Billy's birthday

Not long after we came out of hospital it was Billy's 4th birthday.  I wanted to make it the best birthday he had ever had.  I had bought a couple of presents before he was diagnosed and you need to buy things when you see them on offer!  He was very excited about it and as he was managing to go to school every afternoon that week, my friend Heather and I went into town to get some bits. 

I wanted the whole room to be bright, exciting and fun.  I wanted from the second he woke up it to be special and him to be thrilled and happy.  I must admit I wanted to spoil him rotten to make up for all the horrible nasty things he has been going through.  Make things all happy and amazing and for just a short while for him to be able to forget that life was different and that he had leukaemia and just be a little boy who's birthday it was and have some fun.

Although I couldn't have the party that we had booked as it was at a farm and it was to much of a risk for Billy so I decided at very short notice to do a little party for him at home with some of his very best friends and family.  I thought i would try and do it all as a surprise just to make him feel extra special and extra loved.

The steroids were starting to really kick in and Billy had started to put on a bit of weight and also wasn't sleeping well and got very cross or upset easily so I thought if I could make this day extra special it might help him all round.  I bought a couple of big helium balloons to put in the lounge and some banners and bought some party food and made others.  AS he was Ben 10 mad I found an amazing cake at Tesco with some 'flare' candles.  Billy was obsessed with party bags so I made some for his friends that were coming.

Then I went present shopping.  I know I went a bit over the top but I think one of your first instincts in a situation like this is to make everything good and better for them.  I was helpless making him better that was in the hands of the doctors but I could buy him presents that would provide him with enjoyment and make him smile so I spent a small fortune in toys r us.

I even got him a blue DS with some money from my grandma that she had given me for my birthday and Billy for his.  This may seem a very grown up present but it has been a godsend for the hospital.  It has killed time, taken his mind of what is happening and just helped him exercise his mind.  It goes everywhere with us and has been worth every penny.

The night before his birthday Billy struggled with the steroids to go to sleep so it was very very late by the time I got to put things up but it was so worth it to see his little face in the morning.  I had found some great Ben 10 wrapping paper so he loved that and the cards.  He became the little boy that he was before this had started.  He was full of excitement and was so animated when unwrapping his presents.  Everything was great and he looked so happy.

I had arranged it for various family members and friends to pop round at different times in the morning so he was kept busy for most of it.  He didn't want to go to school as he wanted to play but when i told him he was having a party he was reluctant but went in.

He had a few friends round and he loved it, they had party food and played and he had so much fun.  It was great to see him being the way he was.  Just for one day he managed to battle against the steroids and be a normal little boy again.  What a star!!

Back to School

Hopefully you have worked out from my various posts and tweets and earlier blogs Billy is a tough little fighter.  This was proven to me yet again when just two weeks after he was diagnosed and a week and a half after treatment was started he felt ready enough to go back to school.  Proud wasn't the word for what I felt about it.  He was outstanding and so brave in wanting to go back.  Billy was only 3 but we have a school that has a nursery year where children go from the september after they turn 3, they only go for 2 and a half hours a day but it was still good for him to go back and see all of the other children and try to be normal.

I had spoken to the teachers and teaching assistant for his class and also they had spoken to the hospital and had basic training from the peadiactric outreach nurse. One good thing is that Billy had been attending school for 2 terms already and the teacher and TA knew him well so hopefully would pick up on any changes to him.

Billy had missed 2 weeks of school whilst he was in hospital but the doctors were happy and they thought it would be a good idea for him to go back.  I was so so nervous.  I had visions of him picking him up and he would have picked up all kinds of bugs.  What if he got really ill by going back to school, should i just keep him off for a couple months and make sure he couldn't get any bugs?

I went through my fears with Pippa who was brilliant.  She said these were the fears any parent going through what I was would have.  She said I couldn't wrap him up in cotton wool, he could pick some of the bugs up from anywhere, any visitors coming round to see us could have a bug so what was I going to do, stay in and not go anywhere or see anyone or let Billy have a bit of normality?  She even pointed out he could pick something up at hospital which we had to go to.

She also made me see that it was better for Billy if he was well enough to go to school and see all the other children,  It would help his self confidence and make him feel less like he was different with the changes to him with the treatment.  It would also help the other children accept things more eaily as they would get used to the gradual changes as opposed to him being off for ages and going back looking totally different, especially with his hair which would come out over a matter of time.

