Sun 3rd Dec - Weds 6th Dec

At last the wait was over we were off to Disney! The holiday was no let down. The weather was nothing to write home about, but we were not going to let it dampen our spirits especially Amelia’s.
When we arrived at our hotel (the pink Disney land hotel) our room was decorated with balloons on the bed posts, there was 2 helium balloons one for both of the kids, also a card each signed by all of the characters and a letter saying there was going to be a surprise in our room on Monday at 2 o’clock.
When 2o’clock came around there was a knock on the door and a lady asked if there was a Jacob and Amelia in the room, and then in walked Mini Mouse. She spent at least 20 minutes in our room playing with Jacob and Amelia on the floor, it truly was a magical moment as Amelia totally lit up and was amazed by the whole experience.
All of the parades were so magical and so pretty, they even make it snow in main street U.S.A.! The hotel was absolutely brilliant, having the characters in there and when you sit down for breakfast and see the castle just out side the window you realise what a fantastic place you are in.
Amelia just seemed to blossom while we were there she ate loads and to see her dancing to the music from the parades was indescribable. All of the characters that met Amelia was all kind and gentle with her and spent time with her and didn’t rush.
The whole trip was brilliant both Jacob and Amelia had a brilliant time, and we like to thank everybody who helped raise the money to send us and who helped raise the money for our spending money so we didn’t have to worry about counting the pennies. Thank you so much!

 

Mon 20th - Sun 26th Nov

Things seem to be looking up in the last couple of weeks, thanks to some friends and
family we have been able to carry out 2 major things on Amelia's wishlist. Thanks to:-
Dave Robert and his family and staff, The Jolly Sailor, Batheaston Primary school, my 
mum and paul and anybody who was linked to their individual fund raising exploits.

Due to the fundraising we have been able to buy a pink mini for Amelia but bigger than 
that..... on the 3rd December we will be going on the Eurostar across to Disney where we
will be staying in the 'Pink' Disneyland hotel. Just what Amelia wanted! It has meant so
much to us the time and effort people have put in to be able to carry out these things for
Amelia and has been quite overwhelming and I dont think we could ever thank them
enough.

Amelia is going on really well as all of her bloods are doing well and her mummy has been
really good at giving her paracetamol through her wiggly. Amelia has started to get so 
much more mobile as she was really quite weary after coming out of hospital.

Jacob and Amelia are so excited to be going to Disney, although Jacob is going to miss
football.  We are travelling by eurostar and Jacob seems to think this wont be as good as 
flying but I'm sure once he's on the train he will enjoy it just as much. 

Sun 19th Nov

Amelia stayed at home this morning with Leah whilst I took Jacob to football. He played 
well again and the team won 3-0 unfortunately he didnt score any goals this week but did
help set one of the goals up. Afterwards we went home and collected Leah and Amelia
and then went to their Nanny & Grumpy Peasedown's for dinner. Amelia has been home
from the hospital for five days now and it is lovely all of us being together as a family.

Sat 18th Nov

Me and Leah had another day at home with Amelia as Jacob went away for the day. He
went with his Nanny & Grampy Corston to visit friends in Plymouth and had a lovely time.

Fri 17th Nov

Amelia had to have her blood taken today. She has to have this done regularly but the 
CLIC nurse comes to the house to do this which is a lot easier and Amelia is happier
having it done at home rather than having to go the hospital. Since coming home Amelia 
has started to perk up and her appetite is also returning.

Thur 16th Nov

We had a quiet day at home today with Amelia it was lovely to spend time with her
without the hustle and bustle of Nursing staff coming and going. I took Jacob out this 
evening to get him some new football boots for his next game on Sunday. 

Wed 15th Nov

We took Amelia back to the hospital today for her blood transfusion it was a long day as
we were there at 10am and didnt get home until nearly 6pm.

Tue 14th Nov

We were told today that Amelia could come home but before she went she needed a
blood transfusion. After waiting until 2.30pm for the blood it finally arrived but they sent
the wrong blood! So we agreed that we'd bring her back in the morning. Amelia is having
Paracetamol every 6hrs for pain relief so we then had to wait for the pharmacy to issue
this. As she will not take it orally she has to have it in liquid form and Leah has been 
taught how to administer this through Amelia's wiggly (central line) Finally we managed
to leave the hospital and get Amelia home to see Jacob who was really happy to have his
Sister and Mummy back.

Mon 6th Nov - Sun 12th Nov

We thought that last week was hard; things seem to be getting harder and harder. At the start of the week Amelia seemed to be going in the right direction, her temp and CRP were both coming down, but she still had the spark in her eyes missing. As the week progressed Amelia started to perk up, and on Thursday I walked into the hospital and she looked at me, her eyes had a little glint in them she gave me a little smile and said “ good morning Daddy “ and I couldn’t think of a better feeling in the world! Anybody could have offered me anything and I would turn it down just for the way I felt then.

Although Amelia was perking up she still was not on top form and keeps spiking random temps and nothing seems to be being done, to top it off on Saturday she developed a rather aggressive rash, our frustration is really starting to grow.

On the good side she may have not been on top form but the hospital allowed us to take Amelia home for a few hours on both Saturday and Sunday, which was a really good morale boost for us all.

Jacob unfortunately developed impetigo on Friday and is not allowed to go near Amelia even though her neutraphil level is coming up. Jacob was also put on antibiotics which is making him feel pretty grotty but he still took place in his second footy match and again scored a goal, 2 games 2 goals well done little man mummy and daddy couldn’t be prouder, it made it so much better that mummy got to see him play this week. 

 

Mon 30/10 - Sun 5th Nov

This week has been a very hard week, to be honest, one of the hardest we have had for
a long time.
Amelia finished her Chemo on Sunday and we thought everything was going well. On
Tuesday she started GCSF, this is to try and boost her neutraphils after the chemo, this 
batch went really well and in the evening she went out trick-or-treating as it was also
Jacobs birthday. Wednesday we went in for her GCSF and were told that Amelia needed
to have a transfusion of platelets and blood, but when she had them she spiked a 
temp of over 38c, this meant as she had no neutrophils she would have to spend 48hrs
in hospital. Although her temp went down quite quickly Amelia's CRP level went up (this
shows if there is any infection) The problem we had was that Amelia was being treated
in Bath rather than Bristol and she wasnt happy there. It took until Friday when she really
was not at all right and a lot of fuss from us that they discovered she had Pneumonia.
   Amelia is now on three types of antibiotics and her CRP is slowly coming down, but
she is still really low and not wanting to eat or drink. Is is really hard seeing Amelia like
this as it is kind of a reality check on how poorly she is or how low she could get. 
Between antibiotics we were allowed to take her home to see if this would help perk her
up but no luck so far, it is really getting harder and harder to deal with but we know that
we have to stay positive for Amelia. The one good bit of news we had this week was that
Jacob had his first proper football match and in the second half he scored his teams and
his first goal, he had a brilliant game and they won 2-0, We couldnt be prouder of him, he
is our little star!



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