And the award for worst blogger ever goes to...

Me! So, two kids that don't stop moving from the second they wake up in the morning, (usually 6am, 5am lately.) until the second they go to bed at night, makes it very difficult to sit and write these blogs. And I'm not even exaggerating. They're both like little Duracell bunnies that get high on oxygen. It is EXHAUSTING. And to make it even more fun, if Alba even so much as blinks at Jacob, he totally loses his shit. I thought "Ah, 2 year age gap, they'll be the best of friends, they'll play together so lovely." Nope. I am an idiot. So, the blog gets neglected. Don't worry, it's not the only thing I've forgotten about. My hair, my eyebrows, I can't remember when I last cleaned my bathroom with something other than baby wipes. The dog probably hasn't had an affectionate cuddle or human contact that wasn't being shoved out of the way/tripped over/being rode by a small human for months. I'm not even sure Rich still lives here. I forget to speak to him lately too. Okay, that last one was a joke. He lives here, I just don't talk to him.

Anyways, besides all that, yesterday was 3 years since D-day. Or diagnosis day. Or the start of Jacobs fight. Whatever you prefer. It was also Rich's birthday, but I also forgot about that. Not really. He got a Colin the Caterpillar cake of course. This year is the first year it hasn't gotten me down. I thought about it of course and still remember it like it was yesterday. But  I didn't sit moping about it. I normally feel really anxious leading up to it, apparently it's quite normal. But it was lot less this time. Just seeing Jacob now, a crazy three year old is so different to what I thought he'd be like now. I really wish the me then could have come and met the me now. But then it wouldn't have been so much of a journey would it?! 

Jacobs had two check ups since the last blog. His vision is slowly improving. The IAC has left behind alot of damage and they've seen slight improvement each time. His retina has finally reattached but we are just playing the waiting game on the vision. He can see around two metres in front now which has dramatically improved from the 20 centimetres he could see 2 months ago. He does brilliantly at home and is slowly starting to be able to point things out in books again. He still doesn't manage depth or change in surface well. So steps, kerbs, shadows. He stops and panics alot. Steps, he tries to sit down and shimmy down them. He did this on the underground last week and I absolutely went into meltdown over the germs. He has to be carried alot in new or unfamiliar places too. It could improve, it could not. He's still not fussed over his iPad, and he only likes things on TV that he has seen a hundred times before. Which is Peppa Pig at the moment. I hate the spoilt little brat. I wish one of her little mates would give her a slap.
The good news is that Jacobs tumour is stable still. As tough as the vision thing is, if it means he is finally free of this nasty little disease, then it's worth it.

Jacob starts preschool in September, he will be going four mornings a week. He's moving up from the toddler room! I'm so excited as it will be great routine for him and I know he will love it. He's going to have a key worker all to himself which is brilliant, so I know he will be well looked after. They normally have around 8 children to one adult, but his nursery have got some additional funding for Jacob so he has the best care possible there. I was really upset at the thought of him having "extra help" at first, but at the end of the day, if it alleviates pressure on the nursery and makes Jacob more comfortable then that's fine with me. I wouldn't want him to go anywhere else and I love the girls there and know they'd come to me if they had any questions or there were any problems. I'm also looking forward to spending some time with Alba, just the girls! Jacob isn't really into baby groups anymore and all the ones Jacob was going to at Alba's age, he isn't interested in, so she kind of misses out. So I will definitely be taking her to a few groups. Although I'm sure she will just cling onto me for dear life when approached by a stranger!

We've had some glorious weather here too! Here's a few pics from recently, we've had a few little adventures to the seaside and the Natural History Museum too! Oh and to see Queenie! 

Last day at nursery! 

Hope you've enjoyed this little update. I'd say I'll try and keep these coming regularly, but I can't promise anything. Maybe my kids will start enjoying quiet, still activities soon...

Slowly getting better...

It's been two weeks since I last wrote, shortest gap in a while! Haha. Jacob finished his steroids a few days after my last post, and he was so unhappy for a fair few days afterwards. Luckily, it was half term so he didn't have to go to nursery, but I wouldn't have sent him in anyways to be honest. I managed to start putting his steroids into his porridge in the mornings which was great. And his appetite was still crazy for a fair few days afterwards. I really wanted to get him weighed but just never got round to it. And then last week he got a sickness bug so probably lost everything he'd gained anyway! The last three or four days, I can say he is finally back to himself. I didn't think it would ever come, the tears and screaming was so draining. I was wishing the days away. He's still a bit up and down with some people, if Rich picks him up from nursery, he's quite funny with me for a little while when he gets home. And he's still being mean to my sister but I think he secretly knows how much it's winding her up. Haha.

