A tough few weeks.

I was no way prepared for how tough the last intra-arterial chemo aftermath was going to be. When we were discharged from hospital on the Wednesday, I thought "Yes! All done, my little beast can get back to normal." But I was wrong. Since the Thursday, so nearly 3 weeks ago, Jacob's vision has quickly deteriorated to almost nothing. We've had so many bumps to the head, I've lost count. The worst being Jacob riding full speed on his scuttlebug into a concrete post outside our house. He's got a lovely, big graze on his forehead as a souvenir for that one. He screamed nursery down when I dropped him off on the Monday after. And he has NEVER cried. Why is it you feel like the worst mother ever when that happens? Anyway, he woke up on the Tuesday even worse so I kept him home for the day. Rich took a days holiday from work to stay home and help me as Jacob needs constant supervision. He still thinks he can run around like usual. His vision was poor after the first cycle, not the second, so I thought this would be a breeze. Nope. It's just heartbreaking to watch him feeling his way around. His depth perception has gone, so he's missing steps and kerbs too. If I could give him my eyes, I would in a flash. I spoke to his nurses at The Royal London Hospital and they've said just to keep and eye on him and it should slowly return to normal but after it wasn't improving, they pulled his appointment forward a week to last Wednesday. I felt sick with nerves the whole time, he was back from theatre quite quickly and wasn't too distressed which is always good. The doctor finally came to see us about 3 hours later, and said that Jacob's optic nerve is extremely swollen and he has alot of blood spots in his eye. They injected him with yellow dye to see how the blood flowed and it was quite restricted in his eye which means there isn't alot of oxygen getting to the muscles, making his vision bad as the eye can't work how it's supposed to. Jacob was an interesting shade when he came back around, and it wasn't until the doctor told us that we realised that was why! So, again we were told we will just have to wait and see what happens with Jacob's eye. The good news is that the tumour has responded "beautifully" to the IAC! Which is amazing. Fingers crossed that'll be the end of the horrible, little thing!

Jacobs consultant decided that Jacob should have a course of steroids to hopefully help speed up recovery on his eye. He is meant to have them for a week after IAC but it was in liquid form and we couldn't get him to take it no matter how much bribing we did. So they prescribed pills which we could crush up and put into anything. So, Jacob's been having 3 fruit shoots a day. Not the best but if it helps his eye recover quickly, I can deal with the rotting teeth after! I have managed to start putting his morning dose into his cereal which is great. We were told he would probably behave a bit wacky and have a crazy appetite with the steroids. Well, wacky doesn't even cover it. He has become a completely different child. He has not stopped crying, wanting to be carried everywhere and only by Rich. If I even touch him, he goes absolutely bananas. I think we've had about two smiles out of him in the last two weeks. It's absolutely breaking my heart to see him this way, and I keep having moments where I just cry. There's nothing we can do to make him feel better. Rich is back to work tomorrow and I am so nervous for the week ahead. I hate that I can't comfort him, and I hate that he doesn't want me to either. All I hope is that he goes back to the happy, cheeky little boy I had before all of this.

Jacob was 3 last Sunday. THREE! I can't believe it. He had an okay day, not like he would have if his vision was 100% but it was still nice. He asked for a roast dinner for dinner, Rich was very pleased! So we had family over and all had dinner and cake together. He got totally spoilt. Him and Alba had a joint party yesterday as she is one on Saturday. (Don't even get me started on that one, I've been an emotional wreck about that too.) Jacob had an okay time, he was glad to see some of his friends and they all played on his new trampoline. He got a bit overwhelmed which I expected, and he was absolutely shattered after and flaked on the sofa.

Today has been really tough again. I feel awful for Rich as he has had to take Jacob absolutely everywhere with him, to get a drink, to the toilet! It's insane. It was so draining for me when Rich wasn't home last week, and he's even worse this week so I dread to think how he feels. We have tried to leave Jacob to cry it out a little bit, but he gets in such a state and then Alba gets really upset. So we are just doing everything we can to try and keep him calm. Another side effect is that his appetite has increased, ALOT. The food that boy is shovelling away is crazy! I had to go to Tesco today to stock up on pretty much everything as he just hasn't stopped eating! I shouldn't complain as getting food into him is such a challenge. He is on these tablets until Friday, and I cannot wait for them to be out of his system and hopefully get back to normal. I miss my happy boy.

