30th November 2014 - MAINTENANCE - 16 Weeks Left on Treatment

Exactly two years ago today Alice was given her first life saving Blood Transfusion and today? 

Today we are clearing up and sorting out for Christmas, we are are recovering from 5 days on steroids and her monthly vincristie but also her 5th Birthday party with two of her cousins and four friends from her class at school.

There are times when we are reminded what Alice has been through, like when she asked her Dad why she hadn't been 3, 'Numbers go 1,2,3,4,5. I'm 4, I'm  going to be 5 but why wasn't I 3?'

or ' I've got a sore throat, like when the tube is in' 

or when we watch programmes like Children in Need ' That little girl has got cancer, I got cancer but I'm not going to die like her'

But mostly today we are getting ready to go to Lapland to visit Santa with a very special charity called Wish Upon a Star. This will be followed by our normal hospital appointment. When we get home this time we are looking forward to the school concert, Family Birthdays, Christmas, the New Year and finishing treatment! 

9th July to 5th November - MAINTENANCE Weeks 78 to 95

We haven't been writing in our blog because life has been, just Normal. 

I have done all the normal things children do when they are 4 and getting on with life. We spent at least one day a week on the beach during the summer and I saw my cousins and went to the park to play. I even went for the day to my Aunty's house in Spain to her pool! My big sister was home and she played with me and it was fun to be a family again all together.

I started in Reception in September and have been busy making friends. I have been to England to the hospital as usual and I even have a new baby cousin in England to visit.

We have been to my hospital appointments and haven't had to have lots of breaks or any stays over night at the hospital.

I have been to party's dressed up and played like my friends all do. I've even managed a haircut!  I tried to keep up with dancing but it is too hard as I am tired and busy learning at school. I am trying to walk more and have even started sleeping in my own bed at night. I am less anxious now as we get on with things like everyone else





Mum Says:
We have spent time over the last few months building up some normality that doesn't revolve around hospital appointments but around family routines like everyone else. We had to make allowance like going to the park late in the evening or early in the morning to avoid over exposure to the sun etc.

Gareth has started working shifts which brings its own set of challenges for a family used to Monday to Friday 9 to 5! There are positives to this new way of living as we have manged to spend more time together something that we needed after the stress of living apart and Alice's illness. 

We have had celebrations this summer as my parents have managed 50 years of marriage and a new niece was delivered safely into the world in August.

But I think the most positive change has been with us and the fact we are now counting down in weeks to the end of Alice's treatment.

Dancing Queen! Maintenance - Weeks 73 to77

 11th June to 8th July

Oh my goodness this month has been so much fun!

On the Friday after having my vincristine I had sports day at school. I don't normally go to school when I'm on steroids because my moods are ... unpredictable and if I loose my temper I can really hurt people, I don't want to do that at school. But this time Mummy took me to school for sports day. I did races, a beach race and a race with a push chair and a baby doll. I also did a special dance with my class. I was especially pleased with my medal!            

Joe has also gone to England this month for a school trip with his friends it's very exciting for him. I did miss him and I think he missed me, he bought me a pencil case!

I have been practicing a lot for dancing. I have danced on stage and have got a costume to wear and I have to put on sparkling eye shadow. I had to go to England to see my Doctors before I got to dance on stage in front of people.

England was exciting. I went to stay with my Aunty and played on her mobile phone. Both my big cousins were at home. I like to see them and my Uncle. I was very quick at the hospital and got to see all my Dr friends and the ladies that play with me, I even had my face painted. I had good blood tests and the sleep and medicine only gave a little headache before bed! In England I stayed up late every night and ate nice food. On my last night Nana and Grandad took me to a posh restaurant for noodles and I tried eating with chop sticks!

Friday was the most exciting day of all. I got up in the dark and left Nana's house. I got on an aeroplane and slept for a while, ate my breakfast and arrived back at home! I had to eat my lunch and go to bed ready for dancing. Joe had a 'prom' at the same time as my dancing so Daddy had to do lots of driving on Friday night.

