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.

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!