I knew what they were saying was true but it still didn't stop me worrying.  I had just found out one of the most worst things possible about Billy and now I was letting him be 'taken' away from where I could protect him.  I admit I was scared and I was so so worried that if he got ill it could kill him.  This may seem a bit over the top but I had no idea what was going to happen if he got chicken pox or anything else at all.

That first afternoon back I made sure he had eaten and drunk well, made sure he had enough clothes incase he got could and packed a bag with his blue book, thermometer and other bits.  I drove him down rather than walk cause I was so scared about him getting cold or getting germs!  When we got to go school the other mums at the gate were lovely and the kids were pleased to see him.. The teacher and TA were great and made Billy feel right at home straight away.  I thought he might be a bit clingy but he was fine.

Walking away and leaving him at school felt so so odd.  They had promised to call me if anything happened or if he felt at all ill.  He was still very embarrassed about his port and he didn't like anyone seeing or touching it and the school were very aware they needed to be a bit careful of the port and that it ws still healing.  I knew they would look after him, but there was still a nagging doubt in my head incase I was doing the wrong thing.

Its one of the things they tell you about, the guilt, the blame.  When I first read it in one of the leaflets I was sure I wouldn't let it effect me but it does.  I felt so guilty for everything, was it my fault he has leukaemia, had I done something that had caused him to develop it?  And now was i doing the right thing in letting him go back?

I was waiting for a phone call the whole time he was there.  But one didn't come, when I picked him up he was so excited full of the joys of being back.  The teachers said he had a brilliant day and was a joy to have back.  It seemed to have done his confidence a bit of good and he had enjoying just being a child not being a child who has leukaemia.

Maybe things were going to go back a bit more to normal.

Getting used to our new life..

As the week went on we began to see how much our life would change.  I had to get used to the new medicines, how to give them when to give them.  We had a lot of hospital appointments for chemotherapy, another lumbar puncture and just for a check up.  It is weird how you start to adapt quite quickly to the changes.

You begin to learn where all the wards are, who the staff are and what all the different names for the medicines are.  It was so strange to be back learning how to look after your child all over again.  I began to quickly work out Billy's little ways of wanting things to be done to make things easy for him.  I could tell how scared he was, all of a sudden he had all these people looking at him, sticking needles in him and giving him funny tasting medicines.  I hope that I did manage to try and help him with some of his fears and make the time as easy as it was possible to do.

One good thing is the hospitals have play rooms which are full of every kind of toy imaginable, from computers to games consoles to jigsaws to cars.  Billy was fascinated with new toys and it took his mind off of some of the nastier sides to hospital visits because he had the playroom to go in and have a look at all the new toys.

I was getting less scared of giving him the medicines and making sure he didn't have a temperature.  Every day my confidence in being able to look after him well grew.  I am not saying I was 100% sure of everything but I wasn't as scared as I was when we first came home.  Billy on the whole was quite co-operative with taking his meds and letting me do temperatures.  He did have times though when he wanted some control back over his life and refused his meds.  That was scary and so hard to cope with, I knew how important it was to get things done the right way.  We started a sticker chart where he would earn rewards for taking meds or having his temperature done which seemed to work really well for us.

All of the staff in the hospitals were great.  They could tell that as it was all new to both of us we were both a bit scared and they did everything they could to make us more relaxed and confident about being in.  They explained everything and had great ideas with how to do things to make life easier for us.  They didn't mind me asking lots of questions and were so patient with showing me how to do things and showing me again!

As well as the local based community nurses there are social workers and a paediatric oncology outreach nurse from Piam Brown who are assigned to you.  Our poon, Pippa was amazing she is really down to earth, approachable and honest.  I felt that there was nothing you couldn't ask Pippa.  She also got in touch with Billy's nursery and school and was going in to train them how to cope with Billy and what to do.  I would also be involved in this just so I knew what they were told and if there was anything I felt they needed to know.

The support network was great and much needed especially when you are at the start of the treatment.  They understand you, they know how horrible it is.  They don't pretend its just going to get better overnight.  It is helpful to have that honesty.  You need people who give you a true picture of how your life will change so you can start to adjust.  They are also fab at telling you when you are doing a good job which again you need to hear.

I was scared still but I knew the help and support was there.  It is hard sometimes to ask for help, but the teams we have around us are aware of that.  They make a point of calling or popping in a lot at the start just to check on how you are.  The amount of tearful conversations i had must have made them think i was mad!!!

The new life was moving on, we had an idea of what the treatment would be like and we were coping ok so far, what was coming next though?

