Freddie was diagnosed with Stage 1 neuroblastoma when he was nine days old. During surgery, consultants found Freddie’s cancer had progressed to Stage 4s.
“From having our first child been born with cancer, the first year was different to most others but that was our norm. It was stressful, but the doctors nurses and other oncology mums and dads made the hard times a little easier.” Kerrie and Cameron share their story.
“I went for an ultrasound scan when I was 32 weeks pregnant as the midwife thought he measured on the small side. All my other scans were fine 16 weeks and 24 weeks.
From the scan they noticed an issue with his right kidney. I was referred to another person to perform a more in depth 3D scan. I was advised not to worry if I was scanned by an oncologist, as they were the only person available that day.
The scan showed a possible kidney dilation and a obstruction of the kidney. They just advised me and my partner Cameron to not leave the hospital without him being scanned when he was born.
I carried and had a natural birth at 38 week +2 days, on 20th October 2015.
The day Freddie was born, his dad Cameron took him down for the scan.
That evening, we were advised by a doctor that Freddie could have a form of childhood cancer or a haemorrhage that could disappear on its own. It was too early to tell.
Bloods and urine were taken and we had a test to check the flow of his urine. We left hospital three days later and had to go back for another scan when Freddie was nine days old.
When we were told it was more than likely cancer, I think we both felt a bit numb. It didn’t seem real and we were very upset.
Diagnosed at just nine days old
After the scan, we were taken straight to out-patients to meet a children’s oncologist. The scan still showed that it was more than likely a mass above the right kidney, and they believed it to be neuroblastoma. This could not be confirmed until the mass was tested.
More tests were performed - bloods, urine, MRI and MIBG scans. After these tests, we were sent to Birmingham Children's Hospital to meet with a consultant and surgeon.
Freddie was diagnosed with Stage 1 neuroblastoma. He needed key hole surgery and the tumour removed. Surgery was booked for 20th January 2016.
This is where our son threw a curve ball and the cancer was no longer Stage 1 .
Surgery showed cancer had progressed to stage four
During surgery, the surgeon had to perform full surgery as the mass was no longer 3cm by 3cm. It was the size of a cricket ball. He fully removed the tumour but then found the liver did not look normal so swabs were taken.
Freddie recovered from surgery and we were discharged back home five days after. He was given two weeks to recover from surgery, then we had to start repeating tests so urine, bloods, MRI scans, MIBG scans and CT scans of the chest and bone marrow were performed.
The tumour was also been tested and it was confirm it was neuroblastoma but thankfully, no MYCN gene was found. (One important biological marker is called MYCN; when increased amounts of this marker are present, more intensive treatment may be needed).
Freddie’s test came back and it was confirmed his cancer was in the liver and only the liver. The staging now was Stage 4s (this special stage defines a tumour diagnosed in a baby under the age of 12 months.)
Watch, wait and further treatment
As the cancer can regress sponstaneosly in children Freddie’s age, we did the ‘watch and wait’ approach, with close monitoring at Royal Stoke.
After a month, we were sent back to Birmingham for a clinic review. We were told the tumour was growing and that we were going start with chemotherapy at the end of March. Freddie was also going to have another MRI to confirm his clinical diagnosis.
One week later, Freddie had the central line fitted and a week after he started chemotherapy on 29th March 2016.
He had six cycles including the mixture of the following :-
October 2016 - Freddie finishes his treatment
Freddie finished treatment on 15th October 2016. He was re-scanned and we went to Birmingham for the results.
It was confirmed that Freddie had finished treatment, but we haven’t been told there is ‘no evidence of disease’. From the MRI, the doctors believe that Freddie has ‘dead disease’ and scarring (and still to this day).
His central line was removed and we rang the end of treatment bell at end of November.
Life after treatment
Freddie is still monitored closely. He has eight weekly reviews at Stoke and four month MRI at present. All being well after his August scan, he will have his scan every six months as he would be two years and 10 months in remission.
His kidneys are monitored still due to dilation at birth but at present they are fine - he has six months check ups.
From having our first child been born with cancer the first year was different to most others but that was our norm. It was stressful, but the doctors nurses and other oncology mums and dads made the hard times a little easier.”
If your child has been diagnosed with neuroblastoma, please visit our ‘Families’ section for more information.
We have also produced a Parent’s Booklet. The booklet is designed for parents and carers of a child who has been diagnosed with neuroblastoma. There is information about neuroblastoma, the treatments that are used and their possible side effects. It also discusses how a cancer diagnosis can affect you, your child and the rest of the family.