Here we go again...

It has been a few months since we updated you. Where on earth have we been? Well last Tuesday, as I sat in the MRI waiting room I drafted a blog about our wonderful summer and our house remodeling project but a week on and we are now focused on a new journey and the past slips away into the distance.

On Wednesday last week, Isabella's oncologist called to give her us the preliminary results from the MRI - the tumor has grown and she recommended starting treatment. On Monday the neuro-oncology team all reviewed the scans and are all in agreement  - we have reached that time, time to restart treatment. We cannot risk letting the tumor growing further and affecting her vision. Though at present her vision is perfect and there are no issues. So today we were in the clinic to discuss the treatment options.

The neuro-oncology team are most excited about a new MEK inhibitor drug that goes by the friendly name of ADZ6244. It is a relatively new drug that has been having some success with adults with low grade gliomas. It has only just been approved for under 12 year olds. Tomorrow the national pediatric board will hopefully approve the study and Isabella will hopefully be among the 18-30 children in the US chosen to take part in this phase I trial. The good news is, it is a pill that has to be taken twice a day, no central lines, port-a-caths infusion chemo and all that that entails. But it is relatively new and they do not know the full extent of the side effects (though the list does not look too daunting in the grand scheme of chemo) and the dosage will be worked out on a trial basis as they have not previously administered to children.

We should know by Monday if we can start this new drug. We need to start within three weeks of the MRI, so it should be by the end of next week. If not, there are a few other options, hopefully oral rather IV chemo. So until next week, we are in a holding pattern.

We knew we would reach this day. If learning your child has cancer is like being hit by a bullet train,  being told, after a period of chemo free worry, that the tumor has regrown feels like the steam train has caught up with you (despite desperately trying to escape) till you are finally engulfed by the steam and the piercing sound of the whistle.  We thought we might have 6 months without chemo, we have had nearly three years. We have been lucky. So now we are boarding the train and ready for the next journey. Who knows where it will take us?

We have known from the beginning that we have been pushing reaching for the ultimate treatment  - radiation. As radiation on a developing brain is something to be avoided if possible. We hope this new treatment and whatever follows after will buy us further time till radiation becomes the only option. There is always the hope that newer drugs and treatments will continue to be developed.

Having learnt that we were definitely going to have to start treatment, we decided to tell Isabella on Monday - she needed to hear the news from us in advance of the meeting with the doctors today. She took the news very well, Gregorio is truly a master in putting a positive spin on these things. Isabella has always been very mature since this all began, but now that she is 10 we feel she needs to be part of the discussion, if she wants to be.

So here we are, back on the treatment train. We have upgraded to the new 6 month Children's Hospital visitor pass, "yes, we will be regular visitors." We'll update you once we hear if Isabella is admitted to the new trial and thereafter how she reacts to the treatment and how the tumor responds to it. Meanwhile life continues as normal in the Impavido household - we are back at school, all the activities are back in full swing and Matilde has the Nutcracker auditions this week-end.

As always, thanks for all your support.
Love,
Emma & Gregorio xxx