Ceylian's story

Ceylian was diagnosed with Ewing sarcoma in 2017 when he was just two years old. His mum, Marina, shares their story:

Ceylian boy smiling with thumbs up in hospital

Ceylian was two years old when it all began

In November 2016, Ceylian’s reactions began to slow down – he had difficulties walking and by December it had got much worse. His GP sent him to our local hospital to have an MRI, which showed a 5cm orange size tumour on the back of his head.

Ceylian had to have surgery and his amazing neurosurgeon fought with the hospital to organise the surgery on a bank holiday weekend. We couldn’t wait until next Monday as Ceylian’s condition was getting worse and worse – he couldn’t talk properly or stay still on the hospital bed. We were losing him.

Boy in hospital with christmas hat on

Christmas Eve miracle

Ceylian’s nine hour surgery was scheduled for the next day and was a success. The doctor said Ceylian was a “Christmas Eve miracle”.
However, one week later, we were told that the tumour originated from a cancer on the bone of his forehead. That was the first time we were told that Ceylian had Ewing sarcoma.

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Harsh treatment took its toll

From the beginning of February to the end of September 2017, Ceylian followed a really hard cycle of chemotherapy as Ewing sarcoma is a rare, aggressive and quick spreading cancer. He received proton beam therapy in Florida for three months as well. Ceylian suffered from so many side effects, was in constant pain and every day seemed harder than the day before.

Despite this, we tried to enjoy every day as we never knew what was round the corner or what his next MRI was going to discover.

His treatment finally ended in September 2017.

Family photo

Shocking discovery

We received shocking news in September 2018 when Ceylian’s oncologist contacted us to tell us that the bone on his forehead showed some changes. Ceylian went back into surgery and had an amazing recovery. Our life continued again and we enjoyed every minute of each day.

However, in May 2019, the tumour had returned. It was 2cm and had grown so quickly.
Ceylian was back under his neurosurgeon’s hands and back for a new round of 12 cycles of chemotherapy, which started in July 2019.

Boy in hospital with hickman line and ipad

Where we are now

Ceylian is still receiving chemotherapy and taking it a lot better this time. He has already received more than 120 injections and two blood transfusions, but he is a strong, smiling, funny, amazing boy.  He goes to school as much as possible and his friends are very supportive of him.

He is set to finish treatment and ring the end of treatment bell in March 2020. I couldn’t be more proud of him.

 

Boy with blue crown and two dogs

March 2020 update: ringing the end of treatment bell

Ceylian rang the end of treatment bell on 6th March – it was the most wonderful moment! We all went to the hospital and when it was time to ring the bell, all the nurses and medical staff came to welcome him and clapped for him as he approached the bell.

Ceylian was delighted and rang the bell so much, that the oncologist had to gently stop him. He made a thank you card for the nurses and gave it to them, along with a box of chocolates.

We celebrated at home as well and Ceylian’s school organised an assembly where everyone congratulated him with a massive round of applause.

Little boy holding certificate with family standing next to bell

June 2020 update: Ceylian has relapsed

Just as we thought we had reached the light at end of the tunnel, we were dealt another blow. At the beginning of April, we noticed a bump on Ceylian’s head and an MRI scan revealed that his cancer had returned. I can’t tell you how devastating that was to hear. As I am writing this in June, Ceylian’s latest surgery has gone well. However, we are still waiting for some test results to find out if all of the visible tumour was removed or if he needs further surgery and treatment. We’ve been told that chemotherapy is no longer an option for Ceylian as it’s proved to be ineffective, so we are waiting to see if he can receive a new genome treatment which is more tailored and targeted. It’s especially difficult going through this during these uncertain times, but we are hoping for the best and staying positive.

 

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