One down...

So intra-arterial chemo number one is done. It has been a stressful few days. But we are on the otherside. We left for Great Ormond Street on Tuesday morning, dropped Alba at my Dad's, which was absolutely awful. Her little face when I left killed me. I cried the whole way to the station. We got to the station to find that I didn't leave the house keys for my sister in law... I wanted to cry. I absolutely hate trains anyway and Jacob and Me had to leave then if we were going to make it on time. So Rich left and drove the keys back and planned to meet us at GOSH. The train ride there wasn't too bad and Jacob was really well behaved. The hardest part was carrying our bags. I didn't think Rich would feel too great about carrying my very floral, very girly Cath Kidston overnight bag so I took it with me. Jacob had an echo, which is basically an ultrasound on his heart, an ECG and something called Visual evoked potential (VEP) and electroretinogram (ERG) tests. They all went really well and Jacob sat really good for all of them. We were finished for the day by 3.30pm so after we went to our hotel, which GOSH had arranged for us. I'd really hoped we'd be staying in the hospital or the parents hotel next door but there wasn't room for us and as I'm such a wimp, I'd have felt much better there. The hotel was okay, but all I kept picturing was scenes from "The Shining." Yes, I'm dramatic.

As we had some time to kill, we went to Hamley's toy store and the Disney Store and Jacob absolutely loved it. He came away with a new Spiderman figure too which he was very pleased about.

Rich came home to Alba so left the hotel around 9pm. I'd hoped I would sleep really well as Jacob was in bed with me and I wouldn't have a night feed to do. However, the wacky city of London had other ideas. So many sirens!! I hardly slept at all and when my alarm went off at 6am, I wanted to cry. Jacob and me went back to the hospital and was given a room for the day on a ward. Rich ended up running really late and didn't make it in time to see Jacob before he went down to theatre. Jacob was sobbing and screaming for Rich on our way down to theatre which was awful, but once there he calmed down and went to sleep well. I got really emotional this time round, he's been put to sleep so many times but it's been a long time since it was going to be for an actual procedure. The doctors said he would be asleep for anything upto 3 hours so I went back to the hotel to wait for Rich, then we had some breakfast. Jacob and was gone for two and a half hours in total. He was really upset when he came round but after a drink and a big cuddle we managed to calm him down. He had to lay still for 3 hours afterwards which wasn't as challenging as I thought it would be. And we managed to get him to dose back off to sleep. I snuck in a nap too!

I was so excited to see Alba when we got home, I missed her so so much and everytime I spoke to whoever was looking after her, I could hear her crying. The worst time was when I called my dad, then Jacob did something so I shouted "be careful!" And Alba heard me and absolutely fell to pieces. Totally didn't help with the missing her! 

Jacob has been very emotional since Wednesday, and he woke up crying at 5 this morning and was really sick. I called the hospital just to see if this was normal and they said it's very unlikely to be connected to the chemo. But it seems too much of a coincidence to be a bug!? He's been fine since this morning. Not much of an appetite but definitely more himself.

I feel such relief now the first treatment is done. I know what to expect now. And as always, Jacob absolutely stuns me with how brave he is and how he takes everything in his stride.

Back at it.

Jacob had another check up on Wednesday where we received the news that the stubborn little tumour in his left eye isn't giving up and the retinal detachment isn't getting any better so he will need further treatment. As cryotherapy is no longer an option due to the damage it is causing to his eye, they are going to try either the radioactive plaque, which we knew was an option. Or intra-arterial chemotherapy. That nasty little C word again. There's alot of those isn't there!? There are a few side effects with IAC, not as many as regular chemotherapy but still. IAC is when a catheter is inserted through a vein in the groin and fed up into the affected eye. The vein can collapse or spasm which stops the catheter going in and therefore the procedure will be cancelled and then they try again maybe the following week. It can also cause Jacobs blood pressure to drop very quickly and then they require adrenaline. Which is the scariest part for me and why I am leaning much more towards the plaque. They can also lose their lashes, eyebrow and sometimes some hair at the front and it can cause their eyelid to temporarily droop but again, it is so different for everyone. I had totally prepared myself for the possibility of the plaque so when Jacobs consultant said this, I wasn't overly shocked. It was when the chemo was mentioned again that I panicked. We don't find out until Monday afternoon what they've decided will be the best course of treatment. I have tried not to think about it too much. Plus the babies and me all have a rotten cough and cold so we've been tackling that. Alba has slept through the night the last two nights though and I'm hoping it isn't because she is poorly. Jacob has also stayed in his bed all night too. He normally ends up in with us and he started demanding to lay on the outside of the bed on my pillow which is fabulous. I'll be wishing for sleepless nights again when they grow up and dont want to cuddle me.