I really loved doing my dance and wearing my make up and costume!

I spent Saturday with my cousins, brother and sister at the park. We had photos taken by a nice lady called Jessica it was lots of fun and on Sunday We had lunch with Nana and Alfred. Busy, busy, busy. It is so good having family around. The only thing that made me sad was not seeing my little cousin or my Aunty with a baby in her tummy. My cousin and uncle were both sick when I was in England.

I've even managed to fit in going to school and meeting my new teacher for next year when I start in Reception and the beach!

Mum Says: We have had a busy month and really enjoyed ourselves. It is a joy to be together as a family of 5 for the first time properly in about 18 months! You really don't appreciate the arguing, noise and never ending washing ... until you have been a time without it. Alice is growing and blossoming these days. We had forgotten what she was like before she was ill and are back to the never ending commentary on her life, loves, problems and food ... We are so appreciative of it all! Joe and Alice have both been on stage performing this month. Alice with Danza Dance Academy in Joseph and Joe in the end of year musical evening at school. He is in the Rock Band and as always made us very proud, especially when the crowed cheered his guitar solo. Toni who had managed to avoid the whole Frozen phenomenon at University is now word perfect, has sung all the songs, seen the stage show and regularly has to pretend to be Anna or Elsa as requested by Alice! It was fortunate that in Nursery none of the children really have the whole idea of competition on sports day so Alice didn't stand out too badly as she'd just had her vincristine and was a bit 'wobbly' on her feet. Alice is now excited for September and starting School proper in Inception, exception or which ever variation of Reception she is currently using.

 In contrast to last summer when Alice was just finishing and recovering from her intensification phase of her treatment this summer is set to be full of fun and laughter and things to look forward to as for next summer well, she will have finished her treatment!

I get grumpy too! - Maintenance - WEEK 69 - 72

14th May to 10th June

We have had another month without a hospital stay, although this month I have been neutropenic and a little bit anemic, I've had extra blood tests this month but I don't mind going to see my friends on Rainbow Ward, especially as blood tests don't take very long.

I am starting to have a few problems with my walking and when I go dancing I can't skip or jump anymore, not like I used to. But I don't mind because I am going to have a sparkling costume and dance on stage like my cousin. Well not quite like her because she has been all the way to Croatia with my dance teacher for a competition! But I am still excited. I can only do the show for one night because I am going to be in England seeing my Doctor and family the same week as the show.

I have also been having trouble keeping my grumps in this month. It might be because I am very tired because I am so busy. I have been trying my hardest to be good but I did draw Mummy some friends on the wall in the hall. I have asked my imaginary friend Matthew to live on the balcony because he is a bit naughty and encourages me when I feel a bit mischievous.

Both Mummy and Daddy have had their birthdays which has meant I got to make them presents and eat cake we even took Daddy out for lunch on that day we went to see a big boat called HMS Defender and I got to try on army hats and touch guns and run around. I even sat on a helicopter.

I have  been to a special Birthday Party for my friends the triplets. They were born a whole year ago when I was very sick in hospital and now we are all at home and causing trouble!

The very most exciting thing to happen this month is that my big sister is home from University!





Mum Says: Life is starting to return to normal or maybe we are used to our new version of normal. Alice has been well. We can see the effects that treatment is having physically and emotionally on Alice but hope with a positive attitude and support we can get her through this and get her back on track, if not now, over the next few months. Alice has shown such strength of spirit and determination over the last few weeks, wanting to be 'normal' dragging herself off the sofa to go dancing. Getting up and out everyday for school! She makes it impossible to be anything but positive about her future. We are also getting more relaxed about crowds and being around people with Alice having managed the beach, park and a couple of birthday parties we finally felt able to risk crowds of tourists as well as locals on HMS Defender! And to top it all off Toni is home and we will have her until September! Finally some proper family time.