Changes to life

Well we were back home now but how different was our life going to be.  The medicines took a lot of getting used to but we were getting used to them.  The food cravings with the steroids were again a shock but I was getting used to that as well.  I no longer tried to do a weeks shop but went to the shop daily for what ever Billy fancied, sometimes more than once a day!  The cravings were odd, some things I had never really seen him eat before but he loved now.  It cost a fortune, when he was craving sausages and fresh spaghetti i think i was spending nearly £15 a day on food for him!

One of the changes i hasn't really got my head around was not being able to go away.  Although this was explained to me at hospital and I nodded my head and made the right noises that I understood  I don't think it really got through to me until we were home.  WE had a holiday to menorca booked, we were due to go 7 weeks after Billy was diagnosed and I naively asked if we really had to cancel it, was there any chance that Billy would be well enough to go as he was looking forward to it.  The consultant was lovely and just put it gently that he probably wouldn't and the best thing would be to cancel it.

The travel agents were fab and managed to get a lot of the money back and only a bit went through the travel insurance.  I had to sort out his swimming lessons because for obvious reasons, the port, lumbar punctures etc he wouldn't be able to go for a bit.  The manager at the pool, Mel,  was brilliant.  She told me not to worry they would hold his place until he was well enough and I wouldn't be charged, how lovely was that?

I had to sort out his nursery, who again were fab and didn't charge me full price.  I had a birthday party booked for Billy at a local farm park.  They were the only people who were difficult and to this day they still have a half payment for his party.  As Billy is very susceptible to a bug called crypto sporidium which can be fatal to immniosupprssed patients I was advised not to have it till he is better.  He ended up seriously ill after getting crypto sporidium through a school trip so I won't be having it there and I think he will be too grown up for it when he is finally allowed.

I had to get used to travelling with a bag again for billy, like a baby bag when they are younger.  It had to have his blue book, meds etc just so if anything happened I would be able to get him the right care he needed.  It was a scary thing having to check we had things every time we left the house.

I was also petrified of taking him near to many people, we popped into town briefly and the supermarket but tried not to get him near anyone in case they had any germs he could pick up.  I still wasn't 100% sure what everything could mean to us so was slightly paranoid about everything and anything.

Things would get to be routine but those first few days were really shockingly scary.  I was scared of everything I literally wrapped up Billy in cotton wool.  If is was slightly cold he had a hat scarf and gloves on, bearing in mind it wasn't very cold at all, it was may!  If he had a temperature that may have been at all warm I had to check it every ten minutes!  To be honest I was probably a bit of a nervous wreck, god knows what people must have thought about me!

I made sure I ran the cold water for at least 30 seconds before I filled a glass for Billy, rigidly stuck to diet advice from the hospital and did everything that they told us.  Again it was like having a new baby again!  I think even Billy felt a bit suffocated by me asking every ten seconds if he was ok.  I was determined he was going to get better whatever it took.

Hair

Now as I said before we were told by the consultants that Billy would definitely loose his hair.  It wasn't something he had really been bothered with before.  He never had much hair at all until he was nearly 2 when he had his first haircut.  I used to keep in quite short because he liked it that way and he looked quite smart.  I used to take him to the barber and they did a grade two back and sides and longer on top. 

He was quite upset when he was told his hair would come out.  I saw him looking at other children on Piam Brown who had lost hair and it seemed to bother him a lot.  When my dad said he would shave his off to match Billy's when it came out he was inconsolable.  He just kept crying and saying don't take my hair away.

Everyone who came  in to visit always asked the question would he lose it.  I had to tell them out of earshot yes he would.  I decided that when his started coming out I would dye mine bright colours.  A couple of my friends said they would do the same to support Billy as well.  Billy was at that age where kids say things without thinking and I was worried what this might do to him if another child said something about his hair.  It seems quite a minor thing with what else he was up against but I didn't want anything making it even harder for him.

The first morning we were home something was on the TV about hair and it made Billy upset and question things again. Right well there was only one thing for it.  I packed him up into his buggy and off we went to town.  I told him we were going to find some bright hair dye, he could choose whatever colour he wanted and I would dye my hair so people would look at me and not him.  He loved this idea so we went into town and into the shop I knew had the brightest colours and biggest range of different colours to choose from.

There was a colour chart and this made Billy smile, they had almost every colour of the rainbow from pink to blue to red to yellow.  I was lucky as i had blonde hair which should take the colours well.  We chose a bright pink, called cerise for me and Billy asked if he could dye his blue.  Well as it was probably going to come out anyway i thought what the hell if it makes him feel better then we will do it!