A bump in the road...

Jacob had his check up at the Royal London Hospital today. As the title says, it wasn't as positive as we hoped. He was first down to theatre and gone a bit longer than usual so I had a feeling he would be having treatment. He was totally inconsolable when I collected him from recovery and was this way for around half an hour. Normally he's quite settled, has a drink then inhales his ten million different foods. He came back from theatre around 9.30 and didn't eat or drink a thing until nearly 12. Definitely not like him.
Mr Sagoo, Jacob's consultant didn't come to give us the results until about 12.30 which is the longest we've had go wait for a while! And even though I suspected it, when he said the tumour in Jacobs left eye has become active again on one side, I just cried. Except this time Jacob knew I was upset, it's been a year since he had treatment and before that it was so run of the mill that I didn't really get upset as we were so used to it with our two weekly visits! We were absolutely gutted. I knew it would probably happen at some point but it still doesn't make it any easier. Jacob had cryotherapy which freezes the cancer cells, he will probably have 2/3 rounds of this every 3 weeks for the next couple of visits. So we are back to 3 weekly trips as opposed to 3 monthly! His consultant thinks that the cryo should get it back under control but it will probably be quite a while before we have a nice gap between appointments again! Jacobs eye is quite puffy and sore and he was very quiet last night. He woke sobbing around 10pm so he came into our bed. I've become a complete serial co sleeper. Oh well! They're only little for a short time!
We finally got to see one of the families we met while Jacob was going through chemo yesterday. Skylah is a little girl who is just four days younger than Jacob and they were diagnosed around the same time and we got to know each other as they had chemo together. That's a story for when they're older! But we haven't seen each other since before I was pregnant so it was lovely to catch up. She is still having regular treatment but is a total superstar. She reminded me so much of Jacob, the way she just gets on with it. They're back at the hospital in 3 weeks too so am looking forward to seeing them again. Although Jacob clung to me for dear life and didn't want to play, so hopefully he will be a bit more cooperative next time!

We also discovered that Jacob hasn't put any weight on in around 6 months, he isn't worryingly underweight but he should still be putting it on. Alot of it is probably how active he is, and he's never been a meal eater as such, more of a grazer. But the kid certainly eats ALOT. So we've been told to fatten everything up! Cheese, cream in mashed potato, white bread and pasta. More calorific foods. You can't win! He eats so well and has always eaten lots of fruit and veg and he isn't really a fan of naughty dinners such as chicken nuggets and chips so I've got to start trying to fatten him up! Well not fatten, but ensure he is getting enough calories! I'll be putting cheese on everything!!!

 Sleepy boy!

His little post theatre setup with all of his favourte foods.

Jacob is due some eye drops, so I'm off for a battle with him! Thanks for reading! :)

Our first sickness bug!

It's been a busy few weeks, not with anything in particular, just those times when every day seems to fly by! Jacob had a check up at the Royal London Hospital last week, and he was stable again! I'd had a really bad feeling (like always) that he'd need treatment but he's still fighting those nasty cancer cells off! He was so good again after coming round from theatre. He just inhales a whole bottle of water and a punnet of blueberries every time. Then continues to eat everything in sight for about an hour. The nurses find him hilarious as a lot of the children are very grumpy when they come round, understandably of course. But he just sits there eating. We took the iPad with us too so he was well set up for the morning! Although his new favourite is Finding Nemo, and we haven't put that onto the iPad yet! We are still waiting for Jacobs new artificial eye, which seems like its been forever. They finally called yesterday and he is getting it next week! His current one is so small, he keeps turning it round and it has been so weepy where its building up gunk. Lovely I know! I'll post a before and after pic next week. Hopefully he sits well and let's Sylvia take it in and out this time. He was not happy with being messed about with last time.

