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!!!

2 years.

Wow the last year has gone quick. Jacob had only just started walking this time last year. I was about to become pregnant. And Jacob was stable. So much has happened and although Jacob is back to having treatment, I know in another year from now things will probably be completely different again. Jacobs check up last week was a tough one again. He was an absolute sobbing wreck when I collected him from recovery after his EUA. The one good thing that happened this time was Jacob had fallen asleep before his turn to go down to theatre as he was second to last this time. He has never been that far down the list so I knew it was going to be hard. As soon as we got in the car in the morning, he was asking for a banana. He has a banana as soon as he gets up every single morning. Then when we got to the hospital, he was asking for juice. We managed to keep him entertained most of the morning with a ball, and we got to see Skylah again, who we met during chemotherapy. So they played together all morning, which was lovely. Jacob dosed off just before he was called to theatre so I carried him down as carefully as I could so he didn't wake. He jumped when they put the mask on him but then went straight back off to sleep. It was so much nicer than the crazed animal climbing all over me session we usually have. Jacobs consultant came to see pretty quick afterwards and explained he needed to give Jacob alot more cryotherapy as there is a little bulge on the tumour and it hadn't responded as well as they'd hoped. Absolutely gutted again, but it's just another bump in our road. It's so awful seeing Jacob in pain. He's older now and just cries so much more and is so much more aware of everything. The nurses could see he was clearly struggling to manage, so they gave him some oralmorph. Which totally wiped him out. He slept for about three hours and we aren't allowed to take him home until he is awake and has eaten and drank something. We ended up getting home around 4.30pm. My sister looked after Alba which was brilliant so Jacob had Rich and me all to himself at the hospital. And it was definitely a two person job this time, I was incapacitated under a sleeping toddler so Rich was my slave haha. I really missed Alba though, I've never left her for that long but she was in good hands! Plus, my nephew adores her so I knew she'd be okay. He constantly says "hello baby girl!" to her. He was devastated when he first met her and she wasn't Spiderman. We'd told him I was having a Spiderman baby and when he saw her he said "Char Char, I thought you were having a Spiderman baby?" I've never felt worse for lying to a child.
The distraction of Teddy meant Jacob wasn't quite so emotional that night or the next day as they came over to keep him entertained. I'm not good enough anymore. Jacob just says "I want to see Teddy!"

 Jacob and Skylah-Mae sightseeing.

Sleepy boy. 

Last week also marked the two year "anniversary" of Jacob's diagnosis. I absolutely dread it. It's also Rich's birthday on the same day, so I spent more time trying to think about that. We made birthday cards for him and I managed to get a painted footprint from Alba! Although Jacob saw this as a pass to paint her himself. I managed to stop him before any paint made it onto her, but stopping him from running around covered head to toe in paint and wielding a pot of red paint proved impossible. So I gave up and let him get on with it. It's washable paint, so I'd deal with it later! Jacob refused to wear clothes for the rest of the day. Another thing I dealt with later.

I've been trying to teach Jacob how to count for a while now but he just is not interested. I've always counted when carrying him down the stairs or if we are out and about, he just does not care for it. He says "1, 2, 6, 6, 6, 6, 6." I'm sure he will get it eventually. I remember helping teach Teddy to count using those foam number mats. But Jacob would rather throw the mats around than count. Any tips?! He has really come along with his speech though which is brilliant. He can say so many things now, asks for his lunch, tells me what he wants, tells me when something's wrong. It makes this parenting thing so much easier! He's due his two year check soon which I'm looking forward to. Our health visitor Claire is amazing and has given me some brilliant advice over the last two years. And she was there on the phone straight away when Alba was born and came round to see us. I rang her so many times in Alba's first few weeks when we were dealing with the reflux/colic issues and she was always one step ahead of me, ready with the prescription for her milk or booking a doctors appointment for her. Alba is due to be weighed this week, I'm so intrigued as to what she weighs now as she was 12lbs5oz 4 weeks ago and she has definitely grown a lot since then. She's officially in 0-3 month clothing which Jacob didn't wear until he was around 6 months. And size 3 nappies! Jacobs only in size 5's! It amazes me how different babies they both are. Both in looks and how they are. Obviously I know it was a different situation with Jacob as he was poorly and had trouble gaining weight but I think he would have been little anyway. I was a total bag of bones until I was about 12. Then the carbs found me. Haha. I've noticed how different Alba is with holding herself and her head up. It must be that extra chunk helping her out! Another big difference, actually HUGE, is Alba sleeps through the night! She has her last bottle normally between 8pm & 9pm and then sleeps until around 6. Not every night is like this and she has had a few where she's woken up and wanted feeding, but this is absolutely amazing regardless. I think every mum will agree that you don't ever feel like you will get a full nights sleep again when you've had a baby, but hopefully soon these nighttime wake up calls will be a thing of the past!

