Noah's Enucleation 27/12/2017

Noah's surgery was 8 months ago and only now do I feel able to share this. I wanted this blog to have a positive outlook on Noah's journey and be informative for other parents facing similar circumstances. But when I was faced with Noah's enucleation after feeling so hopeful and sure of his triumph, all I felt was despair and anxiety at the implications of Noah's enucleation. I think a part of me is still in mourning of Noah's eye as crazy as that sounds. I don't want to feel like that and feel like it's wrong to be feeling like that, but I know its Okay. After all Noah is Cancer free and that is the most amazing weight lifted but I've felt a ricochet of emotions since that unexpected turn of events shot us down 8 months ago. I'm still coming to terms with it and getting used to caring for Noah's prosthetic eye. Thankfully we've have had a fantastic year so far and Noah has adapted amazingly well so far.

Besides waiting for Noah's first appointment at The Retinoblastoma Service, the few days before and after surgery was the most difficult time I've had to endure since he was first diagnosed. Some of the memories are a bit hazy but the thing that stays with me is the raw emotions I felt and the thought of it makes my stomach knot like it were yesterday. Anyone who has taken their baby for their first jabs and watched their little faces turn in horror of what you have done to them will understand a fraction of the turmoil I felt inside. Trying to tell a 4 year old that actually, all of that disgusting medicine - that made him sick, bedridden, bald, unable to go to school and parties -  and all of the blood tests, needles and drugs pumped through him...ended up being for nothing is very difficult to do.

It was only a few days before Christmas we were told Noah's tumour was too dangerous to keep his eye. Under advice from the RB staff and other parents we let them have their Christmas and didn't tell them until the day before. I would have told them 2 days before ideally but couldn't tell them on Christmas day. We didn't want to give them too much time to build up anxieties or nightmares of what was going to happen. Everyone put on a very good show. I had to go and have a little private cry before Christmas dinner but otherwise it was a genuinely nice Christmas spent with family. I thought it would be a miserable atmosphere but there was genuine love, fun and laughter and the underlying atmosphere of sadness wasn't nearly as heavy as I'd expected. We told the kids ton boxing day about Noah's surgery. We decided Ollie would tell them at the risk of me breaking down. He explained that Noah's naughty eye was still poorly even after all the medicine and the horrible cancer had come back. We didn't want it to hurt Noah anymore so we had to get rid of his eye and give him a new 'special eye'. I think the problem here was that he assumed he would wake up a little sore like normal after his anaesthetic and he would have a new perfectly normal working eye like magic. We did explain that it wouldn't be a seeing eye but the cancer would be gone and couldn't hurt him anymore. I think he was a little confused at what to expect but took it very well.

Surgery Day

On the day of the surgery my family dropped us off at the hospital. I remember not being able to sleep for most of the night before and oversleeping. I woke up half an hour too late to give Noah his breakfast before his fast should have started at 7am. I was so upset at myself and started to cry at how useless I was. I decided to give him his breakfast anyway as it would be likely Noah wouldn't go into theatre until quite late in the afternoon anyway and I couldn't let him go without food for nearly 24hrs.
Jakey stayed with us for a little bit before Noah's operation. The lovely play specialist talked the boys through the surgery again with her special dinosaur teddy (who had his very own special eye). They played on the PlayStation together and Jakey was magnificently supportive, acting well beyond his years emotionally. He was so aware of the severity of the situation and the worry we were trying so desperately to conceal; but did his best to comfort and distract Noah.

Despite the delicacy of the procedure it only took a couple of hours.  The surgery itself involves carefully removing the eye and unattaching the muscles attached to the eye, and fitting an orbital implant. They gave us a choice of a coral or acrylic implant but we didn't feel there was much between them and went with the one that the surgeon preferred which was the coral. I liked that it was a natural material and hoped that it would give good movement in time. The eye muscles are carefully reattached to the implant in the hope there will be some movement with the prosthetic. They then pull some of the excess skin over the front of the implant and stitch it up so it looks pink and fleshy underneath the prosthetic. The prosthetic is like a thick acrylic lens that sits on top of that.

