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.

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.

Its that time of year...

So this week our whole house has come down with a cold. Which might explain the unhappy boy we had for the beginning of the week. I always feel so guilty if Jacob is going through a fussy or clingy stage for a few days then comes down with something. Especially after I've left him to cry it out or tried the tough love approach. This is why babies should be born with the ability to talk! It would be much more helpful! But then I guess that would take the fun out of it. On Thursday night, I walked round to our shop, and when I say walk, I went REALLY slowly as it had been a long day with Jacob being extremely miserable and not wanting anyone but me. We had run out of calpol and Jacob was getting snottier by the minute, so I was like "I'll go!" As awful as I felt, I just needed five minutes peace. I was stood in the shop armed with calpol, biscuits and diet coke and was just standing staring at the chocolate and the shop assistant looked at me, laughed and said "Can't decide what you want?" And I just laughed and said "nope!" When actually all I wanted to do was cry and say "my little boy has a cold and I don't know what to do!!!!" It's so silly, but Jacobs cancer doesn't actually show any symptoms, he isn't "ill" with it. When he was having chemo he was obviously ill quite alot, but I always knew how to deal with it. Give me a baby with a cold and I'm useless. On Thursday night, Rich slept on the sofa as Jacob wouldn't settle anywhere but in our bed, and as he had work, it made sense for him to sleep downstairs where he would get a decent night's sleep. Jacob was so restless all night, I think I must have had about an hours sleep in total. Jacob was still quite ropey Friday but slept much better that night, he stayed in his own cot until around 4 when he wouldn't settle back off so into our bed he came! Back into that bad habit again! He wouldn't give in and go back to sleep so by 5.45, Rich got up with him so I could get a couple hours sleep. When Rich gets up with him, the minute I appear at the bottom of the stairs, Jacob goes nuts and becomes a mega mummy's boy. (Which I secretly love) So yesterday, he was in extra "need mummy" mode. I literally couldn't get dressed until about 2pm, which I absolutely hate doing. I have to get up, have my cup of tea, get washed and get dressed otherwise it wrecks me for the day. It must be where Jacob gets the routine OCD from! Jacob slept until around 7am this morning which was so much better and it seemed to do him the world of good as he was much much happier. Thank goodness! He didn't even cry when I put him down on the sofa and went to make his milk. He hasn't napped again all morning and just as I was dishing up Sunday lunch, Rich sat with him on the sofa and within about 10 seconds he was asleep! Typical. He took a long time to settle in bed tonight which is unlike him but definitely seemed much better! I'm so glad because we have his check up at The Royal London on Wednesday and they won't see him if he's poorly! I'm so nervous for this check up as six weeks is the longest break we've ever had between appointments. I will obviously be over the moon if he is still stable, but I never go with that expectation because I don't like to set myself up for disappointment. But on the other hand, because he's done so well and not needed treatment for nearly 3 months, I think I'll be gutted if he does need treatment. But you can't plan for these things and you can't tell the future, so as always, we will deal with whatever happens on the day the same way we always do.

He actually ate today! Demanded a banana, so a banana he got! 

 As he was in a good mood, we did some baking. Well Jacob launched cake mix up the walls.

 I'm a terrible baker, so we cheated and used a Peppa Pig box mix! 

Spending quality time with Lex.

4am is the new 7am.

