Saturday, October 12.
It was a normal day and Matthew was playing. Adam, my husband and his dad, noticed for a split second that Matthew had a haze over his right eye, but after that we couldn’t really see it in different types of light. So, we played a game with Matthew by covering his right eye and asking him what letters, numbers, and colors he could see. He answered that he could see them all. Next, we covered his left eye and panic struck through our son. It was like he couldn’t see. We booked a Boots Opticians appointment right then and there for the following day and continued playing the game. Matthew became distressed, as he could not see out of his right eye!
When we went to the opticians, they asked us why we wanted him seen, as they don’t usually see children under four unless they are referred from a GP or have existing eye conditions. We explained he could not see from his right eye and the haze we had noticed. She spoke to the optician and said to come back in half hour so they can have a good look, so we did. The optician was concerned, thinking it was a cataract from trauma (by this point, three weeks previous, Matthew cut his head open after tripping up in our living room). He asked us to go straight to A&E at Shrewsbury. So, we did.
The on-call eye doctor looked at him and explained that it looks like his retina has detached, the cause of him being unable to see. The reason why this happened is still unknown at this point. She made an urgent referral for him to see the pediatric eye consultant at Telford Hospital for that following Friday. What a long week that was! We just wanted answers and Matthew, at this point, only knew he could not see from one eye. Finally, the appointment came, and they confirmed his left eye was very strong, which is why he had adapted his vision very well. With the eye tests complete, we now just needed to wait for the consultant.
An hour later, we saw two doctors and they broke the most heart-breaking news to us as parents that’s possible – our child could have a tumor. They needed to check if he had retinoblastoma, which is cancer of the eye. We felt broken, scared, physically sick, and wanted to swap places with Matthew immediately. We knew he needed an urgent referral to Birmingham Children’s Hospital so they could put him under general anesthesia to have a good look at his eye. We went home and we cried. We informed all immediate family and cried some more. We sat by our phones waiting for a call that day and there was nothing. We made that weekend super busy so we didn’t have to run ourselves crazy with thoughts.
Monday, October 21.
I called Birmingham Children’s Hospital eye department and they transferred me to the Retinoblastoma team. They made us aware that we needed to go in the next day at noon for Matthew’s procedure and that we would have a diagnosis straight after that. We needed to make sure he had no food after 7:30 a.m. It was one very long day. We were emotionally and physically exhausted from the previous days of sitting and waiting and having that unknown black cloud hanging over us.
The day of surgery, Matthew went into the room as I had to hold him to go to sleep. I cried, Adam cried, it was horrible. That feeling of your child becoming floppy and sleeping in your arms is actually much worse than you think. 45 minutes later, the doctor came to us. ‘It’s very good news’ he said. ‘It is not retinoblastoma’ We cried our eyes out! Happy tears, of course! Our child does NOT have cancer! That dreaded “C-word.” That sickening feeling of worry, anxiety, and heartache had suddenly disappeared! I am forever grateful for those words.
He did say, however, that Mathew does have a condition called Coats’ Disease. We had already done a lot of research on this, gripping onto any tiny hope that he had this rather than cancer. His retina has detached so far that it is actually stuck to his lens. There is no way we can save his eyesight, so he is completely blind in that eye. We have surgery arranged for Tuesday, November 5 to drain the fluid from his eye. They have said it is very unlikely he is going to be able to have laser treatment or any other treatment, due to his retina being stuck to his lens. It is highly unlikely that it is going to detach. We don’t know if draining his eye is going to be a regular thing to avoid pain or whether he will need to have a prosthetic eye at this point.