.When I saw Noah coming round with those big bandages around his eye, knowing that his beautiful eye he was born with had been removed and stored somewhere it gave me feelings reminiscent of an awful nightmare you couldn't wake up from. As soon as he came round he was flailing around crying in pain. This made it more heart wrenching. They say it supposedly isn't that painful and I expected him to still be dosed up to the nines on painkillers, and more sleepy than in pain. Looking back it may have been more an extraordinarily strange feeling having this new strange implant where your eye once was, and most certainly not like anything he could have expected. He may have also been comparing it to previous anaesthetics where he woke up with just a little discomfort after they'd been prodding his eye around to look at the tumour. At the time I was furious he was in so much pain and demanded more painkillers as soon as he was allowed. He was given some Oramorph and paracetamol but since chemotherapy he had developed a distaste for oral medicine and was having a gag reflex to any oral painkillers, so it was difficult to get this down him. Luckily he slept for a good few hours following the surgery once he'd settled down, but woke in pain a few times throughout the night. I felt like he was in disbelief at what had happened to him. Noah had lost a part of himself and I can't imagine how he must have been feeling. I can understand if he was scared, angry, and in disbelief but it was difficult to witness him go through that.
The next morning he was able to sit up a little and wanted to play with the Lego set given to him by the play specialist. We took the first bandage off  and he was happily playing in the play room on the ward. I was relieved to see a glimpse of normality and happiness in him.
We had to take off the second bandage before we left to do his antibiotic drops to stop infection. This moment I was a little unprepared for. Other RB parents had shown me photos of their children after enucleation and none of them came close to the bruising and swelling Noah had. So if any RB parents are reading this please be aware that Noah's swelling was for some reason quite severe. Seeing it on your own child is always going to be more hard hitting.

Noah  playing in the playroom the day after surgery

Just before we left the hospital after surgery

3 days post surgery

Post Surgery 

They had put a temporary shell in during theatre. This was to be worn for 6 weeks until the eye had healed. It had a little hole in the middle so the implant could breathe while healing and was important to be in to protect from infection and to make the implant heal in the correct way so there was room for a prosthetic.

1 week post surgery

We went back to my parents for another night where we had stayed for Christmas. If I'm honest I found the next week very difficult. It was a whole new world of unknown and new feelings of helplessness engulfed me. I was a nervous wreck. Noah was refusing his drops so we has to resort to pinning him down and for the first few days the swelling looked more awful than each day before.

When we went home the swelling finally went down a little. It took about 5 days for his eye to start opening but unfortunately as soon as it did open fully the shell fell straight out. We obviously had no idea how to put it back in and didn't expect to be faced with this until much later down the line. The RB Team had told us we wouldn't need to take it out and it wouldn't be until he had his temporary prosthetic fitted 6 weeks later it should come out. After many phone calls and visits to various departments at our local hospital we eventually learnt to put it back in ourselves. Unfortunately for Noah it kept falling out even after the hospital sent us a few different sizes. It was just poor fitting due to the shape as well as size. Not only was the shell not fitting well but they only had brown and blue and his eyes are green. I felt terrible for him because it looked awful. Not like the shiny new 'special eye' we had promised him yet. It wasn't anybody's fault that it kept falling out, just unfortunate. To make matters worse it would fall out at school and lots of children were quite naturally asking lots of questions. Some were a little afraid by it -understandably, but it was upsetting to Noah. Thankfully the RB team came to the rescue and did a visit to the school to explain to the children what had happened to Noah. They brought Dino the special teddy with them and things settled down a little. Children are wonderfully accepting at that age and I think they were genuinely more concerned than anything.

After they removed the eye they had to be sure the cancer wasn't metastatic. So they sent it off to be dissected to make sure the tumour hadn't grown outside the eye. If this had happened Noah would have needed more Chemo and it would have been a case of fighting for his life rather than his eye. In fact they would have done the chemo just to be sure even if it was anywhere near leaving his eye. We went back to Royal London for his first post surgery checkup two weeks later, where they told us Noah didn't need any more  chemo and was cancer free. It was only at this moment did I feel the weight had been lifted. The trauma was all worth it and I felt content that we had done the right thing for the first time. I could begin to accept everything that had happened.

After Noah was given the all clear at his first checkup post surgery

without the prosthetic shell in a couple weeks post surgery

Noah's favourite spot for his new eye

Noah had his temporary prosthetic fitting booked in for 4 weeks later at Moorfields Eye Hospital. This was an exciting thing to look forward to and I have to say they did an amazing job. The Temporary artificial eye was 'off the shelf' and the Dr picked an eye closest to Noah's eye colour as possible, adjusting it to fit him as best as possible. I have to say I was truely amazed at how good it looked and how well Noah coped with the process. We had this temporary eye until June this year, when Noah had his first moulded eye made and hand painted.

I am going to write a separate post about Noah's first temporary prosthetic fitting and his first moulded eye for anybody facing this experience for the first time. It's incredible what they can do and I can't wait to share the amazing process with you all.

Noah's Temporary Prosthetic -fitted at Moorfields Eye Hospital