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!!!

Cousins and heatwaves.

After the amazing news on Wednesday, I woke up still smiling Thursday morning. I work Thursdays for a few hours every week. Just so I have some grown up time really. I absolutely hate leaving Jacob, even if it is only for 4 hours. I just love being at home with him. I dread going into work. Once I'm there, I'm fine. There's still a few of the team that were there before I went on mat leave, and it's like old times when I work with them so I feel like me again for a little while. Not mummy Char. Getting out the door for work is always chaos, no matter what time I start. I have always been a bit of a flapper and need to pee ten million times before I leave the house. My mum said when I was a kid, if the house was on fire she's sure I would have to pee before getting out. I like to make sure everything is sorted for Jacob for the day, no matter who is looking after him. It's normally Rich but now and again my sister Sophie will have him. She's got my nephew, Teddy who's 3 so I really love it when she has him because it's more kid time for Jacob. They're hilarious together. We are currently battling "learning to share." When we found out we were having a boy, my brother in law Ross was so excited for Teddy to be getting a little boy cousin. So they'd grow up more like friends. There's 2 years and 2 days between them. We all lived in fear around Teddy's birthday party that I was going to go into labour, but he held off for 3 days. Luckily! I don't think Sophie would have let me live it down if I'd had him on Teddys birthday! We were all a bit nervous when Teddy was to meet Jacob as he had always had all of my attention, and to be honest, I did love to spoil him. I'd get in trouble all the time for buying him presents. It's obviously slowed down since Jacob was born as maternity leave didn't pay quite as well as full time work! Teddy looked so confused when he came to meet Jacob in hospital. And I think it was a little bit tough for him to have to "share" me. But because Jacob is now interacting more, Teddy enjoys him so much. We can leave them to play together now. He really looks after him and I absolutely love it. He knows about Jacobs eye too. We didn't really teach him, but it shows how much kids take in. He used to say "Jacob's eye poorly." And point to him. And if I show him one of Jacobs artificial eyes and ask him what it is, he goes "Jacobs eye!" And then puts it over his own eye. Which he finds absolutely hilarious. I'm really glad they've got each other growing up. And because we see each other so often, they'll probably be more like brothers, causing havoc as little rogue teenagers!!! I'm sure I'll have parents knocking at the door when they're a bit older telling me they've done something or another. I really hope that doesn't happen though!

Teddy & Jacob, Day 5. 💙

Yes, we dress them in matching outfits!

Feeding the duckies. 

Like most parents, I absolutely dread it being this hot. I love it but it just makes normally happy babies turn into miserable, sleepy little bags of grumpiness. And sleep normally goes out the window. It was nearly 35 degrees where we live yesterday. And it was so uncomfortable. Even for a heat fiend like me. I had everything out in the garden, paddling pool, water table, tunnels, slides, the lot. Half of my garden stays shaded for most of the day so Jacob can still enjoy being outside. I'm a bit obsessive with the sun cream though, reapplying his factor 50 every half an hour. Which was a massive fail as it made his eczema flare up like crazy. Excellent parenting choice! Although I'd rather he wasn't at risk of getting burnt. Jacob wasn't too bad in the heat yesterday, although he has a massive fear of his paddling pool. Which is weird as he absolutely loves the bath! Towards the end of the day, the water in his water table was so warm, I turned round to find him trying to climb into it. The kid obviously needs a hot tub! 

I don't know about anyone else, but eating seems to go out the window when it's this hot too. He is normally a brilliant eater, but yesterday it seemed food was not his friend. The only thing he seemed to really want was these "Suckies" yoghurt pouches. I think he ate about 4 by the end of the day! Everything else he fed to the dog. Naturally, I dreaded bedtime. His room was nearly 30 degrees (thanks Gro-Egg!) and he's a very warm baby anyway. Someone said the best thing is a cool bath before bed and put him to bed in just a nappy. So I did this, expecting an extreme kick up once he was in the cot. But no, straight to sleep he went. Thinking it was too good to be true, I clock watched for about 3 hours, no wake ups. He slept through until 5.30am! Could not believe it. He rarely sleeps through anyway, so I really expected a bad night with the heat. Saturday is my lay in day too, Rich gets up with him on a Saturday morning, so today I feel much more refreshed than normal. So I recommend a cool bath, just a nappy and clock watching on a night like last night! Seems to do the trick. (I'm sure I won't be saying this tomorrow morning because it was actually just a coincidence!) It is still so muggy today but I'm hoping Jacob isn't too much of a grump today. He is napping at the moment and after last nights storm, the garden is soaked so it looks like a Frozen marathon is happening today. Again. 

 Homemade hot tub.

Have a good weekend!