Oh my gosh, I don't think I've been this tired since Jacob was first born. We've recently decided that afternoon naps are no longer necessary (again) and that its completely normal to get up for the day at 4am. He's just gone down for a nap and it's only 8.30, which is going to ruin his whole day now. Yes, I am a routine drill Sargent. Jacob has always had the same sort of routine so if anything changes, it just messes up his whole day. So the 8.30am nap means he will be an absolute grotbag by around 1pm. And if he skips his afternoon nap again, he will be a total sleep deprived monster by bedtime and then we can do it all over again. We have been very lucky with Jacob going down to bed. From around six weeks old, he had a bath, bottle then bed. At first, he went in his Moses basket in our room and we'd leave him to go off on his own, although for the first few nights, I would sit outside our room or peer round the door until he went to sleep. Then he went into his own room at 3 and a half months as he filled his Moses basket and we wanted him to be used to it before his chemo started as we didn't want an upheaval when he would be feeling rubbish anyway. The times obviously changed as he got older and settled more into a routine with feeding and daily naps and bedtime slowly dropped from 10pm to 7pm which it is now. Although last night he went to bed at 6pm as he was so tired. I wish babies understood when you explained to them that if they slept, they wouldn't feel so pooped. Jacob just looks at me like I'm mad when he's throwing a wobbly and I'm stood there going "well Jacob, if you'd have slept or gotten up at a normal time this would be happening right now would it." I just get another scream as a response.
So right now, with the first bit of quiet I've had since 4.45am, I am torn between having a nap, washing my hair or having a cup of tea (as I couldn't drink the first one I made due to my insane little monster refusing to allow me to sit still.)

...So, I opted for all three, and managed to squeeze them all in! Well I didn't really have a nap, just laid on the bed revelling in the silence. And I don't think I've ever enjoyed a cup of tea more in my life. Jacob slept for around two hours, and woke up in a reasonably good mood! We've started going for a walk after his morning nap, just to kill some time really because he normally is quite miserable between his morning nap and lunch. Plus it builds up his appetite a bit! We've had some trouble with him eating since we've been letting him sit at his little table and chairs to eat, he gets up and looses interest quite quickly. He still eats, but just takes a lot longer and then he gets bored. So I think we may go back to the booster seat at the table.
My dad and step mum came over with my little sister this afternoon, and for the first time, I saw Jacob being a bit of a monkey with sharing his toys. My little sister is nearly 3 so she's still learning about sharing too. But Jacob was trying to take everything Katie picked up. And he was not happy when I took it back to Katie. This age is definitely living up to its reputation as "the hard stage." My happy, independent boy has become a miserable clingbot. He woke up from his afternoon nap extremely unhappy and sat on my lap eating his rice cakes through groans and moans. Rich played some ball with him when he got home from work so I could cook dinner, which probably would have proved a mission with Jacob hanging off my leg! I feel like I constantly repeat myself, but I really hope he sleeps better tonight!

We went to Wild & Wacky as usual on Monday and to Jo Jingles. Jacob really enjoyed himself. He climbed around all of the soft play and went up to the slide all by himself which he never normally does. And he stood up and participated in most of Jo Jingles. He was hilarious, just wandering around like he owned the place. 

 The troublesome twosome...

 "Participate" also means "eat the instruments."

 Walking.

 We went to the park on Tuesday to try and burn some energy so Jacob had an afternoon nap. It failed.

 Jacob is obsessed with this tree stump in the woods behind our house. 

Cruising in Jacob's car.

I am arranging a fundraiser for The Childhood Eye Cancer Trust as I couldn't make the Carrots Night walk this year, which we did last year and raised an unbelievable £7000! In all honesty, I just totally forgot to sign up this year which is a bummer because I really wanted to do it as it was quite good fun and I met some amazing people last year. So, to ease my guilt for being useless and forgetting, I have decided to throw a children's Halloween Disco. Originally, I was going to just have a Halloween party at home for my friends and their children, but my friend suggested we turn it into a fundraiser. So since last week, I have been planning that! It's quite stressful but people have been so generous with raffle prizes and donations. Its so lovely to know there are people out there who want to help. I'm sure it will be worth all the stress and worry on the day! And I cannot wait to dress Jacob up in some crazy costume!

A celebration.

