An entertaining week.

The good news: Isabella was finally admitted to the new study and will participate in the ADZ6244 trial. Some would call it perseverance, others might say just a damn impatient mother constantly checking her messages and following up with the medical staff for an update. As each day (then hour) slipped away we were moving further away from the magic three weeks since the MRI. If we slipped past that we would have had to do another MRI and who knows if there would have still been space on the study.  First we had to wait for Children's to be approved to participate in the study and then await word that there was still a spot for Isabella. We heard late on Wednesday and our reward a full day at Children's today.

We began with a thorough review of the study objectives, side effects, our rights etc. You name it they've thought of it and if they hadn't they provided very honest and satisfactory answers. We were very impressed with the new oncologist. Next,  a new department to visit - cardiology for ECHO and EKG tests to make sure all is in order before we start treatment. Then we had endocrine visit, neurology, more oncology and blood draws. Quick laugh and a photo shoot with our old friends the clowns (they recognized us and they always provide a great laugh!) and finally we had signed on the bottom line and had consented to start the study. At 2pm (we'd been there since 8) we collapsed in the cafeteria ravenous.

But no rest, Isabella wanted to get back to school - you remember she always wanted to get back to her friends. This is the positive attitude that will get us through the next chapter.  So back to school for about 40 minutes and Isabella was very happy.

The actual treatment will start next Wednesday. Isabella will need to take pills in the morning and evening. For the first and 14th day we will need to spend the day at the hospital so that they can take blood practically every hour after the first dose is administered. Thereafter the visits will be weekly for first month and only monthly after that. The most common known side effects are minimal - the usual digestive issues which we can cope with and a possible rash. So now we hope they are minimal and she tolerates it well but most of all that it has some effect on the tumor. She will have an MRI every two months so we should have an indication before Christmas on how things are progressing.

Isabella is taking it very well. As the news has settled in she has obviously been a bit distracted. Her teachers and friends continue to be a great support in keeping life as normal as possible and let her focus on the good things in life. We are very grateful.

Meanwhile, Matilde has been waiting for her important news. Would she be cast in The Nutcracker again this year. The good news, just in - she will be a Snow Angel. She is thrilled, yes I am biased but it is a beautiful production. Let me know if you want to know which dates you can catch her on stage.

We will update you on how Isabella is doing. But as always, life continues as normal here with all our activities.

With lots of love,
Emma, Gregorio, Isabella and Matilde. xxx