Thursday, July 28, 2016


Nearly six months back on the treatment and we have confirmed shrinkage.  Need I say more?!

Yesterday's MRI shows approx 20% reduction so the tedium of taking the pills twice a day on an empty stomach ( four of us have synchronized alarms on more devices than you can imagine to avoid missing even one dose) and the annoying side effects to Isabella's skin are worth it. This is great news. We will leave soon on holiday and will depart in a very good mood.

Girls are having a good summer. Sleepovers, shopping and plenty of sports ( swimming and rowing in pretty oppressive DC heat)  are keeping them entertained. We've had some fun outings and also attending a beautiful wedding a couple of weeks ago where the girls were flower girls. We are looking forward to catching up with family and friends in Europe soon.

Some photos from some recent activities in DC.

Next MRI end of October.

Lots of love
The Impavidos xxx

Monday, May 16, 2016

All Stable

First MRI since we restarted treatment shows that the trial drug is continuing to have effect. The official word is that the tumor is stable, and shows no growth since the February MRI. Looking at the figures it might even have shrunk slightly. But they need to see a more significant decrease to officially declare shrinkage. However, stable is VERY good we are much relieved and move forward for another three months.

This means we can now finally start to think about our summer plans. We are still constrained by medical appointments and school holidays but we are very grateful that the treatment is continuing to have a positive effect. Isabella is one of the first to go back on this treatment.

Meanwhile in other news: it is still pouring with rain here and feels more like March than the typical May weather for DC. We did have a lovely sunny day yesterday, though very cold for the 5 K color run that Gregorio and the girls did. I waited at the finish with a cappuccino in hand and everyone's sweatshirts!

We are gearing up towards the end of school with lots of annual events, with choral concerts, sports day, exams, birthdays and more.

Next MRI end of July.

Lots of love,
Emma & Gregorio xxx

Monday, May 2, 2016

Race for Hope 2016

Most of the Team at the start of the race.
Well it poured with rain but this did not dampen spirits. We had an amazing turn out, nearly 60 in Team Impavido. Thank you to all who joined us, along with thousands of other runners and walkers. Isabella strode proudly in the survivor's tribute (see video below - though I am not sure this will work!) and we all ran or walked in record speed


It was a memorable day. Here are some fun photos of the team!

Team Impavido at the end
We abandoned the celebratory lunch in the garden - even the English think twice about 60 in the garden in the we moved to a large pizzeria in Bethesda and took over a private room. A fun and relaxing way to celebrate with dear friends. We are very grateful for their immense support and when the rain stopped all kids (and one or two adults) even went outside and played rugby - an annual tradition for two members of the team.

The donations just keep on rolling in, we are nearly at $4,500 raised by Team Impavido for 2016. Vice President Biden spoke at yesterday's event, though we missed him. His support  for this cause and over $2 million raised so far by Race for Hope 2016 will surely move us closer to better treatments and a cure. Here's hoping.

Many thanks to all who supported near and far.

Lots of love,
Emma, Gregorio, Isabella & Matilde xxx

Sheltering in CVS before the start

Great outfit! Did it keep you dry?

Last but not least!

5k ladies - give me a game of tennis over running any day!

Friday, April 29, 2016

Race for Hope looking back

We have been getting ready for our annual 5K Race for Hope to raise funds and awareness for brain cancer. The forecast is not looking good for Sunday. And despite the largest team ever, I think we might be in for a repeat of our first year in 2009 when it pissed with rain.

This got me thinking about how the team has grown over the years. I thought I would pull up some previous photos to share and you can tell by the light and what we are wearing that the weather has varied greatly each year!

You can still donate to this year's cause by going to Please search for our team.  The event raises much needed funds for research into new treatments. Many thanks for all your support. We will be posting photos of the this year's event.

The original team 2009

In the pissing rain in 2009
Proud fun runner!

English side of the family are in town for the event and we had team t-shirts and were showing off Bella's book, trying to find a publisher. Mati and Peter were on scooters!
Team Impavido with shirts & Bella's book 2010
With her neurologist 2010

Isabella proudly strides in the Survivor's Tribute at the beginning of the event. The nonni were in town for the race.

Survivor's Tribute 2011
Team Impavido 2011
I Nonni 2011
UK family here again to join the team.
Team Impavido 2012 at the end
Team Impavido 2012 before the race.

Survivors 2013
Survivors 2013
2013 another cold start
Impavido Family 2014
Team Impavido 2014


Bella with her oncologist 2015
Glorious day for Team Impavido 2015

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.
Emma & Gregorio xxx

Thursday, January 21, 2016

Cuba Libre

As I sit in a rather cold and snowy DC, bracing itself for snowmageddon 2016, I thought it about time to share some thoughts and colour from our memorable trip over Christmas and New Year to Cuba! 

