Nose tube

Ellen's nose tube is now OUT! It has been in continuously since Ellen was first admitted to hospital some fifteen months ago. It has been used to give Ellen's medicines and for over night feeds. Since it came out (only six days ago) Ellen's quality of life has improved no end. She seems to have grown in confidence and as the above photo shows she is now eating a bit more and has put on half a kilo in weight over the past month. For me, it is such a relief as it means that when we are out people no longer stare at us and for once I can have a normal conversation with other parents and do not have to explain that Ellen has had cancer etc. etc. etc.

We have also granted Ellen her long standing wish of a cat. As if life was not hectic enough!

Steady as she goes......

It is three weeks since Ellen finished her treatment. All things considered (a new baby brother, a consequently rather tired mother, a father in marathon recovery) she is doing very well. We have been pretty busy going to toddler groups, going to Dorset for a mini break, visiting the swings and slides, the Safari park, the farm and the Library. We have even been to a few parties. Despite all this fun, Ellen still has her NG tube in for overnight feeds and remains quite anaemic narrowly avoiding a blood transfusion last week. We are taking things slowly but we are certainly in a better place than we were a few weeks ago.

A poem

This is a poem written by Holly that her Mum found today. A timely reminder of what an amazing person she was.

I may be ill and have little hair
But everything you have to bear
Coz if you don't you wont get through a single day
Watching hours tide away
This past year has gone so quick
Watching the clock, tick tock tick
To all the friends I've met on the way
Just be happy day by day
Look to the future, don't look back on the past
Always be positive and time will go fast

Pre-marathon photo - nervous anticipation!

Marathon Update

Well, we made it. All of Ellen's Team finished the London Marathon in times varying between 3 hrs 12 mins and 6 hrs 27 mins. It was an amazing and emotional event and we cannot express our gratitude enough to those who ran, those who have sponsored us and everyone who has supported this amazing cause. Ellen was there to greet the runners as they arrived at the after party and was on great form, other than a slight moment of distress when she found out that Daddy had not actually won the race - he has promised to do better next time! We are on track to raise over £60,000 for Sparks which will all be channelled into neuroblastoma research.

The photo above is of some of the team (at the beginning, not the end!).

London Marathon

Tomorrow is Marathon Day. Ellen is very excited about going to London to see Daddy running in' 'the race'. She is very keen to shout 'go Daddy go' and is pretty convinced he is going to win!!! The picture above shows the two of them running along the beach at Southwold 'training' together.

The Marathon is certainly going to be a big day for us all and I am sure it will provoke a whole mixture of emotions. We are all very proud of Simon who despite the various challenges of the past few months (a sick daughter, a four weekly visit to PICU, a heavily pregnant (and somewhat grumpy) wife, a full time job and a genuine dislike of running long distances) has tirelessly trained week in week out. We are also so touched by our family and friends who are doing the marathon for Ellen. They have all dedicated a great deal of their precious time and energy to train and fundraise (and travel, Rowly from Hong Kong, Reeso from Singapore) for which we are truly grateful. We are also completely overwhelmed by the number of people who have so generously sponsored the runners - the current total is £51, 699.08. I know that Simon will not only be thinking of Ellen and Holly as he runs through London but also for all the other children we have met through Ellen's illness who battle cancer on a daily basis. We so hope that the money we have raised will make a difference.

Last dose done

It has been a week since we got home from hospital with George and things are going pretty smoothly. Ellen had her last dose of Retinoic Acid on Sunday night which means that for the first time in months she has not had any medication for three whole days! Ellen continues to have an over night feed through her NG tube but we hope that if her appetite continues to improve this may be stopped in the next few weeks/months. Every day Ellen is getting stronger and she is really starting to enjoy life again. She does still tire pretty easily but this is improving each day. So, at the moment we are taking small steps forward and enjoying every moment!