Alison shares her daughter’s story of fighting Non-Hodgkin Lymphoma, and offers advice to parents supporting their own child through cancer.
My daughter Sophie started university in September 2016 when she was 18. It was something she’d been preparing for and was looking forward to for many months. Freshers’ week came and went but the 'freshers’ flu' we thought she’d developed didn't seem to go. She visited her GP three times in two months but for whatever reason the symptoms were missed.
By the end of the first term her symptoms were more aggressive. She wasn't sleeping, she was having trouble breathing, eating and drinking and her chest and neck were extremely swollen. I brought her home for the holidays and made an emergency appointment with my GP.
This was the start of a very long journey. Over the course of the next 12 days Sophie had various appointments, including an overnight hospital stay for tests, scans, a biopsy, and various consultant and nurse appointments.
Right from the start everyone was talking to us about Lymphoma so it came as no shock when on 23 December we were given the news that she had stage 4 non-Hodgkin Lymphoma.
It wasn't like television when this type of news is delivered. We didn't break down. We didn't cry. We just sat quietly and listened to the doctors. Then when they left the room we made a promise to each other that we would fight this thing together.
It might sound silly but when Sophie was going through her tests I suggested that whatever the diagnosis we would fight it with a pair of imaginary boxing gloves and she agreed. On diagnosis day when we had time to ourselves I asked her what colour the boxing gloves were. She simply smiled and decided on purple. From then on, whenever things got tough, all I had to do was remind her about the purple boxing gloves and this spurred her on (and me).
Sophie had chemotherapy treatment followed by an intense course of radiotherapy during which she stopped university.
Sophie didn’t see herself as special throughout her treatment, but those close to her were always telling her how proud they were of her. And she was always very gracious in accepting compliments on how well she was doing. However, she would often say to me that she was only doing what anyone else would do – fighting something that will not take over her life. She wanted to be treated as normal.
She got used to the stares and awkward looks from people as she was walking down the street with no hat or wig. I recall one little boy in a garden centre with his dad. Walking past us he noticed Sophie and all we heard was “Daddy, look at that funny lady”. We just looked at each other and laughed, reassuring a very embarrassed daddy that it was ok for his son to be a child.
The course was completed at the beginning of September and she restarted at university two weeks later. When we knew Sophie was going back to university and moving back into halls I had a frame containing purple ceramic boxing gloves and purple confetti hearts made. I surprised her with this on the day she moved in and she has it on her bedside table. Whenever she has a wobble or worries about her health she has her purple boxing gloves with her for reassurance
Sophie’s now in remission and is doing amazingly.
Some advice to parents supporting a child through cancer…
If I were to offer advice to parents supporting a child through cancer I’d say get a notebook and write everything down. You'll speak to a lot of healthcare professionals and although you think you'll remember everything, you won't. It helped me process Sophie’s illness and also helped when relaying information to her dad, and others.
Let them do what they want to do. When Sophie was in hospital having her first treatment she decided to have her beautiful long hair cut short and donated it to charity. Then when it started falling out she decided to have it shaved off. I never suggested any of this but told her that unless an idea was impossible, I'd support anything she wanted to do.
And accept help. You can't do everything, so if someone offers to give you a break, take them up on their offer. The last thing your child needs is for you to crumble so try and get time for yourself.
Finally, try to keep some normality. I continued to work full-time as much as possible. Sophie joined a gym for gentle exercise and picked up her driving lessons after a couple of months. We continued to volunteer our time as adult leaders in a national youth organisation as and when possible.
The support we received from family, friends and colleagues helped us. It could be a call, a message, a card in the post. Just to know they were there was invaluable.
For further information and advice visit Bupa's health information page on nonhodgkins-lymphoma.