Grandparents of children with cancer: “I would never want to go through it again”

As part of Childhood Cancer Awareness Month, we spoke to 3 grandparents about their experience of having a grandchild with cancer.

Vivienne: “You can’t stop your mind from fearing the worst, but you need to be so positive.”

Vivienne is grandmother to Alyssa, who was diagnosed with acute lymphoblastic leukaemia in 2014.

“Alyssa was 7 when she was diagnosed. I remember they came to the house one day and Alyssa looked puffy and awful – she did not look well,” says Vivienne.

Alyssa’s mother Angela took her to the doctor, where they were advised to go to the hospital.

“They were at Preston Royal and Angela rang me to come to be with them, Alyssa had been admitted and was in a room of her own. They said it was leukaemia and they were waiting to take her to Manchester Children’s Hospital,” Vivienne recalls. “It was such an anxious time. You can’t stop your mind from fearing the worst, but you need to be so positive.”

Vivienne lives half an hour from Alyssa and her family, so were nearby to support in whatever way they could – cooking, cleaning, babysitting or acting as a taxi service. “Sometimes I would stay with Alyssa in hospital to give Angela and Michael, Alyssa’s dad, a break. It was all hands to the pump.” 

Vivienne and Alyssa.

Cancer is something that affects the whole family, and Vivienne describes how she also had to be there to support her daughter too. “I had a lot of phone calls with Angela – she is my daughter and I wanted to help as there was so much to deal with. Sometimes I would just listen to help her juggle everything.”

While Alyssa was receiving treatment, Vivienne made sure she was also able to attend regular appointments with Alyssa and Angela. “I liked that as I felt like I was helping and checking we got all the information and asking the questions we needed to. And we were so lucky as the meetings were positive and she was responding well. 

“She is doing so well now, and I know she has been so happy to help raise awareness to help others too.

“Some of the memories are so vivid still, but I do feel we have moved away from it a bit. I would never want to go through it again.” 

Liz: “Life is not fair”  

Liz and Danny, Granny and Grandpa to Hamish, who sadly passed away in 2017. 

Liz and Danny with Hamish and Lily.

“Back in 2011, Susan and Sam were just starting life with Hamish and Lily and they were building their family. When Hamish was diagnosed when he was two, their world was turned upside down,” says Liz.   

Hamish was immediately sent to Glasgow for treatment. Lily, Hamish’s sister, went to stay with Liz and Danny.  

“Susan and Sam did not really come home for 18 months. Lily went to join them down in Glasgow after about a month, and she even started school down there.”   

While the family stayed in Glasgow, Liz and Danny were able to visit, and occasionally took Lily away for short breaks, “but it was such an unsettling time for everyone”.  

When the family did return home, we saw them every day, helping out in whatever way possible. “We were doing what we could but there was a feeling of helplessness too. We were having to watch what it was doing to all the family. As a parent, you spend your life trying to fix things for your children, or sorting things out, but this is not something we could fix.”  

And the family was rocked again in 2015, when Hamish’s mum Susan was diagnosed with incurable breast cancer.   

“We saw them every day and were around to do whatever to help Susan and Sam – everyone was so determined to keep things as normal as possible, for both Hamish and Lily,” says Liz. “But it was so hard to see. You want to protect your family and it was so horrible.  

“Susan had just finished her treatment when Hamish was re-diagnosed with another type of cancer DIPG in 2016. We always had always a glimmer of hope that there would be a breakthrough to cure him. However, he passed away in 2017 when he was just eight, and you could see the impact it had on everyone – it was just heart-breaking. “ 

“Hamish was such an energetic lovely soul and everyone in the town knew him,” says Liz.   

Since Hamish died, the family and local community have been busy fundraising for #TeamHamish and working hard to enhance the beautiful Links area in Nairn creating a waterside park in in his memory, located in Hamish’s hometown.  

“It has given us all something positive to focus on in this dreadful situation and we are here for Lily too, who is such a wonderful teenager now.”  

Susan was also re-diagnosed and had more treatment for her breast cancer, but sadly she died earlier this year.  

“It has all been so horrible again and words can’t express how we feel about losing her too.  

“I know how passionate she was about the #TeamHamish project and it’s more important than ever now to complete it. It is going to be a legacy to them both.” 

David: “The whole experience has definitely made me a lot more emotional.”  

David’s grandson Evan was diagnosed with hepatoblastoma as a newborn baby in 2011.  

David with Grandson, Evan, who was diagnosed with hepatoblastoma as a newborn baby in 2011.

David was on an Army tour in Afghanistan when Evan was born. 

“I was in a meeting and someone came in to say that it has just been on British Forces Radio that I was a

grandad,” says David. “I went straight to a secure line and I phoned home to speak to my wife Maureen, who told me more about Evan being born.” 

But when David rang again later that night, the atmosphere had completely changed. “She was in shock and said, “he’s got cancer”. I had been bouncing before I called and then suddenly time stood still.” 

David remained in Afghanistan, but after sleepless nights and constant worry he knew he needed to go home. “I felt so much love for a wee person I had never seen. I felt so detached but so close. I was due to finish my tour a few weeks later and so I was given compassionate leave and packed up,” he says. 

David went straight to see Evan from the airport. “It was so good to see Evan, but I was also aware of not wanting to intrude. And I felt guilty – I felt guilty for being healthy, and for not being there when I was needed.  

“My mind went to what I could do to help – how could I help financially or support them in any way I could.”  

Evan went to Manchester for his operation, and David and Maureen were kept up to date. “They sent a photo of him with a big scar on his stomach, but he had such a cheery smile on his face – it gave me so much hope.” 

David’s advice for families going through a similar struggle would be not to Google things. “There’s so much out there that can terrify you,” he says. “So much that is false and scary to see”.   

Evan recovered and his family were able to watch him grow up into a healthy child. “As time went on, he became such a boisterous wee lad and we were able to have some normality, with having him overnight, or going on trips.” 

Looking back, David admits that there are moments he forgets, which can suddenly come rushing back. “I forgot that he had sepsis twice – I don’t know how I don’t remember that but maybe it’s that I am in denial,” he comments. “Other things come flooding back, moments like seeing a child with an oxygen tube that bring it all back.” 

The whole experience has made David more emotional. “I think I used to be quite tough but now I start welling up at some of the smallest things. 

“I feel so privileged to have Evan and his sister Jorja. We used to look after her sometimes too, and she’s a teenager now – we are so proud of how she has dealt with everything.  

“I just love appreciating Evan for being a wee boy. I don’t want to dwell on the sickness, but just seeing him being cheeky and funny. It’s so special just to see him growing up.”  

Lilly and Tom, a media volunteer liaison manager at Cancer Research UK

Thanks to Vivienne, Liz and David for sharing their experiences with our Media Volunteer Liaison team.