At 17 months old, on 9 April 2018, Fraser was diagnosed with stage B acute lymphoblastic leukaemia (ALL). His mum, Alison, shares his story.
A month into Fraser's treatment we were told they had found an extremely rare gene mutation - this diagnosis was called B-Cell ALL with Burkitts MYC gene.
This cancer was so rare it had never been treated at our local hospital or Great Ormond Street Hospital (GOSH).
Fraser started an intensive treatment in the hope it would cure it. He completed six rounds of intense, high-dose chemotherapy which consisted of a week's-long infusion and then recovery time. During this time, he suffered from the worst case of mucositis they had ever seen and became mute.
After a long seven months in the hospital, he was able to go home on Christmas Eve.
A month later, unfortunately, we found out it had returned and he was put forward for a trial of CAR-T therapy at GOSH. He had his cell infusion on 24 July, 2019. This treatment was a success, but after a month, he had lumps. These lumps were scanned and they found out the cancer had returned in a bulky form. He had tumours in his eyelid, head, neck and down his spine.
The tumour was so large that it was compressing his spinal cord and he should have been paralysed. The only option now was to bridge with platinum-based chemo to try and get him to transplant.
GOSH found us a 10/10 frozen umbilical cord for Belgium. He had eight doses of very strong total body irradiation (TBI) before the transplant.
He had his transplant on 13 December, 2019 and within two weeks we were sent home! He made an outstanding recovery, learning to walk, talk and eat again within a month!
Consultants have said they will never see another case like his in their career and his recovery is something out of this world.
He is now a happy six-year-old going to school. So far, he has cataracts in both eyes making him partially sighted, but it doesn’t stop him!
He has leg pain from treatment and will have a lot of future problems, but we just take each day at a time. He has been featured on Make a Wish and in the media for his amazing journey!
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