Jacob has started to say so many new words, in the last month or so his speech really seems to have come along. And he understands pretty much everything you say to him now. Especially the word "sweets." He says "seets?!" I wouldn't mind but I don't let him have chocolate too often and is usually after dinner if he does get anything. Although I've managed to make him think that raisins and these organic real fruit jelly things are sweets, so that's good! He also thinks Soreen malt loaf is cake. He looks like he's won the lottery when he gets real cake. The kid doesn't need sugar to give him energy, he's like a little Duracell bunny! The most impressive new thing he has been saying is "I wanna go in the car" and "I wanna go outside" He knows what car is and says that a lot on its own, but the "I wanna go" part is more of a sound I think. But it is hilarious because the second he opens his eyes in the morning or after a nap, it's all he says.

We've also had to start doing "The Naughty Step". I really like this as I am totally against punishing a child through smacking. And most of Jacobs naughty behaviour involves him smacking or hitting someone he shouldn't. Mostly, its the dog getting a pasting. So I don't see how punishing smacking with the same thing would ever work. Everyone is different obviously but I remember getting a good few sore backsides when I was younger and it never stopped me, it just made me misbehave, then run with my legs about ten feet in front of my body with my bum tucked underneath me as far as I could get it. Jacob however, also thinks the naughty step is fun. The first time he went on it he got up straight away, I didn't put him back, but when he went back to whatever mischief he was doing, then he went back to it. This only happened twice before he lost interest in being a rogue. The next time, after hitting the dog over the head with his Henry Hoover, he sat there for about 30 seconds maybe, I asked "are you going to be nice?" To which he said yes, so I said "come say sorry to Lex, (the dog)" so he came over, gave Lex a cuddle and kiss and I felt like I'd won. Until he slapped me round the face, laughed, and went and sat himself back on the naughty step. I couldn't help but laugh behind a pillow. I think it's going to take some practice.

We went to one of our friends little girls birthday party on Saturday, it was in Eastbourne and we'd planned on spending the whole day there and going to the seaside, but it was so cold that we avoided that! Jacob slept nearly the whole way there which was great as he was full of beans when we arrived. I'd expected him to be really clingy and not go off and run around with the other children. But after about ten minutes, he was off! It was so lovely to see him just toddling around, kicking balloons and having fun. He sometimes stands there just watching everyone and you can see he is just taking it all in. He must have been exhausted from all the running around as he fell asleep as soon as we got into the car to drive home with his hands in his Happy Meal box clinging onto a chicken nugget! We just grabbed him one as it was easy for him to eat in the car and he'd been picking at food all afternoon anyway. He isn't a huge happy meal fan and I've gone off McDonalds since the beginning of my pregnancy, so they are a rarity in our house these days. He fell asleep around six and we managed to get him in, changed and into bed without him waking up and he slept until 7.45 the next day. Not uninterrupted of course, but that was a good stretch for him!

He wasn't quite himself all day Sunday, and the same on Monday. Off his food and very clingy. And cuddly. And I rarely get cuddles from this boy so I knew something was up. And at 5pm on Monday, that "up" was projectile vomit. Now, if you know me, you know I do not cope well with sick. I can't even talk about it without heaving (which I'm currently doing). But apparently, when its your child, you block out that fear. Don't get me wrong, I was still a state and wanted to heave my insides out, but the fear in Jacobs face was so much worse. He honestly looked petrified and didn't have a clue what was happening. I was absolutely covered in a lovely grape and rusk concoction but the quivering little wreck that was hanging on to me for dear life was way more important. I went into germ killer overdrive, Jacob was stripped and washed, the bed was stripped and put on the hottest wash I could get it on, and all dummies and drink cups were sterilised and I had the Dettol out and ready for any more explosions. Except there wasn't any, that night anyways, Jacob didn't want to eat anything and climbed into bed without a bedtime story which is very unlike him. He slept surprisingly well, I laid there awake nearly all night waiting for the next lot. He woke up asking for breakfast so I gave him some porridge which he practically inhaled where he must have been starving, but within ten minutes, it all came back up. Now this time, because Rich took Jacob and was dealing with him, it was just me and the reversed porridge. I didn't do well. That blocking out didn't happen. My eyes were hanging out of my head by the end of it.
This all happened at the worst possible time too as one of my friends was getting married yesterday and Jacob was spending the day with my brother and his girlfriend. I didn't want to leave him but he managed to keep down some plain biscotti and ready salted crisps (that's what he wanted?!) and seemed to perk up, so Rich missed the ceremony and came for the evening as by then Jacob seemed pretty much back to normal. He slept so well last night too which was great because I was exhausted from the no sleep the night before, to spending the whole day in heels, (my toes are like little swollen cocktail sausages today.) He woke up this morning pretty much his usual self and ate 3 bowls of dry cheerios. So fingers crossed the bug has left the building! It was so horrible seeing him so subdued. Quiet, but horrible! It made me really miss the chaos!

