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.....

Back to the West Country

Ellen had her first visit back to Bristol last week for a 5-month post transplant check-up. All went well and the bone marrow transplant team at Bristol Children's Hospital were pleased with her progress. They have reduced the number of medicines she has to take to just a couple now, and the main issues are continuing to try and get her to eat enough and to stay away from winter illnesses. We took the opportunity to make a long weekend of it, catching up with family and friends, which included a trip to Longleat (as shown in the photo) and a very well earned swim! A much needed, but still exhausting, break for us all.

It is OUT

Ellen's Hickman Line came out today. This involved a general anaesthetic and a ten minute operation to pull/cut it out. She is now doing fine and is very pleased. Her nose tube is also out - this was a far less planned event as George pulled it out by mistake during a sibling tussle! We hope to be swimming by the end of next week.....

Doing OK

Ellen is still doing well. She started home tuition this week which is a very welcome addition to her weekly routine. Provided Ellen's blood results are OK tomorrow we are hoping that her Hickman line will be removed in the next few weeks. She is so excited at the thought of being able to go swimming. Here's hoping all goes to plan ....

On track

No significant news since the last update. Ellen is doing well. She continues to have problems eating and with her guts, but other than that remains well and is enjoying life as much as she can. She is now off her immunosuppressants; we have a long wait until her immune system is anywhere near normal, but so far all is on track.

Day +100

We have made it to day +100 and (unsurprisingly) there seems to be no apparent difference to day +99! It is a significant milestone though, as Ellen will start to be weaned off her immunosuppressants. It will take at least a year for her new bone marrow to be fully effective and we still have to be ultra-vigilant about avoiding crowds and potential sources of infection. All being well, she may be back at school in January. Ellen is making steady progress but the biggest struggle is nutrition. She is underweight due to a combination of not eating enough and recovering guts. It is, however, over 7 weeks since her last transfusion and all her blood results are gradually heading in the right direction.

We briefly wanted to thank all of you who sponsored Rowley in the Ultra-Trail du Mont Blanc. Unfortunately he had to retire injured after an incredible 79kms in 15 hours. A great effort nonetheless and he has raised over £10,000 for CLIC Sargent.

Day 86

We are still on track. Ellen and George are enjoying the sun/rain in places that are uncrowded enough for us to visit (not an easy task in the Summer Holidays!). We are now on twice weekly visits to hospital and still counting down the days to day 100.....