Author Archives: Our Butterfly Girl

I met the Prime Minister and the X-Factor finalists!

Good morning everyone.

On Monday I went to 10 Downing Street with Estian.

As soon as we got inside Estian took a silver Christmas ball off the Christmas tree!!! Hahahahah!!!

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I met Nicole Scherzinger, one of the X Factor judges. She was sooo friendly and nice to me!!!

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Estian was so funny. She had her hands full with my little brother! Hahah!

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Estian had a lot to say to Nicole and she was laughing so much at Estian! my brother was so funny!!!

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She told me to stay strong and to continue fighting my cancer.

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And she said I looked beautiful!!!

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I then met the 3 X factor finalists.

Me and Christopher Maloney

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Estian gave Jahmene Douglas the Christmas ball he took off David Cameron’s tree! Hahahahah!!!

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James Arthur and Iimage_10

I then met the Prime Ministers wife, Samantha Cameron. She loved my dress.

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I then met the Prime Minister David Cameron.

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I then met the Prime Minister David Cameron.

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There was so many cameras in the room flashing so much we didn’t get a beautiful picture. David and I.

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It was so nice to see 10 Downing street and to meet so many people.

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Disneyland!!!

Hi Everybody!!!!!

 The last few months were very busy. I will send a few emails over the next few days.
I went to Disneyland in France a few weeks ago. I really want to thank the the magical taxi tour for an unforgettable weekend at Disney land.
Daddy and Estian stayed at home. Mommy and I went to France with more than a 120 other sick children for a weekend.
The magical taxi tour giving sick children a break from their world of treatment and therapy by going on a trip of a lifetime to Disneyland in a convoy of London Taxi’s. This can only be carried out with the support of Doctors, nurses and Paramedics. We left Friday morning at 5 am from great Ormond street hospital, had breakfast in the Docklands, and left for Disneyland. we crosses the sea to France with a Ferry (a big boat carrying cars) and came back Sunday evening.
Each child is in a taxi with a parent and a convoy of 20 police motorbikes (10 policemen from the UK and 10 policemen from France) escorting the convoy from London to Disneyland stopping all the traffic on route all the way to Disneyland. There was also about 10 police 4×4 vehicles at the front and the back of the convoy. There was 2 AA vans loaded with black can parts in case one broke down, a few ambulances and lots of doctors, nurses and paramedics!
Each taxi driver is allocated to a child and the mother of the child and he becomes more or less your daddy for the weekend taking care of everything and looking after us!
Saturday we had a huge formal ball and I danced so so much!!! At one point I was dancing with 3 taxi drivers at the same time! I really enjoyed the weekend!!!! Thank you so much magical taxi tour for a wonderful and an unforgettable weekend!!!!!!!!!!!!!! You truly went out of your way to make it so special to all the children that were there the weekend!!!!
A big big big thank you to Steve Wright who took care of us for the weekend. He gave up his time for the weekend and use his black cab to drove me and mommy to Disneyland.
Steve, me and The Lord Mayor David of London when we arrived at the Docklands in London for breakfast.

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Steve dancing with me at the ball Saturday evening.

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Steve and I with Mickey mouse

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

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

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Me with some of the English policemen that escorted us.

 

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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.

 

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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.

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

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

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Some more photos that was taken on my trip to Disneyland

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Me and Pluto sticking out our tongues! Hahahah!

image_9     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!image_1 (2)

This was some of the kids that went to Disneyland

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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!!!!

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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!

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

Lots of love.

Chiane!!!!

MRI Results

Good evening to you all.

This picture says it all!

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Chiane’s MRI revealed no changes, meaning she is cancer free. The “cloudiness” revealed during the last MRI have grown a lot…it is all over her brain but those changes are post treatment changes. The cloudiness that spread shows “density changes” in the brain, meaning many things but cancer. It will take more or less 2 years for the brain to heal itself due to the damage caused by the 2 brain operations, chemo and radiotherapy. The density changes in her brain is more likely the brain itself healing; finding new path ways to function due to all the harsh treatment she received and due to her original brain cancer … There was more or less 30 specialist that looked at Chiane’s MRI and all agreed unanimously its not cancer but post treatment changes in her brain – WHAT A RELIEF!

These changes in her brain is to blame for the current motor and muscle loss at times. Chiane has some problem in her right hand. Her thumb and middle finger work independently, but her index, middle and ring finger are all working together as one finger – which makes writing very difficult – this is also to blame for the post treatment changes showing on her MRI. We started with piano lessons to help Chiane practice these fingers to work independently… and for her brain to find new path ways to operate and help these fingers work independently. We discussed a lot of things with oncology, and had meetings with neurology as well. So far it all looks good…

We were worried about Chiane’s eye sight, and ophthalmology tested her eyes. It’s all good and Chiane’s eyes are 100% fine.

We had a meeting with education to discuss what home schooling we are doing and identified what support she needs. We met up with a psychiatrist to discuss various concerns and we finally get support we need to push Chiane mentally forward.

We have also discussed future hormone treatment, growth hormone treatment, thyroid treatment etc…

We discussed gene treatment and its so good to finally have GOSH supporting us and we are working together to address the genes.