On the pregnancy front, I have been nesting like crazy. Everything is organised, rubbish thrown out, garden cleared and all the toys and trampoline all cleaned. I am starting to feel a bit more prepared now. However, at my 28 week midwife appointment, she said that Lady Wright is growing nicely and "isn't a tiddler". She said don't worry she isn't big! But this has still terrified me. So many people have said how big the bump is too! I am definitely carrying a lot higher up this time, so it may just " look" bigger. I hope so!

Oh, the last thing, Rich has caught Jacobs bug. In fact, it's actually wiped out my brother, his girlfriend and half of her family too! Not good. I am so hoping I don't catch it. I am pathetic when I'm sick. We (I) had planned a little trip to Mothercare today but I don't think that will be happening! I think Rich planned it that way... ;)

A few other pics from the last few weeks...

We've been busy!

Again, it's been ages since I posted. Jacob has become a crazed, little tantrum throwing toddler and that with Christmas and new year has just been chaos. The week before Christmas just flew by, and I started writing about 3 blog posts and never got round to finishing them.

Christmas was lovely, it was really nice not to cook this year as I have the last couple. Jacob still didn't really get Christmas and presents, he loved his toys we got him and everything he got from everyone else, but to an eighteen month old, it doesn't have quite the same effect as it does on a four or five year old. I cannot wait until he's up screaming that Santa has been in a few years time. That's when it gets more expensive though I hear, as they know what they want, and its usually everything!
I have to admit, I was quite moody Christmas day. All I wanted to do was eat pâté and brie and drink prosecco. And was fed up that I couldn't. Obviously, I'm glad to be pregnant and so excited, but I also love my food. And pâté is definitely a favourite of mine. Chicken liver to be specific, and that's a no no. So I stuck to plain old cheddar and some Boursin. Which I googled to check I was actually allowed it!!

Jacob had a check up at the Royal London Hospital this week, and I woke up Wednesday morning with a really bad feeling. I said to Rich "I don't think it's going to be good today." Taking Jacob down to theatre was chaos, he screamed the whole way as he must now remember what's going to happen. And then he buried his head in my neck when the doctors were trying to put his mask on so he could go to sleep. He really fought it this time, and I cried for the first time in ages walking back round to his bed. It may well have been pregnancy hormones, but I was so fed up of having to put him through this so regularly. He came back round quite quickly from theatre and unlike last time, he was not happy. He was so hungry, he practically inhaled his banana and started to choke. And by choke, I mean full on silent choking that felt like it lasted forever. Rich managed to give him a good pat on the back while he was tipped over his arm and he coughed it up. I was literally seconds away from screaming into the ward. Which would have terrified everybody. The first aid course we went to while I was pregnant came in handy. I realised how utterly useless I would probably be if I was on my own, and that's a little bit scary! I'm sure mothers instinct would kick in, but I definitely panicked a lot more than I'd have liked.
Mr Sagoo came round not long after and told us Jacob was still stable, which was brilliant as the day had gone so horribly so far, I thought there's no way its good news! We are back in nine weeks, which is the middle of March.

Elsewhere, Jacob has become a crazed One Direction fan. He absolutely loves them. It's become our calm down tool. If he is going nuts, we just switch them on and he's dancing away. I don't mind, as I secretly like them and I think Rich has had no choice but to become a fan either!
Jacob has had four teeth start coming over the last few weeks. And with it, he has become a very fussy eater. I don't know if its tied into the teething for sure as a few of my friends are having the same problem, but he will pick at everything. He hasn't eaten a full meal in about two weeks now. And this morning he was awake at 4.45am hungry! And even then, the only thing he would eat was half a brioche and a banana. After having a brilliant eater, it is really tough when they get fussy! I have tried everything. And he isn't at the "if you don't eat, you go hungry" stage yet so I am literally trying about 4 options every evening with dinner. A few people have told me not to do this as it can make it worse and then they get clever about it. So I think I may have to take a different approach! Any tips?!

