Signing out....

Ellen really enjoyed her first visit to the swimming pool. It is hard to believe that this time last year she was nearly half way through her bone marrow transplant and was to face over a month in isolation and a long hard battle with VOD. Heres to a summer of swimming, fun and the holiday club which starts in two weeks.

We are now hoping that Ellen's life will now be that of a regular three year old with no medical news to report and, as such, we feel it is time to sign off from regular blogging. Thank you to all those who have supported us over the past 18 months; there are far too many of you to mention everyone but without you we would never have made it this far....

It is OUT

Ellen's Hickman line is safely out. She is so pleased and can now enjoy the delights of the recent heat wave without the fear of it coming out and bleeding or it becoming infected. We plan to take her swimming on Thursday. This will be the first time she has been for 18 months and as she used to love it so much will be a very special moment!

Good times

We had a fantastic holiday in Dorset. Ellen has been in the paddling pool, almost swimming in the sea and visited lots of fun places. It is truly wonderful to see her enjoying life so much. We are hoping that her Hickman line can come out soon as it is quite challenging preventing such an active little girl from either pulling it out or covering it in mud/dirty water as she chases the cat around or plays with other children. We see the Consultant on Tuesday so we await the result of the discussion....

London Marathon Video

Below is a link to the Sparks London Marathon video. We are featured from 7 ish minutes on...

http://www.youtube.com/watch?v=iRPYfKRYMhY&feature=youtu.be&a

Life on the outside

We are slowly starting to adapt to life in the 'outside world'. Ellen is doing well. She is eating like we have never seen before and has put on over half a kilo in weight. With more time away from hospital Ellen is gaining confidence and has been enjoying playing with other children; something that she has been denied due to her immune status. This is all helped by the fact that her energy levels are noticeably better. We had hoped that Ellen's Hickman line would be removed last week but as a few of her blood results are yet to return to normal from all the medicines she has had this wont be possible for a good few weeks. We are off on a well earned two week holiday to Dorset next week and cannot wait!!

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!

New arrival

Ellen's little brother George was born on Sunday 11th April at 11:50 weighing 6lb 11oz (3035g). Despite a visit to NICU due to a few 'breathing problems' (our life is never straight forward) we are back home and are all doing very well. Ellen is being a very dutiful big sister and certainly enjoying having George around. Only seven doses of her retinoic acid to go!

Brave girl

We are home! This week has been quite tough as Ellen did not respond well to her last two days of anti-GD2. She became quite unwell with a very high pulse rate and low oxygen saturations. We are not too sure why this happened, but are very relieved that it was her last dose. We now have no more planned hospital stays, just two more weeks of retinoic acid at home. Although we are really pleased that we have made it to the end of the treatment protocol we are all feeling a great mixture of emotions. It is very daunting thinking of what Ellen's future holds and we can only hope beyond hope that she gets the chance at life that she so deserves. She has been such a brave, brave girl over the past fourteen months and we are so very proud of her.

On the home stretch

Ellens final anti GD2 infusion started on Monday. She is coping very well. We are on the paediatric ITU again and hope to be home by the weekend.

The final push

Ellen is doing fine. She has certainly been enjoying the warmer weather with a visit to the farm and many hours spent at the swings and slides this weekend. We now only have four weeks of treatment left. She starts her daily IL-2 injections this afternoon for five days followed by a week on PICU for the immunotherapy and then two weeks of oral chemotherapy at home. Heres hoping the next few weeks go without complication......

Flying high

Today, Ellen's friend Holly died. She was only 12 years old. She too was diagnosed with a Neuroblastoma in February 2009. She was the very brave daughter of a wonderful woman, both of whom we will hold close to our hearts forever. Fly high Holly.

Home again

Ellen has coped amazingly well with round four of the immunotherapy. We made it home yesterday and, as Ellen was feeling OK, we have managed to escape to the Suffolk coast for a few days rest and recuperation. She starts her penultimate course of retinoic acid tomorrow.

End of round four

Ellen's fourth round of immunotherapy has nearly finished. The week has passed uneventfully. She is still on a morphine pump and is being monitored carefully on Paediatric ITU. She has been more feisty this round (every Doctor has been told to 'go away, leave me alone') and she has managed to spend more time playing and reading books. We hope to be going home tomorrow.

Round four

Ellen has started her fourth round of immunotherapy with a week of daily IL2 injections. It has been a relatively uneventful week with a few episodes of vomiting and Ellen feeling pretty washed out. We are back in hospital on Monday morning for her week on ITU which we also hope will be uneventful.

The marathon sponsorship is doing amazingly well. Many thanks to all who have donated. For those yet to do so, please see the Running For Ellen link above.

Ellen is 3

Ellen is 3 today. After a slight hiccup with a visit to the hospital in the early hours of friday morning (it turned out to be a bog standard viral 'cold' something we are no longer used to) she has had a fantastic weekend. She really enjoy herself and had more energy than we have seen for over a year. She rode the "big girl's" slide on her own at Woburn Safari park but then slept through the safari drive! She had a Birthday Tea Party with a cake and candles that she loved blowing out (several times) and some really lovely presents. We are all now pretty exhausted and are gearing ourselves up for our fourth IL2 week.