So Rich's 30th birthday has arrived. Today has so much meaning to us, not only because it's his birthday, but it's also a year to the day that Jacob was diagnosed with cancer. It's been a very bittersweet day. I knew I'd have trouble dealing with it and last night I just felt this sense of sadness, it was 9pm and I remember so well where we were at 9pm on the 14th of August 2013. A&E in Harlow hospital. After finally giving in and googling the white reflection in Jacobs eye, and the only results coming up were "cancer." It was like the letters were written in size a thousand font and were flashing red. I just knew that's what my baby had. As it was so late, the doctors couldn't really give us any answers, but I knew by their faces and the way they were speaking that something wasn't right. When I asked the nurse if he should be following objects, she just looked at me in this way I'll never forget and nodded. We went home after being told we'd need to come back to the eye clinic in the morning. So after no sleep, we were there at 9am. We saw about 3 ophthalmologists who all said the same sort of thing; that he should be following and that his pupil wasn't very reactive in his right eye. We were then told to wait around for the paediatric ophthalmologist but it could be a while as he didn't have any appointments free and was going on holiday after that day. So we could either come back in two weeks or wait. So we waited. He squeezed us in around lunchtime, and performed an examination on Jacob's eyes. It was awful, I couldn't look but Rich helped hold him still. They clamped his eyes open with these hideous metal clamps and then used lights and other tools to look in his eyes. I just stood back crying, Rich said he still can't forget what it looked like. He said the only way to describe it was like his eyes had popped out of his sockets. The ophthalmologist called in another doctor for a second opinion and they were talking amongst themselves when he said "Yes, retinoblastoma." The room started to spin and I just fell to the floor. My 12 week old baby had cancer. Dr Vempali, the paediatric opthamologist was so wonderful. He was so shocked we knew what he was talking about. I explained that I'd googled it and he said there was no point in going over it all with us as we had a good idea about what it was and he said he wasn't going to sugar coat it for us. Jacob had Retinoblastoma. They don't do a biopsy as it is recognisable by appearance. He referred us straight to The Royal London Hospital and he was good friends with Mr Sagoo, who is one of Jacobs consultants so he faxed over Jacobs referral there and then. They called me within about half an hour to go through everything and gave us our appointment for the following Wednesday. It was six days away. The nurses at RLH were so brilliant at reassuring me that six days is okay, and that I don't need to panic. Obviously I spent the next six days in such a mess. All of our family and friends came over to see us, and see Jacob over the course of the week which was both amazing and awful at the same time. We just wanted to be normal, but all of the visitors reminded us that it wasn't a normal situation. We had to wait at the hospital for the afternoon of Rich's birthday for Jacob to have an ultrasound and MRI scan, this confirmed that there were indeed tumours in both eyes but thankfully his brain was clear. And all we had to do was wait until the following Wednesday. It was an absolutely awful experience, the first time we were to starve him and the first time we would have to watch him be put to sleep. We just sat in our cubicle with the curtain closed. When it was time for Jacob to go down to theatre, we'd agreed I would take him. It was truly one of the most awful things, I wouldn't wish it upon my worst enemy. He was already asleep when they put the gas over his mouth and nose so he didn't struggle, but I wasn't prepared for the dead weight he'd become. It felt like he had died in my arms. I fell to pieces and the nurses had to help me back to Jacobs bed. After the longest hour of our whole lives, he was ready to be collected from recovery. He was very distressed and obviously extremely hungry. We fed him and then just sat waiting for the doctors to come round. We said we would deal with whatever but hoped more than anything that he wouldn't lose an eye or need chemo. We never thought it was that bad. When the doctors and nurses and consultants took us into the parent room, we knew it wasn't good news. He confirmed that Jacob did have Rb, and the only treatment for his right eye would be enucleation. He was going to have his eye removed. I just sobbed into Jacob who was still asleep in my arms. This wasn't happening. Mr Sagoo explained to us that more than anything, this was to preserve his life. The pressure was so high in the eye that if it was left much longer, it would kill him. He then went on to explain that he would need six courses of chemotherapy to "mop up" any cells that may be left behind and to treat the tumours in the left eye. The two things we really didn't want Jacob to have to go through were going to happen. We were booked in for the following week for Jacobs operation. We left quite quickly afterwards. We didn't wait to have anything else explained to us, we just had to get out of there. The nurses said they'd call me the next day to go over some things after we'd had some time to process the day. And that was that. That was a year ago, and what a difference a year makes. We can't quite believe that it has only been a year. It feels like ten.

