Jacob the eye removal expert.

The title says it all really. Jacob has become a pro at removing his eye. He's learnt that he can stick his finger in it and it doesn't hurt. Which is officially a nightmare. The best one so far was when we were at Lakeside Shopping Centre and people were looking at him a bit peculiar, and as a lot of people don't notice his eye unless we tell them, I knew he'd done something. So when I looked into the stroller, of course he'd gotten it out. He is so good when he has it taken out now, he just sits there so I just put it back there and then in the middle of the shopping centre. I can do it without Rich having to hold him still which has made me much less worried about him getting it out when Rich isn't home now. 

I'm sure it's the start of what will be some interesting stories to tell when he's older.

We haven't been to a big shopping centre like Lakeside since Jacob has been able to walk and gotten so demanding! He was really good and was quite happy to sit in his stroller. We did let him loose in the Disney store which was quite funny. He went straight for the Jake and the Neverland Pirates toys then became quite attached to a Minnie Mouse hoover. He went absolutely nuts when it was time to put it back and to leave the shop. Full blown tantrum central. We are really trying hard to ignore them because we have noticed that he checks if we are looking at him mid-tantrum. I think he must be getting to that extra clever, button pushing, what can I get away with phase. 

We had dinner in Wimpy just because it was easiest, and Rich is absolutely obsessed with Wimpy. I cannot remember the last time I had one, and I didn't really rate it to be honest. Jacob didn't seem like much of a fan either as most of his dinner ended up on the floor. The waitresses didn't seem to mind though as he gave them his "butter wouldn't melt" face. Definitely getting smart!

Jacob had a lunchdate with my friend Francesca's little boy Roman this week. They spent the day waffling away to each other in baby language while we sat catching up on grown up stuff. (Gossiping and moaning about being tired!)

Wimpy!

We had a wedding to go to on Sunday in Oxford and it's the first time I would ever be leaving Jacob for such a long period of time and being so far away. I have been so nervous about it, so much that I really considered not going. And since he's been able to remove his eye, it's really made me realise that he is a bit different to other children, and it isn't a case of someone just babysitting.  They need to know what to do if he moves or takes out his eye. If it gets lost, what one do they put in. So it does make me really nervous. Jacob spent the afternoon with my mum and stepdad, which he's never done before so I was a bit worried about if he'd behave. But mum said he was really good and she really enjoyed it. Although she was absolutely knackered afterwards. Then Soph had him for dinner and bedtime. She stayed at our house with him until we got home as we thought it would probably be best as he's never stayed away from us so may not have settled. We are going to try him staying out the night but only when we are round the corner. We had a really lovely time at the wedding, and it was really nice to go out just Rich and me as we still haven't really had a night out just us two. We got home at 2am and Jacob was awake at 4! I didn't really drink because I knew I'd be up early with Jacob. I was naughty and brought him into our bed at four, he went back to sleep until six but then it was party time. I've been at total zombie all day today. We had a little play date today with Jonah and Eva. Now Jacob's walking, it's so much funnier to watch them all together. Although, towards the end of the day, Jacob started to hit Jonah and kept laughing when told "no." I have no idea where he has learnt this from, I'm hoping it's a phase and that he doesn't realise that what he is doing isn't very nice. I know he is being very testing at the moment and trying to see what he can get away with, so we are trying to set boundaries. We are trying the distraction technique at the moment and just moving him away from the situation or whatever he may be doing that he shouldn't be. Any tips would be greatly appreciated!

Just us two. It was so strange to spend the whole day without Jacob. I love getting dressed up to go out, but my god, I hate wearing loads of make up! I couldn't wait to get home and scrub my face. A true sign of motherhood I'm told!

September is global Childhood Cancer Awareness Month, it is so important for people to know the signs of childhood cancer. I didn't and if I had, Jacob may not have lost his eye. So if you follow me on Facebook, Twitter or Instagram, you can expect lots of statuses and pictures so please share them if you can! 

A celebration.

