Oscar's story
“...nothing has ever stopped him and in August we celebrated Oscar’s third birthday. There is hope. ”
My son Oscar was diagnosed with intermediate risk L2 neuroblastoma when he was five months old. He had emergency surgery as the tumour was compressing his spine and growing into his abdomen and chest.
Oscar needed several rounds of very strong chemo and more surgery to remove most of the tumour. He was left with nerve damage to his left leg and foot which is now being treated like club foot would be. But nothing has ever stopped him and in August we celebrated Oscar’s third birthday. There is hope.
Symptoms and diagnosis
“We weren’t 100% sure what was happening. When we were moved to the neurology ward, it hit me that something wasn’t right. ”
Looking back now, Oscar was a clingy baby and cried a lot, but I didn’t want to compare him to his siblings as children can be so different! Generally he was quite a happy child. When he was four months old, Oscar was teething really badly and was very unsettled over his first Christmas. He wanted to be held a lot and seemed in pain when we were changing his nappy or sat him up.
On New Year’s Day 2021, Oscar’s dad noticed that he had no movement in his legs. After calling 111, we were sent to urgent care to see a GP. We saw nine different doctors, they all thought he was injured as he was immobile. Then one doctor noticed a bulge on Oscar’s back - we hadn’t noticed it before. They sent us straight to Southampton Hospital for an MRI scan. We were in an ambulance at 1am. Thankfully Oscar’s dad Russell could come in the ambulance with us, but only one of us could be with Oscar on the ward because of Covid restrictions.
We weren’t 100% sure what was happening. When we were moved to the neurology ward, it hit me that something wasn’t right. Oscar had a full body MRI scan - it took four hours. Russell joined us on a video call when the doctors told us the result.
There was a large mass that was compressing Oscar’s spine and he needed emergency debulking surgery. One doctor mentioned neuroblastoma, but he wasn’t sure at that stage. We hadn’t heard of it before but knew it was some sort of cancerous tumour. The scans also showed that the mass was in Oscar’s abdomen and was going into his chest. It was an awkward location and couldn’t be removed. I thought this was it.
A biopsy confirmed neuroblastoma
“One doctor mentioned neuroblastoma, but he wasn’t sure at that stage. We hadn’t heard of it before but knew it was some sort of cancerous tumour I thought this was it.”
Oscar spent the rest of the night and next morning in intensive care, but mainly because it was emergency surgery done at night. Thankfully, Oscar soon started to get movement back in his legs. Two days later he started chemotherapy.
The medical team didn’t really tell us that the mass was neuroblastoma. They took a biopsy and did a urine test. This confirmed enough for them to be able to start the right type of chemo and then adjust the treatment if needed once the biopsy results came back. A day after the first round of chemo finished, the biopsy results came back and it was confirmed as a neuroblastoma. Oscar was diagnosed with intermediate risk L2 neuroblastoma.
Treatment
“Oscar received his treatment really quickly; we knew he was in the best place and where he should be. We felt very lucky in a way.”
As we live on the Isle of Wight and Southampton was our nearest hospital, Russell and I were with Oscar at the hospital for two weeks. Our parents looked after our eldest son Theo. Everyone pulled together really quickly. Oscar was our priority.
The doctor’s main priority was to do the surgery and take the pressure off his spine. We got swept up into the treatment process and everything happened so fast. I was almost too busy to be upset! Oscar received his treatment really quickly; we knew he was in the best place and where he should be. We felt very lucky in a way.
After the surgery, Oscar needed six rounds of chemo. It was every three weeks, for three days at a time. He then needed an extra two rounds which lasted six days, it was much more intense. There were so many different drugs and combinations and you learn so much about cancer very quickly!
Taking it all in his stride
“Today, you wouldn’t know that Oscar had been so poorly...he still runs and jumps around as any three year old would. He’s our little wild child. I look at him and think how lucky he’s been. Nothing phases him.”
But Oscar just took it in his stride. The anti-sickness medication thankfully worked and he was generally really well. He didn’t want any milk, but then we realised it was because he was starting to wean - the fact he couldn’t talk yet was also tricky! He was still a happy little boy, even when his neutrophils were low.
Today, you wouldn’t know that Oscar had been so poorly. He’s had no lasting effects from the chemo. He’s recently finished physio as he couldn’t sit after surgery and he’s doing really well now. There is a long scar on his back from the surgery and he also had some nerve damage in his left leg as a result of the tumour, it’s being treated as talipes.
But it doesn’t stop him, he still runs and jumps around as any three year old would. He’s our little wild child. I look at him and think how lucky he’s been. Nothing phases him.
What I’d say to anyone whose child is going through treatment
“Just stop for a minute and breathe. Look after yourself too.”
I found the hardest time was when treatment stopped. It was hard waiting for the scan results. I remember someone said to me to make time to breathe. And that’s what I’d say to anyone whose child is going through treatment now. Just stop for a minute and breathe. Look after yourself too.
Thank you to Joanna for sharing Oscar’s story with us.
To help more children like Oscar, join us this Childhood Cancer Awareness Month by wearing a Gold Ribbon. Visit our Gold Ribbon shop, share our stories and show your support for everyone affected by neuroblastoma.