Category Archives: Chiane’s Diary

What is happening after my chemo

On Friday i got my CD34 cells back.

Over 15 billion cells I got in 15 minutes. Everyone was running around to get everything ready. Once those CD34 cells are out if the freezer it’s only 15 minutes before the cells starts dying. It was busy in my room! Hahahah
The very red bag in the pic is my CD34 cells that was harvest last year and frozen.

One thing that makes a huge difference is my new sheep skin I sleep on! It is SUPER soft and comfy!!! It helps my soar skin so much it feels like I’m not even laying on my skin.

I know it sounds weird, but last time I could feel my skin as it was very sensitive to lay on my skin. Now, I don’t feel it all and I also sleep better!!!! The best is that it’s pink!!!!! I also have a purple bag on my tummy that keeps my pain away.

And of course daddy had to take photos of me while I slept! What can I say, I love to snuggle my teddy bears when I sleep!!!!! I sleep on them and love it to be covered by them! The secret is out!

 

 

 

I had a busy day today! I met Dr. Matty and his nurse again to discuss the hospital cases and what he has to do for all the different patients!

This afternoon daddy and I were playing football in the hospital (we are so naughty!).

Although I am not in isolation I can’t have visitors as yet. I have no illnesses or infections and daddy is running a very tight ship! The next 2 weeks will get rough but I am doing much better than last time (so far).

Thank you to everyone who are still fund raising. Thank you for all the emails and prayers!!!!

Lots of love!
Chiane
Xxxxxxx

 

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My chemo is finished!

Hi everyone,

I am all done with chemo whoop whoop!!!!!!!!!!

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I am doing much better than last time. Although it has only been a few days after chemo (today was day 6 after chemo). I know the rough road is still ahead, but compare to the last chemo, I am doing much better this time on days 6!! I have much more freedom this time because my bloods are better than last time, and I have no infections. It’s soooooooooooooo good to run around and have fun!!!

The start of my chemo, visits from a clown and even Gruffalo!

Monday Afternoon was a busy day!
I had jacket potato with tuna!

Then my chemo started

I had a play therapist visiting me

And then it was time for school like daddy say, ‘business as usual’. I am learned how to read the time at the moment.

Tuesday was the very much the same except I didn’t go to the park
I had chemo in the morning

After lunch it was school again

 

And I had a visit from a clown! He was very funny!!!!

Tuesday afternoon I had a visit from the Gruffalo. We met before on ITV breakfast show on TV when I was on TV. The Gruffalo was there the same morning on TV. He remembered me!!!

Today is my last day of Chemo. By Sunday I will be very ill! Then it will be a long fight in hospital for my life. I will bleed again, my tummy will start hurting a lot again and my skin will burn. 5 baths again like last time, 5 pair of clothes a day!  Lots and lots of cream! Sleepless nights and a lot of pain!

What’s a little pain if you fight for your life and this is my last chemo after almost a year of fighting my cancer. I will be in hospital for 8 weeks and hopefully I will make it through this chemo. I saw winter and I can see spring in the air. Hopefully I will soon see summer, if I do, then it means I survived my chemo. I have no plans of giving up and I will fight my cancer to the end!

Thank you for your prayers!!!! This last chemo will be very hard and I will get extremely ill. I will hopefully see you all on the other side in a few weeks. That’s the plan! Hahhahahahahah!

Lots of love
Chiane

 

Fun in the park!

Monday Mommy and daddy had a meeting at the hospital. Afterwards mommy took me to the park for an hour before I had to go back to get my chemo! It was a perfect day and I had a lot of fun! It was fun in the park! A little time to play before I have to stay in the hospital for a long time!

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Robin Hood, Tinkerbell and Bat Girl

Good morning every one!

On sunday I was playing with my brother a lot because I was going back to hospital for a very long time! We played all day on Sunday!
We dressed up! Daddy was robin hood; estian was Tinkerbell (hahahah) and I was Bat girl!

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And I went horse riding!

Thank you sooo much Anna for letting me come horse riding again!!! I LOVED IT!!!!! My eyes are very sensitive to sun light. I had a hat on underneath my horse riding had to protect me from the sun. My eyes and my skin is still very sensitive to sunlight after the radio therapy but I had lots of fun!!!! Thank you Anna!!!! It was do nice getting out to the country side and enjoy the open spaces. It felt really good after 6 weeks stuck in 1 room!!!! xxxxx

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Playing with my brother

I played so much with Estian the last 3 weeks! These pics were taken yesterday after I came home from my lately transfusions. I made the best of the time we had because I knew I was coming back to great Ormond street. Daddy said we will only be here for a few days but I learned that the word flexible has a much deeper meaning haahahaha! I might be here another 2 months so I played with my brother as much as possible!!!!

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Thank you for all my emails and thank you to every one who are still helping with fund raising!!!!! There are so many people busy with fund raising thank you thank you soooo much!!!!!!

Lots and lots of love
Chiane
Xxxxxxxxx

All my visitors!

Hallo everybody!!!

I am back at great Ormond street but I am having a lot of fun because I’m not in isolation. Daddy and I had lots of fun today and we had a party in my room tonight!

Thank you to everyone that visited me recently at home! There was so many people at home! Here is only a few people. Thank you Adam and Luke for coming to my house and play with me and Estian! We had so much fun the house was in a mess!!!

Wikus, Breggie and family!

Dustin and Monika

Andre and Taryn

And many many more people!

 

 

Chiane Diary update 29 Feb 10pm

Good evening everybody!

I am sending only one email update tonight because it is late.
My days are very busy! Although I am home at night time, I’m going every where during the day.
I’ve had so many transfusions I lost count.
This morning I had a platelets transfusion at my local hospital and we got home at 2 pm.
When we got home we got a phone call to go to the city at great Ormond street hospital for a MRI scan at 5 pm.

We left Great ormond street at 7 pm we had to go back to my local hospital for more blood transfusions.

I’m home now and it’s almost 10 pm!

The good news is that I can get visitors as my neutrophils are above 1!!!!! Yes!!!!!!!!!!!!!!!!

Tomorrow daddy and mommy will meet the consultants at great ormond street hospital to discuss my MRI results and if i should get more chemo. Please pray that my scan is clean and there is no cancer anymore!

If you want to visit me please let daddy know. We can’t plan days ahead because every day I’m all over and every thing depends on my blood count which are taken every day.

I would love to get visitors and to see all my friends!!! I’m so excited!!!!

It’s time for bed. Good night every one and hopefully tomorrow we will get the best news ever!!!!!!!

Lots of love.
Chiane

I am home!!!

Hi everyone!!!!!!!!!

I’m home and I’m soooooo happy and excited to be home!!!!!!!!!
My brother and I running out of hospital!!!

Going home! I was wearing a mask when I left the hospital so that I don’t get any infections in the hospital lifts.

As soon as we got in the car I took the mask of off!

I’m so happy to go home!!!!!!!!

I just got home and I am sooooo excited!!!!!!!!!!!!!!!!!!!!!!!!!!!

I am going to play with estian now. Daddy and mommy has a lot of work to do now and tonight because I got all sorts of machines from the hospital and BOXES of medications and stuff that they need to set up for me at home. The car was full of hospital stuff!!!! Daddy will send and update tomorrow as we have a lot of news to share but we got a lot to do tonight.

Lots and lots of love!!!!!!
Chiane
Xxxxxx