This is a photo of her first visit into York city centre, when the chemo had worked its way out of her system, by September. She LOVED it. She was yelping with excitement just to be among crowds, when this picture was taken.
We’ve never taken anything for granted, but when something as simple as being able to visit the centre of your own town as a family is an exciting treat, it certainly makes you think.
7 long months of chemotherapy, in which all you can do is put your head down and plough onwards, taking the only path open to you. No time for reflection really. You don’t assess much. You just keep going. It’s like being in a snow-storm – you can’t see more than a few feet in front of you, and there’s no point in looking back. You just keep walking until, if all goes well, you come out the other side.
How’s she doing, people ask. She’s doing well, but it doesn’t mean she’ll continue to do so, we’d answer. We hope so, but we don’t know. The Oncologists and surgeons always qualify any good news with ‘but there’s a long way to go and these things don’t conform to strict patterns’.
I don’t know if you’ve ever been in a big room with motion-sensitive lighting – like the stacks of a library, for example. As you move forwards, the shelves immediately in front of you are lit up. And even if you’ve successfully negotiated your way through a whole bunch of shelves, and nothing has tripped you up, you STILL can’t see that far ahead, and success so far has no bearing on whether the floor is clear in the parts you can’t yet see. That’s what it’s like. So far, the way has been clear. But we still don’t know what awaits us in the as-yet dark parts of the stacks.
At the time of writing, things are good. Fantastic, really. Chemo is done and dusted and she didn’t need a second course – she responded well to it, and the tumours shrank, making them easier to laser. She’s no longer vulnerable to infection – if she gets a temperature we can give her Calpol! Instead of driving her to Leeds for 4 days! Amazing… This means our lives are fairly straight-forward compared to 6 months ago. We’re approaching normality. The tumours in the good eye are all dead. The tumour in the bad eye is dying. For the last 3 months we’ve been to Birmingham, she hasn’t needed lasering, and no new tumours have developed. We’re told if it continues to go like this, with no treatment needed, for another 18 months, we might even be able to cautiously say ‘she doesn’t have cancer anymore’. But anything can happen in those 18 months.
It never really goes away, the risk. No one over 5 years old gets Retinoblastoma back, but Grace was born with this cancer due to a genetic defect – she’ll always be at much higher risk than most, to many other types of cancer. (No sun-bathing for you I’m afraid, my beautiful little girl.) She'll have a 50/50 chance of passing it on to each of her own children if she has them, but she could chose to go through IVF so that they'll be able to screen her eggs and choose the ones which don't carry the broken genes.
But she’s still here, and she’s so, so happy now. About 4 months after her final chemo it was fully out of her system and her real personality began to emerge. She’s not so much of a quiet observer now. She’s a riot. Loud, smiley, laughy, talkey (in her own made up language). Defiant. She has to wear a patch over her good eye for an hour a day, to make sure the bad eye doesn’t switch off entirely. She has peripheral vision in it, and that will come in handy later, so we need to keep them both working. She hates patch-time. Sometimes she tries to take the patch off and I shout ‘NO!’ at her, and she stares back at me. Completely expressionless. No longer trying to remove the patch, but wanting me to know she’s unwilling to back down. Do you have any idea what I’ve been through, she seems to be saying? You’re just a cross Dad, that’s nothing to me now… I’ve had CHEMO. This conflict is easy.
She’s already handful, and that makes me proud.
Our older daughter Emily is challenging in all sorts of ways (!) but dealt with this brilliantly, despite our having to frequently drop everything and go into hospital while she stays with Grandparents. She hasn't been jealous of all the attention G (neccessarily) receives, and she's coped with the fact that any semblance of a routine went out of the window for the best part of the year. She's been awesome.
We have been spectacularly well set up to deal with all of this. Our families are incredibly supportive and live close by. Alice took an unpaid career break which we could afford. My work have been amazing and allowed me as much time as I’ve needed – which has been a lot, just for purely logistical reasons with so many hospital visits and having an older child to care for too - and my amazing colleagues have covered for me and kept everything working. Our friends have been so helpful. (If you know someone who is very ill or whose child is ill, offer them practical things – picking up their children from nursery, or cooking for them. It makes such a difference.) Alice’s colleagues bought us a dishwasher and a tumble-dryer! I can honestly say that without the dishwasher, 2014 probably wouldn’t have been possible… The NHS have been fantastic. We’ve been well looked after.
I find conversations difficult at the best of times, but this is a particularly tricky subject. People are sometimes embarassed and unsure how to respond when the answer to their question is 'she has cancer' so you try not to mention it. But then sometimes you can see the conversation heading towards it with a sense of inevitability, because they're going to ask whether we'd like to come over to their house ("we can't, Grace can't go in houses, she's having chemotherapy") or why she's wearing a patch ("she's got cancer in both her eyes but less in the one with the patch on"). So maybe you should mention it early so the way in which you skirted round it before doesn't become immediately and awkwardly obvious in retrospect, when you finally do mention it? The knowledge of the cancer weighs heavily, like an unexploded bomb gradually slipping out of your hand, above to drop into the conversation at some point, changing it completely.
Social media has helped me with all this: the asynchronous nature of the conversation, and not needing to worry so much about the awkwardness, has given me an outlet when things have got a bit too much – and my network on Twitter has been incredibly helpful and supportive, listening, responding, encouraging. So thank you, everyone who has helped.