We went back home with our amazing colour dyes and I put mine on, I left it the required time and then off it came! Wow it was bright.  I loved it, Billy loved it. I was 100% sure that no one would be taking a bit of notice of Billy's hair when mine was cerise pink.  Billy changed his mind as he was a bit scared of having his dyed but it didn't matter.

From day one I was very pleased of my hair, it was a small thing I could do to make Billy feel better and that was the important thing, trying to help him anyway I could by helping him feel happier.  When we went out and about I got some comments, the vast majority of them positive but once I explained why I had done it everyone was full of praise.  I always remember one older lady in sainsbury's saying to me she loved my hair and she wished she was young enough to do it.  When i told her why I had done it she was so lovely it overwhelmed me.  It just showed how little things could really touch people.  It was also a great conversation starter and I spoke to lots of people I probably would never have done.

My friends who said they would also do it were first of all a tiny bit annoyed for me doing it without them but once I explained why they totally understood.  People didn't really notice Billy and how he was looking just me which was the reason for doing it.

As the months went on I had pink hair, blue hair, purple hair and red hair.  People began to look and see what colour I had gone now.  Billy even plucked up the courage to dye his blue before it all fell out on the second period of intensive treatment.  Billy still says to this day that my hair was lovely and sometimes it even matched my dresses. 

It was a small way of us getting through this awful time and i must admit that it made things a slightly bit easier for us, its easy to look back at the pictures now.  I had to change my hair back to blonde when I went back to work which I hated, I really wish work would have let me keep it, after all I had a really good reason for it!  Especially at the time Billy had no hair at all.  But I think our plan worked, the whole time only 1 child commented on Billy's hair, or lack of it but most of them commented on mine!

It must have helped at school a bit, I didn't have to explain to new parents as others did when they asked about the crazy hair colour woman!  One positive thing that we found that worked for us and when he is given the all clear believe me I will be taking time off work and the pink hair will be back!

Waking up at home!

Saturday morning, the first morning in nearly two weeks we woke up at home in our own bed.  How amazing was that?  No hospital smell, no hospital noises.  I could wander round in my pj's without having the worry that I was going to scare someone!  It was amazing to have a cup of tea without having to pay for it.  For the first few seconds when i woke it was like everything was back to normal and everything was good in our world.  When reality it it was different though.  I remembered what had changed in our life.

Billy had slept quite well, he had woken a couple of times, think we were both used to being woken in the night for obs.  As soon as he woke he was starving, and I mean starving.  The steroids were doing their thing.  He had a boiled egg and soldiers, milk, ham and more toast.  Within an hour or so he was hungry again so he had a muesli bar.

As it was the weekend Billy had to have antibiotics as well as steroids.  Every weekend right throughout his treatment Billy will have antibiotics called septrin.  He is given this to prevent an infection that children on chemo are prone to.  He told me this medicine was quite nice and tasted like banana milkshake.  To this day that nickname has stuck and we call in the banana milkshake medicine. It felt weird going the medicines but Billy was taking them easily and I seemed to be getting the hang of them.

We had a lot of changes to routine to get used to, his port site had to be checked and made sure it was clean and he had to take care with it for a while.  Although we were due back to hospital next week it was still really scary in case something went wrong.  I was so apprehensive things would go wrong I was a bit of a nervous wreck.

My friend Debbie came round to see us and see how we were settling in.  She was just what I needed, she caught me up on some of the gossip I had missed and she brought some treats in for Billy so he was made to feel special!  He loved having people round to see him and was telling them all how pleased he was to be home.

It was noticeable how the steroids were affecting Billy.  He was changing a lot, the weight was starting to go on as his appetite was growing.  It was so hard to buy food as his tastes were changing.  He had started to become cross quite easily and would get very emotional about the silliest of things.  He had always been happy so it wasn't nice to see.

I had all kinds of mixed emotions, I was pleased to be home and I could now see that the treatments were doing something to him.  On the flip side I was worried, it even used to cross my head that was I doing the right thing for him?  I knew I was but it is hard to watch your child going through injections, IV drugs, anaesthetics and other things.  It is heartbreaking to watch and comprehend that the only way they will get better it to go through some pain and a lot of discomfort.  Your first instinct as a parent is to protect them and stop them hurting but in this case all you can do is watch. 

