On January 22nd, Alfie had another MRI scan, and the results were 'remarkable'. The scan showed that the tumour was slightly smaller after the radiation. Alfie's consultant was pleased with his progress, and the fact that his symptoms had not yet returned. Unfortunately, by the start of March 2014, Alfie started experiencing problems with his eyes. This was shortly followed by wobbling when walking and slurring of his words. We took Alfie straight back to NGH where they performed a CT scan.
We were told that Alfie has had a small bleed, bleeding within the tumour. We then went back to John Radcliffe where they took Alfie down for another MRI scan. A few days later we were told the heart-breaking news that the tumour has grown and is progressing again. Alfie had some of his brain tissue tested for a certain mutation, if it was positive then he would have been eligible for a clinical trial. In the meantime, he had a chemotherapy drug called Temozolomide every day for five days in a twenty-eight-day cycle.
Alfie completed his first week of chemotherapy and coped very well with it. He did get very tired after and experienced some sickness too, but generally he was doing well. Alfie continued to take steroids which made him very hungry, this was a problem when it came to taking Chemo as he was not allowed to eat for one hour before and two hours after. That was like torture for Alfie. We all continued to pray for a miracle and never gave up hope. We are so proud of our little hero and the courage he showed. A smile from Alfie was like light in the darkness and we couldn't have been prouder of our beautiful boy. A true inspiration to us all!
April 2014, we heard that Alfie's tissue sample had tested negative for the mutation so unfortunately he was not eligible for the clinical trial. Alfie continued with his next course of Chemotherapy but did not cope well the second time around. Alfie was very sick and had several headaches and could no longer use his right arm or hand. On Saturday the 26th of April at 3.30am, Alfie awoke with a headache and sickness. We took Alfie to Northants hospital as he was very drowsy and having to be physically woken up for a drink of water. Alfie ended up sleeping all day and only waking up for 2 minutes at a time. Alfie did not eat or go to the toilet, and he barely spoke, even when he did speak, we could not understand him. This was extremely frightening.
The next day after being on a drip all night, Alfie woke up properly. He could not walk unaided, and his speech had become very slurred. However, he sat up and ate breakfast. This was such a relief to us. We had never been happier to see our little boy eating his cereal. We even got a big smile.
Alfie's blood tests had ruled out any infection, so he was later taken down for a CT scan. On the Sunday afternoon, Alfie's Consultant Dr Bindu came in to give us the scan results. It was devastatingly the news we had dreaded. The scan showed an increased pressure on the brain caused by the tumour progression. A part of us already knew the results, but having it confirmed was heart breaking. Our Alfie had five amazing months after Radiotherapy and coped extremely well with his first course of palliative chemotherapy, but sadly by March the tumour began waking up and the chemo had begun making our little boy sick.