A tough few weeks.

I was no way prepared for how tough the last intra-arterial chemo aftermath was going to be. When we were discharged from hospital on the Wednesday, I thought "Yes! All done, my little beast can get back to normal." But I was wrong. Since the Thursday, so nearly 3 weeks ago, Jacob's vision has quickly deteriorated to almost nothing. We've had so many bumps to the head, I've lost count. The worst being Jacob riding full speed on his scuttlebug into a concrete post outside our house. He's got a lovely, big graze on his forehead as a souvenir for that one. He screamed nursery down when I dropped him off on the Monday after. And he has NEVER cried. Why is it you feel like the worst mother ever when that happens? Anyway, he woke up on the Tuesday even worse so I kept him home for the day. Rich took a days holiday from work to stay home and help me as Jacob needs constant supervision. He still thinks he can run around like usual. His vision was poor after the first cycle, not the second, so I thought this would be a breeze. Nope. It's just heartbreaking to watch him feeling his way around. His depth perception has gone, so he's missing steps and kerbs too. If I could give him my eyes, I would in a flash. I spoke to his nurses at The Royal London Hospital and they've said just to keep and eye on him and it should slowly return to normal but after it wasn't improving, they pulled his appointment forward a week to last Wednesday. I felt sick with nerves the whole time, he was back from theatre quite quickly and wasn't too distressed which is always good. The doctor finally came to see us about 3 hours later, and said that Jacob's optic nerve is extremely swollen and he has alot of blood spots in his eye. They injected him with yellow dye to see how the blood flowed and it was quite restricted in his eye which means there isn't alot of oxygen getting to the muscles, making his vision bad as the eye can't work how it's supposed to. Jacob was an interesting shade when he came back around, and it wasn't until the doctor told us that we realised that was why! So, again we were told we will just have to wait and see what happens with Jacob's eye. The good news is that the tumour has responded "beautifully" to the IAC! Which is amazing. Fingers crossed that'll be the end of the horrible, little thing!

Jacobs consultant decided that Jacob should have a course of steroids to hopefully help speed up recovery on his eye. He is meant to have them for a week after IAC but it was in liquid form and we couldn't get him to take it no matter how much bribing we did. So they prescribed pills which we could crush up and put into anything. So, Jacob's been having 3 fruit shoots a day. Not the best but if it helps his eye recover quickly, I can deal with the rotting teeth after! I have managed to start putting his morning dose into his cereal which is great. We were told he would probably behave a bit wacky and have a crazy appetite with the steroids. Well, wacky doesn't even cover it. He has become a completely different child. He has not stopped crying, wanting to be carried everywhere and only by Rich. If I even touch him, he goes absolutely bananas. I think we've had about two smiles out of him in the last two weeks. It's absolutely breaking my heart to see him this way, and I keep having moments where I just cry. There's nothing we can do to make him feel better. Rich is back to work tomorrow and I am so nervous for the week ahead. I hate that I can't comfort him, and I hate that he doesn't want me to either. All I hope is that he goes back to the happy, cheeky little boy I had before all of this.

Jacob was 3 last Sunday. THREE! I can't believe it. He had an okay day, not like he would have if his vision was 100% but it was still nice. He asked for a roast dinner for dinner, Rich was very pleased! So we had family over and all had dinner and cake together. He got totally spoilt. Him and Alba had a joint party yesterday as she is one on Saturday. (Don't even get me started on that one, I've been an emotional wreck about that too.) Jacob had an okay time, he was glad to see some of his friends and they all played on his new trampoline. He got a bit overwhelmed which I expected, and he was absolutely shattered after and flaked on the sofa.

Today has been really tough again. I feel awful for Rich as he has had to take Jacob absolutely everywhere with him, to get a drink, to the toilet! It's insane. It was so draining for me when Rich wasn't home last week, and he's even worse this week so I dread to think how he feels. We have tried to leave Jacob to cry it out a little bit, but he gets in such a state and then Alba gets really upset. So we are just doing everything we can to try and keep him calm. Another side effect is that his appetite has increased, ALOT. The food that boy is shovelling away is crazy! I had to go to Tesco today to stock up on pretty much everything as he just hasn't stopped eating! I shouldn't complain as getting food into him is such a challenge. He is on these tablets until Friday, and I cannot wait for them to be out of his system and hopefully get back to normal. I miss my happy boy.

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...

Two kids is tough!

