Rufus's Acute Lymphoblastic Leukaemia Story

Started with a rash

Rufus was diagnosed with Acute Lymphoblastic Leukaemia at three years old after I discovered a rash of tiny pinprick dots across his torso one morning. He seemed relatively well regardless of this except for having recent viral colds and fevers. Things that we overlooked as normal for a toddler picking things up from nursery in the winter. We had the rash checked out because it didn’t feel right, even after his GP told us it was nothing to worry about. He was diagnosed in A&E after a blood test.

Suffering a relapse

Rufus grew up into the most amazing little boy, despite three and a half years of treatment and all the trauma that comes with it. In 2020 he rang the end of treatment bell at home during lockdown and we all looked forward to life after cancer. Devastatingly the nightmare returned when he suffered a late relapse in November 2021. He suddenly deteriorated after having a common cold, so we took him straight to hospital where a full blood count showed staggering numbers of leukaemia present in his blood again. His doctors were baffled at how late after finishing treatment this has happened. 

Decision was made to start immunotherapy

Rufus was enrolled onto a relapse protocol, sadly this didn’t work, the ALL was more aggressive, and Rufus had become refractory to chemotherapy. It was decided in a national MDT meeting that Rufus would need to start immunotherapy and as long as this helped him reach remission, he would receive a bone marrow transplant. To our complete relief, the Blinatumomab worked, and he was again in remission, the search for a donor began and he was admitted to the children’s hospital in February 2022 to begin the transplant. We spent five months in Bristol, as a family with his younger brother. Three and a half hours from home. It was the hardest time of our lives. 

Slowly getting back to normal

18 months later, Rufus is well, and things are starting to take shape. We have been hit with some autoimmune complications post-transplant and he was diagnosed with autoimmune haemolytic anaemia in November 2022. Up until the last couple of weeks, this stopped him being able to return to school and he needed to stay relatively isolated, but fingers crossed now things are moving forward with him having just started school part-time after the thumbs up from his consultants.

What makes Rufus, Rufus 

Rufus is a passionate gamer, he is Fortnite’s biggest fan. He is an avid YouTube fan too, his favourite is Ali A, whose Fortnite games he has watched over and over. Fortnite is also where he discovered his love for The Kid Laroi’s music which is now a staple on every car journey. He is a keen and talented artist, he loves to draw and will enjoy hours to himself creating Fortnite skins, drawing anime and following tutorials on YouTube. Rufus adores animals, particularly dogs. He cares a lot about the environment and well-being of all creatures. He is also very into the Marvel and particularly the Spider-Man universe, having thought of every theory under the sun about each movie. Gaming and watching Spider-Man got him through some long and unpleasant days during his four month transplant stay. These things always brought the Rufus we know back into the room when things got hard. 

Rosie, Rufus’s mum, June 2023

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