“Sam likes telling jokes and entertaining people – he loves to find things funny.  He used to like cycling his bike before he became unwell, he enjoys playing with Lego and on Minecraft.

On 17 January 2021 I discovered a golf ball sized lump on Sam’s neck. I took him straight to the GP who brushed it off as an infection, telling me it would get better. We then went to A&E at our local hospital where we were told the same thing. Six or seven medical professionals told me there were no red flags and we had nothing to worry about. We ended up taking out private medical care and we eventually got a diagnosis of T-cell acute lymphoblastic lymphoma (T-LBL) on 6 March 2021 – Sam was seven years old. They also discovered a large tumour on Sam’s chest. We were referred straight to St. Peter’s Hospital in Chertsey, but because the children’s ward was so busy, Sam had to wait a whole week before starting treatment. By this point, he was really unwell, and we were moved to St. George’s Hospital in London.

When we received Sam’s diagnosis, we were very frightened and quite angry that the NHS had missed it even though we told them something was wrong on many occasions. 

Sam had chemotherapy for three and a half years.  In reality we have been on this (uninvited!) cancer journey from January 2021 – August 2024 so it is a very long time.  My friends keep saying “oh this year has gone so fast” but for us, time seems to have slowed down so much.  Sometimes it feels like there are two planet Earths that are side by side – one planet Earth where the normal people live and go about their daily life.  And then there is the planet Earth where my family is on.  We can see and live beside the other planet Earth, but we can never be on that easy, no-drama, uncomplicated planet.  Our planet is a place of uncertainty, unexpected hospital visits, and where time can just stop at any given moment without any warning.

Sam’s treatment plan has involved weekly blood tests, daily chemotherapy pills of different types, daily, weekly and monthly IV chemotherapy, many sessions of chemotherapy into the spine, antibiotics every weekend and every time we had a hospital stay, blood transfusions and many general anaesthetics. He has responded well to the treatment and the chemotherapy has targeted the leukaemia in the way it is supposed to.  But the downside was that the chemotherapy was so strong and for so long that it meant many hospital stays.  Through hard luck, Sam ended up with a hospital stay for almost every single half term, missing family birthdays and holidays in the UK, as well as his school residential. He even had to leave a film halfway through in the cinema as he had a high temperature. It became a long process for him to endure.

We were introduced to Momentum at St. George’s Hospital. One of their Family Support Workers came into Sam’s room, and she was like a fairy floating in to see us. She was soft, gentle and reassuring and always had time for us.  When Sam was first diagnosed with cancer, we were in the middle of the COVID-19 pandemic so it was really tricky for everyone, but our Family Support Worker would always be there to check in on us by phone.

I had six sessions of counselling which was organised by Momentum – it really helped me at a time when I was struggling.  Momentum also arranged play therapy for Sam which was wonderful. Sam used to love playing a sweet shop role play game with the therapist.

We’ve been on Momentum’s riverboat, but unfortunately it was on a day when Sam wasn’t very well. We’d love to have another trip on it now Sam has completed his treatment. They also organised tickets for us to go to Chessington World of Adventures and we had a visit from Doorstep Santa at Christmas time. Momentum really have been a life saver. 

Sam’s school have been very good with him – they have made adjustments to the classroom and have been very accommodating with medicine and letting us know when there are other illnesses going around in the school.  The school have kept Sam’s classmates informed when he’s has been off school for either hospital stays or chemotherapy, and they’ve always told other pupils not to make a fuss of Sam when he returns.  They’ve also sent homework for Sam to do in hospital at our request. Sam feels super anxious about returning to school for the new academic year, but we are all looking forward to a bit of normality now his cancer treatment is complete.

My message this Childhood Cancer Awareness Month would be, to any parents unsure if their child is showing symptoms of cancer, it is ok to keep going back to the GP or the hospital to ask for answers.  We had a very delayed diagnosis because the GP and the hospital didn’t think my boy could have cancer – it is more common than you think and it is ok to keep going back.

My local church, Christ the Prince of Peace in Weybridge, have been amazing with fundraising for Momentum Children’s Charity. I have been part of the congregation since I was very young, and both my sons were baptised at the church.”

*Name changed to protect identity of child.