A Wonderful Wednesday.

I never thought I would call Wednesdays wonderful. But yesterday was. Jacob is still stable. He's fighting this little tumour and we have never felt so lucky. Last time we were at RLH, Mr Sagoo. One of Jacobs consultants did say that they can slow down and a lot of children will become stable. But we never, ever go thinking that it will still be the case. It just isn't worth the disappointment. Luckily, we've not had the disappointment yet, but that's not to say we won't. Jacob didn't go down to theatre until around 3pm and as usual we went down to the canteen to grab something to eat as we also don't really eat while Jacob can't. Maxine, one of Jacobs nurses knows how much I love the puddings down there so she specifically went back to check for me when she got her lunch. And it was gooseberry and apple crumble, one of the best. So I obviously salivated my way to the canteen, only to be distraught when they had sold out. I was gutted. I had to settle for some awful chicken sandwich on brown bread, and I hate brown bread. But by this point, I was so hungry that I just needed any food.

Jacob was back quite quickly again from theatre, and when I went to collect him from recovery, I couldn't hear him crying. He normally always screams the place down after coming round from the anaesthetic. But he was just laying on his bed, wide awake, waffling away to the nurse. It was so funny. We got back to his bed, and he just sat there stuffing his face, no wobbly throwing, no tears. It was really nice. Normally the hour or so afterwards is a bit chaotic with tears and trying different food and drink. But he just sat eating his yogurts and a whole packet of blueberries. Then made his way through rice cakes, malt loaf and Jaffa cakes, the new favourite. Oh and 3 bottles of water.

It felt like hours until Mr Reddy came round with the results, Jacob was only second on the list, sometimes they will come up in between to give you the results but depending on how busy they are and how many kids they've got in that day, it can sometimes be at the end. And they were busy on Wednesday so it was the end. But it was so worth the wait. Mr Reddy is so to the point, he just said "Jacob is doing fine!" No technical terms, nothing. To which I just said "He's still stable?!" Yep, and that he is to be seen again in 8 weeks. 8 weeks! Its getting longer in between appointments which is amazing, but so scary too! We know what to look out for though so if we were worried at all, the RB team are pretty amazing at getting you fitted in if needed. Luckily, we've never had that yet and fingers crossed it will stay that way!

After getting 8 weeks off, we thought we'd have a nice break from hospitals, but this morning Jacob decided that was not to be the case. He climbed up on to the dining chair while I was out of the room.and before I knew it, he'd come off it backwards and landed on his head. He is always bashing his head and will normally just brush it off and get on with it. But when I picked him up he was doing that holding his breath thing babies do when they're shocked. And he was quite floppy. Not holding his head up. I went into total panic mode, Rich had just left for work so I rang him and got him to come back although I have no idea how he worked out what I said on the phone in between my panic and Jacobs screaming. He's quite tough really so when he didn't stop crying after a few minutes and his head was quite floppy, I knew he needed checking out. So we spent our Friday morning in A & E. Luckily he is fine, but it was so scary. He has never gone drowsy like that and its the only time he's bashed his head when I've really panicked. One of the nurses asked if he had a lazy eye, to which I obviously said that its artificial. Which led to a discussion about Rb and how did we find out. It seems so many more people know about it now than when we found out. But I think its probably where we are just more aware. Its nice that people know what it's about now though, and that hopefully Jacob's story has made at least people we know more aware of the disease.

Feeling very lucky!

