James's Story

In November 2014 our beautiful 7 year year old son was diagnosed with Acute Lymphoblastic Leukaemia.

It was his little sister’s 2nd birthday and it came as a complete and utter shock. James has Down Syndrome and Sensory Processing Difficulties so having his temperature taken every 4 hours was very distressing for him.

We worked with the Hospital Play Specialist to find a way to make it easier to do. He also hated X-rays (which at one point he seemed to need on a daily basis when his NG tube kept moving!) and often needed to be restrained for ultrasound scans. He always thanked the nurses and doctors when they let go, which tells you a little bit about what a gorgeous soul he is! He steals a bit of the hearts of everyone he meets and makes us very proud!

The treatment lasted over two and a half years and was tough for James, as is often the case with children with Down Syndrome. He had some unusual reactions to medicines and lots of opportune infections, including a nasty fungal infection in his lungs which required 6 months of treatment to shift. He kept a central line throughout, which required infection control vigilance and ended up needing a gastrostomy to help supplement his calories. He finally finished, rang the bell and went to Disneyland Paris for his Make-a-Wish trip, but sadly the leukaemia returned 16 months later.

The second time of doing a similar two and a half years of chemo treatment was soul destroying for the family. James however, faced most things with a smile. He always loves seeing his Consultant and favourite nurses at hospital, and looked forward to “a little sleep” as he calls a General Anaesthetic. During lockdown we only really left the house to go to hospital appointments, and life in and out of hospital rather than at school had become the norm. He faced many challenges and a stay in ICU with a collapsed lung, but we were sort of used to it and I began to help other families, especially those with DS and leukaemia.

By the time he finally finished his second lot of treatment in 2021 he was 14 years old and half his childhood had been spent fighting leukaemia. But it wasn’t over. A tiny amount of blasts reappeared in his marrow and it was soon confirmed as another relapse. He was lucky enough to be put forward for CarT therapy in London a few months later.

Thankfully that has done the trick! He has been Leukaemia free for 21 months now. He’s finally swapped his central line for a port which he needs for monthly Immunoglobulin infusions and can enjoy swimming and water based activities for the first time in years. He’s permanently immunocompromised and is left with a gastrostomy to supplement his eating, which has been affected by years of chemo.

This aftercare is potentially never ending, but he is still here and smiling. He has missed out on so much of his childhood, school, swimming, holidays, days out, playing with friends, etc etc. His treatment over the last eight and a half years has had a massive impact on the whole family and we are very grateful to the Ben Saunders Foundation for letting the four of us have a week of fun and relaxation together.