A tonne of bricks...

"I'm going to ride a motorbike when I'm bigger!" That was it, a huge tonne of bricks dropping onto my chest. Obviously I didn't tell him that he probably wont. Unless he's a passenger. But even then, I probably wouldn't let him anyway. With "big school" becoming imminent as opposed to next year, or a few years, it's in less than two months, I have started to realise how Jacobs vision is going to start affecting his life more and more. Last night we were talking about our friends little girl who'd been to her school disco, Jacob said "I want to go to a school disco!" I said "Do you? Do you think you'll like it?" And he said "no, it will be too dark and loud. I won't like it." That's 2 heartbreaking realisations in 12 hours. No school discos, no riding a motorbike. What next? Obviously I know none of this is set in stone, and who knows what will be available to Jacob in the future, but for now, they're a no. And it isn't fair. 

Part of me cannot wait for Jacob to start big school, I know he will love it. But the anxiety I feel over him starting makes me want to keep him at home forever. Or at his preschool. Because I love them for how they've treated my baby boy and can't imagine anywhere looking after him the way they do. He got into the school I really wanted which was amazing. He has a huge Education and Healthcare Plan (EHCP) that the school, preschool and Jacobs Visual Impairment teacher put together along with Rich and Me and it covers absolutely everything from starting the day, to coat peg positions to where he will sit in the classroom. So I know they know all they need to know. And once Jacob starts, they will see his isn't what he seems on paper. On paper, I think he can be absolutely daunting. It isn't until you meet him that you realise how he doesn't actually let his sight or lack of, affect him. 

I know it's been a LONG time since I last wrote, Jacob is still stable. Our hospital appointments are 3 monthly at the moment and hopefully will only get further apart. We've had some behaviour troubles with Jacob but I think it's down to all the change going on, leaving school, starting big school. Alba is a lot more "involved" now so he absolutely tortures her and has become very protective of all of his stuff. Another tricky phase in life with two toddlers I'm sure. They have brief moments where they're the best of friends and it's absolutely lovely. But they are few and far between. We've also had chicken pox since the last post, but they both coped really well with it. Thank goodness! I will write again soon! 

A few photos from recently; 

Do they really have to grow up?

I had a really good cry tonight. I haven't cried properly in ages. Like, I cry at the Christmas adverts, and at that bit in Toy Story 3 where all of the toys are heading to their death in the furnace, but I haven't had a "proper cry" in ages. It all started with viewing a primary school... Jacob is due to start next September, and although I know it's been coming, apparently I hadn't actually, fully accepted that it was happening. Until tonight. Basically, I had my heart totally set on this one school, that I hadn't even viewed, but I have heard amazing things about it and their OFSTED report is also brilliant. But it turns out, none of that actually matters. Because when I walked in, it was such a crazy, tight, cluttered layout that all I could think of was how overwhelming and scary it was going to be for Jacob. And how many accident forms I would be filling out each week. Now, don't get me wrong, I know I've only viewed one school, and they may all be like this, but all I wanted to do was turn and run. And homeschool him. They have to just "get on with it" from the start, so you don't take them into the classroom on their first day, they just go, find their pegs, hang their stuff up and go. And then they go collect their school dinner, scrape their own plate, put their cutlery in one bowl and then pile their trays up. All totally acceptable. But I know Jacob won't be able to do this without help, and I know help will be available but I hadn't fully grasped the concept that this is when this disease was actually going to start affecting his life. It's obviously affected him his whole life, but I've always been there to hold his hand, to help him. I know how he likes certain things, how he does certain things, how he works things out because he can't see. And I honestly can't bear the thought of him going off on his own. I sound like he's leaving home, but I really didn't realise that this was when the visual impairment that the bastard cancer left behind was going to become an issue. Which is probably the most naive I have ever been. Except for that time I thought two babies would be a breeze...

I'm branching out now and planning on viewing schools I hadn't even considered because of where they are etc. But as Jacob will have a Health Care Plan in place when he starts, he gets more of a choice. It isn't decided on catchment area or siblings for him. So he kind of has the pick of the bunch, which I wasn't going to take advantage of, but think I may do now. Has anyone else had their heart set on a school, only to view it and be disappointed?

Why do our babies have to grow up?

Hello, only me again!

Still not too good at keeping up to date with this am I!?