My Birthday Present painted by Alice

Life is Good - Maintenance - Weeks 65 to 68

16th April to 7th May

I've made it through another month without having to stay in hospital and I don't have to have my IVIG any more, I am now clear of the Parvovirus again and I am feeling so much better.

It has been the school holidays and I've had the Grumps! I have tried to do my best at being good and keeping active and I think I did better than some other months, defiantly better than at New Year.

I have kept busy and been to the beach for a picnic, I've had my cousin over to sleep and I've been swimming in the sea at the beach another time with My Brother and his friend. I've even had the paddling pool out on hot days. The Doctor has given me special Sun cream so I can enjoy playing outside.

I have seen a new physiotherapist lady who made me do exercises and has also made me see a man who drew around my feet and looked at me walking.

I went on the trampoline at my cousins house on Uncles birthday and hurt my leg, I've not been allowed on the trampoline since I came back from England in September, now I know why.

We've had Easter eggs.

I went to Church with my whole family for my brothers Confirmation, we also had lunch together. Because I hurt my leg I couldn't walk all day when Joe was confirmed and Mummy put a bandage sock on my leg.

I've been to see my cousin dance in a show and I've been to the Governor's House with all the children from my dance school to get our certificates from the exams we did a LONG time ago! I really liked my Cousins dancing and I'm going to try EVEN harder to get to my classes no matter how tired I am.

I've been trying really hard to fill up my sticker charts so that I can have something special, Churros or noodles from a shop.

I did have to miss a couple of days from school after the holidays because some children were off with chicken pox. But as it doesn't seem to be in my class and so far no more children are off I've been able to go back in time for Pirate day!

I have worn myself out a lot of days and I've even had to sleep in the day because I've been so busy! But it has been so exciting and fun!

Mum Says: I suspect what we consider a busy month these days is the same as most of our normal months before Alice got sick. We just didn't appreciate it. Alice has worn herself out this month pushing herself to the extremes of her physical capabilities. As I assume most of the children on treatment do Alice walks like a little old lady when she is tired and this month that seems to be most of the time. She has been to see the Physiotherapist here and that has helped us to see where her problems are with walking and how to deal with them. I understand that most children who have treatment for ALL under the age of 5 end up with in soles and need some from a physiotherapist. Unfortunately she did hurt her ankle or knee or both, it is very hard to tell what she's done to herself as there was no swelling or bruising and Alice seemed to think she had to rest 3 days to get better (nobody knows where 3 days came from!?!), which is pretty much what she did and she got better! A Doctor in the making? Whilst Alice is on steroids we tend to try and avoid big social situations so we had a quiet Easter and places like the beach are ideal for her, no pressure to behave so I'm hoping we have found a coping strategy over the summer.

I found Joe's confirmation very emotional (don't know what I'll do if he gets married, I might have to stay at home for all the crying I'll do),  it gave me time to remember all the special times we've had with him and his 'rites of passage', Baptism and First Communion. It was an occasion where we missed having Toni home, still she'll be home soon and I have to find a small corner of the house to fit her in!

Long May This Continue! - Maintenance - Weeks 61 to 64

19th March to 9th April

Life has been good. I have been well and in school and have had my second month following protocol. We have even managed to go out and meet up with friends and I went to my first class birthday party! I've been on 100% of my medicines all the time and when I saw the Doctor for my Vincristine he told me that it was looking like I'm almost clear of the Parvovirus!

I missed school and caused the usual mayhem and destruction at home whilst on steroids. I find it very hard to sleep when I have them and get very tired and bad tempered, I have been trying very hard to control my grumps and keep them put away but when I have the steroids I'm not very good at managing it!

The most exciting thing though that happened this month was my trip to England and to the hospital in Leeds. It was exciting because I have been so well. 

When I actually went to the hospital it was a bit funny because my normal Doctor wasn't there and I don't get to see her very often now because I'm mostly in Gibraltar. But my Special Nurse, key worker, wasn't at the hospital either! Which did mean Mummy didn't talk and talk and talk! I did see a lady called a physiotherapist  because after my monthly injection of vincristine I walk on my tip toes and it was worrying Mummy a bit. When I go home I'm going to see another lady about it and I'm going to need something in my shoes to help me walk better!

