep became more and more disturbed; her parents thought she was either teething or constipated.  Over Christmas, her tummy gradually started to become distended, and by New Year several family members had commented on how large it looked. Phoebe’s mum turned to Google and found herself reading symptoms of neuroblastoma – a word and illness she had never heard before. She quickly shut it down telling herself off for being a paranoid parent but read the words “the prognosis is good if found in a child under 12 months”.

Phoebe’s scan, to confirm the diagnosis of developmental cysts, was scheduled for 4th January 2016. Both parents had to hold her down whilst they performed it, she was so distressed. Then came the moment when everything stood still – “I’ve found something”, the radiographer said. “I think I know what it is but she needs a chest x-ray… the good news is that the prognosis is good because she’s under 12 months.” Phoebe’s mum instantly knew what it was, it was the thing she had told herself it couldn’t be – neuroblastoma. Phoebe then had an x-ray, and her parents were told they needed to talk to a specialist who appeared shortly after. In the makeshift consulting room, surrounded by scanning equipment Dr Visser introduced himself, “I’m from the children’s cancer team”, and at that point, their whole world fell apart.

Phoebe’s parents, Naomi and Russell, say: “That night, we clung on to some vain hope that it wasn’t that bad, it couldn’t be, the prognosis was good because of her age. Our little family which was so perfect was being turned upside down. What did the future hold? We were so scared. We took it in turns to try and be strong, determined that as long as one of us was holding it together, we could get through.”

A few days later Phoebe had improved but her parents were told that the tumour inside of her was so big and dangerously close to her kidney that they needed to start chemotherapy as soon as possible; they couldn’t wait for biopsy results to confirm the nature of her cancer. “Without the biopsy results, they couldn’t be sure but were still hoping that it would be classed as neuroblastoma 4s, which in children under 12 months can disappear of its own accord.”

Some days later, when the biopsy results came back and they were told that it was classed as 4s, Professor Hewitt showed them the scan pictures. Phoebe’s parents say: “He tried to prepare us but we were totally unprepared for what we saw. Phoebe’s abdomen was completely filled with the tumour. It stretched right across her body, pushing her lungs up and her kidneys and liver down. It was huge. It was remarkable that her little body was still functioning at all with that inside. It was in her liver and the lumps on her skin were also neuroblastoma.”

Phoebe completed six rounds of chemotherapy in early 2016 and responded very well. The tumour reduced to about half of its original size. At the beginning of June, they were told that the tumour was expected to shrink by itself as is common with neuroblastoma 4s, although this could take a couple of years and she would have scans every 3 months to monitor what was happening. Phoebe had begun to thrive, started to grow and put on weight. She had one skin lump left and her liver was clear. Phoebe’s mum, Naomi, says: “We felt extremely lucky, I often felt like we shouldn’t be on the oncology ward, how could a cancer that goes away by itself even be a cancer? I felt guilty when looking at the other children around us.”

However, just a week before the next scan, Phoebe’s mum thought the lump that was left on her skin had grown. She alerted Phoebe’s consultant, who promised to get the results quickly. At 9 am the morning after the scan, he rang to confirm that the lump on Phoebe’s skin had grown, along with the main tumour, and it had now spread to her bones – it was in her shoulder blade and head. Her parents say: “The bottom fell out of our world again. This was really serious.”

Phoebe takes a selfie

Beginning treatment for high-risk neuroblastoma

On 1st October 2016, Phoebe began treatment for Stage 4 high-risk neuroblastoma, commencing with intense chemotherapy – eight rounds, every ten days, regardless of how her blood counts were or how unwell she was feeling. Towards the end of November, after six rounds of chemotherapy, she ended up in hospital with hypertension, which then developed into renal failure and sepsis. After spending a week in intensive care it was confirmed that Phoebe could no longer have one of the chemotherapy drugs anymore so she moved off the standard treatment protocol and used a different combination.

She was to do two cycles of this new combination, which would hopefully get her back on track but in February 2017, the next set of scans showed that there was another new spot behind her eye and that the other areas had not responded. In March 2017, Phoebe started on the Beacon trial at Birmingham Children’s Hospital, again, a new combination of chemotherapy for six cycles initially. Her parents said: “We needed this to work.” Phoebe responded well initially and then became stable, and in a position to continue with other treatment to beat her neuroblastoma for good.

In October 2017 she underwent 12 hours of surgery which was successful in removing the main tumour. Following a lengthy recovery, she had high dose chemotherapy followed by stem cell transplant. After spending 106 days in Birmingham Children’s hospital and two spells in PICU due to complications and side effects of the high dose chemotherapy, Phoebe finally came home.

Back to the drawing board

But only a few weeks later, in March 2018, scans showed that once again the cancer had grown and spread. It had survived the high dose chemo that was meant to obliterate it completely. Plans for radiotherapy were cancelled and it was back to the drawing board.

"This time we knew that traditional treatment and chemotherapy would not work, her disease was too resistant. We needed to think outside the box. Thankfully, there were options."

"The problem was some trials were yet to open and then MIBG therapy was ruled out. It did start becoming limited. Phoebe’s case was reviewed by the national neuroblastoma group, and Professor Pam Kearns (our consultant) came back with encouraging news – Phoebe’s tumour had the ALK mutation and the general consensus was that we should try to access an ALK inhibitor."

This drug was not licensed for children and was still being trialled in adults but was showing promise. This needed to be applied for direct to the pharmaceuticals under compassionate use grounds and thankfully this was successful.

Now four, Phoebe continues to fight with a smile on her face despite all she has been through. The ALK inhibitor drug worked in stopping the progression of her disease and she is currently receiving immunotherapy.

Recently the family received the amazing news that Phoebe is in very good partial remission.

Phoebe's fundraising campaign

Relapse rates for neuroblastoma are high, and the survival rate for relapsed neuroblastoma is less than 10%. This statistic worsens with every relapse. 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, some in the UK and some abroad.

Many families, just like Phoebe’s, will choose for their child to access experimental therapies in an attempt to help prevent the cancer from returning or to treat a relapse. By supporting Phoebe’s Journey, you’ll be helping Phoebe to access additional therapy alongside her cancer journey that is not available through the NHS should she need to.

"Phoebe shows little signs of being affected and it is hard for us to accept that there is something horribly wrong inside of her. Our hope and dream is that she will grow up finally free from this disease and with few side effects.” Phoebe’s parents, Naomi and Russell.

How you can help

There are many ways you can help Phoebe; by making a personal donation; holding a fundraiser; getting sponsored to take on a challenge; or simply following and sharing Phoebe’s story through her Facebook page.

To donate by text, send “PHOEBE” followed by any whole amount up to £20 to 70085. This will cost your donation plus your standard network charge. It won’t matter if you leave a space before the number, if you include a ‘£’ sign or whether you use upper or lower case.

If you’d like to help supporting Phoebe’s campaign, please get in touch with the fundraising team on 0207 284 0800 | [email protected].

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