Chiane will be submitted to hospital during the next few weeks to remove her Hickman lines that is still connected to her heart. These can now be removed. As things currently stand, we will be off to the states early next year. We first have to get a few appointments out of the way that was put in place today at GOSH, before we can fly.

Most StPnet children relapse in the first year after treatment. This was the 9 month scan… The next MRI scan will be the one year scan after treatment. If the cancer is not back by then, Chiane’s chances of surviving her cancer will increase dramatically – provided we sort out her genes.

Chiane was so happy to learn that she is still cancer free and that her Hickman lines will be removed before Christmas.

We are still doing intensive homeopath treatment, a strict organic nutrition and diet, hyperbaric oxygen therapy, and a few other things we don’t want to make public as yet. Chiane gained 5 kg and is now starting to show a healthy weight. She has no more bones sticking out and she has a lot more energy and strength.

Thank you for all your support and prayers. We can finally breath again. Chiane is fit enough to travel, and the gene therapy in the states is finally in sight!

Chris

Update 03/10/12

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!

Operation is over. My PEG was removed.

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

Summer fun!

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

Gene results

Good afternoon
We had a meeting on Tuesday to discuss Chiane’s genes because the Gene results came in.
The MLH1 gene provides instructions for making a protein that plays an essential role in DNA repair. This protein fixes mistakes that are made when DNA is copied (DNA replication) in preparation for cell division. The MLH1 protein joins with another protein, the PMS2 protein, to form an active protein complex. This protein complex coordinates the activities of other proteins that repair mistakes made during DNA replication. The repairs are made by removing a section of DNA that contains mistakes and replacing the section with a corrected DNA sequence. The MLH1 gene is a member of a set of genes known as the mismatch repair (MMR) genes. When the MLH1 gene is mutant, these mutations prevent the production of MLH1 protein or lead to an altered version of this protein that does not function properly. When the MLH1 protein is absent or ineffective, the number of mistakes that are left unrepaired during cell division increases substantially. If the cells continue to divide, errors accumulate in DNA; the cells become unable to function properly, and as these unrepaired cells multiply and divide it turns in to a form of a tumor, which turns in to cancer.
When the MLH1 gene is out of sequence, as described above, it is called Lynch syndrome.
After months and months of refusing to give up, it has become clear that Chiane does not have Li Fraumeni syndrome. as previously though, but Lynch Syndrome. It’s been rubber stamped. The MLH1 gene has been tested in her blood and in the tumor, with staggering results. All fingers are pointing towards this one gene based on all the results recieved.
This is a huge concern to us. Gene sequence can not be fixed. What can be changed though, is the markers and the proteins of genes. After tomorrows meeting with GOSH (to discuss her MRI results), our focus will turn towards the MLH1 gene and treating the protein levels/ markers of this gene. If we don’t alter it, her cancer will come back. So far, only the symptome has been dealt with. The cause of her cancer is still not fixed; unless we fix the gene – Chiane will be at high risk of relapsing. We will let you all know tomorrow, the MRI results.
Chris

Estian and I playing in the park

Estian and I playing in the park. We got so close and we are making up for time we lost together.

Thank you everyone for praying for me! I am working very hard and I’m planning to beat my cancer!

Lots of love!
Chiane
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Rapunzel’s Royal Tea Party

Hi every one!

I am working so hard at the moment but I am also having fun. I want to thank Great Ormond street hospital and Disney world for making my dream come true.

I was invited to Rapunzel’s royal tea party at Kensington Palace. Kensington palace is where Diana lived. Only a handful of children from all over the world attended this exclusive event which they have won in a Disney competition. I did not enter but was invited to the tea party. It was sooo beautiful! Thank you for my beautiful dress! Thank you Disney world for all the beautiful gifts that was given to me on the day, and for giving me an experience I will always remember. I felt so beautiful and special! I was given a wig with beautiful long blonde hair but I didn’t wear it. I wanted to feel comfortable being myself. Thank you GOSH for arranging for me to go.

The day of my first brain operation I wear my favourite dress to the theatre for my brain operation… My Rapunzel sleeping dress

And I ended my first fight stage against cancer with a Rapunzel tea party.
Getting my face painted

Story time at the palace

Tea time!

Fairy godmother teaching us how to courtesy and great royalty.

Me having some fun

The story teller getting us ready to meet Royalty

Rapunzel arriving with her horse and carriage at the palace

She is so beautiful and I LOVED her long hair!!!!!!!!

Meeting Rapunzel. She courtesied me like I was a princess. I was so excited to see her in real life!!!!!!!!!!!!!

She gave me a big long hug!

We had a long chat, princess to princess and she was soooo super nice to me!!! I still have to master sitting without wrinkling my dress!!! Hahahah it was silky and I had a lot of fun so my dress was wrinkly by the time the princess arrived.

We shared secrets that no one will ever know

Then we posed for some photos

Then we bowed each other.

She looked so beautiful and I enjoyed every second at the palace.

Thank you Disney world!!!!!!!

I’m so happy to be home!

Hallo everybody!!!!

I just home!!!!!!! There is so much news and daddy will send an update during the weekend. We have a lot to do at home! I’m so happy to be home!!!!!!!!!!

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We are very tired! Daddy will setup all my machines at home and we are going to sleep a lot this weekend!
I AM HOME!!!!!!!!!!!