End of Treatment EUA - Royal London Hospital

RLH eye examination 

This was the day we'd been looking forward to for months - the final confirmation that the chemo had done its job. Everybody was so positive about how effective the treatment had been. By the time Noah had his fourth chemo and second eua I had pretty much convinced myself we had left the danger zone for enucleation. In the run up to the appointment my mind was filled with images of a picture perfect family christmas for which I would do everything I could to make perfect. Ollie and I went and saw the kids nativity together a couple on days before and it was lovely. It felt so wonderfully normal as we all cooed and teared up at all the children. Later that day Ollie pointed out how much Noah was squinting to see him at the back of the audience. We discussed how his squint had gotten worse recently and how he shuts his bad eye a lot more often to see better, which was unusual as his sight should have either stayed the same or improved as the tumor got smaller.
The next day I had a difficult morning getting Noah to school after an unwelcome blood test from the community nurse. I had to pin him down while he was kicking and screaming while the nurse accessed him. He asked me all sorts of difficult questions like 'is this the last blood test ever? When can I stop going to hospital?' By the time we got to school he was very upset and it was 9.30am. As I scooted him into school he was shuffled onto the end of the line going into the hall for their second nativity showing and I snuck in at the back to see it one more time. Nerves were building about the results of the next day and we'd had a fraught morning so this time round I was in a different state of mind. When I saw him I expected him to still have that angry little expression and signiture pout of his, but there he was happily singing away. All of a sudden I really felt the signifcance of watching him sing his heart out (actions and all) after everything hes been through in the last 6 months. Even after I pinned him down for the dreaded needle that same morning and virtually dragged him into school while he was screaming how much he hated me, he looked for me and he grinned and carried on with his performance even more enthusiastically. He was so pleased to see me; it overwhelmed me with pride and joy and relief but underneath there was the underlying fear of what tomorrow may bring. Suddenly I'm sobbing into my scarf at the back of the room trying not to make eye contact with anyone. It's funny how quickly your mindset and emotions can flip.
The next day was his eua and we were both nervous but nothing prepared us for what we were told. We had a long wait as Noah is 4 he's nearly always last to be seen now. In the meanwhile he had his eye test in which we discovered his sight had actually deteriorated. This was concerning and made us even more anxious to get the results of the eua. The team came in while Noah was still in recovery from his aneasthetic and I knew it wasnt good when the consultant shut the door and pulled up a chair. When they walk into the room you get an immediate sense of what kind of news they have to deliver. They have their most professional faces on and go to phrases at hand. There are no lighthearted murmors as they enter just an air of seriousness. The consultant made a fuss to clear our coats off a chair so he could sit down and talk to us. I thought they were going to say he needed intra-arterial chemo and was mentally prepared for this outcome. However, he said the tumor had grown substantially and there was lots of vitreous seeding which woud be extremely difficult to target. The best option at this point is enucleation. There was a moment where I was still listening to everything he was saying but the shock hit me and nothing really went into my brain as I tried to process. After everything Noah's been through with his treatment I couldn't believe it was all for nothing. They did offer intra-arterial chemotherapy but didn't advise it because of the amount of new seeding. They said if we went for that option he would also have to have injections directly into the eye to target all the seeding. He was worried because there was also bleeding in the eye which meant they couldn't see clearly how much the tumor had grown since he was last examined. What was meant to be a good bit of news before christmas, turned into our worst nightmare. We won't be sure how much the tumor has grown until 2 weeks after the operation. When they remove the eye they'll examine it in their lab and tell us if Noah needs more chemo after enucleation. Noah's surgery is booked in for next Wednesday (27th december). So at least we have Christmas together before it happens.

 We've asked all the relevent questions and taken in all the appropriate information to feel calm and pragmatic about the situation and I know that after its done things will be much better than I can imagine. But despite what I know and what is rational, I've got an anger and heartache raging inside me that won't go away. I know there's no point in it but I can't help it right now. Our amazing little boy has fought so hard and suffered so many consequences from his treatment. I'm not sorry we tried but I can't put him through anymore. I want the evil thing gone. We were told some patients fight for 3 years and still end up loosing the eye. The CNS said after so many years of treatment it can really screw the eye up and make it difficult to fit a convincing prosthetic. We can only take comfort in knowing that once his eye is gone it can't hurt him anymore. The best thing we can do is stay strong for the boys and help them get through this trauma.
My brain is in overdrive thinking about the future -immediate and long term, what it means for him, how we'll tell the kids about his surgery, worrying about complications and aftercare, and questionning and annalysing every decision we'v made in the last 6 months. The list is endless. Right now its sapping all my energy and I either feel numb or hysterical. But I think that's ok right now and probably natural. I will accept it and Noah will cope with it. It's cruel and wicked but Cancer is not simple. I'm trying not to think too far ahead and to worry about one thing at a time. Telling the boys without scaring them or damaging their trust in us is number 1. Then coping with the psychological impact that the surgery might have on them. And waiting for results from the lab to see if Noah needs more chemo.

When we found out Ollie said to me, "It's ruined our Christmas but lets not let it ruin theirs". I'm going to remember that because it's important. Life is only what you make of it and while its ok to feel all these emotions and have all these worries we can still enjoy what we've got and teach the boys to enjoy it too. We can only work with what we'v got and we'll do whatever it takes to make this easier for Noah.