Posted on Friday 27 May 2022

Oscar’s story: “it was so good that it was so close to the hospital but far enough to feel you had come away”

At just five months old, Oscar was diagnosed with neuroblastoma on New Year’s Day in 2021 after his parents rang 111 when they noticed his legs were hurting and he didn’t seem himself. Oscar went on to receive treatment at Southampton General Hospital and was supported by a Young Lives vs Cancer social worker, Nicky.

His Dad, Russell, first thought to get him checked out when his left leg went limp.

“We noticed that Oscar had been teething quite badly and on that day seemed very happy. When we sat him up, lifted his legs, he would cry a lot we also noticed that his left leg was really limp. So I rang 111 and we went to urgent care at St. Mary’s Hospital and saw a GP and they did an X ray of his hip.

“The doctor noticed a bulge on his back and said we needed an MRI scan at Southampton – something is going on and we need to do an MRI under a general anaesthetic.”

Oscar was diagnosed with neuroblastoma at five months old

Oscar and his parents were sent via ambulance at 1am in the morning to Southampton hospital, via the Red Funnel ferry.

“We went to A&E in Southampton Hospital but they said only one of us could stay on the ward, about 5am. So, I went to the ward and Russell had to hang about outside, luckily my sister lived in Southampton and picked him up.

“We then didn’t have the MRI scan until 4pm that afternoon on the 2nd January. I had no sleep, no food, nothing, I had seen five different teams of doctors, all looked at him, wanted to know the story, all turned around and said ‘we won’t’ know anything until the MRI scan’.

“The scan took about 2 hours, it was awful. They brought him back and said nothing. I knew the nurse knew something but she couldn’t say. I could hear the doctor say Oscar’s name, but it turned out because of where the tumour was they were having a big meeting to decide what to do to relieve the pressure on his spine. They told us what it was – neuroblastoma when Russell was on Facetime.”

Because of covid restrictions, only one parent could be in the hospital but they allowed Russell to come in and he saw Oscar just before he went down for emergency surgery.

In the surgery they tried to remove as much of the tumour as possible. They then took some to do a biopsy on.

The next morning Oscar had movement in his legs and then a couple of days later he started chemotherapy treatment. Oscar and his parents stayed on the ward (Piam Brown) for two weeks.

“We had 4 lots of chemo every three weeks in Southampton three days at time and we stayed at Jean’s House.  The house was at a reduced capacity because of covid, so the living rooms were closed.”

In April, Oscar had another MRI and from there he needed two more rounds of chemo, six days at a time, and this was more intense.

“We stayed in the hospital because he was an inpatient. After that he had surgery to remove most of the tumour in June 2021. That was successful, left a tiny bit but they can’t risk removing those nerves.”

Since the surgery, Oscar has had three MRIs and each time it is shrinking slightly.

“He has been left with his left leg and foot –slightly in turned – he isn’t walking properly yet, just taking his first few steps now, seeing physio which is ongoing, and they are confident he will walk, it’s just nerve damage.”

Oscar and his family were supported by Young Lives vs Cancer from the moment he was diagnosed.

“We stayed at Jean’s House times, it was so good that it was so close by to the hospital but far enough to feel you had come away from the hospital. It also meant you didn’t have to do the journey of the one hour crossing, the driving either side – to have Jean’s House which is 10 minutes from the ferry and 10 minutes from the hospital.

They were also supported by Nicky, a Young Lives vs Cancer social worker.

“She was very helpful, she always checked in at the beginning most weeks, if we were in the ward, she would pop in and say hello, having that friendly face, phone in, she explained things that we possibly could get.”

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