Category Archives: Chiane’s Diary

I am working very hard. I miss my old school, and I miss my school friends!!! I am so determine to go back to school!!!! I am still doing a lot of physio, and I exercise every day!! It’s too cold outside, so I got a mini trampoline inside the house. I exercise every day, I eat all my food, I take all my homeopath medicines, I work very hard at my school work!!!

My hair is slowly growing back, but I do have lots of patches on my head that is still bald and smooth. I got a patchy head!!! Hahahahahah!!!

However!!!!! I can hold 2 hair clips now in my hair!!!!!! I’m so excited!!!!!!!

I am so determine to go back to school!!!! My little brother turns 4 in April, which means, he is going to school in September when the new school year starts! My goal is to be ready by September to go back to school, when my little brother starts school!!! I will not stop! I will do what ever it takes, and I will work harder if I have to! Someone has to take care of my little brother when he starts school, show him where the toilettes are, the play rooms. He will have no friends in the beginning!!! I have to look after him and take care of him when he starts!!

I am very motivated and I will stay positive! Thank you everyone who is still helping with donations!!!!!!! Lots and lots and lots of love!!

Chiané

Good afternoon everybody!!!!

We had lots of snow during January in London. I loved it!!! We played a lot in the snow!!!

One of my best friends, Tenille visited me a few times this month. I am so happy, because Tenille is one of my best friends. She hasn’t treated me any differently since I was diagnosed with cancer. This was one evening Tenille visited me.

Tenille, my brother and I playing in the snow.

Me and Tenille at my house! Tenille is always nice to me!! She even told me that my hair looks cool!!

The 26th of January was my birthday, and I had 2 friends over for my birthday. In the morning my brother helped me open my presents.

In the afternoon my friends came over. Tenille and Alessia. Alessia is also a very close friend of mine!!! My brother wanted to be a fairy! Hahahah!! He borrowed one of my dresses and I wanted to dress up as a nurse!

Merry Christmas everyone!!!!!!!!!!

Yesterday is history, tomorrow is a mystery, but today is a gift!
I am living everyday as its a gift, because that is exactly what it is!
Wishing you and your family a fantastic Christmas.

Thank you everyone who has been praying for me so hard. You carried me through your prayers, which gave me strength.
Lots of love.
Chiane xxxxxxxxx

Hi everyone!

I am back home! My operation went very well today. The “Dacron cuff” is used inside the body close to the heart with the Hickman lines to prevent them from pulling out. Because we have Hickman lines for so long, the tissue sometimes grows around it in the vein, and removing it if the tissue grew all over it is dangerous. Then they leave it inside your body and you have it for life!
Daddy and mommy was worried that my “Dacron cuff” would not come out. It did!!!! Everything came out and the doctors did good! I feel much better. I ate and drank water and I feel a little brushed and soar, but I feel very good.
It is strange not having my wigglies anymore. They were part of me for so long, getting cleaned every week to avoid infections. It will be strange not to feel them.
Zoe was my very first nurse the day I arrived in Gosh a year and a half ago, and she was my nurse today taking care of me on my last formal day at GOSH. Now it’s only scans every 3 months. No more weekly bloods that’s needs doing etc.

Zoe is so kind and friendly, and she gives the best cuddles ever! She use to call me her shadow because I followed her everywhere last year when I had 2 brain operations. >;
This was taken just before I left hospital today, after my operation.

No more Hickman lines! It will take a week for the hole to heal and then I can play rough again with my brother. I was very happy at first….because I can go swimming soon, and take a bath like normal people do. I can’t wait to have a shower!!! But then I got very sad…

I realised my wigglies was helping me get better, protecting me from getting constant injections. They helped me get my medicines, chemo, bloods, and in many ways, it was my lifeline in hospital. I got very sad because I know I will miss them at first, like a tooth I loose. It takes a few days to get use to it.

The hospital took a photo of my wigglies they took out, and I felt better when I read my card with a pic of my wigglies.

Goodbye Max and Ruby, you were literally connected to my heart and you were my silent friend making sure no needles got close to me. I will miss you!

This is a good day. I am sad, but I know the fact that my wigglies came out means I’m heading in the right direction.
Thank you everyone that has been praying for me! Everyday is a beautiful day. I appreciate everyday and enjoy it to its fullest! Last year I didn’t know if I would see another Christmas. Tonight when we left the hospital everyone outside walking past looked like they were in a rush to get home, getting cold and looking grim. I told daddy to stop for a second. We all stood there for a few minutes, closing our eyes feeling the crisp cold wind on our cheeks. Everyone rushed past us in the street, and we just stood there feeling calm, feeling the cold. It felt so good knowing I could feel it…I am alive and I am still here…it’s still early days, and many challenges are ahead of me, but I will stay positive and make the best of each day…cold weather or not!

Lots of love.

Chiane
Xxxxxxxxxxx

Good evening everyone.

My wigglies are coming out on Friday! I’ve had them in for a year and 5 months!!!

I can’t wait to get them out! I just want to have a normal bath and not be covered in cling film every time I have a bath. My Hickman lines (wigglies) are connected to my heart and were used to give me chemo, and lots of blood transfusions, medicines and to draw my blood.

