Children With Cancer Fund
Children With Cancer Fund
Children With Cancer Fund (Polegate)
5 Western Avenue, Polegate, East Sussex, BN26 6EP Tel: 01323 488561
info@childrenwithcancerfund.org.uk Registered Charity No.1110644



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Elouise's Story


Elouise


Below is a letter that we received from Elouise

Hi I am Elouise and I have Leukaemia. This is my story.

On 20th November 2006 I was diagnosed with Leukaemia and it felt like the end of the world. The next day I was taken to The Royal Marsden Hospital by ambulance. I was feeling quite unsure about what was going on and wanted to know more, like what was going to happen to me, but nobody knew.

The first thing the doctors wanted to find out was what type of Leukaemia I had. It turned out I had Acute Lymphoblastic Leukaemia which is not a rare type, but what we didn't know was I also had Philadelphia positive which is quite rare. I had to have quite a lot of medicines and tablets, one of the tablets was steroids and they made all my joints go stiff and I couldn't walk, they also made me eat like a horse so I did blow up quite a bit. Other medicines I had to have were chemotherapy drugs and they were the worst drugs of all because it made my hair fall out so I have to where a bandana and it made me feel sick. Also my sugar levels were very low and the doctors and nurses were worried they would diagnose me with diabetes, but luckily the levels went down.

Every now and then I get a temperature and have to go up to my local hospital. Because I have got Philadelphia positive type leukaemia I will have to have a bone marrow transplant so I had to have a 3 lumen Hickman line put in my chest so the doctors can give me medicines and take my blood out of the 3 lumens. When it comes to having the transplant I will be given the marrow through my 3 lumens.
Elouise and her laptop
Elouise with her laptop
Elouise and her parents Every few weeks I have to be put to sleep and have a lumber puncture and a bone marrow test. The lumber puncture is a long thin needle injected into my spinal fluid and then the they pull back on the syringe and take out some fluid. Next they inject a chemo drug called Intrathecal Methorexate in to my spinal fluid. The bone marrow test is a injection in my hip where they pull back some of my bone marrow and then test it to see how much leukaemia is left in my body and to make sure no leukaemia is floating into my brain. When I have had a bone marrow test it makes my hip really sore for a few days. Also I have a community nurse come round weekly to give me medicines through my lines or take my blood. I am going into hospital in a couple of weeks for intensive chemo and to get ready for my bone marrow transplant in April.

Love from

Elouise


Then we had another letter just a little while ago:

Hi Chris and Ursula,

When I woke up this morning my mum told me to go on my laptop and look at your website and I found that my pictures and my story were on there. Thanks for putting them on. But now I have completely lost my hair and I have attached a photo of what I look like now. When I was on your website this morning I was reading about the oncology/ family room, and I realised that’s the room I stay in when I get a temperature or infection at home. So thank you for making the room so nice at my local hospital.

Love from

Elle
xx

It's our pleasure Elouise.



Update September 2007:

This is the rest of my story.

I had my transplant in June and was in the Marsden for seven weeks. I was in isolation for four weeks which wasn't much fun. I am at home recovering well. It has been rough but am getting through it. My eating is not brilliant at the moment but that is not surprising because I hadn't eaten anything for 6 weeks when I had my transplant. I was fed by an N.G tube. I am quite weak but getting stronger by the day. I won't be going back to school until the end of October but I have a home tutor instead.

Elouise




Update October 2009:

My updated story.

Well it's now 2 years and a bit since my transplant and everything is great! I am back to normal doing my favourite sports like horseriding, doing really well with that in fact.

My school and social life is brilliant it couldn't really be better. I still have to go up to the marsden every now and again maybe 3-4 times a year to have the various check ups but other than that I don't have to see the inside walls of hospitals anymore!

I would like to say to people who are going through what I went through, "you do get through it and there is a light at the end of the tunnel".

Well thats it really, not much more to say.

Elouise


Elouise On The Beach Elouise With Her Horse Maisie




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