Isabella will take the last dose of the trial medication. 730 days later, 4,680 pills (that's just of the ADZ6244 mek inhibitor) Isabella completes the trial and we will go on a break. We will breathe a HUGE sigh of relief. We haven't told her, but, unlike every other morning, we plan to all wake up and celebrate.
The normal routine is either Gregorio or I shaking the pills in her ear in the dark, she awakes, sits up, throws four pills down her throat, slurps the water and goes back to sleep and we all return to bed. To be fair in the past couple of weeks, she has set her alarm and done it all herself.
Isabella has been a real trouper. We are extremely proud of her. Yes it has had a dramatic effect on her tumor, shrinking it by 50%, yes the side effects have been minimal. Yes the visits to the hospital have only been monthly but on average, we visit more doctors in a month than most of you see in a year (or more!) The doctors are amazing, always having time for us and in this digital age are reachable at the click of a button.
Remembering to take the pills and skipping very few doses is an amazing achievement - added to that taking them mainly on an empty stomach morning and night in between a busy schedule. Isabella has had some side effects - some perhaps positive - amazing blonde hair, some just darn right painful and bloody annoying. Isabella (like a number of others on the trial) has had MANY ingrown toe nails that have had to be removed. It has been a monthly occurrence, over time she has got used to having them removed without any anesthesia, my stomach churns just looking at her wincing. This has also necessitated endless antibiotics (at a mega strength) to counter any possible infections.
Despite all this, Isabella remains a happy and positive child who gets on with life and is a pretty normal budding teenager - three broken bones in the past year (finger, toe and a hand), starting to wear make-up, into my clothes, addicted to her iPod touch to text with friends and watch shows. She is into Grey's Anatomy at the moment. She seems focused on the medical world as a future career. And neurology in particular. She is certainly determined as last Saturday showed when she achieved her black belt in Tae Kwon Do - so we hope she will strive to achieve her dreams in the years ahead.
What does the future hold? Well an MRI next week to set a new baseline and then there will be three monthly MRI's to monitor the situation. Beyond that we will wait and see. If the tumor grows, we will see what the options are. Right now we are pleased to be at the end of this chapter and look forward to a treatment break.
We are looking forward to a wedding in Mexico in November, where the girls will be bridesmaids and then rolling into the traditional autumn and winter festivities.
Breathe a sigh of relief with us as we wave goodbye to this chapter of treatment. And we pray that without the constant medical appointments and worry about every medical condition - we will all have a renewed energy and enthusiasm for life. Long may it last.
Lots of love,
Emma & Gregorio xxx
PS and not to forget our wonderful daughter number two. Mati was made Head Girl, she is blossoming at school and loves swimming and looking forward to her first swim meet in a couple of weeks.