I had my IVIG at the hospital and my big Cousin came to see me and it was a bit of a worry when I got a temperature. But it was all OK and I went home in my Uncles car not to bed in the hospital

When I was in England I went to Ducklings and played with my little cousin. We even went to her singing group funky monkey and got to wear funny monkey hats! I stayed with Nana and Grandad and I ate all their nice food and played with Nana's toys and art stuff. Mummy and my Auntie went into town for an afternoon without me and my cousin mostly because Joe has grown out of all his clothes for the summer! 

I like going to England and seeing my family especially when I feel well!

Mum Says: Apart from the concern about Alice's temperature on the day of her treatment in Leeds we have had another very normal month (well as normal as it can be) Alice is well and has done some serious growing over the last few weeks whilst she has been well. Unfortunately we've had a bad sleep month with the steroids and our trip to England, Alice gets very clingy and doesn't sleep well on her own when we are in England and it lasts a couple of weeks after we get back but still that is something for us to deal with over the next few weeks. In the mean time we are enjoying the ordinary-ness of going to school and looking forward to the school holidays!

So this is what normal feels like? -Week 57 to 60

I have finally managed a whole month (4 weeks) following something the doctors call protocol! I am supposed to have my injection (vincristine) and my minty medicine ( steroid) for 5 days on week 1. If my bloods are good I get a week off of blood tests and hospital on week 2. Week 3 is blood tests and then week 4 is a week off before we star again. I am having my goblins (IVIG) on weeks 1 and 3 to help me fight the Parvovirus.

I have medicine every day, one is an antibiotic and the other one is Brown and called chemotherapy. I have another green chemotherapy which I have to take every Saturday. Depending on my blood results I either take 100% of the dose 50% or none at all. I seem to take none at all more often than not. This month I've been on 100% my bloods have been good and I haven't even needed a blood transfusion!

I've been to school most days, except hospital days and steroid days. I get tired on those days and sometimes I get sore ears and gums or sore legs (the vincristine causes Jaw pain and leg pain) I have started making lots of friends in school and I was there for World Book Day. I went as the very hungry caterpillar, when he was a butterfly, I didn't want to wear a dress because I would have to wear yucky tights. They already make me wear them everyday with my uniform.

I have managed to go and play in the park and go to town, have my cousins over to play or been to play at their houses and just do normal family things with Mummy, Daddy and Joe.


But I think the very most exciting thing I have done this month is have a sleepover with my cousin. My brother had his birthday and his friends came to sleep at our house, he was 12 and I don't think he really wanted me there in case I tried to play with his friends. So instead I got to go and sleep somewhere else without Mummy or Daddy! I took own Peppa Pig bed and pyjamas and my Auntie collected me when my cousin finished school. It was very exciting and I got the giggles so it was hard to get to sleep. In the morning I got up and played and played and played!

Mum says: We have finally had a good month, uneventful! Alice has had her moments, the steroid makes her a little difficult to live with. The sleep disruption is the hardest part as it is upsetting for her and me! We seem to mostly be on top of it, giving her steroid earlier in the afternoon, the tantrums or the grumps as Alice calls them are difficult to manage but I'm glad when she lashes out that she is only small. I don't envy those dealing with teenagers on steroids. The thinning of Alice's hair seems to have slowed down now so fingers crossed it will start thickening up again. And normal? Well it feels fragile but fantastic! 

And on We Plod - Weeks 53 to 56

Things have been a bit quiet for me this month. I haven't been to school, I've been neutropenic and there is both chicken pox and swine flu going around. My teacher sent home some work for me, Mummy and I play schools in the morning. Altough I did manage to get to a ballet lesson this month.