A year ago today

A year ago today, Ellen was first admitted to Addenbrookes. What a year it has been! After 110 nights in hospital, 7 operations, 22 general anaesthetics, 20+ blood transfusions, 30+ platelet transfusions, 9 rounds of chemotherapy, 14 rounds of radiotherapy, countless courses of IV antibiotics, a bone marrow transplant, 80+ injections and 6 weeks of a completely novel treatment, we are still standing! We certainly wouldn't be if it was not for the huge support of our family and friends to whom we are eternally grateful. However, the real star is Ellen. She has amazed us every step of the way with her tenacity, stoicism and good humour. We cherish each day that we spend with her.

To infinity and beyond...........

Home

We made it home on Saturday morning. Ellen has been sleeping alot but is otherwise very well.

Almost done

Well, round 3 is nearly finished. This cycle has certainly been easier than the last two - mainly because Ellen has not had problems with her breathing. We were moved from ITU to the regular ward on Wednesday morning. We are now waiting for her last anti-GD2 infusion to finish then fingers crossed we will be home tomorrow or the day after. We cannot believe that we are now over half way through the immunotherapy....

Round 3

Ellen's IL-2 went surprisingly smoothly. Despite making Ellen tired and anaemic (she had yet another blood transfusion on Sunday) there was only one significant temperature and she has managed not to lose any weight! She had a good weekend which included a very successful trip to Woburn safari park. We are starting her antibody therapy on Paediatric ITU this morning and are crossing our fingers that this is a better experience than the last two. One of Ellen's very brave friends, who has been a great support to us over the past year, is also fighting neuroblastoma and having a very challenging time. Please can we ask for your positive thoughts and prayers as she has a tough week ahead.

Many thanks to those who have donated to the 'Running for Ellen' fund! If you haven't done already please support this great cause (link above).

RUNNING FOR ELLEN

We are very pleased that 12 of our friends and family will be running the London Marathon this year for Ellen. They will be running for the charity SPARKs (SPorts Aiding Medical Research for Kids). The vast majority of Ellen's treatment would not have been possible without medical research, a great deal of which is funded by charities such as SPARKs. Although we realize that funds raised this year may not directly impact on Ellen's care, we hope that they will help other children who will suffer this terrible condition in the future. We are really grateful to those giving up their valuable time to run the marathon for Ellen; please support them all - SEE THE FOLLOWING LINK: http://www.runningforellen.com/

Ellen's Team are: Simon Walker (Ellen's dad), Will Gelson (Ellen's Uncle), Toby Walker (Ellen's Uncle), Harry Boyd-Carpenter, Geriant Morton, Nick Druett, David Johnson, Rowley Aird, Susie Calderbank, Matt Rees, Iwan Walters, Tom Sumpster.

Round 3 starts

Ellen has had a good week and has been really well. We managed to visit the London Aquarium on Friday which she really enjoyed. Sadly round 3 of her immunotherapy starts today with daily injections of IL-2. She coped pretty well with this last time so lets hope this week is not too bad.....

Feeling Better

Ellen is getting steadily better. It has taken her all week to regain her strength and she has lost a lot of weight again. She is certainly feeling the cumulative effects of an intensive near year of treatment, and its hard to believe that we still have three more tough months ahead of us. However, this week should be a good one before her IL2 next week and then immunotherapy re-commences on Monday 1st Feb.

Finally home...

We have just got home from the hospital. Ellen has recovered pretty well from this cycle of treatment. Her temperature has come down slowly and it has taken her a few days to get rid of the extra fluid she was given with over the past week with her immunotherapy. She has also had some rather loud snoring at night which seems to be related to a 'viral cold' (every little thing is taken seriously surrounding this treatment). Despite being very tired she is getting back to her usual happy self. We only hope this cold does not lead to a temperature and thus a swift visit back to Addenbrookes!

Second round nearly finished

After a long week Ellen's second round of immunotherapy is hours from being complete. She has coped very well and despite the earlier hiccup things have run relatively smoothly. Her pain has been well controlled with morphine and her breathing has become much more settled over the past few days. We hope to be home by the end of the weekend and are very pleased to be 40% of the way through this horrible treatment.

Round two

Ellen is back in hospital for the second round of her immunotherapy which has already been somewhat eventful. She had a blood and platelet transfusion and a new Hickman line put in on Monday morning. Her immunotherapy was then started on the regular ward and everything was going impressively smoothly until she decided to almost stop breathing. A very scary experience as at that moment, there were no doctors or nurses in sight. Thankfully a passing Consultant was virtually rugby tackled to assist and Ellen was sorted out pretty quickly. It seems that this was caused by the combination of a swollen throat from her anaesthetic, an allergic reaction to the immunotherapy and excess fluid on her lungs. We were rapidly moved to ITU and are continuing the remainder of this course here. Ellen has been reasonably well with today's infusion and we hope the rest of the week will be a little less eventful.