So today, Rich's 30th birthday, we are determined to pave over the pain of this day last year and celebrate. Not only Rich's birthday, but the fact that we didn't know if Jacob was going to be here today but that he is. And he is still so unbelievably strong and fighting this disease without so much as a whimper. 

We always start birthdays the same in this house, and we made time for our tradition last year too before setting off to the hospital. Whoevers birthday it is gets a lie in, and the other makes the tea, decorates the house and gets all the cards and presents that have been grabbed from the postman and hidden until the day. So this morning it was me. Jacob woke Rich up with a nice dive bomb to the head and Rich had his cup of tea and opened all his cards and presents in bed. We've spent the day at home, just us 3. But as we always do on someone's birthday, everyone came over in the evening for takeaway and birthday cake! After Jacob went to bed, Rich, Aaron, Lou and me all played Monopoly Empire. We are such little nerds. But it's actually really funny to play because everyone except me is so competitive so I just sit back and watch them all argue. 

It was a really lovely evening and compared to the place we were in this time last year, we are feeling so lucky. I hardly even thought about this day last year which is what I wanted for today. Rich had a really good day, and as he didn't want to celebrate at all, I'm glad he did and enjoyed himself. Oh, and we obviously had cake! 

You can't have a birthday without a Colin the Caterpillar cake. 

Fevers and Frozen.

So the post immunisation fever has reared it's ugly head over the last few days, at least that's what I'm hoping it is! Jacob started to get really grumpy on Wednesday so I got out my old pal the thermometer. It was like another part of my body when Jacob was having chemo, I would take his temperature every few hours and if he ever had a fever, it would be a trip straight upto our local hospital to have Jacob put on antibiotics for 3-10 days depending on what kind of infection he had. Thankfully this only happened once, and we stayed in for three nights. So when he came up at 38.2 degrees on Wednesday afternoon, it was calpol time! Besides being super grumpy, he had no other symptoms. Although he actually slept through the night on Tuesday and Wednesday which is a rarity in this house so I should have realised something wasn't right! Thursday morning his temperature was still around 38 and calpol didn't seem to be making a difference, I had read that this can happen 7-10 days after the MMR jab, but I still panic that it could be something else. My brother and Lou were meant to be looking after Jacob while I worked as Rich had to work Thursday too, but I called and said I wouldn't be in just in case! Plus he was so grumpy, I wouldn't expect anyone else to have to look after him while he's like that. And he only ever wants mummy anyways when he's not feeling great! So we spent the day watching Frozen, shock! I'm starting to get a bit worried though as one; it's making me excited for winter and snow, and two; I am developing a crush on the chiseled jawed Kristoff. I wonder if Jacob would appreciate watching The Notebook instead? Jacob has started to respond to things in the film, such as when the big marshmallow snowman growls and shouts and Anna, Kristoff and Olaf, he growls at the tv and shouts back. And I realise I'm talking as though everyone has seen the film, so if you haven't seen it, watch it. I've seen it 12 million times and I actually still enjoy it.

Jacob must have either been feeling better or 100 times worse last night because he was up literally all night crying. No amount of cuddles or calpol made him any better. I even resorted to bringing him into our bed which I try not to do, ever. And that didn't work. I ended up having to sleep sitting up next to his cot as everytime I went out of sight, he woke up going crazy. It's like he has a mum radar!! So to say I'm tired today is an understatement. Jacob however, had a 3 hour nap so he's feeling just fabulous and is all up for a party now. I really need to start drinking coffee. 

Fever= nappy day! 

I had to share this photo as I bought Jacob a cap the other day and he actually doesn't mind wearing it. Plus I think he looks ridiculously cool. If I may say so myself. 

They're so pleased to be going to Tesco...

xo