When I had my vincristine this month I had a bit of a cold but not too much. I got very itchy and scratched up a petechial rash, so I had to have a blood test, my platelets were a bit low but not so bad that I needed topping up or anything. I wasn't feeling too good but I seemed to be doing well at fighting the virus all by myself. I had something called emzimes in my blood, from my liver, which were making me itchy, they went away all by themselves.

On Wednesday I went and had my hair cut, just a little bit but it made it all neat and tidy and I was very, very happy. I've been waiting since Christmas to go and have it done! I was doing really well and seemed much better. But when I went to bed my temperature went very high and I had to go to hospital, again. Daddy had a sleep over with me on Friday night which is always exciting, but I had to have another blood transfusion on Friday too. Mummy and Daddy weren't very surprised I'd been super grumpy! The best most exciting bit about being in hospital this time was making a tent in my room with blankets. I tried to sleep in it but the floor was too cold and  hard and it was just too exciting!

Because I had been in hospital we had to cancel going out for Nana's birthday. Luckily there are lots of birthday's in February. So we did go out for my Uncles birthday and at night, in the dark AND we went on another day when I was feeling better for Lunch with Nana.

But the most exciting thing to happen this month was my friend Nurse had a baby! It was a little girl and she was born whilst I was staying on Rainbow Ward.  When I was having my IVIG the next week my friend Nurse bought the baby to hospital and she let me hold her for so long I was very happy and I told my Daddy that we could have a baby and it could sleep in the lounge or maybe next to me in my room, except Toni has to sleep there. Daddy said NO, absolutely not.

Mum Says: We are getting used to our trips in and out of hospital, Alice makes a fuss to start off with but is happy enough when she gets there generally and we are getting good at finding ways to fill our time. Fortunately Gibraltar being small means that I get time away from the ward when my Mother-in-law comes and stays with Alice and Gareth pops in during his lunch time. This month has dragged a bit for  us stuck in the house because it's been wet and windy and a bit unpleasant outside. I've been a bit under the weather too and on antibiotics so that has also made the month drag a bit for us. Alice's new hair has started tinning a bit this month which is depressing for us , Gareth is most upset as it's his job to bath her and wash her hair each evening and that tends to be when it comes out, having said that Alice really doesn't care! Still we are hoping things improve now and we get back to school and 'normal'. Still being at home has meant that we have worked on Alice's behaviour and she is sleeping in her bed on her own more often.YAY sleep!

Maintenance - Week 52

Our little lost girl GOSH

This time last year we were in Great Ormond Street Hospital trying at take in the fact that our baby girl had leukaemia, we are now on week 52 of treatment and it seems like it happened a very long time ago, to someone else and yesterday all at the same time. 

When Alice went for her bone marrow aspiration on 16^th January 2013 I think I already knew what they would tell me. When we were in recovery they told our nurse that they had to try twice to get a sample (that couldn’t be a good sign).

I can picture the details of the room we were in when we were given the news, but not the person telling us. I don’t know how long we were with the consultant for but the shock of what he was telling us was deafening. There was a sense of relief, we knew what was wrong. I very quickly needed reassurance, she will start school? She will grow normally? She will have a future, children a normal life after this? (There has to be an after this)

Same hair cut as Daddy!

Gareth only heard his baby girl had cancer; leukaemia and that she would loose her beautiful dark hair because of the treatment (Which didn't bother him when it happened)

The speed which our lives changed was breathtaking, test, diagnoses and chemotherapy all in one day.