Like the title says...oh my goodness. My biggest fear when Alba was born was that she would get reflux. Jacob had it and it was absolutely horrendous. He ended up on lactose free milk and about four different medicines. I remember spending hours pacing the garden in a bid to get him to stop crying and to sleep. So, when Alba was born, I bought anti reflux bottles and a sleep positioner that keeps the baby at a slight angle. I also made sure I kept her upright when feeding and for a while after. But the reflux god had other plans. After what I originally thought was colic, a horrendous red rash, violent hiccups, sneezing like crazy after feeds and more sick than I have ever seen (out of her nose and everything!) set the alarm bells ringing. A little visit from the health visitor confirmed it all. Alba has reflux and a big fat milk allergy. Fancy bottles be damned. They don't prevent a thing! For the last two weeks, I've spent most evenings, actually most of the day alternating between crying and wanting to scream. Alba literally could not be put down until about two days ago. Literally, if I even motioned to put her down, she started this horrendous screaming like someone was yanking her limbs off. It took me hours to get ready, and I spent the best part of the morning jumping in and out of the shower, running around in my underwear or sitting on the bed crying because I literally couldn't stop holding/rocking her for more than 30 seconds. I actually started to get up before the kids woke so I could get ready for the day. Everyone would say "don't worry! Stay in your PJ's!" But I can't do that, I never have been able to. I have to get up and get ready for the day. And I have never been one to ask for help. But I definitely needed it the last two weeks. My sister has been brilliant. Coming over after dropping Teddy at school so I can get things done. Needless to say, my house looked like something off of Kim and Aggy for a while there. Alba was given a prescription for lactose free milk on Thursday and since then she has slowly gotten better. She even fell asleep in her Moses basket by herself yesterday afternoon! I had to take a photo and send it to my Mum who is on holiday because I was so excited. Hopefully the stinky lactose free milk is the answer to our troubles!
Needless to say, Jacob has had a lot of TV and iPad time during the last couple of weeks. I have honestly felt like the worst mother in the world to him. All he has heard between Alba's cries is "in a minute". During the odd time that Alba has slept for more than ten minutes, I have done my best to give him all of my attention. Everyone says "he won't remember!" which is fine, but I will. We are slowly getting back into a routine and Alba has started to sleep for longer stretches in the night. Jacob didn't sleep through and had a bottle in the night until he was about 14 months, so I'm seeing it as a bonus if she sleeps through anytime in the next 12 months!

Alba has started smiling which has been lovely! Not very much I might add, but it's crazy how one little gummy smile can make you feel better when you feel like hiding in the bathroom with the door locked! 

A few photos from the last few weeks...

We went fruit picking at a farm near my sisters house, it was so lovely! Definitely recommend it. I had never been which was mortifying to Rich as he used to always go as a kid.

Jacob had his six month oncology checkup at Great Ormond Street last month, he's doing really well and now doesn't have to go back for a year! We still have to go to The Royal London regularly and we are there this Wednesday. Jacob has now been stable for a year which is amazing! Obviously this can change at any time but hopefully not! We got the train for the first time, I thought Jacob would love it, but he clung to Rich and me for dear life. I HATE the tube, I just get so travel sick and hate the millions of people and shoving around. Basically, I'm a wimp. He was a bit braver on the way home and had a little look out of the window. As soon as we got off, he was asking to go back on. Typcal!

Quarantined!

