Monday, 30 November 2009

I'm going on a date!!

John and I are going out tonight, without any kids!! I don't think we have been on a date for about 8 years. When we lived in Leeds there was nobody I would leave the kids with (I didn't know Sarah Harrison then :-p) and as soon as we moved back Ted was diagnosed.

We are going to the cinema to watch 2012, and John has booked us the "posh" seats at the back (I use the term posh lightly, the cinema is in Basildon!!) and I may even let him hold my hand :o)

Friday, 27 November 2009

I fear for my sanity!

I have decided to take Ted every friday to soft play. He loves it so much and it is fantastic seeing him doing "normal" kid stuff. To go somewhere they don't know his history, and don't realise he has a central line fitted. I LOVE his port-a-cath compared to his Hickman line. It has given him his life back!

Wednesday, 25 November 2009

Ted's story!

I have just put Ted's story on a group I belong to, for parents with seriously ill children, so I thought I would share it with you all too!

Ted's diagnosis is infantile acute lymphoblastic leukaemia.

It was very frustrating getting a diagnosis for Ted as he was so young when he first started developing the symptoms.

He started off with a chest infection at the christmas time, and from then on seemed to get quite sickly, and have ear infection after ear infection. He was never without one.

He started to get very pale, and of a night time especially would start screaming. He was 5 months old at the time.

He was already cruising but very quickly started to fall and hit his head a lot, then he stopped crawling and eventually he couldn't even sit up. He just lay motionless on the floor.

He had lumps on his head and neck, and his skin became completely opaque. He had no defining colour in his lips tongue or ears. It was all just white.

During this time I took Ted to the GP every other day just about. He kept telling me I was far too worried about him and really he just had an ear infection.

I remember telling family how relieved I was it was just that, but deep down I knew he was dying. The screaming would last all night, and if I tried to pick him up to comfort him he would scream more.

I feel guilty now but I began to resent having a 3rd child, because the doctors were telling me he was naughty, and I was neurotic. One gp told me to lock him in a room and ignore him! When I told him I couldn't do that, he slammed his fist on the desk and told me I would be a slave to him for 40 years or more!!

I begged them to test him for leukaemia, and they said no!

People would stop me in the street to say hello to him, and I would be screaming inside "please tell me he looks ill"

Why could nobody else see it!!

I asked DH (who was just as anxious as me) to take a day off work and we went to see a locum gp. She agreed he was pale, his liver and spleen were enlarged and his heart rate was extremely fast. She indicated he was anaemic, and I knew then he had leukaemia.

He was a fully breastfed child by a healthy mother, he shouldn't be anaemic.

She sent him for a blood test at the hospital. When the nurse took his bloods she said the result would take a week, and I knew in my heart he didn't have a week to live.

Within 2 hours they rang and asked us to go back as something had turned up, and from that minute on my world, and that of my older kids fell apart. I was uncontrollably sobbing, I was desperate because I knew he had cancer. They didn't have to tell me.

I remember my dad telling me to calm down as my then 8year old needed me to reassure him. I couldn't do it, because I needed someone to reassure me.

Within 24 hours he was in Great Ormond Street, had his first surgery and chemo had started. 90% of his blood was cancer and he had the disease for an estimated 2 months. About the length of time I had been taking him to the gp.

I remember lying to them at GOSH about how long he had been ill because I was afraid if I said how long he had been ill they wouldn't help him. I told them it was 3 weeks.

He has been an in patient between GOSH and our local hospital for about 19 months.

Initially we were given a survival rate of 90% but because of his type of leukaemia it dropped to 50%. I was distraught

He has had every infection known to man, which has contributed to his lengthy stays in hospital. It has been a huge strain on us all, because I feel I have missed out on so much of my other kids. Ollie was only 2 at the time, and she started school in September.

Ethan is very anxious about Ted dying. They have befriended a lot of children at Great Ormond Street and sadly, lots of them have died.
The day of diagnosis Ethan drew a picture of the earth, inside which he wrote mum dad Ethan and Ollie and outside the earth he drew a star and wrote Ted's name in it.
He asked his Grandma, would Ted die that day or would it be the next week. He started pulling his hair out quite severely, until he was completely bald at the front.