Initially answering calls from the family and telling them was easy. It was like a dream. Telling the children back in Gibraltar over the phone was the point at which it became real, especially Toni who’s immediate reaction was to burst into tears made them both so far away, no Mum there to hug them, comfort them, just repeating down the phone, “She will be alright, of course she will” (She has to be)

I suppose there are various stages to coming to terms with any life changing news. Initially I was too numb to feel anything. I had to stay positive and strong. I needed to read every piece of literature handed to me (because that is how you beat cancer). I needed to sort out every practicality (because that is how to beat cancer) and I had to hand over her care to complete strangers, do anything they told me was best for my child even if she screamed and fought me (because that is how you beat cancer)

Intensification summer 2013

I think Gareth and Dad were really the only two people who fully took in the diagnosis and how seriously ill our child actually was. Gareth just wanted to wrap her up and protect her from all the hurt, sadness and pain he knew the treatment would bring, he couldn’t be away from her for any length of time (neither of us could)

I felt a total sense of isolation from the world, from friends and family. Physically we were isolated at diagnosis because of the parvovirus, so there were no parents going through the same thing as us to talk to. I did however find out very quickly that we are not alone in all this, never have been.

There was a real sense of grief in those first few days as our child completely withdrew from us, she refused to eat, drink, speak or play. She was unhappy and scared. The trauma of having canulars which only lasted hours, if she was lucky a couple of days and then an NG tube to keep fluids up as all chances of canular access was given up on. We felt robbed of everything we knew.

Not such a happy girl today

Once out of hospital our happy go lucky fiercely independent 3 year old turned into a limpet, I couldn’t move without her attached to me, she wanted to sleep in my bed, sit on my lap for dinner even me going for a shower was greeted with tears and a fear I might not come back. Daddy had gone back to Gibraltar and left her in UK why not Mummy too?

I think being apart caused some resentment between Gareth and I. For me he was getting on with a normal life, work, shopping, birthdays (I missed Joe’s 11^th birthday) friends visiting, going out for meals and just having the other 2 children with him. For him, I was with our little girl everyday I saw her both on good days and bad. I was her protector. It should have been him I called when things got bad but instead it was my Mum, Dad, Brother and Sister there for us.

In reality we were both struggling to come to term with something that may or may not have been easier to do together.

Once we were at Leeds and going to the day clinic with other families in the same situation as us. I was able to see children on maintenance with school uniforms proud to have done a full week at school. One day I remember there was a family coming in for the last lumber puncture of maintenance, the families excitement was contagious, there is light at the end of the tunnel. Being able to chat with other Mums who were also struggling with cravings, sleepless nights, NG Tubes, weight gain, loss, gain, loss and mood swings was invaluable as well as the staffs understanding and support

I think Gareth had more time to be sad and to grasp what was happening. I don’t think it was until we started maintenance that I actually accepted what had happened in January. It was like I’d held my breath, the worst, we hoped, was over. I remember one night sobbing, my baby has cancer, I could have lost her.  Now she is getting better the guilt set in, what could I have done differently? Was it something I did when I was pregnant? Why didn’t I see it coming? If we hadn’t have lived in Gibraltar? (our family could have stayed together)

Gareth and I never really got angry about it, why our child? It just was.  As for our little girl the rages she flew into at the beginning of maintenance makes me believe she was furious! With us? The situation? It passed and she seem fine now. Screaming, Fighting, kicking and biting seem to have worked for Alice. Perhaps we should all try it?

Armed with a new vocabulary and out look on life we entered maintenance and are home, we spent  most of the past year saying, “maintenance will be easier”, and “maintenance will be better.” It is true, to some extent. We are now used to living with the ‘rules’. Chemotherapy is part of our bed time routine, we know what to expect when steroid cravings kick in and have got some of Alice’s less positive behaviours under control, sometimes. Our Mantra has become “Live a normal life”

Still mostly we feel lucky, lucky she is young, lucky we have such supportive family and friends, lucky not to have had to live in a hotel room. Lucky that despite everything we have a happy, playful little girl who seems to be taking everything in her stride. She will get better there is no other option, never has been!

Alice playing with my make-up!

England: magic milk and rainy days- Maintenance - Week 51

6th to 12th January

I was very excited to be going to England it is always fun to see my family, shame that we have to go to the hospital too.              

Monday morning Mummy and I were all packed and ready we went to the airport with all our family to say bye bye, I was sad to say bye to Toni but I'm only going to be in England for a week eating nice food and I had new headphones especially to watch films on the aeroplane.

