Oscar's story
Oscar was 18 months old when he was diagnosed with neuroblastoma. His mum Keira shares their story.
Initial symptoms
Oscar was diagnosed with neuroblastoma when he was 18 months old.
“We first noticed something was wrong when Oscar started shaking, like something you’d see when people have Parkinson’s disease. One night, we put him to bed and his eyes started to jerk, it was really odd.
He got progressively worse as the week passed, and started to stumble, even though he’d been walking for six months already. He also developed a rash so my husband took Oscar to see the GP. The doctor thought it was shingles but sent us to the local hospital for further checks.
We saw the paediatric team who carried out lots of tests including dermatological tests (to see if the shaking was caused by an infection of the rash), urine tests and a bone marrow sample. We were in hospital with Oscar for four nights as he needed intravenous medication in case it was an infection.
I knew in my heart something was seriously wrong
The day after we went home, we were called to go back to hospital. The VMA levels (vanillylmandelic acid) in Oscar’s urine were abnormally high - they asked if Oscar liked eating lots of bananas as this can affect the levels too! But as a nurse, I knew it was more serious and that high VMA levels indicate that he may have a tumour.
Oscar was also diagnosed with OMS (opsoclonus-myoclonus syndrome) - also known as dancing eye syndome - a rare neurological condition associated with neuroblastoma. In my heart I knew something was seriously wrong.
““We’re so sorry. Oscar has cancer.” I heard the word cancer and I thought my son was going to die. ”
The following day Oscar went for an MRI scan under general anaesthetic. The consultant, senior house officer and the oncology nurse came to see us with the results.
“We’re so sorry. Oscar has cancer.” I heard the word cancer and I thought my son was going to die.
He had a 5cm tumour on his kidney, which was wrapped around his aorta and kidney and was pushing his kidney over.
We met with the paediatric oncologist who talked us through the various different stages of neuroblastoma. Given the presence of VMA levels in Oscar’s urine, the oncologist believed him to have low-risk neuroblastoma, but more tests were needed to know for sure. Two more weeks of testing ensued, with special scans using dyes, CT scans and a biopsy.
Major surgery to remove the tumour
Oscar was in surgery for six hours and the doctors removed 95% of his tumour.
Oscar was in surgery for six hours whilst the doctors performed the biopsy. The surgeon came to see us afterwards and simply said “I’ve got it.”.
He was able to remove 95% of the tumour, which included the primary source of the tumour. The remaining 5% was left on Oscar’s aorta and should simply shrivel away and die. Oscar was so lucky that the doctors were able to save his kidney and he didn’t need chemotherapy.
We were amazed by Oscar and his recovery. He was discharged 48 hours after major surgery, something his doctors had never done before - he was our super baby! It took around 6-8 weeks for Oscar to heal. He had a scan every three months and in October 2018, the tumour had reduced. He also needed a years course of steroids, with a high dose administered for three days every month.
Making Christmas special - and our hopes for the New Year
Oscar meeting Father Christmas during his treatment for neuroblastoma
That Christmas, Oscar’s health was still very up and down because of the steroids and we wanted to make Christmas very special for him. We knew then that he wouldn’t need chemotherapy so wanted to celebrate as much as we could.
Our hopes for the new year were that the last bit of tumour would disappear, he would finish his steroid treatment and not need any further treatment.
Our wishes came true in May 2019. The tumour was all gone and two months later, Oscar completed the course of steroids.
Oscar is tough and stronger for all he’s experienced
Oscar is like a different child now. He’s just so much happier. He’s tough, he’s strong willed and stronger for all he’s experienced.
As a family, we do what can to raise awareness, raise money and help other families like ours. We’ve organised big fundraising day, a cake sale and taken part in running events. I wouldn't wish the pain we went through on my worst enemy.”