Sunday, February 14, 2016

Here we go again!

We feared it, we hoped otherwise but the reality is: Isabella's brain tumor has grown. We were shown last February's MRI, last October's and now this February's. Sadly there is a steady increase and given it's close proximity to the optic nerve now is the time to restart treatment.

This obviously came as a bit of a blow to us all, particularly Isabella. However, we've had nearly one and half years without treatment and the good news is that the trial drug that she was previously taking can be retaken. It has minimal side effects, there will be 'minimal' hospital visits and most importantly it was successful at shrinking the tumor last time around. Good news, here we go again.

For those of you not in this world of continual medical visits - minimal side effects is still not always pleasant. Last time around there were endless in-grown toe nails. Watching one's daughter have these extracted is bad enough, god knows the pain she endures. The skin issues are another side effect that are not always fun to deal with. And there are the usual digestive upsets, though not as bad as traditional chemotherapy. Minimal medical visits....ha! I suspect Isabella saw more medical experts and had more tests last Thursday and Friday than the average person does in years. Sonograms, cardiograms, EKG, blood tests, endless eye examinations, visits with oncologists, neurologists, endocrinologists, cardiologists, more blood tests. The list goes on and on. Yes we were pretty fed up and drained by the end of last week. Many of these tests to ascertain how she was. The reality is, she feels and looks great, which is good. Then there were all the tests that were necessary in order to restart trial treatment.

So I think we are all set to start this week, tests indicate she is fit to start and we have signed the consent forms to be part of the trial. Just a minor issue of needing to remove some baby teeth as requested by the orthodontist , hopefully we will get that done prior to starting the treatment as the drug does slow down the body's ability to heal wounds. This should mean that only three days include medical appointments this week and leave Thursday and Friday free for fun. What a half-term break!

I am reminded of a saying that the girls learnt in the early years at school - when they were learning to share things with other kids: "you get what you get and you don't get upset". Isabella was initially feeling pretty down at the news but once the medical appointments began, she shows incredibly maturity and is cooperative with the doctors and very accepting that this is the situation and so deal with it we must, start the treatment and on we go. We are very proud of the way you takes it all in her stride.

Isabella had a nice pedicure and manicure as a treat this week-end and we had a great day out on the slopes today - even if it was extremely cold 7F (or -14C or lower?) when we arrived this morning  More snow is forecast tonight and tomorrow and we are hoping to escape to the local slopes for a couple of days at the end of the week if all the medical appointments go to plan.

Then it will be monthly visits to see how she is doing and get another course of medication and three monthly MRI's to see what effect the drugs are having.

We will update you when we have more news.
Love
Emma & Gregorio xxx