Nikki and her son Amarvir, who was diagnosed with acute lymphoblastic leukaemia in 2010.
We spoke to Siobhan, Nikki and Jessica about their experiences of childhood cancer – from struggles to find a transplant match and a lack of representation in health literature and campaigns to misunderstandings about cancer in their communities.
Nikki and Amarvir: “We have shared Amarvir’s experience to help others see that childhood cancer can happen to anyone”
Amarvir was diagnosed with acute lymphoblastic leukaemia (ALL) in September 2010.
“We are a Sikh family and, since Amarvir’s diagnosis, the community has been incredible in terms of support from family and friends. We have had help in all number of ways, from meals to childcare, and so much love and compassion. However, we have also experienced ignorance from some people within our community too.”
Nikki remembers one conversation vividly, which happened when she was flying back from India and got talking to a lady at the airport.
“Our plane was delayed so we talked for longer. I told her about Amarvir and she said, “It was your fault – you must have eaten something while you were pregnant – it happened in the womb.” Nikki couldn’t believe what she was hearing.
“I was so shocked and I was so upset. I kept thinking about how this woman, who was my age and a businesswoman, could think this and say it so confidently to me. To have that ignorance and to blame me – I just couldn’t believe it.”
There have been moments closer to home too. “I have had family coming to the house but being afraid of “catching” cancer – it made us feel horrible, and I am so protective of Amarvir – I can’t have him feeling like that in our own house.”
Nikki says there was a lot of negativity after Amarvir was diagnosed, but she was keen to tackle the misunderstanding. “I have always want to be open about what was happening. I don’t want it whispered. I have wanted to talk about it, to share our experience and statistics, and make people realise that cancer does happen in our community.
“We’ve seen that some people can struggle to talk about cancer and I think it is seen as a private, personal, family matter and not something to be spoken about in public. I think it’s a form of self-protection – not wanting to know more, as if it can’t affect you if you don’t know about it.
“My view is that talking publicly helps others, especially when early diagnosis can be so important, and gives you more treatment options – I want to help more people get diagnosed early and have the best chance of treatment.”
Since Amarvir was diagnosed, the family have been involved in a number of campaigns to raise cancer awareness, which is something Nikki is extremely passionate about.
“We need more people from different communities and different religions to share their experiences. These will always have a huge impact within their own communities.” Nikki says the family shared Amarvir’s experience to help others see that childhood cancer can happen to everyone.
“From a personal perspective, I know that seeing Sikhs in campaigns is a huge step – we really do take notice!”
And Nikki has heard that her story has made an impact in unexpected ways. “Our experience is about childhood leukaemia, but another Sikh lady told me that, because of us, she had taken her dad to the doctor and he was diagnosed with prostate cancer – it was so far removed from our actual story, but the awareness had prompted her to take action.”
Jessica: “They said it would be more difficult to find donors”
Jessica was diagnosed with acute myeloid leukaemia (AML) in August 2018.
“I was just a normal 17-year-old and was looking forward to going back to school to start my A Levels and thinking about university. But, in a flash, all that had to be put on hold.”
She started chemotherapy in January 2019 and had two cycles of two different types of chemo, as well as taking part in a clinical trial. Unfortunately, this did not get all the cancer, so Jessica was told she needed a bone marrow transplant.
“As soon as they said about the transplant, they said it would be more difficult to find donors. Unfortunately, there are less people on the register from my same Black African background to match with me. I was so shocked.”
The doctors initially tested to see if her brother was a match, but unfortunately he wasn’t. “It was a scary time.” The doctors had more success looking for a match using cells from the umbilical cord of a newborn baby, but Jessica had an infection at the time, so the transplant couldn’t go ahead.
“We waited and then they asked to test if my dad was a match. It was a half-match and doctors said that research into bone marrow transplants has shown that half matches can now be a good alternative.
Both Jessica and her dad were thrilled that this meant the transplant could go ahead. “My dad was so happy to help.”
Jessica had the transplant in July 2019 and has since passed the crucial 100-day post-transplant milestone. “I still have check ups but I am now so keen to raise awareness of this issue, to encourage more people to come forward from different backgrounds.
“I want to encourage fellow Black people or any minorities backgrounds to become donors and help save other lives.”
Siobhan and Dylan: “If there is an under-representation, there will be a lack of understanding.”
Siobhan’s son Dylan was diagnosed with a type of non-Hodgkin lymphoma known as B cell lymphoblastic lymphoma in December 2016. He underwent years of treatment which finished in March 2020.
Siobhan, whose mum is from Guyana, said: “As a Black mother of a child going through cancer treatment, I am really aware of the lack of representation of different races in materials, books and leaflets.
“If there is an under-representation, there will be a lack of understanding.”
Siobhan says this lack of representation can have different consequences. “There can be a lack of awareness that you or your child might be at risk, but also when you are looking for possible symptoms – things like rashes or bruises are not going to show up in the same way on darker skin.
“So much of the guidance that you see relates to white skin, which might make diagnosis even harder, for parents and for GPs, to spot.
To help with this, Siobhan thinks it’s so important for Black voices and voices from other ethnic groups to be heard, to help share these experiences and make other people in the community realise that it could affect them.
“I think that this under-representation is an issue across a lot of health conditions, and it can lead to people being excluded, and this is something that can’t be accepted in 2020.”
Tom Bourton is a media volunteer liason manager at Cancer Research UK
Thanks to Nikki, Jessica and Siobhan for sharing their experiences with our Media Volunteer Liaison team.
If you would like to share your story with us, please visit our website. And if you have questions about cancer, you can talk to our nurses Monday to Friday, 9-5pm, on freephone 0808 800 4040.