Jacobs cough and cold had cleared up quite a lot by Tuesday evening so I didn't feel the need to cancel his appointment. I was so nervous about today, I hardly slept last night. Partly due to nerves and partly due to Jacob coming into our bed at 2am. What have I done?! I really hope its just where he's been poorly. He normally just slips back into his normal routine otherwise I think I'm going to have to get the controlled crying method on the go again! Which I absolutely hate but it always seems to work! We were up at 5.30am this morning so we could leave around six. We always leave Jacob in bed until the last possible second so he doesn't have a chance to wake up and think "where's my milk?!" But as he was in our bed, his beady little eyes opened up the second Rich and me got out of bed! Typical! He was still very dozy so we managed to get ready while he just laid in bed talking to the dog. For the first time, I got all of Jacobs stuff ready the night before. We normally leave it until the morning because I always liked to do it last so I know if I need anything else. And then we always end up being late because I flaff about. So I made all his lunch, got all his clothes and toys and everything ready to go last night. And it was much less stressful this morning.
It was so strange being back at the hospital after six weeks off, it felt like ages but at the same time, only felt like we were last there yesterday. Its weird because you see the same nurses and doctors and staff every time, you get to know them and they get to know you so I was quite looking forward to seeing everyone. Jacob made himself at home straightaway, throwing his ball around and running about like he owned the place. I could tell he was getting hungry because he started to get ever so slightly more grumpy every time he threw his ball and then had to go get it. And then he spotted his lunch bag under the stroller. Total mummy fail. I normally put it straight into the fridge in the ward kitchen but must have just forgotten. He went MENTAL. Absolutely crazed. Just as I was trying to calm him down and explain (pointlessly) why he couldn't eat, the nurses came in and said they were ready for him in theatre. We have never changed him into his gown and ran out of there to theatre quicker!
He was only gone half an hour again which is always a good sign because with treatment, he's normally about an hour. Again, we tried not to get our hopes up. But when the doctors came round and said he was stable again, I just burst into tears. Rich and me had both gone into today thinking he would need treatment so we couldn't believe it when they said he's still stable. We were allowed to go quite quickly after so were out of there by 11 which I think is a record! We are back in six weeks again. So another long break!

He finally got to wear his UGG boots as it was so cold this morning!

I was way too excited about his sticker!

Going home.

Crazy family selfie.

We went to Pets Corner this week with my friend Sarah which is a little petting zoo/farm near where we live. Jacob loves animals and for the first time I let him run around on his own. Although he was just running around not too interested in anything except the ducks and birds. He is so brave, he was just running at the ducks and geese and chickens like they were nothing. I'm terrified of ducks and geese, especially those ones as they're vicious little things! He was going right up to the chicken coop, at one point I thought he was going in! We had our first "I don't want to get back in my stroller" tantrum, the full arched back, kicking legs kind of tantrum. I did win, eventually. I think it was mostly down to him being tired though!

Jacob loves the "That's not my..." book collection, and I think they're brilliant too. They're touch and feel books and there's so many of them! I've become a bit obsessed with buying him them, and Rich said about my obsession to his friends at work, and he came home on Tuesday with a big pile of them that one of his work friends found at a fête over the weekend! My friend Sarah also bought him 3 new ones too, so he has ended up with about 8 new ones this week. It's lucky he doesn't quite "get" presents yet or I may have a spoilt little boy on my hands. Verruca Salt anyone?! 

I think I may have a problem...

One year later...

Today marks a year since Jacob had his eye removed. It was only our second time at The Royal London Hospital but definitely the scariest so far. Because Jacob was having an actual operation, it meant he was last on the morning list so wouldn't be going down to theatre until around 11am. Mr Reddy, the Rb consultant came to see us in the morning and explained what would happen, then they drew a smiley face over Jacobs right eye so they knew which one would be being removed. The smiley face was a bit ironic really because nothing about the day was worth smiling about. I had absolutely dreaded this since the week before when they told us it would be happening, I was convinced that it would be a different baby coming back and I just felt that it was my fault and I hadn't made him right. Like I'd made a faulty baby. I was so scared about how he'd look, which is awful, but I was so worried about what other people would say and the fact that he is too young to defend himself. I just didn't want him to feel any different to any other children as he grew up. When Jacob went down to theatre, after leaving him there, I felt this huge sense of relief come over me, it was so strange, but it was like I'd realised that a huge bit of the cancer would be gone. The nurses told us he would be gone a good hour and a half so we went down to the restaurant, which is where my crumble obsession started. The wait felt like forever, we sat in our room for what felt like hours. When they called for him to be collected from recovery, I was so scared. I just didn't know what to expect. He was really dosed up on morphine so wasn't awake, and they wheeled him round on a recovery bed. He looked so tiny laying on there. The bandage covered his whole right eye. It was huge. They took us to the ward upstairs as we were staying overnight, our first of many overnight stays! Jacob was so out of it all night, my mum popped to see us in the evening and just started crying as soon as she saw him. I don't think anybody was quite prepared for how big this operation really was. And he was so tiny at the time, it was quite scary. I slept in the cot with him all night, which was not comfortable but I didn't want to leave his side. He just held my finger all night and every few hours the nurses would come in and top up his pain relief. Rich wasn't supposed to stay, but the nurses didn't say anything so he camped out on a chair and stayed all night. The next morning Jacob was more with it, and when he woke up properly and looked straight at us, it was priceless. He'd never really looked at us before and looking back through photos from before his op, he was never ever looking at the camera. It was really amazing to finally have him see us properly. The doctors said we probably would have been out of focus before and he could never really fix on anything so I can't imagine how it must have felt for him too. 

