The Story of Alfie Burke.

Alfie was diagnosed with Optic Pathway Giloma, a type of brain tumour in September 2018 at the age of four. His Dad Jay an Mum Tash shares their story so far:

Optic Pathway Giloma is a slow-growing brain tumor that arises in or around the optic nerve, which connects the eye to the brain. As the tumor progresses, it presses on the optic nerve, causing a child’s vision to worsen. This condition can occur in patients who are diagnosed with Neurofibromatosis.

In 2019, Alfie’s (aged 5) first chemotherapy battle commenced. Alfie’s symptoms with treatment became aggressively worse, experiencing nausea, vomiting, tiredness and his mood began to deteriorate. That day our lives were turned upside down, we were completely heartbroken, devastated, numb and in shock. So many thoughts ran through our minds. We were scared and terrified that we was going to lose our beautiful boy Alfie. A boy who was scared, anxious and worried about the unknown.

In 2020, Alfie finished his first battle with chemotherapy. The specialist informed us that Alfie’s treatment was effective, his tumour had disappeared. We were so proud of Alfie throughout his journey, he showed amazing resilience, courage and bravery.

Despite the effectiveness of Alfie’s first chemotherapy, Alfie returned to Alderhey Hospital and several MRI brain monitoring scans were performed. The scans identified that Alfie’s Optic Pathway Glioma had sadly returned. In admiration for Alfie, we realised another battle of chemotherapy was looming. On the 22nd of April 2022 and after considerable discussion with family, the specialist prepared Alfie to start his second course of chemotherapy.

On the 25th of July 2022, a meeting was conducted between the hospital Neuro-Oncology MDT and Alfie’s Specialist. The consultants had identified that Alfie’s scan revealed no change into Alfie’s first Glioma diagnosis, instead the scans discovered a Secondary tumour that had developed on the brain stem. The specialists reported this to be ‘life threatening’ That moment was a real milestone with a reminder that our little boy was about to start his longest journey yet, but we had to be strong.

On 12th August 2022, the specialist announced that Alfie’s body was not responding to the second count of chemotherapy, and without hesitation Alfie began his third course of chemotherapy, after specialist declared that the tumour on Alfie’s brain cell had since developed abruptly. We were terrified that he wouldn’t survive the chemotherapy given how poorly he was, but it was the only option.

Alfie continued his battle through chemotherapy over the forthcoming months as he encountered various symptoms including; chest pain, abdominal pain, nausea and extensive vomiting. The vast development of symptoms meant that Alfie’s body was unable to tolerate further medication and consumption of food. On the 14th of June 2023, the specialist disclosed that it was best to stop Alfie’s treatment as a means of giving him a better way of life.

On 02 January 2024, a meeting was conducted between the hospital Neuro-Oncology MDT and Alfie's Specialist. The consultants had identified that after several MRI brain scans Alfie had before Christmas shows a significantly changes to the tumours. After considerable discussion with family, the specialist prepared Alfie to start his fourth course of chemotherapy on the 15 January 2024, To try to slow down the growth of tumours. Alfie has had this same chemotherapy back in 2019 Alfie's first chemotherapy.

On 29 April 2024, Alfie's specialist consultant stopped his fourth course of chemotherapy, and a meeting was conducted between the hospital Neuro-Oncology MDT and Alfie’s Specialist and Alfie's parents. The consultants had identified that after several MRI brain scans shows a significantly changes to the tumours. After considerable discussion with family, the specialist prepared Alfie to start his fifth course of chemotherapy on the 22 May 2024. The total duration of this treatment will be approximately 81 weeks. If the several more MRI scans Alfie has, shows more significantly changes to the tumours. Alfie's specialist can stop the treatment at anytime.

To date, Alfie continues his daily battles of chronic abdominal pain, vomiting and chest pain. Alfie is now registered as severely sight impaired (blind). this is caused by the tumour going on the optic nerve, it is without devastation that all resources have been explored in the UK and our journey to help Alfie continues. Alfie’s last option is to go to America to receive treatment known as ALEXION which aims to block the activity of mutant protein kinase causing the cancer cells to stop growing and die. The possibility of this treatment being effective is not 100%, but it is our last hope.

Your support would be a step closer to a positive outcome for Alfie and his family. Thank you all, from the bottom of my heart ❤️.