Siblings affected by childhood cancer: ‘The fact that she’s been diagnosed twice makes the journey even longer’ – Alyssa’s story

For Childhood Cancer Awareness Month, we spoke to four siblings to get their perspective of how childhood cancer affects families

In the final instalment of our 3-part series, Alyssa shares the story of her younger sister, Alayna, who was diagnosed with Ewing’s sarcoma – a type of bone cancer – in September 2012. Alayna is currently undergoing treatment after her cancer returned earlier this year.

“I was only about 14 and had just gone back to school in year 9,” Alyssa recalls. “My sister had just gone to hospital for some check-ups and scans, and that’s when they told my parents what was wrong.”

Alyssa and her family were living in Dubai when the news came. Her sister, Alayna, was 10 years old and about to start year 6 when the whole family were gathered together to be told she had cancer.

Supporting your sister from halfway around the world

“I was very confused and quite upset,” Alyssa says. “I was unsure what was going to happen in future and it was really very scary for her and all of us.

“Especially as we realised she’d have to come to the UK for treatment while we were in Dubai.”

Alyssa says her parents were shocked but put on a brave face for the rest of the family. While she didn’t know what was going to happen next, they were trying to keep calm to plan for the treatment.

It was a few days later that Alyssa’s dad went over to the UK with Alayna to start treatment, while her mum stayed at home to look after her and her older brother, Nathaniel.

“Nathaniel and I were actually in Dubai the whole of that school year. My parents swapped over, but we didn’t get to see her,” says Alyssa.

“It was quite sad, we talked to her a lot on the phone, but we didn’t get to physically see her.”

“It was quite emotional as our whole family was separated. I was used to having my mum and sister around all the time, so it was very hard when they weren’t there.”

Alayna came back to Dubai once during this period, in May. She’d just finished her chemotherapy and Alyssa recalls how she didn’t look like herself.

“She was very pale and thin, so it was very hard to see her like that. It was still great to see her again, but it just wasn’t the same.”

‘Hearing she was cancer-free was amazing’

After the first year of treatment, the whole family moved to Reading in the summer of 2013, which was only about an hour from where Alayna was having treatment in London.

“It was that September when she’d finished her treatment and came home for good that we found out she was in remission,” Alyssa says.

Alayna still had to have regular appointments, but these became fewer and fewer with time, providing the family’s first freedom from the stresses of cancer.

Alyssa remembers how happy they were: “Hearing she was cancer-free was amazing, because she didn’t have to have treatment again.”

But this didn’t mean all the worries were gone. “We used to think it meant you’re safe, but you’re not completely safe. You’re done with treatment for then, but you still need to see how things go, and go for check-ups.

“The whole thing was a reminder that things could change, or it could come back.”

The results came back clear every time, and Alyssa says this gave them a boost each time they heard she was doing fine.

But unfortunately, after almost 5 years in remission, the family received the news they’d been hoping to avoid – Alayna’s sarcoma had come back.

Dealing with cancer twice

“It was just horrible,” says Alyssa. “It was different to last time, because we understood what she had gone through, and knowing she had to go through it again was awful to hear.

“I got to go with her for one week of chemotherapy and was in hospital with her. I’d never seen what it was like for her, and as a sister, actually being there made me feel more supportive, like I was really helping her.”

Alyssa now feels better prepared to deal with it, being older and understanding the treatment process more.

Though of course, being older brings other challenges too. Alyssa started at university in Gloucester in 2017 and being away from home makes it hard to stay in touch.

“In the summer this year, I was around and free so I was fully there to support her through radiotherapy. But when I go back to university it’s going to be hard as she’ll have more chemotherapy coming up and I’m going to have to focus on my own studies as well as trying to be around to support her.”

Alyssa knows she won’t be able to see her sister as often as she’d like, but being able to call her means she can provide some form of regular support.

She’s also planning regular trips home, while doing her best to stay healthy so she can see her sister.

“If I’m a little bit ill I know I can’t see her because that might put her at risk.”

This makes going back to university particularly hard, says Alyssa, especially as she knows the first few weeks of term are prime for the spread of ‘freshers’ flu’.

The days to come

Although Alayna has more treatment ahead, Alyssa believes the experience has had some positive influences on her life.

“You need to appreciate your family members and be there to support them,” she says. “Life is short, and we just have to be really close as a family.”

And the support Alyssa provides extends far beyond the regular visits and phone calls. She’s particularly proud of the chances she gets to be an older sibling, helping Alayna out with her homework and other bits from school.

Alyssa’s hopes for the future are that we’ll be able to beat cancer for good, and she’s been inspired to get involved with the work of charities like Cancer Research UK. She’s been particularly struck by the opportunities charities have given her sister, from modelling to help raise awareness of childhood cancer and appearing on the Stand Up To Cancer television broadcast in 2014.

Although there’s more on the road ahead, Alyssa draws a lot of courage from her sister.

“The fact that she’s been diagnosed twice makes the journey even longer,” Alyssa says. “She’s a lot more mature and grown up for her age because of what she’s been through.”

“I think she’s inspirational to everyone, and I’m so proud that I’m her sister, because she’s done so much and she’s doing really well.”

Carl

We would like to thank Alyssa for sharing her story and helping raise awareness of cancers that affect children and young adults. If you’ve been affected and need to talk to someone, you can call our nurses on freephone 0808 800 4040 or contact them via this online form.