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