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.

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! :)

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!

Playdates and immunisations.

My friend Kayleigh asked if I would look after her little girl Darcie for a few hours on Monday. I jumped at the chance as I absolutely love her and she loves Jacob. They are so cute together. She's two next month so there's about 9 months between them. She looks after Jacob when she's with him, the way she goes upto him and leans over and checks he's okay and offers him his drink is absolutely adorable. Jacob went for his afternoon nap not long after Darcie got here and the whole time she kept asking where he was. She just kept going "Jacob?". She associates him with slides as we go to Wild and Wacky together a lot and Jacob tends to climb up the slide while Darcie is trying to go down. 

My friend Laura was here with Jacobs BFF Jonah, and my sister was also here with Teddy so it was rather chaotic! Luckily the weather was good so they were all playing outside. My neighbours probably think I'm running some back alley crèche. 

Darcie is so well behaved, I knew I wouldn't have any trouble handling her and Jacob together. Makes me think another one of my own will be a piece of cake (yeah right.) I do keep threatening to kidnap Darcie, but her dad John didn't seem too keen on the idea...

Char Char's Nursery. 

Playing house.

Buddies.

Today, we had the first of Jacob's immunisations post chemo. He only had the 8 week ones first time round as he was diagnosed with Rb at 12 weeks and we actually had to cancel his 12 week lot due to his first appointment at the Royal London Hospital. It was then we found out he would be having chemotherapy so we were advised by his consultant not to continue with them. For a couple of reasons, one being that his bloods and immunity will probably be too low and it's too risky to inject him with live viruses. And the second was that the chemo would wipe out any immunity he had anyway so effectively would wipe out the vaccines. We've had to time his injections around his RLH visits too because if he was to get a fever in the week or so before going there, whether it be from teething or a vaccine or a cold, the anaesthetists can refuse to see him and to put him to sleep. And obviously his appointments at RLH are a priority to us so that always came first. Luckily, with the amazing news last week and our four week break, we've been able to fit them in.

He is due to have them all again, so the 8, 12 and 16 week ones and then the one year MMR. The nurse gave me the choice of him having all 5 injections today, then the boosters in a month, or we could spread them out a little bit. I opted for the latter as I didn't want him to have all of them and completely knock him for six. He had the MMR today too which I wasn't expecting. I know there are so many mixed feelings about this vaccine, and Rich and me have spoken about it, but at the end of the day, with everything Jacob has gone through and the fact that if he was to get any of the illnesses, his cancer treatment could be delayed, there was no doubt in my mind that I wanted him to have it. Yes, he could easily get over measles but if it delayed his cancer treatment, would it be worth it? Never. 

He was so, so brave. I was so nervous that I asked my sister to come with me. I went with her for Teddy's one year vaccinations and it was absolutely hideous. He was sat on Sophie's lap all happy and laughing at me and then the nurse stuck the needles in and his face absolutely dropped and it was the most heartbreaking little face ever. I can still see it now. So ever since then, I'd always said whenever I had a baby, Sophie could come with me and go through it herself. She'd offered to help pin him if he went mad, but to be honest, after pinning him every other week for when he's put to sleep, I knew I'd be okay. He was easy enough to keep still and the nurse was pretty speedy. He let out a little whimper after the last one but was fine after about ten seconds. I was honestly so shocked, but he's so used to being messed about with and prodded and poked that I don't know why I was surprised he wasn't bothered. So sad really. But he is so strong. Makes mummy look like a big wimp. The nurse at our GP surgery was so lovely, she said how wonderful it was to see Jacob and how well he's doing. He's a little bit of a celebrity down there. Everytime I ring, I get, "oh Jacob! The little boy with the poorly eye?" Yes, that's him. One time we went, and the doctor we saw grabbed some nurses going by and was introducing him to everyone. I've been going to the same surgery my whole life and it's pretty much all the same doctors so it's pretty crazy sometimes. They see so many people everyday, so it's quite touching they remember us. 

Jacob seemed happy enough after, I'd gotten the calpol at the ready just in case. He went down for his nap as normal, happy. But woke up like an angry little monster. Normally after a drink and a snack, he's back to himself. But he did not stop crying, following me around and hanging off my leg. Which was very difficult while I was trying to hang washing out. There was only one thing for it, the washing got left in the basket in a big wet pile and we watched Frozen. 

Rich brought him home a new castle tent for his room for being brave. And I'd only told the nurses earlier that he isn't spoilt. If any of you are reading this, I wasn't lying! Promise! 

I'm expecting a rough night with him, but hopefully he'll sleep well and there will be no fevers in this house! Calpol is like a little godsend to me now as we went so long with Jacob not being able to have it because of the chemo. (It can hide a fever which can be an infection in their Hickman line/port-a-cath) Through teething and colds and coughs, we just had to let him ride it out. It took me so long after his chemo had finished to even give him any calpol or nurofen through fear of a missed infection or something. But as silly as it sounds, I am so grateful for it now. Especially with the teething! 

As I'm finishing writing this, Rich and me are tag teaming trying to settle Jacob, looks like post immunisation grumpiness doesn't like to sleep...

The king of the castle. 

Mummy trying to get in on the action!

Thankyou for reading!x