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.

It's been a while...

I've started writing about 20 blog posts and never get round to finishing them. So thought I'd better give it another go. New year and all!!

Soooo much has happened since I last wrote. The weather has gone from beautiful heat to bloody freezing! Alba is now an official crawling, jabbering, food throwing little person. Jacob is in nursery for 3 afternoons a week and has developed the attitude of a highly emotional teenager. And I've cut all of my hair off as loads of it fell out anyway. Oh post partum hair loss I love you. Oh, and I turned 30, but no need to talk about that.

Alba is now 7 and a half months old. She started crawling at the beginning of December and has been unstoppable since! I started weaning her quite early as her reflux was awful even with dairy free milk and medicines. It did reduce the amount of sick she was decorating the house and her clothes with so that was great. I changed her back to Aptamil follow on milk around a month ago as she was switched to the second stage dairy free milk and was projectile vomiting whole bottles so something in it didn't agree with her. I am absolutely loving weaning with her. I am a bit more carefree about what she eats compared to how I was with Jacob. Mostly because its sometimes easier for her and Jacob to have the same thing. So she has had nuggets and alphabites waaaaay before Jacob did! Oh and a few chocolate buttons here and there. *insert hands over eyes emoji here* She absolutely loves avocado and cheese which is great. Although I have noticed she's a bit of a lazy eater. I will offer her something and she will just hold her mouth open for me to hold it while she chews as opposed to holding it herself. She has her two bottom teeth already too.

Jacob started nursery in October and he loves it! I really thought I was going to have so much trouble with him going and settling in well. But his nursery are fantastic and he did about 4 weeks worth of settling in sessions which slowly increased in length until he started properly. He does 1-5 three afternoons a week. He is absolutely shattered by the time he gets home but that doesn't stop him waking up at crazy o clock and climbing into our bed! Both babies sleeping is very up and down but that's probably a whole other blog post. Ha. Jacobs speech has come along so much and you can have full conversations with him and there is very rarely something he says that I don't understand. AND...he is wearing PANTS!!! Only in the day and we are still having a fair few accidents but we are certainly getting there. He refused to use the potty at home but did at nursery to which I was obviously like "well we are doing this at home!!" It took a while but one day it just clicked. I did slow down over Christmas as it was obviously very chaotic but when the new year started he asked to wear pants and that was that. He's so tiny though, I had a nightmare finding some to fit him, but luckily Asda start their pants at 12-18 months which fit my little string bean fine.

Christmas was amazing, we stayed at home just us four, which was very calm but with Alba on the move too, I wanted to stay quite chilled out and not have to worry about chasing her around too much or her being trampled by the family. Haha. The kids got absolutely spoiled and I am still trying to find homes for the piles of toys. Very stressful when I hate clutter and mess.  

Two days before Christmas, Jacob had a check up at The Royal London Hospital, and unfortunately his tumour had relapsed again which was absolutely gutting. He had more cryotherapy and a nice sore eye in time for Christmas. He didn't let it hold him back though. He still had an amazing time and was so excited when he woke Christmas morning and "Father Pissmass" had been! We were back at RLH two weeks later and the tumour had responded well so no more treatment was required but the previous treatment had made his retina detach slightly so we are back on Wednesday to check that it's reattached and to hope the tumour has stayed stable. If not, he will be having a radioactive plaque as his next line of treatment as all of the cryotherapy has started damaging his eye and its too risky to carry on as he only has the one. I'll write more about that if it happens. But obviously fingers crossed it doesn't.

I could write and write with everything we've been upto the last six months but I'll be here forever. I plan on writing a bit more regularly again now. Plus Rich keeps shouting at me too as well. So keep popping back!

Here's a few pictures of what we've been upto recently... Although if you follow me on Instagram, you've probably already seen them!

So I thought I'd do this which actually shows how much of a crap blogger I am...the left is August, when I last wrote a blog and the right is now. Growing up so fast!

I say let's not talk about turning 30, but I actually had the most amazing birthday weekend and was thoroughly spoilt.

A few from Christmas: 

Jacob was given tickets for Disney on Ice at the O2. It was absolutely amazing! 

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! :)

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...

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. 

A Good Day!