So its been a bit of a crazy week in the Wright/Williams household. Jacobs last few teeth are trying to fight their way through his gums since the beginning of last week so when he got unbelievably grumpy, tearful, hot and just plain miserable on Thursday, we just thought he was really having a tough time with them. Friday he was very up and down again, and we had his appointment at Great Ormond Street Hospital in the afternoon for his ultrasound to check his bowels and kidneys, which was all clear and his six month oncology check up with the amazing Dr. Kingston. When I say amazing, that doesn't even cover it. She is just unbelievable. She knows everything there is to know about Jacobs condition and actually was part of the team that created the chemotherapy drug combination they now use to treat Rb. She is just amazing. She was very happy with Jacobs weight gain and as I thought, he's shot up just under ten centimetres in six months. That explains the super shrinking trouser legs!! He was not his happy self and just stood at the door crying to leave. The journey home was hideous. My step dad Steve usually takes us to GOSH as he knows his way round London pretty well, and even with his cut throughs and side street knowledge, the hour journey took two! And Jacob screamed for the last 40 minutes. He had refused to eat all day, again thinking it was just teething we just carried on with the Calpol and Anbesol liquid. Come the evening, he was still not stop crying and refused to sleep, at which point I said to Rich "I'm not sure this is just teething." He has never suffered like this with his teeth, so Saturday morning when he was no better, we went to A&E as his tongue looked swollen which obviously set alarm bells ringing. We were seen quickly and as soon as then nurse picked his hand up to check his obs, I saw the little white spots. Before the nurse could even say anything, I said "He's got hand, foot and mouth!" She just said "yep, home and rest!" There's nothing you can do for it. But as soon as I saw the spots on his hands it made sense. His little mouth was filled with ulcers. I honestly felt like the worst mother in the world. I was shoving my fingers in his mouth, running Anbesol round his gums when it must have been so painful! So since Saturday we have been battling eating, drinking and sleeping with an arsenal of Calpol, Nurofen and me cooking/making a hundred different things to hopefully entice Jacob to eat. The only thing we managed on Saturday was a spoonful of porridge. And yesterday, he ate two bananas and some cheerios. We've been looking for anything plain! Milk has been quite a life saver too. He's not normally much of a milk drinker but I think the cold helps and the milk soothes the ulcers. I'm pretty sure he's got lots of spots down the back of his throat too as he has a terrible sore throat now and didn't swallow for a few days. We went through every T-shirt and every bib in the house over the course of Friday to Sunday I think! He seems a tiny bit better today, sleep has been tough and he's had hardly any which obviously doesn't help. But he's sat next to me watching Frozen while I've been writing this which is better than the constant tears we've had the last few days. Rich and me have been tag teaming sleep, eating and trying to keep Jacob entertained. It has been quite tough. Rich is so laid back and has so much patience and can manage on next to no sleep, but I am a nightmare. My patience is nonexistent when I'm tired, and paired with these pregnancy hormones, I have not been very nice to live with this weekend. I've been sent off to sleep a fair few times! I obviously try not to be a monster in front of Jacob and I think he knows Rich is the more patient of the two of us as he has been a total daddy's boy this weekend!! I've been the wicked witch thats pinned him down and forced him to take his medicine and laying him back down in the middle of the night instead of getting up to party at two, three, four and five AM to party. I'm sure he will understand when he's better! I wish they understood when you're trying to explain the medicine will make them feel better, and sleep will make them feel better. It's been a tough few days indeed! Jacob is contagious for about a week after symptoms start, and his fever started Weds/Thurs so I'm really hoping he's better for his trip to see Santa on Wednesday! He's taken a dummy again today which is a good sign. Although he has gone without it for the last few days which I hoped would be when he gave it up. But no such luck!

 I didn't let Jacob have chocolate this time last year, so he's got two calendars this year!

 Wild & Wacky Mondays, before the dreaded virus hit!

 Checking out the fish tank floor at GOSH

 Tackling "teething."

We put the tree up! Jacob has so far broken 3 decorations! 

I've finally started Christmas shopping and we decided that we are Santa is going to get him the Toot Toot drivers train station to go with the stuff he already has. He sits for ages just pushing the cars around and down the ramps. We are going to get him one of the rugs which have the roads on too. And then he's got lots of paints, pencils and stuff like that as he likes to do that kind of thing, and draw on the walls in the process obviously.

I've spent the last week trying to hunt down the "Hulk Smash Hands" for Teddy. Nowhere has them in stock and the nearest Toys R Us that has them is Edinburgh!! And it can take weeks for them to be transfered store to store. They finally came into stock on Amazon so managed to get some this morning, but straight after I placed the order, I had a number from New York call me then straight after that, a number from Malaysia. I didn't answer and I called Amazon and they said all seems fine on the order so I really hope its a coincidence and someone from far away just wanted a chat with me! Knowing my luck, I finally found them but they're actually some dodgy knock offs! Let's hope not!!

A little bump update...

The sickness seems to have gone altogether now which is amazing! But I now have the nasty headaches I got with Jacob, and nothing helps them! They've been a brilliant addition to this weekend I must say!
All I've wanted to eat is the McDonalds cheesy dippers from their festive menu, and cakes and chocolate! I was exactly the same with Jacob around this point of pregancy. I've also absolutely loved the smell of Rich's Red Bull and have snuck a sip or two. I would drink the whole can if I could!!! I'm also at that stage where I just feel like a fat wildebeest! Nothing fits but its my birthday on Sunday so I think I may treat myself to a few new pieces!