Summer's Neuroblastoma Story

Starting nursery

I went back to work after my maternity leave and Summer started nursery. She’d never been to nursery before so I was a bit freaked out. After about two weeks, Summer picked up a bug as children do, and she’d be vomiting a little bit with a temperature, so the staff said to keep her off. Summer’s dad took her to the doctors and there was no concern, they said to just keep her off nursery and we’ll see how she goes as it’s just a stomach bug. She seemed okay but would be sick after having her bottle of milk. I thought it was weird that she was bringing up the whole bottle and I started to notice a pattern of when she was sick after eating. Generally, she was okay, and you’d normally expect someone to be lethargic when they are ill but she was the same.

Swollen stomach

Summer went back to nursery, and it was the following weekend, the Kings Coronation, that Summer’s dad said ‘she’s just not right’ and we need to take her back in. We got an appointment after the bank holiday, and it was with the same doctor that we’d seen previously. Summer had always had a large abdomen and as she was only nine months, we just put it down to normal baby weight that will come off when she starts moving. The first thing the doctor said was ‘her tummy is massive’ and her colouring was yellow. The doctor thought she might be anaemic but after feeling her stomach she said she found something and wanted to send Summer for a scan.

Intensive care

I immediately started panicking and we went straight to the ultrasound scan. They didn’t mention anything to us during this, but a few hours later they told us that she had a mass in her stomach. We didn’t automatically think it was cancer and I just assumed it was an infection. It didn’t even cross my mind. After her next scan, they told us it was a tumour. She had stopped eating and drinking so they put her on an IV drip and checked her bloods which confirmed she was anaemic. She had a blood transfusion and stayed overnight before taking an ambulance to the children’s hospital. We had to stay on the burn’s unit for about a week as there weren’t enough beds, and she didn’t have a treatment plan yet. In the meantime, because of all the fluid she had she was really swollen so her face and feet ballooned. She was struggling to breathe so they put her on oxygen as her lungs were getting crushed. She went to intensive care for three days as they had the equipment to help. They managed to medicate her so the swelling would go down and they sorted the water retention.

Starting chemotherapy

We then moved to the oncology unit and Summer started chemotherapy. She’s started to lose her hair and you could see the swelling in her stomach start to go down so then her sparkle started to come back. She was smiling, laughing and being cheeky. Summer is having intense chemotherapy every ten days for seventy days. She’s just finished her second round and we’re taking each day as it comes. We have some scans coming up and she’ll have MIBG scan which is when they inject a dye that shows up in the scan to see if it has spread to anywhere else. She has it on her lungs and her heart, but we need to see if the treatment is working.

She’s still just a baby

She still wants to play, and she loves her silk scrunchies. She’s taken her sisters and holds it to her chest with her when going into theatre. I’ve told the staff if she goes in with her scrunchie you have to make sure she comes out with it as she’s obsessed. It’s her way of comforting herself. They’ve said it gets easier and during the ten-day periods we could potentially start going home if she’s okay. Ideally, I would love to because I want to see my children and need a bit of normality. I’m a bit scared she’s going to go down again with her oxygen and she’s very prone to infection as her immunity is so low. We’ve become little nurses at home and frequently check her temperature. I’m also NG trained (fitting the Nasogastric tube) which means I can do her feeds and medicines, and this allows you to go home as they’re comfortable you know what you’re doing. There are also loads of helplines to help families with this if you get stuck. I need her to be a child as well. I can’t allow her to be stuck in a cot with wires where she can’t crawl or experience the outside. She wants to know what a tree and a bird is and be able to make friends. So, we just want her to get better as soon as possible.

Summer’s siblings

I’ve got two other children who are both at school so that time was difficult. I spoke to their dad and asked him to sort the children out as I would be at the hospital with Summer. Everyone does rally round and support you in times like this, but I just never expected it would be us. My son is doing his GCSEs and my daughter is in Year Six. My son is very understanding and knows what is going on. I’ve always been open with him and I think that’s helped. He calls her his little bean, when I was pregnant, she was baby bean and he always ask after his bean. My daughter is a bit more in the dark about it because I don’t want her to get upset. She’s sensitive and because she’s not as open I’d worry that she’d hide a lot of her feelings. She understands Summer is ill and she’s been really brave about it. I’m so proud of my children and I didn’t realise how brave they are until we got to this point in our lives where we all need to be there. They need to be grownups, and they have been which is comforting to me.

I won’t allow this to break me

I was so scared of the word cancer, but children are so resilient. If you do get a diagnosis, it’s okay to get upset and the people who are looking after you are amazing, and they know what they’re talking about. You’re not stupid for asking questions, you want what’s best for your child. My way of coping is to have a laugh and a joke but at the moment it’s been difficult, and I have felt like I’ve lost my sparkle. But I’m not allowing it to break me, and everyone faces cancer in their lifetimes. The support is out there, charities are out there, and knowledge is power.

Charlotte, Summer’s mum, June 2023

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