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.

Where has my son gone?!

Since Sunday, it is like Jacob has been replaced with a different child. He has been so grumpy and clingy and totally of his food (still). He is normally always so happy, but since Sunday afternoon we have had tears and tantrums aplenty. And I am exhausted. He has just gone down for a nap after a slightly better morning than the last 3. We've been up at 5am, throwing milk across the living room, screaming blue murder at the front door because he wants to go out. Bringing me his shoes because he wants to go out and dragging me to the back door because he wants to go out. The only thing I have taken from all of this is that he obviously hates me and wants to move out. He now knows to take my hand and take me to where he wants to go. And if it isn't the front or back door, it's to the cupboard under the stairs where the hoover lives. Because he is totally obsessed with our Hetty the Hoover. But if I turn it on, all hell breaks loose. It has been very hard the last few days, and by no means am I complaining, but we have been quite lucky to have a happy, sociable boy pretty much all of the time. So to have Jacob clinging to my legs and hanging off my tshirt has been quite difficult. I can normally do the washing up or make a cup of tea or clean up after lunch, but the last few days, this has been totally impossible. So my house looks like a bomb has gone off, there is porridge all over the walls, Wotsit dust all over the sofa and juice all over the floor. By the time Rich gets home from work, I am climbing the walls. I haven't even bothered to turn off cbeebies when Jacob finally settles for a nap. I actually went back to sleep yesterday for half an hour because I think I may have cried had I not caught up on a few winks. A few of my friends are having similar troubles with their little ones at the moment and they are all very close in age. So it may be a phase, or it may be a coincidence! Originally I thought it was teething and he had the nice big molar through at the end of last week, and it might still be, but it has certainly been a testing few days. We went to Jo Jingles on Monday as it has now started up again after the school holidays. I was very close to not going as Jacob was so miserable but I thought a change of scenery and some socialising might do him some good. We met my friend John there with Darcie as they are little Jo Jingle's buddies. He was still quite clingy and didn't really go off to play on his own like he normally would, so I spent my time being pulled around by my finger and in the ball pit with him. And let me tell you, there is no glamorous way to climb into the ball pit at Wild & Wacky. Jacob didn't really participate in Jo Jingles except for when the maracas came out. Otherwise he was trying to escape through the door. He did eat all of his lunch though which was the first time he has finished a meal for about a week. He has been totally off his food again, only eating his fruit still. The Innocent smoothies for kids have proven a good buy though, as he has been inhaling them. So that's something! 

 Possibly one of the only (half) smiles from Monday...

Ball pit buddies.

 Grumpy guts in his awesome hoody from Next.

Smoothie monster

We had quite alot of laughs and smiles this morning and he even ate all of his porridge, by himself with a spoon! So I'm hoping Jacob is feeling a bit better now. I did start to panic a bit as he wanted his hand held everytime he walked, that his vision in his left eye may have changed and the tumour has started to grow again and affect it. I'm pretty sure that's just my mind going into overdrive. But when he's normally so happy, I do really worry when he is so unsettled. Everyone just says it's kids and he's just coming into himself and seeing what he can get away with. So I am really hoping that's the case. At 15 months, this is definitely the hardest but also the most fun age so far. He is so so funny at the moment, and doing new things everyday. This morning, he actually drove his Toot Toot Drivers cars around the track and he has also started to try to build his Mega Bloks. I've also started to let him use crayons and we have managed to keep it on the paper so far! Oh, and in his mouth obviously. I freaked out but Rich assured me they are non-toxic. So all I can expect is some multi-coloured nappy contents! 

Another new trick he's learned recently...dunking!

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