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!