Today we had Jacobs usual two weekly check up at the Royal London Hospital. We were switched to the afternoon list yesterday which was a bit last minute, and I always dread it more as Jacob is awake and nil by mouth for a lot longer than if he was on the morning list. He can't eat after 7.30am on the day when he's on the afternoon list, so when he point blank refused his breakfast this morning, I knew it was going to be a tough one. They always seem to run later in the afternoons, which means Jacob goes nearly 24hours without eating if he refuses his breakfast. Luckily, he went down to theatre around 2.35 today which was much better than usual. We've waited til nearly 5pm before. He went absolutely crazy this time while being put to sleep, 3 nurses had to help hold him down because he somehow gets the strength of an angry Dr Bruce Banner when he spies the gas mask. I thought we'd turned a corner at the last check up as he wasn't too bad, but nope. His little face just staring at me as if to say "Mummy, why are you doing this to me again?" Is absolutely heartbreaking. But as always, I just think "it's got to be done." While he's down in theatre we always go to the restaurant to kill time. And for me to eat whatever hot pudding they have with custard. It's like what you used to have at school! Absolutely delicious. The only perk of a normally stressful day and being a little food piggy, I actually look forward to it. And today, someone must have been doing some voodoo on me because they sold out. And it was apricot crumble. ANY kind of crumble is my favourite. I very nearly cried in the middle of the hospital restaurant. I settled with a disgusting chicken salad sandwich and a snickers. But by the time we got back to the ward, they were ready for me to collect Jacob from recovery so my food hardly got touched anyways! He'd only been gone 30 minutes which made me think that he hadn't had any treatment. He's normally gone around an hour. I daren't say anything to Rich though as I didn't want to jinx it. But I was right! Jacob didn't need any treatment and his tumour was stable. This hasn't happened since he was having chemo. I honestly feel like I've won the lottery. We've got a four week gap until we are there again, we've not had this for so long that I think I'm going to feel a bit lost in two weeks when we would normally be going. I'm not going to carry on like this is it and it is coming to an end because I am sure Jacob will need more treatment in the future. But for now I'm just enjoying today's news and a bigger break between appointments! We literally do take each appointment as it comes as we know it can be so different every time. But today was a good one!

Setup for the day, Frozen on the tablet and books in hand...

The only bottle he still has, post EUA. 

Inhaling his blueberries after he finally wakes up...

On a different note, Jacob has started to take steps! I was quite worried about this as I thought this may be where he fell behind in his development. We were told that he may have developmental delays due to the chemo, but he crawled at 7 months which I've heard is quite early and he's brilliant at climbing and playing with toys and he says quite a few words. So the only thing really left was walking. He's so unsteady still and to be honest I think a bit lazy too! Because he can crawl and has crawled for so long, he knows he can get around that way so just does that. But he is getting funnier and becoming his own little person more each day. Since our road trip last week, he's become obsessed with Frozen. He will sit there for the whole hour and a half staring at the screen. And then if I put it on again, he does it again. I'm going to have to start a "tv time" rule. 

Here comes trouble...

"Do you wanna build a snowman?"

Oh, and incase you were wondering, we are still teething at an alarming rate. I should have shares in Teetha granules and Calpol... 

Another Wednesday, another hospital appointment.

We had another appointment at the Royal London hospital on Wednesday. It's always stressful as Jacob has to be put to sleep everytime which means he needs to be starved from the night before. This is the first time he wouldn't be having a nighttime feed as we finally managed to get him to drop it and sleep through the night! (WOOHOO!)

I was absolutely dreading this one, but it went so well. He was second down to theatre this time so he went down at what would have been his breakfast time had it been a normal day. This was around the 15th general anaesthetic he's had now. And although it's still truly hideous everytime I have to pin him so they can put the gas mask on him and then lay him down and give him a kiss before they wheel him off for an hour, it does slowly get easier. By no means do I mean it's easy to leave him, I still cry everytime, but it's just becoming such a regular part of ours and his life, that it's routine now. He has started to get smart and know the walk round to theatre, so starts climbing me like a crazed little chimp. But he went to sleep quite easily this time. Collecting him from recovery is always the same, panic and worry and waiting to hear how the tumours are responding in his left eye. I walked in on Wednesday and all four of the recovery nurses just looked at me with this terrifying look. To which I started to absolutely freak out and demand  to know what had happened. But it just turns out it was a trick they seemed to want to play on me. Everything was fine and my little man was still sleeping soundly. With all his monitors beeping away around him. 

He had had more laser treatment to his left eye, but this is also a regular thing now and Mr Sagoo is pleased with its progress. We were out of there by 12pm which is a rarity these days! Jacob just takes it all in his stride, which is so amazing to see, because I am always a wreck. Watching your one year old son go through this every other week is soul destroying. I don't think about it. I just go into auto pilot. You have to do it. It's not your life, it's his. And I am so grateful that he doesn't know what or why this is happening to him. He is truly my little hero. 

Just waiting to go down to theatre, all kitted out in his gown. 

Rocking his sunglasses on the way home. Got to protect that little precious eye from the bright lights! Dilating drops suck!