Toby was diagnosed with acute lymphoblastic leukaemia (ALL) on World Cancer Day in February 2022, aged four years old. His mother, Nikki, shares his story.
Toby is taking part in the ALL Together-1 trial, which means he’s had different randomisation points throughout his treatment, which is due to finish in March 2024.
Diagnosis and treatment have been very difficult for us as a family, and it affects every aspect of our lives. I had to give up work to care for him, while his older sister finds it difficult to cope with what’s happening and, as a family, we get no psychological support.
The whole treatment has gone to plan, and he hasn’t had too many complications until recently where he has had a run of bad luck. He had three emergency admissions in three weeks in the run-up to Christmas with the last admission being due to chicken pox. The IV medicine he had for the chicken pox has caused acute kidney injury (AKI-3), so now he’ll be moved back to weekly blood tests with a kidney function check each week. It’s worrying to think that he could have even more serious kidney problems in the future due to this, especially if he catches chicken pox again.
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