One of the good things being at home was if i did want a cry it was easier to do it so Billy couldn't see.  I could hide away in my room, cry in the shower or other things.  I know that things were going to be hard but I knew we had it in us to beat this.  We had gotten through other bad things that had happened and I knew we could fight....

Going Home

After 11 nights the doctors decided Billy was ready to go home.  It was a friday so we would have the weekend with people around and no major treatment.  I was petrified.  I never thought I would be scared to go home I thought I would be so glad to see the back of the hospital I would be breaking the doors down to go home!

This was the day that Billy's lovely teacher and TA had come in to see him and make him feel confident about going back in.  They brought a lovely card that his class had made and there were lots of pictures of the other kids.  Billy loved it.  His teacher and TA were both so wonderful, they obviously loved him and were so positive around him.  We all had a little cry as well.

Billy had started to change a bit, the steroids which he had now been on for a week had started to effect his behaviour, eating and weight.  He had become very stroppy, easily getting cross and emotional whereas before he had always been a chilled out boy.  His eating habits were very strange, he was eating so much, weird combinations of things too, things that he had never eaten before he was wolfing down.  This had an effect on his weight too, he had lost a bit when he was first diagnosed and treatment started but the weight was going on again well.

The day he was due to go home I went with one of my wonderful friends and did a big shop in our local supermarket.  Billy at this point was craving ham and cucumbers so I brought that, yogurts, fruit, veg and treats.  I thought I had everything we needed.  It felt weird going back to normality and doing things like food shopping again.  Just getting out of the hospital buying groceries and seeing people felt odd, in the hospital we were so cocooned against everything.  The outside world seemed so bright and noisy!

Seeing people I knew out who knew about Billy was another eye opener.  Some people were great, came over and chatted, talked about Billy, gave me a hug and offered help.  Some literally walked the other way and didn't know what to say to me.  This would get better but to start off it upset me a bit as I needed people to support us.

At 5 o'clock the doctors and nurses were there to discharge us, we had a huge bag full of meds and nurse Ali had written a reminder poster for me to get the meds right!  Not that I am stupid but it felt better to have it written down in black and white.  Waving goodbye to the staff felt so weird and actually quite emotional.

Then we were out of the hospital and in the car on the way home.  We got in shut the door and looked around, both of us didn't know what to do to start off with.  This is the first time we had been just us for nearly 2 weeks.  Billy was pleased to see the TV so he could watch Ben 10 and other cartoon he liked!  Not long after we got in he was starving again! this was something else I was going to have to get used to!

It was a lovely sunny evening so I opened the windows and enjoyed the fresh air.  We were both exhausted to decided to leave going out and about till next morning.  Both of us had a bath, how amazing did it feel to have a bath then chill on the sofa?  It was total heaven and the quietness after the hospital was great!

I made sure Billy had the evening meds, the first time was quite scary but nothing as bad as I had built it up in my head!  In fact I was quite proud of myself, I had managed it without panicking and Billy had taken it just fine.  Maybe being home and keeping the meds and other things right wouldn't be so hard after all.

Our phone rang and rang, it was lovely to know people cared about us and we had all kinds of offers of visits.  In the end we just had a couple of close Friends round for an hour and it was nice to see them and be normal and have a cup of tea and a chat!

Then it was bedtime.  Heaven my own bed!  I was so so looking forward to it and so was Billy.  As the steroids cause sleep problems he didn't go straight off but watched TV for a while.  Finally he fell asleep! I thought I would be straight after him but no, my mind went into overdrive.  The tears came and i phoned my friend.  Just being able to talk helped.  This was scary.  Billy was home but he has leukaemia.  That word again Leukaemia.

My head was so messed up, i was so scared and this time properly on my own.  All the worst cases scenarios were going through my head.  To add to it I was so worried about getting the meds wrong or Billy dropping them and me not knowing.  I was worried sick.  I was on my own too.  It was just me I was 100% responsible for him.  Would I be able to do this.  I wasn't wonder woman I was just a normal woman. 

The tears and fears were there.  It seemed to hit me all over again.  The blame questions, was it my fault, could I have stopped him getting it etc ? They were all in my head.  Suddenly I was wondering if we should have stayed in hospital.  Luckily my friend calmed me down and made me think rationally about looking after Billy.  I had done tonight's meds

It was like being a new mum all over again.  I remember someone saying just do things the way that works best for you.  Thats what I had done when Billy was a baby. So within reson I would try that again with this.  After all apart from the leukaemia we never really had any problems.  Reassured I managed to try to sleep...