Our beautiful son Sebastian was diagnosed with a rare eye cancer called retinoblastoma at 9 months old.
At 5 months old we noticed Seb had developed a squint where his right eye turned outwards slightly when looking at long distances (the white glow shown in the second photo, more commonly associated with Rb, appeared later for Seb). After a number of referrals and appointments with professionals we found ourselves at the Royal London Hospital, one of only two retinoblastoma units in the country. It was on 26th October 2016 we were told that Seb had bilateral retinoblastoma, eye cancer in both eyes. A large tumour in the right eye and a small tumour in the left eye. And he has and will continue to have a 60 % chance of losing his eye.
Our world seemed to collapse and everything from that moment was a blur. We were told he would need to start a 6 dose course of chemotherapy as soon as he'd had a number of tests and procedures including MRI, lumbar puncture, bone marrow aspirate, central line fitted etc. And so the course of chemo, recover, more chemo began. Over his course of treatment Seb celebrated his first Christmas (which we managed to celebrate at home as a very kind consultant came in Christmas Eve, his day off, especially to dishcarge us in time for Christmas, the most incredible present!) and his first birthday.
Seb responded to the treatment well and we then had 13 blissful weeks where we began to find our new 'normal' with Seb starting nursery and me returning to work. However, on Seb's second check up post chemo (May 2017) they found he had relapsed, new tumours had begun to form on the retina of his right eye. He is now on a 3 dose course of intra arterial chemotherapy in a bid to save his eye.
Throughout this journey Seb has continued to prove time and time again how strong and resilient he is. To look at him you would have no idea what he was/is going through. He truly is our Super Seb. His strength is what has pulled us through as a family, along with the support from our incredible families and friends.
Another huge support has been from The Childhood Eye Cancer Trust (CHECT) that have provided us as a family with support from the day we walked into the hospital and received the diagnosis. The support includes regular face to face chats as they are present on check up days at the hospital to talk things through or answer any questions, to setting up and managing social media groups where we can talk to parents experiencing the same as us, phone calls, organising weekend and day trips to spend time with other families affected by Rb. We would have felt very alone and lost without their support. They also continue to work tirelessly to raise awareness of retinoblastoma to help ensure early diagnosis to help save lives, eyes and sight.
Thanks for taking the time to visit our JustGiving page. Please help Seb's Auntie Alex and I to raise money for this very special cause.
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