Cutting off my hair

Hi everyone,


I have a few things to write and thank-you for reading this. I'm going to start of with saying THANK-YOU SOOOOO MUCH FOR SPONSORING ME!



The next thing is, if you could please send out the sponsorship page on your face book, I would be very pleased.


Then, I will be posting images and news on this blog and there will be an image at the bottom of this one to show how long my hair now is.


  The last thing I was going to add is that in just a few weeks time, I will be cutting off my hair so        please post the sponsorship to as many people as possible.

  Thanks again,

  Ellen

London Marathon

It is a long time since our last post. Ellen is doing fantastically well.
Next week I will be running the London Marathon for Clic Sargent. Please sponsor this wonderful charity :https://www.justgiving.com/teams/ellenwalkerfund

Rugby

Ellen is doing really well at the moment. She had her SATS last week - fingers crossed she will have done OK but, she certainly hates maths which doesn't help her chances of passing! Things have settled a bit with her liver - her last endoscopy was clear and we are only due a repeat in September. So, fingers crossed for a quiet, fun summer!

Today Ellen

decided she was going to dress up as a 'rugby player'.

Ellen is 7 and endoscopy

Ellen is eventually 7. Not for one moment back in 2009 did we think she would ever reach this milestone. She had a really fun birthday in center parcs followed by a birthday party at 'funky fun house', with her school friends. She then had to have an endoscopy at Kings in London last friday. Her last endoscopy was cancelled due to a more pressing case (always a relief not to be that case!). Friday was thank-fully very straight forward and Ellen didn't even need to spend the night in hospital.

Last weekend Ellen featured in our local paper. The link is below. We are normally terribly reluctant to do anything so exposing however, Cancer Research UK funded a large chunk of Ellen's treatment. When they phoned me and asked if they could use Ellen's story to promote a current fundraising idea I replied "not a chance". I then realised that the person to decide was not me but Ellen. So, that evening I asked her "what would you think of being in the papers to tell the story about when you were unwell?". Her response was "I would love to", and you know it has been a real boost for her. So, if we have raised a bit of money for charity and Ellen feels more confident thats great ....

http://www.cambridge-news.co.uk/Health/Family/Meet-adorable-7-year-old-Cambridge-schoolgirl-Ellen-Walker-who-battled-cancer-and-won-20140302060533.htm

5 years ....................

Today marks five years since Ellen was diagnosed with cancer. Since that day she has had multiple surgeries, numerous chemotherapies, 23 rounds of radiotherapy, 6 hickman lines and a porta cath, a stem cell transplant (requiring six weeks in complete isolation and nearly proving fatal!) and, five months of a novel immunotherapy (ie she was the first child in the UK to have it!). This was followed by a SECOND cancer diagnosis - secondary AML. She had three further rounds of chemotherapy, during which she nearly died from neutropenic sepsis, and then a donor bone marrow transplant from her little brother - not a mean feet on its own, requiring three months in complete isolation. Recently she has been diagnosed with portal hypertension from which she has had two catastrophic gastrointestinal bleeds. Quite an eventful five years by any standards. Throughout all this Ellen has remained in the most part happy and enjoyed life. Today she cycled to the water park in Center Parcs, went on the slide on her own, down the rapids with some help and thoroughly enjoyed herself. More of a miracle is that she is coping well at school, she has lots of friends and to-date remains pretty unaware of the battles she has faced. We are so very proud of her.

Feeling better

I am feeling better. I have been climbing a crows nest. Here I am.....

I have another endoscopy at the beginning of February. Hoping it will be straight forward........

Merry Christmas

Hello Everyone,

Merry Christmas. I have had a fantastic day. I have spent all day with my family having plenty of fun and Father Christmas brought me loads of presents. I am now watching Despicable Me 2 and looking forward to a second Christmas with my cousins tomorrow.

Have a happy new year.

Love From

Ellen

We are home

Ellen is HOME! The endoscopy failed to show a point of bleeding. This is bad news in terms of finding a definite cause but good news as it suggests that whatever was bleeding has settled. The most likely explanation is that the bleeding was from the veins in her tummy caused by damage to Ellen's liver during her previous treatment. We are keeping everything crossed that she does not bleed again and that she can enjoy christmas without anymore hospital visits. She will have another endoscopy at Kings in 2 months to check everything is OK.

Tomato Soup

I have finally been able to eat something. My operation went ok (even though it was late again because the machine was broken). They took some pictures of the inside of my tummy which looked yuk but the doctor said it was supposed to look like that and it was ok. I have had some tomato soup and now trying to get the doctors to let me have some yoghurt. I hope to go home tomorrow. Thank you for all the messages and cards. Love from Ellen

Still waiting...

After a four hour journey to Kings in London, Ellen waited all day yesterday for her endoscopy. She had been placed on the 'emergency list' so she had to wait for a slot between any other emergency that needed an operation across the hospital or who walked in through A and E! A slot was eventually found at 20:00, all the preparations were made and then they found out they didn't have the right equipment available! Ellen was quite keen to bop the doctors on the head by the end of the day. We eventually went to sleep late last night and are hoping to go to theatre this morning. We wont hold our breath. Ellen has not eaten anything since monday morning!!!!!!!

