Please Help Dylan Beat Leukaemia

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Dylan’s story.

On the evening of 28th April 2022, after weeks of feeling unwell and numerous GP consultations, his mom Kim took Dylan to A & E. Blood tests were completed and doctors were concerned regarding Dylan’s extremely high White Blood Cell count. Dylan was admitted to hospital for further investigations. Mom received a call from Dylan the next morning as he was being transferred to Derby for specialist leukaemia treatment. Dylan had been informed he had leukaemia whilst alone in a hospital ward with no support from his family.

Dylan is a kind, funny, genuine, nice, caring young man, loving life. At 19 years of age at time of diagnosis, he was home for Easter break from his first year at university (3 weeks away from completing his first year exams). His whole life ahead of him, being now told he has to undergo intense treatment. Heart-broken does not even begin to explain how the whole family felt.

And so Dylan’s nightmare began. At Royal Derby Hospital, it was confirmed that Dylan’s exact diagnosis was Precursor T-cell Acute Lymphoblastic Leukaemia and he was transferred to Nottingham City Hospital where they have a specialist Haematology Team as well as Teenage Cancer Trust Unit. Treatment started immediately. Firstly he had to go to QMC Nottingham to have sperm frozen – should he become infertile following chemotherapy. That first night he took the brave decision to shave his hair off before the chemo took it away from him. Being a typical young man, Dylan’s trim was extremely important to him and it took so much strength to do this. This wasn’t just his hair, it was part of his identity.

Due to the aggressive nature of T Cell ALL, Dylan was advised that he would need a stem cell transplant, as chemotherapy alone would not be enough to cure it. To get to transplant stage he would have to get to remission.

He then had to endure bone marrow biopsies, high dosage steroids, intense chemotherapies, intrathecal injections (spinal chemotherapy injections to attack any leukaemia cells that may reach the spinal cord or brain), blood tests once daily or sometimes more (this in itself was traumatizing, as Dylan was extremely needle phobic). The effect this treatment had on Dylan’s body and mental health was devastating. His face swollen and puffy due to high doses of steroids, his stomach extremely swollen due to his internal organs swelling making it impossible for him to sleep, his legs, feet and genitals swollen, leaking fluid which was driven by the disease itself, a constant alternate of diarrhoea and constipation, the complete loss of his hair, effects on his mental health which left him not wanting to see his loved ones. He felt at times that he could not take any more and did say that awful thing that no parent ever wants to hear from their children. The chemotherapy protocol had not been working to control Dylan’s disease and bring his white blood count down so he was put on a different combination of chemotherapies. Through all the setbacks, pain and uncertainty, Dylan maintained his wicked sense of humour. What an inspiration he has been through the whole ordeal. Often it was him keeping his family upbeat rather than the other way around. This boy is a Legend!

This new combination chemotherapy worked and on the 5th July 2022, Dylan was told he was in remission. A donor had been found and Dylan had to undergo more conditioning chemotherapy and total body irradiation to prepare him for the stem cell transplant which took place on the 22nd and 23rd September in Isolation. He was finally discharged home on 6th October 2022. Since Dylan’s transplant, he has to take a cocktail of drugs twice daily. A stem cell transplant wipes the immune system so a balance of drugs are needed to both suppress the immune system from attacking the donor cells and to protect from viral, bacterial and fungal infections. Isolation was necessary at first but Dylan was able to slowly integrate back into normal life. Along with the medication, after discharge from hospital Dylan had to attend outpatient appointments twice weekly for blood tests to monitor the success of the transplant and to monitor for GVHD (Graft Versus Host Disease) which can be extremely serious. Just his luck - Dylan did suffer GVHD of the gut and skin but it was brought under control over time. All was going well, the outpatient appointments were then reduced to once weekly, and then every two weeks. Life was good again and Dylan was feeling ‘normal’ again. He recently completed his final first year exams which he did pass! (Of course he did) and was ready to start back at university this September.

However, during the past few weeks - 9 months into his recovery from the transplant Dylan started to suffer with severe back pain. After trips backwards and forwards to GP and A&E, having an MRI and more blood tests, Dylan was given the devastating news that the Leukaemia has returned.

He is currently completing a weekly course of Chemotherapy as an outpatient but has been told it is not a cure! Without getting him back into remission, there is no possibility of a further stem cell transplant. There are no clinical trials in this country for his age group – only in paediatrics. However, America do have a clinical trial suitable for Dylan which would involve CAR T Therapy and Base Editing whereby the DNA of the T Cells are taken from the donor – re-engineered so that they attack only the Leukaemia and not each other. This would then be followed by a further Stem Cell Transplant.

Following Dylan’s wonderful treatment by Nottingham City Hospital Haematology team together with Teenage Cancer Trust, many of his friends and family members have raised funds for Teenage Cancer Trust in the hope that more Teenagers and Young Adults can receive the same excellent treatment. As well as treating them physically, Teenage Cancer Trust also do everything in their power to help our young people maintain their identity throughout treatment.

Now we are turning to you to ask you to please help us. We need to raise the money as quickly as possible to get Dylan to America for the clinical trial to commence. This disease is aggressive and he will not have years, we are talking weeks, possibly months if we are lucky, if he doesn’t have this treatment.

Dylan is 20! He should be planning his fantasy football team, returning to university, lads holidays, his whole future, but instead he is trying to prepare himself for the worst. He sees elderly people getting into their cars after treatment feeling ‘I won’t ever get to live a long life like they have’. It makes our hearts ache to hear those words. He is so loved by so many people and has touched so many other people’s lives. Please help us to help Dylan live that life he so loves and deserves.

Our sincere thanks for reading this. We will be eternally grateful for any amount that you can give no matter how small. You can also help us by sharing Dylan’s story far and wide.

Thank you so much.