A few pics of what we've been up to recently...

We went to a couple of fun days in our local park with Jacobs friend Darcie. (Her mum is actually one of my friends but I don't think that counts after the kids are friends...haha.) 

 Not a great photo, but this was the red paint fiasco...

 Big girl napping in her cot. (Which Rich finally built after me nagging for 3 weeks!)

 Chalk and Cheese. How cool is Jacob's T-shirt?! Its from Next.

Cheeky chops.

A bump in the road...

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

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

 Sleepy boy!

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

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

Our first sickness bug!

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

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

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

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

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

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

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

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

We've been busy!

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

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

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

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

A Wonderful Wednesday.

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

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

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

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

A full nights sleep...

Before I even started writing this, I thought "Char, you're jinxing it, you're jinxing it, don't do it!!!" But I think we may have turned a corner with sleep. Jacob hasn't been in our bed for around two weeks now. And He's started to sleep to a more normal time. He woke up at 8.15 on Sunday morning. It was amazing. He did have a wobble at around 5.30, I'm not 100% on the time but it was dark so there was no way we were getting up. Does he not know that Sunday is a day of rest?! I left him to have a little moan, and then it went silent. Next thing I know, it was 8.15. Rich sleeps through absolutely anything (so he says, I bet all your baby daddy's do the same too don't they? Must be a magical gene men are blessed with) so when I decided enough was enough with him coming into our room in the night, I knew the battle was for me to fight alone. We've always tried to use controlled crying as is the the only thing that's ever really worked for us. Jacob has been so much happier too, and me! He wakes up and sits talking and laughing to himself and his toys, as opposed to waking up crying. And He's down to the one big nap a day. This varies from before lunch around 11.30 or he will go after lunch around one. It all depends on what time he was awake. Which recently hasn't been earlier than 6.30. I'm jinxing it again aren't I...

We have Jacobs check up at the Royal London Hospital tomorrow, it was pushed back a week as they had an emergency last week. Its happened a few times and every time I panic like crazy. A week will never make too much difference in tumour growth, but because he's gone so long without treatment, it is very nerve wracking. He's on the afternoon list too which is even more stressful than the morning. It tends to always run a bit later and sometimes Jacob won't go down to theatre until 4. And when he hasn't eaten since 7.30 that morning, he is not a happy boy. And I'm pretty sure he's going through a bit of a growth spurt at the moment too as he doesn't stop eating and all of his trousers seem to have turned into ankle biters. He's finally making his way into 9-12 month clothing, so after a year of wearing 3-6 and 6-9, He's finally mixing it up a bit! It does however mean he needs so many new clothes, he managed to build up an entire years worth of wardrobe in 3-6 month clothing. So summer or winter, if you need some 3-6 months boys clothes, give me a shout!!!

Due to the size change, I went through all of Jacobs clothes to sort out what I want to keep and what I'll probably donate. I thought about doing a boot sale and selling it on but its just all too much hassle. I managed to part with about a quarter of the items. And even that was a ridiculous amount. How do you get rid of it all?! I think I'm going to need to get about 200 of those memory quilts made. My mum got Jacob a bear made with 5 of his first sleep suits which was lovely. I'm sure I'll get realistic and part with them one day.

We avoided Jo Jingles this week, purely because Jacob always has a habit of picking up a cold or some sort of snotty disease right before hospital, and as he was already delayed, I didn't want to risk him catching anything. Instead, we spent the morning grabbing some shopping and then Sophie and Teddy came over for lunch.
We changed Jacobs routine a little bit last night, as he normally gets changed and ready for bed upstairs, then goes to bed after a story. We tried changing him into his pyjamas a bit earlier last night and letting him stay downstairs for a bit. It can end up a bit chaotic when he gets changed right before bed and can make him over excited and then he throws a bit of a wobbly when he's put into his cot. He went to bed really well, and alot calmer than usual. I still had to read the same book four times though. That's his new thing. The same book over and over again. He would let me read it sixty times if he could.

A bit of before bed relaxation.

I finally managed to get some wellies in Jacobs size yesterday. Everywhere is sold out of little size 4's! But they have posed a problem, he wants to wear them ALL THE TIME. And be outside ALL THE TIME. And it isn't very warm at the moment! We've just spent an hour in the garden. I swear kids don't get cold. 

I'll let you know how we get on tomorrow. Fingers crossed!

One year later...

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

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

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

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

Back from the op, he is so tiny here.

A priceless moment.

Just after the dressing was removed. 

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

Smartie pants.

Check out the bed head!

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

My little adventurer...

Collecting whatever he can find.

Buds. 

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