Because my blood are so good, daddy spoke to the doctors to remove them and they agreed! I’m so excited!!!

My blue wigglie I called Max, and the red wigglie I called Ruby! I will say goodbye to Max and Ruby on Friday!

Soon I can have a normal bath, or sleep on my tommy again, or go swimming, or so gymnastics!!!! I’m so excited!!!

Chiane

Hi Everybody!!!!!

Steve dancing with me at the ball Saturday evening.

Steve and I with Mickey mouse

This was taken when we left Dover on the Ferry to France.

Me with some of the French police men that escorted us.

Me with some of the English policemen that escorted us.

This was on the Ferry. You can see the 2 AA breakdown recovery vans, behind then is some of the paramedic cars and to the left some of the police 4×4 vehicles.

This was at the hotel we stated at in Disneyland. This was all the police vehicles, ambulances and police motor bikes that escorted the convoy from the UK to France.

The below 2 photos shows all the London black cabs. There were so many cabs!

There were 2 rows going all the way down. I’ve never seen so many black cabs in my life!!!!!

Some more photos that was taken on my trip to Disneyland

Me and Pluto sticking out our tongues! Hahahah!

     This is Polly. Polly was my Paediatric doctor that supported my medical treatment at my local hospital at Chase Farm Hospital. When ever I wasn’t at Great Ormond street, and I had to go to my my local hospital for Transfusions, Polla was my doctor. Thank you Polly!

This was some of the kids that went to Disneyland

Ailish was my nurse practitioner at Great Ormond Street hospital when I got high Dose Thiotepa. She supported me a lot during my last 2 months in hospital… Thank you Ailish!!!!

It was so nice to see my doctors in a different environment and to have fun with my doctors for a change, and forget about cancer!

Mommy and I went on so many rides in Disneypark!

Thank you to all the policemen, and everyone giving up their time to take care of us for the weekend!!!!!

Lots of love.

Chiane!!!!

Good afternoon everybody. I am feeling much better and I am getting more and more energy. I exercise a lot and it helps me feel better. Riding my bicycle, going for long walks, climbing frames etc.

I am not wearing cast for 2 months, and I get a new set every week. I cant walk on my feet, just on my tippy toes. The casts helps to stretch my muscles and after 2 months i should be able to walk flat on my feet again. It is helping me but it is very uncomfortable.

Week 1:
My week 1 casts come off…

Week 2:
Old ones came off and my week 2 casts came in

Week 3:
This was today. The purples once came off and I got these today

I am getting pampered! My first manicure!!! It felt so good! I felt like a princess!

My hair is growing! Dog biscuits really works to help hair grow thick and fast! Hahahahah!

Good afternoon everybody. I had an operation today and my PEG was removed! I was so happy that my PEG came out. I had it for almost a year and it was used to feed me when I could not eat by myself.

This was taken just as I came out of theater.

These were taken as I woke up but I fell asleep again.

This is Zoe. She is my favourite nurse. I know Zoe from the very first night I arrived at great ormond street hospital. She took care of me the very first night I arrived at midnight on the 21st of June 2011. It was really good to see her before I left hospital today, and after my operation.

I am back home and I am doing well. My wound will heal and in a few days I’ll be running around again. I saw the pictures of my MRI today, and although there is something there, we don’t know what it is. The fight continues and I am not giving up!

Thank you for all your prayers and support.

Lots of love
Chiane xxxxxx

Good evening everybody!!!!

It has been a while since my last email! I am very busy being a kid at the moment enjoying the summer! We don’t know what is waiting around the corner, so I am making the best of my life at the moment.

My brother and I cooled off in a small pool at home. We had so much fun playing in the water. Estian is getting very big now. I eat a lot of food but he is catching me! He is growing taller and taller.

My hair is starting to grow back, but certain parts of my head will not grow hair anymore. I loved my long blonde hair, but I got dark hair now. It is a small price to pay if you are fighting cancer and if you are fighting for your life. Daddy said we will wait a year, if my cancer doesn’t come back by then we will look at options to get some hair implants. Then I will hopefully have hair growing everywhere on my head again.

My brother and I went to Noah’s Ark sports day and we both won a real medal! We had a lot of fun! Noah’s ark is a charity that helps me a lot a home. They come to my house a few hours each week, keeping Estian and me busy while mommy and daddy do important things like talking to the doctors, and arranging meetings for my treatment to come.

Estian was a super hero

Me building blocks

We went to a summer ball a few weeks ago and I had so much fun!

We dressed up and I felt very pretty.

We went bowling a few weeks ago. It was so nice to get away from home for a few hours.

Although we make the best of every minute, I still work very hard. I am taking 36 different homeopath medicines every day. I exercise, and I still do my yoga. I am not having any school at home because it is summer holiday at the moment and the schools are closed.

Thank you to everyone that is praying so had for me!!!!!! Fingers crossed my cancer hasn’t come back. I will be positive and optimistic. What will be will be. I am fighting hard and I am doing everything I am being ask to do.

Lots of love!!!!!!!!!!!!!!!!!!!!
Chiane xxxxxxxxxxxxx