Our Little Star
He became a ‘big' brother at the age of three and then again at five. He would go out of his way to make sure his brothers were OK, always protecting them from any harm or danger, whilst creating lots of games and activities. He was extremely patient when he was trying to complete puzzles with one, even if the other would just come along and walk right through it. Taylan did not mind. He would just laugh, calm the situation down between the two and start again. He was a very intelligent child, with maths being his strongest subject. He always had time for his family, friends and football, with a great determination to do well. We were a perfect happy family with a normal life full of love, laughs and enjoyment.
On 19th October 2008, we noticed that Taylan's eye was not looking quite straight, but thought that he may just be tired after yet another busy weekend. The next day, we went to school as usual, but he was in floods of tears, yet he couldn't explain why. It was very unusual of him, to say the least. I asked him if someone had hurt him, or if he was feeling unwell. All he said was, "I don't know, I have a funny feeling inside my heart and I don't know why." His teachers helped to settle him down and he seemed OK, so I came back home. They phoned me later to say that he was alright, but a little quiet, and asked me if I had noticed his eye. I decided to phone the optician to book an appointment and thankfully they agreed to see him after school. After an eye test, they said that they couldn't find anything, everything seemed normal and he probably had a viral infection. "Take him to your GP in two weeks if things haven't settled," they said, sending us home.
On our way back to the car park, we were waiting to cross the road when Taylan suddenly shouted, "Wait mummy, there's another lorry coming!" But there wasn't. He was seeing double. I knew something was not right and the next day, I took him to our GP. They said there were no concerns, but they would write to the hospital requesting some tests which might take a couple of weeks. I felt uncomfortable and made an appointment with an ophthalmologist who we were not registered with, but who kindly agreed to see us later that evening. After some vigorous tests, she said that she would fax the hospital in the hope that they could see us the next day. We were indeed called in that day and booked in for an MRI scan the day after, which was Friday 24th October. Taylan cried before going in, saying that he was scared. We reassured him that nothing was wrong and that the doctors' just wanted to make sure that everything was OK. After all, that's what we were told. Doctors, paediatricians, radiologists and anaesthetists went in and out of the room, avoiding us completely every time they walked out. I asked one of them, "What's going on?" They replied, "The doctor will see you shortly." Taylan came out and we were called to see the doctor, so with Taylan quite happy on the ward, we did so. Still completely oblivious, we sat down with the doctor opposite us. Never in a million years were we prepared for the news that we were about to hear. Taylan had a brain tumour.
The very first question we asked was, "Is he going to be OK?" The doctor just put his head down and said, "I am so sorry." By now, we were extremely confused. Emotions were running high, our hearts were racing and we were having hot and cold sweats. The room just kept spinning. This could not be happening. This is what you hear about or watch on the news - right? Never in my life had I given a brain tumour a second thought, as it had never affected me or my surroundings. I had never thought a brain tumour was the ‘c' word - the one that everyone dreads. This was our child, our beautiful, bright, loving son. Why?
We composed ourselves and ran back to Taylan. I remember seeing his face for the very first time after we were told and nearly collapsing. We were allowed to leave the hospital, as we were referred to see a specialist on the Monday. We walked out of there in absolute shock, not knowing what we were going to do. Taylan asked, "Mummy, what did they say?" I told him, "They found a lump in your head sweetheart, pressing on a nerve that goes to your eye. It shouldn't be there so the doctors are going to try and fix it." He believed me. This was the hardest thing we had to do, as we had never lied to him before and now I was telling him the biggest lie ever.
We went to the John Radcliffe Hospital on the Monday to see the specialist. He had confirmed the results, but also told us the prognosis and that there was no cure. Taylan could have radiotherapy to buy us some time, possibly a few more months. This was not what we wanted to hear. We went for a second opinion at another specialist hospital and were told the same.
From this point on, we only had one goal - to help save Taylan. We searched the internet for causes, cures and treatments and spoke to every specialist from around the world that we became aware of, be they medical professionals or alternative therapists. Tragically, there was absolutely nothing that could be done. This was extremely difficult to accept so we continued searching, day and night.
Immediately after being diagnosed, Taylan was given steroids to reduce some swelling, before starting six weeks of radiotherapy. He had to have a mask specially made for his head, to use during this treatment. He was so strong whilst all this was happening and just dealt with the situation. I was never able to look at this mask and remember feeling extremely angry and disgusted that they had to do this to him. It was the only treatment they could offer to give us a few extra months together, as surgery was not an option due to the location of the tumour. Taylan was on steroids for eight days and then we decided to stop giving them to him, as his radiotherapy had started. The steroids made him someone else - someone unhappy and extremely insular. At this point, I realised that we were all going to be on a terrifying, unfair journey.
Despite all of what was going on, Taylan never complained and went to school full-time, except when his appointments intervened. The steroids had worn off and the radiotherapy had kicked in. It was a two hour round trip for six weeks, five days a week. He used to make us park in the 20 minute waiting bay at the hospital, before running in to radiotherapy and telling the radiologists to, "Hurry up," as he had to get back to the car before we got a ticket. They had just 15 minutes to perform the radiotherapy, get him to open his advent calendar window for the day, and choose a sticker for his sticker chart! He also used to go in with different challenges, one of which was for them to learn the geometry shapes with up to 12 sides. They tried so hard and every day he would test them and their knowledge, but they failed miserably every time. Radiotherapy finally came to an end on 23rd December 2008 and we had a very quiet Christmas at home, just the five of us. We stayed in our pyjamas all day and he was just full of energy, looking forward to his special family holiday in Dubai - a wonderful holiday which will stay with us forever.