Ollie has found it hard not having mummy around but hasn't taken on board the implications of Ted's illness.

It has been very distressing as a parent because you have NO control over the disease, or infections. We have come close to losing him a few times now, and he has had a stay in PICU at GOSH as he developed septacaemia.

He has had about 5-6 months infection free now, and he has really come on development wise. He has grown, started talking, eating and drinking (which he never did he was NG fed) playing, learning his colours.

He loves being a little boy and now he has had a taste of freedom he would find going in as an inpatient really tough.

He goes once a month for an infusion of immunoglobulins, he has chemo at home everyday and will for the next 5 months, and the nurse comes to our home once a week to take bloods to check he doesn't need a transfusion, and that the disease hasn't come back.

Sunday, 22 November 2009

Church pyjama party!

Ollie and Ethan were taking part in a presentation at church today, so we could NOT be late. Infact, we had to be a little bit early!! Eeek, I don't do early often!!

Church starts at 10am and they needed to be there about 10 minutes or so beforehand. Everything was going great, Eleanor woke at 7am for a feed which meant I had plenty of time to get along with everything else.

You know, the everything else you should really do the night before but I am too disorganised to be getting on with.
After bathing Ollie, washing her hair *pain* and ironing the clothes, we got them all ready. We were running beautifully on time and all we had left to do was to sort Ted out.

Good bye harmony!

For some reason, unbeknownst to us, he woke up incredibly grumpy. He is a little bit under the weather since his swine flu jab and he was just being completely uncooperative.

John took Ted's pyjamas off and he started to go in to a complete meltdown, about a 7 on the Drummond scale, but it was ok because he was wearing his favourite red shirt today.
It was a struggle, but John managed to get it on....meltdown level now about an 8.5!

When he realised he had lost and the shirt was on, we went in to what can only be described as a cataclysmic event, so back on went the pyjamas, and robot slippers.

By now the whole schedule had gone to pot, and we managed to scrape in to church about 10.03am just after the opening prayers had started!

In my rush to be organised I grabbed a choo choo train (Thomas) which nanny had bought last week, in a bid to keep Ted entertained during the presentation. *note to self* Check beforehand, that quiet toys for church don't actually have working batteries and a whole range of phrases to be heard by anyone sat in a 1 mile radius!!!

The kids did well, and in Ollie's typical humble self thought she was great....and beautiful to boot!

Saturday, 21 November 2009

Swine flu jab.

We were all booked in for our swine flu vaccinations on thursday evening. It was requested by Great Ormond Street that due to Ted being in a high risk group the whole immediate household have them.

I was ok with that, we all have the seasonal flu jab for the same reason.

We decided Olivia should go first because she has a real fear of needles, so didn't think it fair for her to sit and watch anyone else go first and get herself more stressed out.

John took her in to the nurse by themselves and we waited outside, to see if that would help her not be so nervous. Alas, she started screaming the minute John's hand was on the door handle. She sat screaming whilst the nurse asked her name and continued screaming when she sat on the chair. I think she distracted herself so much by screaming that she didn't actually notice the needle going in.

Once she realised it was all over she screamed some more because she knew she had been given an injection.

I was outside the door with Ethan Ted and Nell, and we could hear the commotion going on inside, (I think half of Essex could hear the commotion going on inside) and Ted thought it was hilarious.

He was laughing and said "Ollie screaming" Little did he know that he was next!!

He is so used to nurses and procedures, so he quite happily sat on the chair and flirted with the nurse. She quickly jabbed him in the leg and he did give out a scream and through his tears said "thank you!"
The rest of us were very brave and didn't shed a single tear!

After it was all over and we were back in the car Ollie started to cry again, she felt robbed because it was a different nurse
"and she didn't even give me a sweet, she was rubbish!!" was her final word on the matter!!

Wednesday, 18 November 2009

Soft play!

Well, I don't know what happened to my last post but it has vanished in to thin air!
I think my blog gives off some kind of vibe because the minute I start typing, the baby starts crying!

I took Ted to soft play today because I wanted to get out of the house, and my sister was visiting with my nephew so it was a good way to entertain them both.

I generally don't take Ted to places that will be busy because of infection risk, but Kids Kingdom has always been quiet during term time, so off we went!