We've had some wonderful news since i last wrote, Jacob had a check up at the end of September at The Royal London Hospital, and he is cancer free!!! Basically, the swelling of his optic nerve caused by the Intra-arterial chemotherapy, cut off the blood supply to the tumours and they've literally shrivelled up and died. So, an awful side effect which wasn't very common has turned out to be a brilliant side effect! Retinoblastoma is quite different to other cancers in the sense that they don't ever get the "all clear" in all its glory. He will still have to have regular checks as there is always a chance of a relapse, but his consultant Mr Sagoo was rather confident that it is very unlikely that we will see a new tumour grow now. This was obviously very unexpected news. I actually had a bad feeling about this appointment. Shows how much I know!!! I obviously spent the next few days in shock, crying everytime someone said "that's amazing news isnt it!?". Rich said he felt like he was floating, which I think must have been how I felt too. It is such a strange feeling. Obviously besides the first 12 weeks of his life, hospital appointments and cancer treatments are all we knew with Jacob. So to know that life will potentially return to some sort of normal is amazing. And scary. I feel very lost and almost like it's starting a new chapter. Which it is. I just don't know what about. We've not done this part of the story before. We didn't think we ever would. I'm definitely rambling.

Jacob is absolutely loving preschool. He looks so adorable in his uniform. He has hot dinners everyday and I have to make sure I know what's on the menu for the week as he asks me every morning what he's got that day! Getting out of the door by 8.30 every morning can be challenging, especially if he's having one of his less cooperative days. But we are doing it! He's learning so much, and his new key worker is lovely, as are the rest of the girls. They've gotten Jacob a desk lamp for when they do writing etc as he has one at home that he uses when colouring in and we found it helps. I'm one of those annoying mums though I think, as I ask so many questions and on Friday I asked if there's anything I can do at home with Jacob to help him along and to feel more confident as the last thing I want is for him to fall behind. But his nursery nurse was amazing and gave me a few tips and told me a few things they're doing. Can you believe they learn phonics at this age!? I love that he's officially learning now. I know they "learn through play" etc but I absolutely love him coming home and surprising me with things he has learnt. He's informed me that inside his head, is his skull and inside that is his brain. He knows where his spine is and where his heart is, "it's in my chest mummy!" Where is my little boy!?

I've started looking into primary schools. (I actually can't even talk about this without crying.) I have a pretty good idea of where I want him to go, and can't believe that we have to apply by January. FULL TIME SCHOOL?! WHAT! It really does just fly by doesn't it?

My second little person, I've nicknamed her Reagan. From the Exorcist, if you're unsure. Because she is 100% possessed by some crazy little devil woman. She is nuts. Possibly the naughtiest child I have ever known. She's gone back to hating everyone, except me. Yay. She screams and throws/launches/attacks anything within a two metre radius of her tiny, little self if she doesn't get her way. Or I go out of sight. Or just for fun. The attitude is a whole other level of teenager. And she is EIGHTEEN MONTHS OLD. I did discover that her father had a horrendous attitude and temper as a child, so we are blaming him for this one. My mother said I was a delight. Obviously. Haha. Again, I'm sure it's just another phase. Not that it justifies the launching herself backward in a strop, especially when it's onto concrete in the street. Because then, I just have to get her up and give her a cuddle as she has legitimately hurt herself. You think she would learn, apparently 18 month olds don't quite make that connection yet. Don't get me wrong, she is an absolutely hilarious, adorable, loving little thing. To me. And sometimes Jacob, when he doesn't push her over because she touched his cars. Sometimes she can't win, poor doll. She does sleep amazingly though which is great.

How cold is it now?! I got the kids really cute coats this year. I wanted a really gorgeous coat from Next for Alba but it wasn't very practical so she's got a khaki green parka like mummy. Jacobs got a gorgeous mustard parka from Next. I want it in my size!

We are back at the Royal London Hospital next week for Jacobs first check up since we got the amazing news so fingers crossed everything is still the same!!

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...

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.

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.

Hating the world.

It's very rare that I cry about Jacob being poorly anymore. It's been part of our lives for so long that it is just that, life. But last night and tonight I've cried alot. He will be having the intra-arterial chemo as his next line of treatment. Even though I know we're not, it somehow feels like we are back at the beginning. It is probably the impending 3 weekly trips to Great Ormond Street again, the word "chemo" again, the worry again. I feel so sad again. I know a few people who are going through something huge and life changing at the moment and none of it for the better and all I can think is, "how can life be so cruel?" I didn't want to be all doom and gloom on this blog, but I also started it as a sort of diary. And today is a "hate the world" day. Tomorrow probably will be too. All I want to do is scoop Jacob up and cuddle him until it all goes away. But that wouldn't work. Mainly because you can't keep that boy still for more than thirty seconds. And because sitting around hating the world won't make anything better. Jacob is still a completely normal two (almost 3!) year old little boy. And I want him to carry on with his normal life, not to see his Mum miserable and world hating. So the hating is just here for you to read. And if you don't want to read it, come back next week when I might be feeling more positive. I'll try and have something happier to write about. Truth is, I have lots of nice things to write about. The amazing support we have received from friends and family. The kind words. The offers of help. But right now, I just want to get the not so nice off my chest.

Another short blog. But I wanted to write something. And now I'm going to go scream into my pillow...just joking. I need sleep. And I'm sure one of my little monsters will be awake soon enough. Catch the winks while you can and all that...

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! :)

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.