When we got back, we decided to try a form of chemotherapy called Temozolomide. It didn't have many side effects, so we thought it was worth a shot as we had nothing else. We also incorporated many alternative therapies and supplements to help him stay strong and build a robust immune system. Once again, Taylan seemed fine and over the next few months, we had some more magical holidays and special days out.
In April 2009, he had an MRI scan and we were told that the tumour had shrunk, which was good news, but that it was still present. Taylan kept asking about the ‘lump', but never knew the severity as we had decided not to tell him. We always lived in hope and felt that we would find the ‘miracle cure'. We dealt with the situation as a ‘glass always half full rather than half empty'. We had to remain strong and were determined to fight for Taylan.
In May, he had squint surgery to correct his eyes, enabling him to see properly again. When he recovered from theatre and opened his eyes for the first time, he blinked and said, "everything is one again, I can see properly." We were so happy for him and just cried with enjoyment. He had the biggest grin on his face and thrived as time went on. He was doing so well, bursting with energy and always happy. Looking at him, you could not tell that anything was wrong.
In late June 2009, we started noticing some very minor changes with Taylan's eyes again. He was booked in for an emergency MRI scan in early July and we were told that whilst the tumour was not classed as ‘progressing', it had changed shape. The doctors were going to monitor him closely but the chemotherapy was not working anymore, so we had to take him off it (assuming it had done anything in the first place). Taylan's regaining of normal vision was extremely short-lived, but we had planned yet another holiday and were told it was fine to go. Whilst away, there were some low days for Taylan when he had slight difficulty walking at times, or found himself repeating himself because we could not understand what he was saying. We also noticed that food was sometimes becoming a bit of a problem, but then the next day he would be fine. These were changes that we noticed and tried to deal with, as he knew he was struggling to eat certain things, walk or balance correctly, but was too proud to say anything. So, we would pick him up and say, "Oh, give me a cuddle, can I carry you like I used to?", or cook soft-textured food. We returned home on 2nd August and things started to take a turn for the worse. Taylan was having real trouble with his speech and balance. His oncologist had seen him, but on 13th August we took him again to another doctor who specialised in paediatric tumours and were told he had three-to-four months to live. All I could say to myself was, "This is not happening, just remain focussed." On the evening of Friday 14th August, Taylan struggled to breathe and was taken into hospital for observation. It was an extremely scary night for all of us, but his breathing improved and we came home after an hour or so.
On the Saturday we went blackberry-picking and had a quiet day at home. On Sunday evening, Taylan said that he was struggling to breathe again. I asked him if he wanted to go to the hospital and he said, "Are they going to make me better?" Both Andy and I replied that they would try, whilst looking at each other and thinking, "What are we going to do?" So we went off to hospital and we stayed overnight, so that Taylan's oncologist could see him in the morning. After some observations and X-rays, it was decided that it would be best to fit a nasogastric tube, to assist with feeding Taylan, as this was now starting to become difficult. Taylan was always extremely proud and the thought of having a tube going through his nose into his stomach was not something he wanted, but there was no other choice. We were told we could go home in a few days, once they had shown us how to feed through the tube and received some help with physio and support for palliative care. This is when it hit me and I knew that he only had a few months left, at best. On Tuesday, Taylan's two brothers came to visit as well as some family and friends. He was not feeling great, but still had his sense of humour. That night, his oxygen levels suddenly dropped and he battled throughout the night with me and Andy beside him. Family also stayed at the hospital until the early hours, coming in at different times and spending a little time with him.
He battled and battled through the night and the nurses were in absolute awe of his strength and determination. All he wanted was for the tube to come out. In the early hours, we decided that it was to be removed, no matter what the nurses said. Both Andy and I spent some extremely special moments with him, which will stay with us forever. Taylan passed away in our arms, closing his eyes for the last time on Wednesday 19th August 2009. The world suddenly came crashing down on us and whilst I write this, I sit here crying uncontrollably, because I remember that moment so clearly.
He had been taken away from us. Our bright star, the light in our lives, had gone. The battle was never his to be won and his loss has left behind so much pain and confusion amongst us, his two younger brothers, family, friends and within our community. He was a very bright, caring, sensitive and loving child, who touched so many lives and will continue to do so. He was an inspiration to us all and took pride in everything he did. We miss him so much and life is not the same anymore without his smiles and cuddles.
A Diffuse Intrinsic Pontine Glioma slowly robs children of their motor functions, resulting in partial paralysis, loss of voice and sometimes sight, before finally resulting in an inability to eat or breathe. They are normally fully aware of their decline, often until their last day. Taylan thankfully had a very normal life up until his very last few days, but it was heart-wrenching and so painful to watch, as we could not do anything. During his final hours, his eyes just looked at us, begging for help. This is the worst feeling possible, because as a parent, you're supposed to look after your children and protect them. We could not do anything except give him comfort, peace and love.
Taylan will remain with us forever and we promise that we will not rest until a cure is found for the illness that took him away from us. Please help us to fund the fight and put an end to brain tumours.
Figen Rawlinson