We went down for breakfast, which was such a disaster, to begin with one of the chefs gasped at Jacob and his huge bandage and said "Oh what's happened to him!? Is he okay!?" I just looked straight at him and said "he's had his eye removed." He looked really uncomfortable and walked away. The first of many of these situations! Then after we sat down for breakfast, I went to shake up my orange juice, forgetting that I'd already taken the lid off. It was absolutely mortifying. I was covered head to toe in fresh orange juice, WITH BITS! Rich thought it was fantastic. Me, I was wearing a brand new white tshirt, I hadn't bought my shampoo and conditioner with me, let alone a hairbrush and I just wanted to cry. The walk back to our ward from the restaurant wasn't exactly a short one either. To say I got a few funny looks would be an understatement. 

All of my family came to see us that morning and my stepdad and mum was driving us home so everyone thought they'd just come up and wait as we were supposed to be going home at two after Jacob had his dressing removed. Laura and Tara, two of Jacobs nurses came round about midday to remove his dressing. I didn't want to look, I was expecting this big, swollen bruised mess where his eye used to be. But it wasn't too bad at all. The nurses said it actually looked really good compared to how some kids have looked after. Mr Reddy then checked to ensure that it was all as it should be, and then we were allowed home. We got sent home with Jacobs eye kit and a course of antibiotics which were a nightmare to get him to take. It was this bright pink, sticky as hell stuff that had to be kept in the fridge. His eye seemed to heal up quite quickly, it didn't look half as bad as I thought it would, and to be honest, any worries I had about how he'd look were totally wiped out by the fact that he could see. And everytime he looked at us, it was just so amazing that nothing else mattered. Now, the beady eyed little monster doesn't miss a thing!  

Jacob and his ironic smiley face. And the bear my mum had made for him for his operation, it's made of some of his first sleepsuits!

Back from the op, he is so tiny here.

A priceless moment.

Just after the dressing was removed. 

We are still struggling with sleep at the moment, we've managed to drop Jacobs second nap and put him to bed at 7pm but the last few mornings he's been waking again between 4 and 5 and not settling off unless he's in our bed. I'm really hoping it's just a phase and this nap transition is behind it. He has his ony nap from around 11-11.30 until around 1pm, then has lunch. But I'm hoping to push the nap back to more like 12.30pm so he can have lunch then go for a sleep, and that's more in the middle of his day too. I've read that if they're going through a developmental growth spurt, it can disrupt their sleep patterns. I'm not sure how true it is but this week Jacob has learnt how to build his stacking cups. We help a tiny bit, but he manages to put them all on and mostly in the right order! I was so pleased with this, because I was a little bit worried about how his hand eye coordination will develop with just the one eye, but I don't think there's any problem at all. Well I hope not! 

Smartie pants.

Check out the bed head!

We braved the rain again on Tuesday morning and went for a walk in the woods by our house. I didn't take Jacobs stroller and just let him walk, he picks up EVERYTHING! He has a particular obsession with pine cones. He was covered in mud by the time we got home so everything had to go in the wash. I don't mind a bit of dirt to be honest, as long as it can be washed, get muddy. We went again yesterday too, but to feed the ducks this time. He just loves being outside. On Monday when it absolutely chucked it down all day, he stood at the back door crying because he couldn't go outside. I think we are going to need to find a new hobby before the winter hits! 

My little adventurer...

Collecting whatever he can find.

Buds. 

The gruesome twosome on our way home from feeding the ducks.