10th to 16th June - DELAYED INTENSIFICATION -Week 21

10th to 16th  June

Well I've not really been feeling myself again this week. Monday was quite exciting because my Daddy arrived. He came to see me at the hospital. I had been well enough to decorate a birthday cake for him in the morning and I had made a card and a present for him when I was feeling well so I had everything ready!

On Monday my Doctor had been to talk to Mummy as my heart rate was still not very good although it was getting better. She decided that I should have some tests done just to make sure they weren't missing anything important. She also said I'd have some magic milk so it wouldn't be so frightening.

The Dietitian also also came to see me because I had not eaten anything properly for a week and I lost lots of weight. They gave me me some special feed to have at night in my NG Tube. I don't like it and I don't want to keep having it!

I have tried to eat. I especially wanted to make Daddy happy!!

I have mostly spent my week in my room. Mummy  and Daddy have been trying to play with me and do things to cheer me up. Daddy mostly does things that are silly and gets into trouble from Mummy. He does cheer me up the most though! We have mostly been waiting!

I had tests an MRI an ECG and a Lumber Puncture. On Thursday the doctors came to speak to Mummy and Daddy again. All my tests were good and nothing bad showed up. They think probably the problem was from one of my drugs and wouldn't happen again. They also said that even though my blood wasn't great because I hadn't had a temperature and I'd finished 2 courses of antibiotics that I could go home!

On Thursday afternoon when Daddy was looking after my by himself I started to cough a lot and I was sick. I was so sick that my NG Tube came out of my tummy and out of my mouth. Daddy took it out out which made me happy for a little while. The Nurse put it back in because I still need it for food and medicine.

All my friends from the hospital came to visit me. My friend with her guitar, my friend with the painting stuff and DS games AND my friend with the milkshake as well as the nice lady who came and cleaned  my room everyday AND my Nana and Grandad.

I still wasn't feeling my best and I still wasn't eating but going home was very good news!

On Saturday Daddy took me and my Mummy for a drive in Grandad's car. It was quite windy and the wind made a lot of noise. I just wanted to go home.

 

All weekend my temperature was a bit up and down but not so bad I had to go back to hospital. Mummy called because Saturday night I had been coughing and I was also sick but the ward wanted me to stay at home. Not that I wanted to go back to hospital.

On Sunday I gave Daddy and Grandad the cards I made for them in hospital.  When my uncle came to visit Grandad. Instead of being excited I was just tired and went to bed! 

Mum says: Another tiring and worrying week. It was great to catch up with Gareth and to have him to share the worry and to be able to support one another not just over the phone, Skye or text message. We mostly sat and waited. Alice is not herself and her temperature started creeping up almost the minute we left the hospital! She wasn't happy or eating! But did seem as if a weight was lifted from her almost as soon as we arrived home. We are just suffering the side affects of her treatment unfortunately she seems to have had everyone to a greater or lesser extent ! We currently have: jaw pain, an upset tummy, ulcers/sores in her mouth, her hair is gone again, she is neutropenic and lost a lot of her mobility. We are using special bedtime pants most of the time at the moment . I suppose things can only improve! This is her week off treatment, we now have to hope things improve enough next week so we don't get a delay!

Alice really tried her hardest to eat EVERY day!