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.