Toby's story
“Our son Toby is ten years old, loves school, football and keeping fit. But nine years ago, we experienced the worst night of our entire life when he was diagnosed with neuroblastoma.” Margaret, Toby’s mum shares their story.
Symptoms and diagnosis
“Toby was given an X-ray and we could see a lump the size of a grapefruit. Our whole world fell apart. I couldn’t understand how something so big could grow inside his tummy without us noticing. ”
“Toby hadn’t been unwell, apart from being sweaty at night and sick every now and then, but otherwise he was a fit and healthy baby. I put the vomiting down to him being one year old and having a full his tummy.
Then one Sunday afternoon, Toby’s dad Hovik was lying down with Toby, stroking his tummy to try and get him to sleep, when he felt a hard lump on Toby’s abdomen. It really worried him, and he insisted that we saw the doctor. The GP thought it was constipation, but to be sure, he sent us over the road to A&E.
Toby was given an X-ray and we could see a lump the size of a grapefruit. Our whole world fell apart. I couldn’t understand how something so big could grow inside his tummy without us noticing.
Toby was diagnosed with Stage 3 neuroblastoma
Toby was diagnosed with stage 3 neuroblastoma
The care team didn’t know what the lump was and needed to move us to a bigger hospital. Hovik left to collect all our stuff from home then Toby and I went to a hospital 10 miles away by ambulance. I can’t remember the journey or that night at the hospital.
All I remember is being alone with Toby, lying there thinking that I can’t lose my baby. It was the longest, darkest night I’ve ever experienced.
The next day, Toby had another scan and we were sent to Addenbrookes for a biopsy to see if it was cancer. When we arrived, I was really sad; there were other children who looked so poorly and I felt like a fraud. Then Toby had his general anaesthetic and I remember thinking how small the breathing mask was - I was scared and worried for my little boy, he was so young and vulnerable.
But the hospital staff were really reassuring and lovely. The hospital was actually quite a happy place, there were always smiles on faces and our Consultant was very positive.
Toby was diagnosed with stage three neuroblastoma. The Consultant told us about research which showed that if a diagnosis is made before the infant is 18 months old, the outcome is much more likely to be a positive one. Toby was 11 months old.
Treatment begins just after Toby’s first birthday
“It was a very lonely, difficult time and I felt quite angry and resentful. But I found some inner strength from somewhere. ”
A line was put in ready for chemotherapy to shrink the tumour, but Toby got an infection - it was his first birthday. He had his first round of chemotherapy a few days later before the line just popped out. Another surgery – another line – another round of chemotherapy.
His lump, having been originally measured to be around 10x10x10cm, was now a quarter of that size, but still considered too large for surgery. A third round of chemotherapy reduced it to around one tenth of its original size, about the size of a golf ball.
Toby in hospital with is big brother Jamie
During Toby’s treatment, we’d lay there reading stories for about an hour. Toby coped really well with the physical side of it all, he was never sick after chemotherapy and he didn’t lose any hair.
I was adamant that Toby wouldn’t have a feeding tube unless he started to lose weight. We wanted to walk around with Toby without people staring or asking questions - I wanted to feel normal. He was on double strength milk, didn’t lose weight and thankfully never needed a tube.
We also had periods of isolation because of Toby’s low immune system. He couldn’t totter along to the playroom like the other children and all his toys had to be sterilised. It was a very lonely, difficult time and I felt quite angry and resentful. But I found some inner strength from somewhere.
The surgery removed all of Toby’s tumour
“Toby has been very healthy ever since. He had such a blase reaction when we told him what he’d been through. Toby now just says “I had cancer when I was a baby, they took it out and I didn’t die.” ”
Toby was operated on by an amazing surgeon on 10th June 2011. When they told me they managed to remove all of the tumour, I just wanted to hug the surgeon! It was such a huge relief. Toby was in intensive care for just over 24 hours and was up and about really quickly, bum shuffling down the corridors - three days later he was walking for the first time ever!
We left the hospital five days later and Toby needed checks every month, then every two months and now it’s yearly. I always worried about every appointment and every temperature spike, it took a good few years before I was able to relax a little.
Toby hopes to be a professional footballer!
Toby has been very healthy ever since. He is doing very well at school and he is an excellent footballer, even hoping to be a professional footballer one day! He had such a blase reaction when we told him what he’d been through. Toby now just says “I had cancer when I was a baby, they took it out and I didn’t die.”
We were very lucky that Toby’s neuroblastoma was caught so early - another six months and I might be telling a very different story.
How you can help
We don’t receive any government funding and rely on your generous donations to continue our fight against neuroblastoma.
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