Day 1.

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

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

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

Lost.

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

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

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

Hating the world.

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

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

Back at it.

Jacob had another check up on Wednesday where we received the news that the stubborn little tumour in his left eye isn't giving up and the retinal detachment isn't getting any better so he will need further treatment. As cryotherapy is no longer an option due to the damage it is causing to his eye, they are going to try either the radioactive plaque, which we knew was an option. Or intra-arterial chemotherapy. That nasty little C word again. There's alot of those isn't there!? There are a few side effects with IAC, not as many as regular chemotherapy but still. IAC is when a catheter is inserted through a vein in the groin and fed up into the affected eye. The vein can collapse or spasm which stops the catheter going in and therefore the procedure will be cancelled and then they try again maybe the following week. It can also cause Jacobs blood pressure to drop very quickly and then they require adrenaline. Which is the scariest part for me and why I am leaning much more towards the plaque. They can also lose their lashes, eyebrow and sometimes some hair at the front and it can cause their eyelid to temporarily droop but again, it is so different for everyone. I had totally prepared myself for the possibility of the plaque so when Jacobs consultant said this, I wasn't overly shocked. It was when the chemo was mentioned again that I panicked. We don't find out until Monday afternoon what they've decided will be the best course of treatment. I have tried not to think about it too much. Plus the babies and me all have a rotten cough and cold so we've been tackling that. Alba has slept through the night the last two nights though and I'm hoping it isn't because she is poorly. Jacob has also stayed in his bed all night too. He normally ends up in with us and he started demanding to lay on the outside of the bed on my pillow which is fabulous. I'll be wishing for sleepless nights again when they grow up and dont want to cuddle me.

Jacobs latest check up.

Jacob had a check up last week at the Royal London. This is the first one since we found out if he was to be needing anymore treatment, it would be the radioactive plaque. But, no treatment was required this week! His retina is still partially detached and there is some scar tissue that needs to be kept an eye on, but other than that, its quite positive! So we are back there on the 17th. I have prepared myself for the fact that he probably will require the plaque sometime soon. It's a two night stay in hospital and Jacob will have his left eye covered so will effectively be blind for around 26 hours. The hardest part will probably be that I won't see Alba for that time as she isn't allowed to visit. We haven't decided exactly what we will do yet but its more than likely that I'll stay with Jacob if it does come to it. Which will be interesting for Rich as she is such a mummy's girl!

They had some children's entertainment on the ward which was brilliant. Jacob got himself a balloon sword!

Jacob has his first appointment with the ocularist at Moorfields Eye Hospital on the same day and I am so excited. They are like the Rolex of prosthetic eyes. Everyone who has been there has gotten an amazing match with their eye. Our current prosthetist is okay but when we were offered the chance to go to Moorfields, I couldn't say no. It's obviously alot further to travel but I'd travel a thousand miles if it meant a better eye for Jacob.

This came up on my "timehop" today. I don't know why but this is one of my favourite photos of Jacob. He's always so adorable when he finally wakes properly after his EUA's. I guess that's just a positive we should take from it all! 

Just a little post, as I realised I forgot to update on Jacob's last EUA!

Life with two...currently.

I am not going to lie, two kids is hard work. A toddler going through the terrible twos is hard work. A high maintenance, sensitive 7 month old is hard work. Both of them together...well it's really hard. I have a newfound respect for single parents, and anyone with more than two children. It may be the age gap, there is 2 years almost to the day between them. I can already see my hands are only going to get more full. But, I love it. I love the chaos and I love that I have two amazing little characters for children. Obviously there are plenty of days where I want to hide in a cupboard with a straw in a bottle of wine, but then one of them will do something that will remind me that they are just children and everything they do is learning. My sister thinks I am insane and we have totally put her off of having anymore children. I'm always busy. If I could change one thing, it would be that we had a cleaner. The only reason we don't is because I couldn't bear someone picking up after me and I'd feel like I had to clean before they came. Oh, and I refuse to pay someone to do something when there is no reason that I can't do it myself. I just have to learn to manage my time better. I paid someone to professionally clean our oven before Christmas because I just couldn't get it clean, and I begrudged that. Although, it looked amazing after. I didn't want to use it, but Christmas dinner wasn't going to cook itself.

My days are just non stop and I honestly don't think I sit down until well after the kids have gone to bed. Which I'm sure is the case for most parents. 7-10am and 4.30-7.30pm in our house is just chaos. Jacob doesn't like to do anything he's asked at the moment, getting dressed is the top of the list. And Alba isn't the best sleeper, day or night. So she is tired alot. But also refuses to nap for more than about 30 minutes unless we are out and about with the pram. Jacob very rarely naps at all now. I think he's worried he will miss out on something if he sleeps while Alba is awake. He has been very jealous and I think he has found it very hard adjusting to life with a sibling. Alba says "mum mum mum" when she's crying and he says "No, she's my mummy!!!" And if I'm holding her and he wants a cuddle, he won't share me. He says "No, Alba on floor!" It's so hard as I know we have spoiled him with attention and so have most of our family. As much as I say we didn't, we probably overcompensated because of what he was going through.

The walk to nursery is usually a stressful affair. Jacob waddles along like he wants the snails to beat him there or screams most of the way that he wants to go to the shops. Recently, he wanted to ride his scuttlebug to nursery but wanted to go the wrong way, which ended in a full blown tantrum and being 20 minutes late for nursery. The worst part is that when we actually arrive at nursery he runs off and leaves me at the door! He goes to nursery Monday, Tuesday and Friday afternoon. Normally on a Monday, I'll pop into town and do some food shopping or potter around the shops. And then Tuesday I will try and get a few things done in the house but most of the time I end up playing with Alba or fighting to get her to have a nap! Fridays, Rich is usually home from work so I'll take this time to try and get the housework done so the weekend is ours to do what we want.

The nursery run tantrum.

We swapped the kids into the bigger room over the weekend. I was all excited until we'd finished and then it hit me that Alba wasn't in our room anymore. Jacob went into his own room at 3 and a half months old as he used to wake at the tiniest sound and would thrash about in his Moses basket like a caged animal. So with Alba being 8 months old, it's alot later than when Jacob left our room. It's been tough as I can't leave Alba to cry for very long as she would wake Jacob and vice versa. We've had one of them in our bed every night so far. Hopefully they will get used to each other soon. Bedtime is a nightmare as since Jacob gave up his dummy, he will not go to sleep unless someone is sitting with him, and Alba has always needed someone to stand with her otherwise she screams until she is sick and choking. Everyone says about letting her cry it out, but I have tried it with her and it is awful. She is relentless. And I can't bear to see her in such a state. With Jacob, controlled crying was amazing. A life changer. But again, I tried to leave him recently to go to sleep on his own and he got into such a state. And then it occured to me that there will soon be a time when they won't want to be cuddled at all, or have snuggles in our bed. So I decided that the back aches and kid dribble all over me is worth it. And I'll cuddle my little people to sleep if that's what they want.