So, Alba turned one on the 4th! We bought her a wooden play kitchen for her birthday, it was obviously for Jacob too but we had no idea what to get her so went with that. And oh my goodness, I love it. Screw the kids, I've played with it more than anyone! I sit there arranging the fridge and counters, putting the casserole dish in the oven. The fun is endless! Evidently, I need to get a hobby. Its so cute though, and was only £65 from Asda. The wooden one I originally wanted was nearly £200 and I just couldn't justify it. Plus, I wouldn't have even let the kids touch it! Jacob was really good on Alba's birthday, I though he'd want to tear all of her presents open himself but he was so sweet, giving them to her and helping her open the kitchen. (Which I wrapped after spending 4 hours building the thing!) We spent the day at home and had everyone over for dinner in the evening. 

We all went swimming on Sunday for the first time, I've taken Jacob before and we went on holiday of course, but all four of us went for the first time and it was really good fun. I've decided I'm going to try to take Jacob every Sunday. He's so confident in the water which is great, and I want him to learn how to swim soon! I was quite alot older when I learnt and always said my kids would learn while they were young. I don't think actual lessons would be very good for him at the moment, especially while he has poor vision. So for now, we will take him and try to teach him the basics then look into it more when we know what's going on with his sight. He seems to be slowly improving. Or we are just getting used to it. Somedays he seems so much better, and others worse. It's so hard to tell. 

We are back at The Royal London next week to see if the swelling has gone down. I don't know what to think and to be honest am trying not to either as it is so easy to drive yourself crazy.

Look at this pudding. I couldn't get any photos of Jacob as he was like The Flash, running around like a loon.

We are finally back to calm nursery drop offs too, which is so nice. He hasn't cried this week and even went strolling in himself yesterday which was great. I requested that the Visual Impairment Teacher stopped going in to see him for the time being. It upset him so much and made him not want to go to nursery which has never been a problem. And while he is the way he is, I'd rather he felt calm and secure. And the nursery staff are just amazing with him. I know if there were any concerns, they wouldn't hesitate to tell me.

This sunshine does wonders for your kids mood too doesn't it!? Jacob just spends all day outside. Parenting is so much easier in the summer!! Although, Alba has started to climb and the girl is sending my anxiety through the roof!!! Jacob thinks it's brilliant. "Mummy look at Alba!!! She's such a brave girl!!!" No, Jacob, she's crazy!

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.

Round two.

Intra-arterial chemo number two is done. After being delayed by three weeks, Jacob finally had it this Wednesday. He had a throat infection three weeks ago which delayed his EUA by a week, then there wasn't a slot on the next week at GOSH, so it was pushed to this week. Lots of messing around and chopping and changing Rich's days off etc. But we got there in the end. Not without some drama along the way... Jacob got a nasty fever at the beginning of last week and it didn't want to come down, so we were admitted to our local hospital. They wanted to make sure he was well for Wednesday so started IV antibiotics as a precaution. We ended up staying for three nights, then Jacob was sent home with his cannulla still in and we had to go back for IV antibiotics for the next two mornings. The worst thing now is that Jacob is so traumatised from a blood test he had done at our local hospital that was not done how he is used to, and by an extremely "not child friendly" doctor, he becomes a screaming, squirming mess. We haven't seen the same doctor since but I was so rude to her that I think she would probably avoid me anyway. Don't get me wrong, we are extremely lucky to have the NHS, but when you have been going through this with your kid for nearly three years, you know what's going to work for him and what isn't. And pinning him down and telling a poor student nurse to squeeze his hand until it turns purple isn't going to work. It was awful. And when Jacob screams "please mummy, no bloods! Please!" like he is being tortured, well, you are going to have a few things to say. Other than the needles, Jacob was brilliant and actually thought he was on a bit of a holiday. All he wanted to do was go down to the hospital restaurant! The doctors couldn't actually find a cause for his fever as all of his bloods came back clear but at least he was well for his hospital appointment.

                  

They have a sensory room at our local hospital which is fab and it kept Alba happy for ages!

At Jacob's EUA two weeks ago, we got the news that the tumour has responded really well to the first round of treatment which is amazing! And after the first lot, we knew what to expect so went in Wednesday morning feeling a bit more prepared. With the intra-arterial chemotherapy, the children can sometimes has a reaction to the drug on the second course of treatment, the doctors do not know why or why it is the second one when it usually happens but their blood pressure can drop very quickly and they need adrenaline. It happens to around 40% of children. And of course Jacob was in that 40%. It is so so scary when you think of what could actually happen, but the doctors are so prepared for it now that they can see the signs before the blood pressure starts to drop and react quickly. He was so spaced out when he came round, no tears, no screaming, just very drowsy. It absolutely breaks my heart to see him like it, mainly because he just looks so cute and relaxed, and also because it shows what he's been through. How exhausting it must be for him. How rubbish he must feel when he wakes from his "special sleeps." After his 4 hour bedrest, we made our way home. Which again, was rush hour on the tube. We had to wait 45 minutes for a train that we could even fit on. Commuters are animals! I got trampled on and shoved so much. It honestly baffles me how people do it every single day. I don't think there is enough money in the world to make me do that everyday.

