Evan’s story
Evan was diagnosed with neuroblastoma when he was 16 months old and the tumour was the size of half a football. Evan is now three and half and finished his treatment in November 2019. “He’s such a happy boy today and you wouldn’t know anything was wrong. He started pre-school in September, loves vehicles and is so easy-going. We know many families who have lost a child to cancer that we feel so lucky to have Evan. He’s been incredible.” Evan’s mum Sarah shares their story.
Sarah and Evan are supporting our Christmas fundraising appeal to help give children with neuroblastoma a #BrighterFuture. The money raised will help scientists develop new, more effective and kinder treatment for children like Evan.
A swollen tummy and diarrhoea
“I would just go to bed and cry - my baby wasn’t happy and I didn’t know why. ”
Evan had a swollen tummy when he was about 12 months old.
“I knew something was wrong with Evan in 2018, when he was about 12 months old. His tummy was very swollen and he’d had diarrhoea for about a month.
“I went back to work when Evan was 13 months old and my in-laws would look after him; I would have to give them a whole bag of clothes as his bowels would empty throughout the day and his nappies always leaked. He’d had a chest infection and was on antibiotics, so the GP thought Evan’s diarrhoea was related to this and gastric problems due a milk allergy.
“But Evan also developmentally regressed. He stopped trying to walk, wasn’t as expressive as he used to be, he wasn’t smiling much or interested in anything around him. I thought then that he was possibly autistic and I would just go to bed and cry - my baby wasn’t happy and I didn’t know why.
Further investigations - and a diagnosis
“I was absolutely devastated that my son had cancer.”
A scan showed that he had a large mass in his tummy, a tumour.
“The doctors thought that Evan’s issues were all related to his tummy sensitives and I had to really push for more investigations. Two weeks later, Evan finally had a blood test. His alanine transaminase (ALT) levels were really high, meaning that his liver was possibly under stress, so the doctors wanted to run another test. We had to wait another two weeks.
“Evan had his second test mid-morning and at 6pm, the hospital called and asked us to bring him in first thing the next day. They wanted to scan his abdomen and arranged an ultrasound for midday.
“After the scan, we got back to the children’s ward and within minutes, the hospital team came to see us and told us that Evan had a large mass in his tummy. They had to explain that the ‘mass’ was a tumour - I just burst out crying. I was absolutely devastated that my son had cancer.
Induction and high dose chemotherapy
“We had prepared ourselves for spending Christmas in hospital but we weren’t prepared for the realities of high dose chemo.”
Evan responded really well to his induction chemotherapy.
“The following week, Evan had a biopsy and an MIBG scan showed that he had metastatic disease with a faint patch in his skull. From the images taken during an MRI of his brain and skull, the doctors told us that Evan may have learning difficulties as well as cancer, or that this was a side effect of the his chemotherapy - we wouldn’t really know until he got older.
“The chemotherapy helped straight away; he started weight bearing after his first session and was able to walk holding my hand. He seemed to feel much better and even started talking, it was incredible.
“Evan responded really well to his induction chemotherapy, and the tumour went from 8cm x 6cm x 7cm to 2cm x 3cm x 1cm. He didn’t qualify for surgery as the tumour was in the middle and back of his abdomen near his adrenal gland. It had also grown around major blood vessels.
“Evan started his high dose chemotherapy over Christmas 2018 and was in hospital for seven weeks. It was a really difficult time for us. Evan was too poorly to open any of his presents on Christmas Day and was in and out of consciousness. We’d bought chocolates and a gold ribbon for friends and family in advance, as our priority was getting Evan through his treatment. We had prepared ourselves for spending Christmas in hospital but we weren’t prepared for the realities of high dose chemo. Christmas in comparison just didn’t matter, it was all a blur.
The happiest moment
“ We all look to the future as much as we can, rather than dwelling on the past; ”
Evan needed 20 sessions of radiotherapy and had minimal side effects.
“The high dose chemo really pushed Evan’s body to the edge and he avoided ICU by the skin of his teeth. He was so ill that both my partner Craig and I were allowed to stay overnight with him in case he deteriorated. But the happiest moment was when he started eating crisps; he was still yellow, still had sores but he was eating. It was just incredible.
“He needed 20 sessions of radiotherapy which began at the start of April 2019 - he was an absolute trooper. These sessions were daily over four weeks, and each session Evan would require a general anaesthetic in order for him to remain still in the machine.
“The first week of sessions were horrendous as Evan reacted badly to the anaesthetic gas and would come round extremely distressed. However, the anesthetist was brilliant and made the necessary adjustments so that by the end of the week he was much more settled. He had minimal side effects and the hospital team were really lovely.
“Evan then had five rounds of immunotherapy. While the first few days were managed in hospital, we had to manage most of it at home. The first round was extremely tough, with Evan requiring four different medications just to manage side effects, such as nerve pain, fever and risk of allergic reaction to the immunotherapy drug. As a parent, trying to manage his discomfort and administering all the medicines at home made me feel really uncomfortable – I’m his mum, not a nurse.
“For two weeks every cycle he would be connected to a ‘bubble’ – a bottle with a balloon containing the immunotherapy drug. With each cycle he seemed to tolerate the side effects better and by the third round, he was so well that when he wasn’t connected to the ‘bubble’ he was attending nursery two days a week. There were still moments he seemed to ‘zone out’ and his skin became very dry and sore from one of the other drugs he was taking, but once again Evan continued to surprise us with his resilience.
Completing treatment - and looking forward to Christmas
“We are so incredibly grateful that this year he has the opportunity to experience the magic and excitement that every child deserves at Christmas.”
“This Christmas we have so much to look forward to.”
“Evan completed his treatment in November 2019. We’ve never been told that Evan is in remission or the magic words ‘no evidence of disease’. We believe this is because he couldn’t have surgery on the primary tumour site.
“His end of treatment scan was stable with no active growth in this area but only time will tell, which is why it is so important that he has regular monitoring scans every three months.
“Every scan has pulled up something new, but he’s doing brilliantly. We all look to the future as much as we can, rather than dwelling on the past; we have a new baby on the way and have recently moved house.
“This Christmas we have so much to look forward to. Evan’s first pre-school report was brilliant, he is described as bright, sociable and developmentally he is keeping up with his peers. As a typical three year old, his concept of Christmas is firmly cemented, with discussions of Father Christmas, his wish list and decorating the tree. We are so incredibly grateful that this year he has the opportunity to experience the magic and excitement that every child deserves at Christmas. “
Give a child the gift of a brighter future this Christmas
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