I loved observing people there.

A little girl (about Ted's age) arrived shortly after us and she had on a very smart skirt with a little twinset. She looked lovely but more suited to a wedding than a play place. Her mum came in behind her, and she had on a jewel encrusted top with tassles at the bottom, a huge pearl necklace (of the jewellery kind!!!!) and a matching chunky pearl bracelet. She was very glammed up, and looked completely out of her depth amidst a bunch of screeching toddlers.
She also had a really big sparkly black bag. Ted was so captured by this bag, with the sunlight glinting on it through the window, that I had to remove him from the area as his sticky fingers started to have a rummage!!

Another mum didn't so much as glance in the direction of her child, but I think I would have been in denial of ownership had he been mine also!! If he wasn't launching a doll's pushchair down the slides, it was another child!

There was one solitary dad there amongst the mums, and he threw me a fantastic filthy look as I breastfed Nelly Belly under a blanket.
I figured he was offended either because he had realised what was going on under the blanket and was opposed to the breastfeeding, OR he knows my window cleaner and was put out I hadn't flashed him my breasticles!!! *blush*

As for what the mums thought about me..... probably get your hair cut, it is too long and go to the gym!! :o)

Ted and Adam had a blast, whereas I wasn't sure my nerves would take much more of them descending at quite a speed down jelly mountain! Ted is by far my most adventurous child, and seems to have no fear.
I don't know if that is because he has spent most of his life going through a gruelling chemotherapy programme and had to tolerate things most of us really couldn't even comprehend, or if he was always going to be that way.

He embraces everything with enthusiasm and has a curiosity like mine. If it is there, it is for something and he wants to know what. I can envisage him travelling when he is older and wanting to see and do it all!

Tuesday, 17 November 2009

Toy shopping!

A definite little boost for me after having a really bad day. We nipped to toysrus for some christmas things for the kids.

As I am unaware who reads my blog I am unable to say at the moment what it is that is troubling me so much, because not everyone that needs to know, does yet.

I haven't been able to collect my thoughts together properly at all today and everything has got to me. Noise, tiredness and generally anything that required me to engage my brain.

I was cooking dinner, and John wanted tinned carrots with his (he loves them). I opened a tin and decided to just shove them in with the other veg cooking, because the kids had spaghetti.

I poured the carrots and liquid from the tin in to the pan and when I looked I realised I had just opened a tin of peaches in syrup!! Ooops. It wasn't a combination he really wanted to try. I can hardly blame him though, can you!?

Monday, 16 November 2009

The chocolate game!

We had great fun playing this tonight at Ethan's request.

You need:
A hat
A scarf
A pair of gloves
A LARGE bar of chocolate
A knife and fork and....
A dice.

You each take it in turns to roll the dice and if you get a 6 you put on the hat, scarf and gloves and cut the chocolate one piece at a time with the knife and fork, eating as much as you can before the next person rolls a 6.

It is a game of frustration, laughs and unfortunately a few tears from a 4 year old that didn't like losing!

Even Ted got in on the action and quickly cottoned on if he yelled "SIX" at the top of his voice, regardless of the number he threw, he would get a reaction!

It was good fun and we all felt quite sick by the end of it!

IVIG day!

Once a month Ted has a 2 hour infusion of immunoglobulins. He has been having this now since christmas 2008.
This time last year he was so ill he could barely lift his head from the pillow. He couldn't eat so was fed via a nasal gastric tube.
He hated NG tubes more than anything else he had done to him. It didn't matter how much (or little) nutrition we dripped in to him, it would all come back up again. He was catching infection after infection and suffering from chemo damage to his gut and bowel.

It was decided back in december 2008 (when he weighed not much more than he did when he was born but was 16 months old) that he would receive immunoglobulins every month to try and help him fight the bugs constantly attacking his body.

It isn't a decision taken lightly by the medical team because it carries certain risk factors, and it is also expensive and in short supply.

As I sat in the hospital today I realised how far he had come since last year, but also how much I simply can't go back there. Not to the hospital, but to the "place" we were regarding his health. He was so ill, the week before christmas he didn't recognise who I was. I can't begin to describe how much that broke my heart. My son was starving to death because his body couldn't keep hold of any nutrition.