Jacob was sick again today, which confirms that the last time definatly wasn't a coincidence. It's so unusual apparently but I will definatly be giving his nurses a call on Monday.

Jacob finally got his new eye from Moorfields last week too. And oh my goodness, it is amazing. I am so impressed with them. I actually cried when it was put in. It looks so real!!! 

Not the best photo, but getting a toddler to pose for a picture isn't the easiest of tasks!

Since I last wrote, I've also gone back to work at Topshop! I'm only working four hours on a Saturday morning, but it's a lovely little break for me and I get my staff discount again which I can't complain about! I absolutely loved my job as Visual Merchandiser before I left to have Jacob and would absolutely love to return to it one day.

Oh, one more thing, Alba has started to take steps! My life is about to get alot more stressful, like I need that!!!

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.

Day 1.

Today was our first appointment at Great Ormond Street Hospital for Jacob's new treatment. My brother-in-law drove us today as we thought it was a quick consultation appointment, then he would wait and bring us home. That way we could also take Alba with us, meaning she had one less day of being looked after by someone. But, a quick appointment it was not! I didn't realise Jacob would be having bloods taken today so after his appointment being an hour late, we had to wait around for the numbing cream to take effect and then have his bloods taken. Over 3 hours in total. Add the two hours driving there and two hours home, well it was a very long day. Both kids did really well and it was quite a low stress day. I just felt awful for my poor brother-in-law waiting for us for all that time!

Rich said he felt alot more relaxed than he thought he would today, because we know the nurses on the ward and we know the hospital well. And I kind of see what he means, but I'm still so nervous about the procedure and keeping my little "twonado" still for four hours afterwards. I am armed with the iPad and Peppa Pig! I bought some colouring books and new pens to help keep Jacob occupied over the next couple of days, and I'll take some of his books and toys. And hope for the best!

I've climbed into bed early tonight as we have lots to do in the morning. We dont need to leave until around 11am so have plenty of time as the babies are normally up by 7am. I should do some of it tonight but all I can think about is sleep!

Lost.

I'm feeling quite lost again these last few days. Definitely like it's the beginning again. Even my mum said it feels like it. It must be the unknown. We haven't done this treatment before. We don't know what happens, what could happen, if he will lose his lashes or his eyebrows, or if it will even work. Jacobs consultant called from Great Ormond Street yesterday, and went through alot with us. The biggest bombshell was that he will be having an ECG and electrophysiology. We had no idea of this. It's standard procedure with this treatment. Another thing we didn't know. And apparently the electrophysiology can be painful. He will have those little pads put on his head and the electrical current will give them a detailed look at his eye and the vision in it. How it reacts. Another scary thing for Jacob to go through. Everyone keeps saying to me "it has to be done." Yes, it does, but until you have to watch your kid go through all of this, you have no idea how much you wish it didn't have to be done. How much you really wish you could take it away. How you would give up your eyes or your sight for them. How you'd be prodded and poked and put to sleep every other week instead of them. Parents would do anything for their children. I know every parent would. And the pain of having to watch your child go through something that you cannot take away is just incomprehensible. Every parent has been through it, I'm sure. But when it's your kid, you forget all the other parents and think of yours, how you would do it for them in a heartbeat. And you do feel like no one understands. And perhaps that's self centred. But I don't have the time to think of that. I am concentrating on keeping my kid happy. You block out your pain and upset and just try to act like everything is normal. Although I think it is normal to Jacob now. Every morning he wakes up and the first thing he says is "Can we go to the hospital?" I can't decide if it's cute or sad.

We went to Moorfields Eye Hospital on Thursday for Jacobs first appointment with his new prosthetist. My mum came with me as I was crazy enough to think taking Alba and the pram on the tube would be a piece of cake. The journey was absolutely vile and the way the TFL staff spoke to us was horrendous. When asking for help up the stairs after being told that we'd have to wait for a less busy train as we had a pram, we were told "It's not in our job description." Eventually someone helped us and we managed to get to street level and get a taxi. Still stressful. But we got to Jacobs appointment, even if we were 20 minutes late. His new prosthetist Nick was really lovely and he spent so much time perfecting Jacobs new eye. And really made effort with Jacob too which was great as he felt relaxed. He took a mould of Jacob's socket so hopefully the eye should be a perfect fit. He gets it in about 6 weeks. I'm so excited. The journey home wasn't half as bad, mainly because it wasn't very busy and we chose to get a taxi and go from Liverpool Street station which was much more pram friendly.

We are off to Great Ormond Street Hospital in the morning for Jacobs first appointment. Then back on Tuesday until Wednesday. It's going to be a very busy week. I am so worried about leaving Alba as she is such a mummy's girl and in all honestly, she's quite hard work so I always worry if she's left with someone. It's so much upheaval for both of the kids. And I am dreading staying overnight in GOSH on Tuesday night. Again, it's all the unknown. I'm sure I'll feel better when the first one is done and I know what to expect.