In Hospital

Dear Y1/2 G,

I am in hospital. I had a bit of bleeding from my tummy. I am now waiting to go and see the Doctors at King's College Hospital, London. Miss Di Nucci and Miss Wakeland are coming to see me today. I hope the school play goes well and to see you all soon.

Love from

Ellen

P.S. You can send me messages by 'commenting', I would love to hear from you.

Bumpy summer

Ellen has had a bit of a 'bumpy summer'. Since April she has had to have blood taken every week to reduce the iron levels in her body caused by all the blood transfusions over the past few years. This has been a bit of a hassle but Ellen has otherwise been really well.

In August, however, whilst at her school holiday club, Ellen vomited a large amount of blood. She was 'blue lighted' to Addenbrookes Hospital and, after a few blood transfusions, on to Kings College Hospital in London. She had an endoscopy which showed an ulcer in her small bowel and veins on her oesophagus. This is because of the damage done to her liver during her previous treatment. This all settled relatively quickly but Ellen has had to have two further endocopies/operations since then to try and remove these veins. The last endoscopy was two weeks ago. This procedure went well but yesterday morning, whilst preparing for the school run, Ellen again vomited a huge amount of blood. She was (again!) 'blue lighted' to Addenbrookes A&E where she was very poorly due to the amount of blood she had lost. Thankfully she is now much better and we are waiting for a bed to become available at Kings so she can have another endoscopy.

Because of all this we have decided to start blogging again so everyone can keep updated with Ellen's progress. Ellen too is keen to keep in touch with her friends so will be intermittently writing letters to you all .........she would love to hear back from you!!

Two years on...

It is two years since the start of Ellen's transplant and she is doing brilliantly. Despite a few set backs with her growth and the fact that multiple blood transfusions have led to 'iron overload' she is truly enjoying herself. Normality has finally entered her life which now revolves around school, gymnastics, being forced to read on occasion, play dates, parties and bossing her brothers around. Hoping this year bring the same.....

And then there were 3

Ellen has become a big sister again. Arthur Michael Walker was born on the 15th October. He is settling in well and Ellen and George are both very excited by his arrival.

Ellen continues to do well. She is in school full time and really enjoying it. She still has a few health issues - she is having to have all her baby vaccinations again - but, we are down to three monthly reviews at the hospital, a very welcome break from blood tests etc.

A year on

It is a year since the end of Ellen's bone marrow transplant. It is hard to believe just how well she has done. We have not been in hospital overnight for a year! Ellen is full time at school and really loves it. She has made friends, been to parties and play dates and has learnt to write and read (sort of). As the summer term ends we are looking forward to the holidays and even more fun.  

Thank-you to all those who have followed 'Ellen's progress'. We plan to update the blog on annual basis, so please assume no news is good news...

Disneyland and beyond....

Ellen is doing really well. She has just started back for her second term at school after an enjoyable family break in Dorset for Easter. A few weeks prior to this, she finally made it to Disneyland Paris after many months of anticipation. As you can see from the photos, it was a magical trip for all of us but also an emotional one. We have no idea what the future holds for Ellen and have previously been in the position where we "signed off" on the blog only to have to restart it again. However, her improvement over the past months has been remarkable and we remain cautiously optimistic that this will continue to be the case. Many thanks to everyone who has followed Ellen's progress and supported us all through such a difficult time.

As a final plea for support, and following the 'Running for Ellen' success in fundraising two years ago, two of our friends are again running the London Marathon for SPARKS. Please support this amazing charity and wish Tom and DJ the best of luck:

http://www.justgiving.com/Deej2012

http://www.justgiving.com/Tom-Sumpster

Ellen is 5

Ellen is now 5. She had a fantastic time celebrating with a 'Pirates and Princesses' party. Unfortunately, she had a viral infection for a week following the party but is now back to 'normal' and enjoying school again.

A year ago today

It is a year since Ellen was diagnosed with AML. What a year of ups and downs. Today Ellen ran all the way to school with her lunch box ready to have her first school lunch. She is settling in to school and really is enjoying it. It is remarkable to think how far she has come with all that she has had to cope with over the years. The first photo uploaded is a recent picture of Ellen. The second is a shocking picture of her when she was poorly, the third is of Ellen and George days before her bone marrow transplant and the fourth is the bag of George's bone marrow that has to date saved Ellen's life. These picture paints a thousand words!

Christmas, New Year and School

Ellen had a fantastic christmas. Like may others she was very upset when the Christmas tree was put away and the prospect of more presents was dashed.

This week has been a very big week as Ellen started school. She is only going part time initially but we hope that with time she will be able to cope with full days. She is very much enjoying being able to mix with other children and make new friends.

Flower girl

Ellen is still doing well. She was a flower girl at her Uncle Toby and Aunty Katie's wedding this weekend. She was very excited and really enjoyed the day. It was a joy watching her walk up the aisle. She has her monthly check this week so back to reality.....