‘One in a million’ Oscar supports new fundraising campaign
Oscar’s supporting our new Christmas campaign
Two year old Oscar and his family are supporting a new Christmas campaign with Neuroblastoma UK, to raise vital funds for neuroblastoma research, after their Christmas wish came true in 2018.
Oscar, from Waterlooville in Hampshire, was just 18 months old when he was diagnosed with neuroblastoma, a rare childhood cancer. He was also diagnosed with dancing eye syndrome - a rare neurological condition affecting around one person in a million worldwide, which can sometimes be associated with neuroblastoma.
“The doctors said “We’re so sorry. Oscar has cancer.” and I immediately thought my son was going to die. ”
Keira, Oscar’s mum said, “Following Oscar’s cancer diagnosis in July 2018, major surgery and a year of hospital visits and check-ups, our hopes at Christmas last year were that his tumour would disappear and that Oscar wouldn’t need any further treatment. Our wishes came true in May 2019. The tumour was all gone and two months later, Oscar completed his final course of steroids, the treatment for his dancing eye syndrome.
“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. We went through so much last year and are looking forward to a peaceful family Christmas. And we can’t wait to celebrate Oscar’s third birthday in a few weeks time! We are supporting Neuroblastoma UK and their new campaign to give hope to other families like ours.”
The charity’s Christmas campaign aims to #GiveHope to families like Oscar’s, by raising money for leading research projects which aim to deliver new, more effective and kinder treatments for children with neuroblastoma.
Keira said, “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 our GP sent us to the local hospital for various checks including dermatological tests, urine tests and a bone marrow sample.
“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 - high VMA levels indicate that he may have a tumour. Oscar also needed an MRI scan but because he was so little, he had to have a general anaesthetic to keep him still.
“Oscar was also diagnosed with dancing eye syndrome, a rare neurological condition that is sometimes associated with neuroblastoma. In my heart I knew something was seriously wrong. The doctors said “We’re so sorry. Oscar has cancer.” and I immediately thought my son was going to die. He had a 5cm tumour which was wrapped around his aorta and kidney.
“Oscar was in surgery for six hours whilst the doctors performed a 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. We were so lucky that the doctors were able to save Oscar’s kidney and that 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.
“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.”
Katherine Mobey, Fundraising Manager at Neuroblastoma UK said, “Neuroblastoma is a cancer that almost exclusively affects children, with around 100 children diagnosed every year in the UK. Christmas is a time when families should be visiting Father Christmas and having fun, not visiting hospital for treatment and receiving medication.
“With our new fundraising campaign, we want to give hope to more families like Oscar’s. By funding more vital research, we can help scientists search for new and kinder treatments, give children with neuroblastoma a better quality of life after treatment, and move closer to finding a cure.”
To make a donation, visit www.neuroblastoma.org.uk/christmas.