On Tuesday my little cousin came to see me, I was very excited to see her and play. We especially like playing hide-n-seek together and generally getting into trouble. She couldn't stay for dinner though because she had to go to nursery on Wednesday, I was sorry to say good bye as I wont be back again for a long time, hopefully. Y

Wednesday as always was hospital day and it always takes a long time. I had to have a sleep and my goblins (IVIG). I did see lots of people I know and like and my friends the nurses looked after me, I miss them a bit when I'm in Gibraltar, they remember me when I was very sick and had no hair so they are all pleased to see me now, so much better. I like talking to the lady giving me my magic milk, it makes me giggle and tingle, I like it! Mummy says this time I was talking so much and giggling that she thought I wouldn't go to sleep. My Uncle came and took me to the hospital like he used to when I stayed in England and took me back to Nana and Grandad's house. This time my big cousin came to see me at the hospital and it made it more fun. 

After the hospital on Thursday Mummy took me to the supermarket and we bought the same gravy like Grandad has and some other food that I wont eat at home because it's not like Grandads. In the evening my Auntie and cousins came to visit and we all ate dinner together. Again I felt very sad to say good bye.

For a change we actually managed to get a flight home on Friday, which meant we passed Toni at the airport. Whilst I was waiting for my suitcase I saw Toni going to catch the plane. I waved at her and blew lots of kisses. We got to have noodles for dinner. Joe was away for the weekend so it was just Mummy, Daddy and me for a couple of days. Grown ups are a bit boring and I was really pleased when Joe got home from his skiing trip on Sunday!

Mum Says: It is always nice to get home and see my family, we are seeing them regularly because of our trips to Leeds, one silver lining. Alice did well at the hospital and it was great to see people and talk to other people who we know from our last year at the hospital. It was sad to see some of the new patients, you can tell who they are the parents genrally look like deer caught in head lights, because we know what to expect and they really don't. Even insomnia is easy to deal with compared to last year! Alice is getting to the age now that we have tears when she says goodbye to pepole because she really understands what it means. I was pleased that she was so happy to get to UK as there are days when she doesn't want to go back and we have a couple of unsettled nights when she gets back, worring about going back and having to stay longer than expected. I'm sure this will improve as out trips become less stressful and more predictable over the next year!

Happy New Year - Maintenance - Week 50

30th December 2013 to 5th January 2014

We celebrated the start of a new year this week which was sort of fun. The problem has been that I cannot sleep, I am taking my Grumpy minty medicine (steroid) and this month it has completely disrupted my sleep. I cannot sleep at all day or night. We've had problems before but it is normally one night towards the end of my dose, not so bad. 

 

Because I can't sleep and because of chicken pox we have mostly been avoiding people and busy places, especially play grounds and fun places like the cinema. Mummy and I are flying to England next week and Mummy doesn't want me to get sick when I'm there because our visit could be long instead of quick.

I couldn't sleep and because we were at home on our own Mummy and Daddy decided to see the new year in at Casemates, the main square which was lots of fun. I like the band a lot and there were lots of people all dressed up. I also liked the fire works for a bit then they got too loud and bright. When we got home there were still lots of fire works going off and I didn't like it. I still couldn't sleep especially with the noise so I watched a DVD in bed, something Mummy never lets me do.

After New years Mummy and I had to get ready for England and mostly started cleaning, packing and putting the Christmas decorations away. I can't wait for Christmas to come again, I'm excited about going to England and seeing my family but I'm also sad to be saying good bye to Toni because she wont be here when I get back she will be at university.

 

Mum Says: this month has been particularly hard witht the steroids interfering with Alice's sleep, it means that we are all tired and having to deal with very emotional outbursts from Alice. Not a good end to 2013, but an end. Alice went into total melt down on New Years Eve and we are uncertain of we count it as the last  tantrum of 2013 or the first of 2014. Still we've put 2013 behind us and are looking forward to 2014. We wish you all a very happy new year!