His end of treatment date is March 17th 2010. I long for that day to be here, but will also feel an element of fear because he has had a year taken from his treatment, and the bigger fear of relapse.
It will be over for Ted, because he is young and doesn't understand anything that is happening with him. It is just a way of life for him because he was only 6 months old at the start, but for John and me the fear of relapse is real and will always be there.
Every bruise, cough, temperature will be met with a heart it back?

Friday, 13 November 2009

Kids and the rain!

It has rained incessantly today and the two youngest have cried with almost equal resolve.

Poor Ted is unwell and exhausted which has attributed greatly to his mood. He is normally so jolly and really quite funny. Already a practical joker just like his mum, but today he wasn't having any of it!
I tried to distract him with Ethan's camera because he loves to say cheese, however there were no smiles only anger and utter frustration!

He did enjoy our trip out to lunch with Grandad, Auntie Paula, Nell and cousin Adam. He was much brighter with some company he could get up to mischief with. Grandad is also of a similar mental age (love you dad x) so they all got on great, sat in the back of the car playing "which hand?"

A more cheery Ted after lunch, back to his silly self!

My little Nelly belly is grumpy because she is struggling with her feeding. Her bottom lip doesn't stick outwards, so she is finding latching with a good seal virtually impossible. She is taking in a lot of air, and infacol makes her is a nice orangey smelling vomit, but still vomit! The girl farts and burps like an adult, which is pretty impressive as she is only weeks old. Inherited her daddy's gene for that one, I am far too much of a lady!

Olivia has loved the rain, jumping in every puddle she could find with her shoes on! I am not sure they will dry out for school on Monday, they are so wet. She couldn't see a problem herself because puddles are for jumping in! Perhaps we should all take a leaf out of her book and go and jump in some puddles and just simply not give a damn!

Ethan hasn't had as much fun, because he had to walk to swimming lessons with school and he got so drenched his coat was as if he had taken a bath in it! He is my sensible child and jumping in puddles just isn't his thing, when he could be tucked up nice and warm in the house reading a book!

I had to make a huge sacrifice today because my coat was needed to protect something far more important then me from the rain, I had to cover my Christmas biscuits with it so they didn't get wet! There is nothing worse than a soggy biscuit.

Christmas shopping tomorrow morning, can't wait!!

Taken back in time.

Sitting in the traffic, singing along with Pink after getting the kids dinner tonight, an ambulance came charging past with its blue lights glowing in the darkness.
It isn't the lights that bother me, but when I hear the screaming of the sirens I am there, 18 months ago in the back of the ambulance clinging on to my baby boy wondering why. Why did he have to get cancer, he is just a child.

Thursday, 12 November 2009

Don't panic, don't panic!

It wasn't a very good start to the day, when the dreaded words "We've slept in" were announced. It was 8.30am and the kids need to be on their way to school by 8.45am

Today was a particularly bad day to sleep through the alarm because I also had to get John to his hospital appointment just after 9am which meant we also had to get the 2 smalls dressed and fed aswell.
In a spectacular sod's law fashion, I hadn't done the ironing either. *headache*

As I flung the iron across some clothes for everyone, little bodies rushed around grabbing breakfast, brushing teeth and generally winding each other up!
We had to send their school lift on without them because they just weren't ready!
John walked them there and I dressed Ted and Nell, whilst dragging a brush through my hair, remembering to put my bra on and scoffing carrot cake for breakfast! It is good for me right? Afterall, it does have carrots in!

John's hospital went well, and he got his much needed steroid injection, which means hopefully he will be able to drive and be more comfortable in a few days.

I also managed to nip to the shops to buy a couple of christmas presents and look at a camera for me. I didn't like the one I was shown, but at least it has been eliminated from the list of potentials!

Oh well, kids will be dropped of in about 10 minutes and then it is a mad rush to get to swimming lessons. At least I haven't been bored today.

Wednesday, 11 November 2009

So, here we are!

I haven't fully decided what my blog is going to be about yet.
It will probably be a mixture, but predominantly my children and John because they are my life.
I may even throw a bit of myself in there too as we are all pieces of one jigsaw and even I know I am needed here to complete the picture!