So Rich's 30th birthday has arrived. Today has so much meaning to us, not only because it's his birthday, but it's also a year to the day that Jacob was diagnosed with cancer. It's been a very bittersweet day. I knew I'd have trouble dealing with it and last night I just felt this sense of sadness, it was 9pm and I remember so well where we were at 9pm on the 14th of August 2013. A&E in Harlow hospital. After finally giving in and googling the white reflection in Jacobs eye, and the only results coming up were "cancer." It was like the letters were written in size a thousand font and were flashing red. I just knew that's what my baby had. As it was so late, the doctors couldn't really give us any answers, but I knew by their faces and the way they were speaking that something wasn't right. When I asked the nurse if he should be following objects, she just looked at me in this way I'll never forget and nodded. We went home after being told we'd need to come back to the eye clinic in the morning. So after no sleep, we were there at 9am. We saw about 3 ophthalmologists who all said the same sort of thing; that he should be following and that his pupil wasn't very reactive in his right eye. We were then told to wait around for the paediatric ophthalmologist but it could be a while as he didn't have any appointments free and was going on holiday after that day. So we could either come back in two weeks or wait. So we waited. He squeezed us in around lunchtime, and performed an examination on Jacob's eyes. It was awful, I couldn't look but Rich helped hold him still. They clamped his eyes open with these hideous metal clamps and then used lights and other tools to look in his eyes. I just stood back crying, Rich said he still can't forget what it looked like. He said the only way to describe it was like his eyes had popped out of his sockets. The ophthalmologist called in another doctor for a second opinion and they were talking amongst themselves when he said "Yes, retinoblastoma." The room started to spin and I just fell to the floor. My 12 week old baby had cancer. Dr Vempali, the paediatric opthamologist was so wonderful. He was so shocked we knew what he was talking about. I explained that I'd googled it and he said there was no point in going over it all with us as we had a good idea about what it was and he said he wasn't going to sugar coat it for us. Jacob had Retinoblastoma. They don't do a biopsy as it is recognisable by appearance. He referred us straight to The Royal London Hospital and he was good friends with Mr Sagoo, who is one of Jacobs consultants so he faxed over Jacobs referral there and then. They called me within about half an hour to go through everything and gave us our appointment for the following Wednesday. It was six days away. The nurses at RLH were so brilliant at reassuring me that six days is okay, and that I don't need to panic. Obviously I spent the next six days in such a mess. All of our family and friends came over to see us, and see Jacob over the course of the week which was both amazing and awful at the same time. We just wanted to be normal, but all of the visitors reminded us that it wasn't a normal situation. We had to wait at the hospital for the afternoon of Rich's birthday for Jacob to have an ultrasound and MRI scan, this confirmed that there were indeed tumours in both eyes but thankfully his brain was clear. And all we had to do was wait until the following Wednesday. It was an absolutely awful experience, the first time we were to starve him and the first time we would have to watch him be put to sleep. We just sat in our cubicle with the curtain closed. When it was time for Jacob to go down to theatre, we'd agreed I would take him. It was truly one of the most awful things, I wouldn't wish it upon my worst enemy. He was already asleep when they put the gas over his mouth and nose so he didn't struggle, but I wasn't prepared for the dead weight he'd become. It felt like he had died in my arms. I fell to pieces and the nurses had to help me back to Jacobs bed. After the longest hour of our whole lives, he was ready to be collected from recovery. He was very distressed and obviously extremely hungry. We fed him and then just sat waiting for the doctors to come round. We said we would deal with whatever but hoped more than anything that he wouldn't lose an eye or need chemo. We never thought it was that bad. When the doctors and nurses and consultants took us into the parent room, we knew it wasn't good news. He confirmed that Jacob did have Rb, and the only treatment for his right eye would be enucleation. He was going to have his eye removed. I just sobbed into Jacob who was still asleep in my arms. This wasn't happening. Mr Sagoo explained to us that more than anything, this was to preserve his life. The pressure was so high in the eye that if it was left much longer, it would kill him. He then went on to explain that he would need six courses of chemotherapy to "mop up" any cells that may be left behind and to treat the tumours in the left eye. The two things we really didn't want Jacob to have to go through were going to happen. We were booked in for the following week for Jacobs operation. We left quite quickly afterwards. We didn't wait to have anything else explained to us, we just had to get out of there. The nurses said they'd call me the next day to go over some things after we'd had some time to process the day. And that was that. That was a year ago, and what a difference a year makes. We can't quite believe that it has only been a year. It feels like ten.

So today, Rich's 30th birthday, we are determined to pave over the pain of this day last year and celebrate. Not only Rich's birthday, but the fact that we didn't know if Jacob was going to be here today but that he is. And he is still so unbelievably strong and fighting this disease without so much as a whimper. 

We always start birthdays the same in this house, and we made time for our tradition last year too before setting off to the hospital. Whoevers birthday it is gets a lie in, and the other makes the tea, decorates the house and gets all the cards and presents that have been grabbed from the postman and hidden until the day. So this morning it was me. Jacob woke Rich up with a nice dive bomb to the head and Rich had his cup of tea and opened all his cards and presents in bed. We've spent the day at home, just us 3. But as we always do on someone's birthday, everyone came over in the evening for takeaway and birthday cake! After Jacob went to bed, Rich, Aaron, Lou and me all played Monopoly Empire. We are such little nerds. But it's actually really funny to play because everyone except me is so competitive so I just sit back and watch them all argue. 

It was a really lovely evening and compared to the place we were in this time last year, we are feeling so lucky. I hardly even thought about this day last year which is what I wanted for today. Rich had a really good day, and as he didn't want to celebrate at all, I'm glad he did and enjoyed himself. Oh, and we obviously had cake! 

You can't have a birthday without a Colin the Caterpillar cake.