We had decided late last summer that now was the time to go to Cuba "before it changes" Planning and booking the trip was a challenge - one of my most challenging ever, and that is saying something! Don't believe all you read - it is still a difficult destination to reach for Americans (and thus those of us living in the US) unless you are one of the permitted categories that is allowed to travel there as part of an official organization.  Then add to this, the fact that Cuba is struggling to meet the surge in tourist demand (and it doesn't seem to be slowing down any time soon) and that there is no sense of urgency in responding or resolving a problem from the Cuba end. Despite all this and not totally convinced all our reservations and plans would work out, we were very excited setting off for warmer climes several days before Christmas.

Without a doubt it was a fabulous trip. We had a great time but it was quite an adventure. Cuba is a fascinating country, the music is still ringing in our ears. The people we met were very happy and friendly despite their poverty. People people everywhere - walking across the highways to get from one field to the next, waiting for a lift at the side of the road,  sitting watching the world go by or gathering to listen to music. To say nothing of all the tourists, especially in Havana.  It is a very lush island which I hadn't quite expected  with very vibrant colors everywhere you look - on the buildings, the cars, the art and the people.

The modes of transport were also a source of fascination - the endless horses - either with just a farmer astride smoking a cigar on his way home from the field or with a carriage transporting many people from A to B. And there were many bikes and lorries with passengers standing/some sitting getting from place to place. And then there were all those "old" cars. Two weeks later we were still photographing them, whether it was the 1950’s yank tanks - Buicks, Pontiacs and Chevys or the Ladas from the Soviet Union days. They were surreal in many ways. It felt very cinematographic. 

We did take a couple of rides in brightly coloured 1950s convertibles - cruising along the Malecon at sunset, pausing for photos in Revolution square. Mati wished she had bought her Pink Ladies outfit to really look the part. Driving was an adventure  - we did rent a "modern economy" car. It must have been built in the 1980s, it was filthy and felt like it was falling apart - well it was, for the last two days the driver door wouldn't open and Gregorio, complete with panama hat was doing his Starsky and Hutch impression. Quite the scene. 
At least the AC worked. I played navigator, my usual role. And if I may blow my own trumpet, I'm rather good at it. Despite what my junior colleagues might think, there was a time when we did navigate without iPhones and GPS systems. We got around the island with a rather basic map. The surprising thing was that on the few occasions we needed to verify directions, it didn't matter who you asked, they knew exactly how many meters before you took a turning and the specific landmarks to watch out for. The greater challenge was the quality of the roads - they were full of pot holes and there was a lack of illumination on the roads and some of the cars at night. Towns do have some street signs but they are small and very hard to read. Sometimes the petrol stations had petrol and you had to make sure you filled up when you saw a station, they weren't plentiful. 

Havana was a fun and vibrant city with plenty going on. There are parts of the old town that have received some serious investment but just next to a renovated building you'll see complete decay, balconies being held up with rudimentary wooden poles or complete gaps where the building has collapsed. Despite the washing, the old wires, rubbish and more the former glory and vibrant colours of the building shone through. The setting by the sea is magical. We enjoyed visiting Hemingway's home Finca Vigia - an idyllic setting outside of Havana. A  trip to Floridita's  his favorite haunt for a daiquiri was less enjoyable - rather commercial and touristy. From Havana we drove down to the western part of the island, pausing in Las Terrazas, a national park. It was pristine, calm and organized scenery around a lake where we saw flamingoes. We continued down past Pinar del Rio and stayed in Vinales driving past the tobacco fields. The landscape, particularly at sunset, was beautiful. That was Christmas day - we did not give any presents but we did give a young guy a ride to the next village after work - one hour down the autopista, as his bus had broken down. Given the number of people who congregate on the highways under the bridges it would seem a common occurrence. Cubans are obliged to give people a ride if they have space in the vehicle. We did not know that and thought we were being stopped by the police when we saw an official looking guy blowing a whistle at us! 

Next stop - Varadero. Given that international visitors have been going there for years - we expected more. The beach was nice, but we have seen better ones in the world and the water not that warm. The accommodation - despite selecting a 5-star newer property was really below par and frankly run like a soviet sanitarium, though with a very friendly smile. In the end we could only laugh. It was a relaxing couple of days and a chance to get over various episodes of food poisoning (that was inevitable). We headed south just before New Year's eve, stopping to visit Che Guevara's mausoleum, monument and museum inSanta Clara. It gave us insight into the reverence the Cubans hold for this man. A little more explanation in the museum would be nice - I mean, it is all very well to see the chair his grandmother sat on or a pen he used in 1959...

We saw in the New Year in, in Trinidad. A smaller and more vibrant community than Havana. We stayed in a Casa particulares and met local people who were very friendly and talked about their entrepreneurial ideas and helped us find 'good' places to eat. We went to Cienfuegos for the day - a city founded by a French emigre, the architecture is  neoclassical French in style, though I don't think the French use such vibrant colors in the architectural details. We were pleased we were staying in Trinidad which felt more like a village and easier to walk everywhere, the girls wandered around the market stalls on their own which was fun. In Trinidad, more than anywhere there was music everywhere - in the cafes, in the restaurants and  in the square - Buena Vista Social Club eat your heart out. On January 1st we spent the day at a small beach close by - no infrastructure but full of Cuban families. The water was warmer and cleaner than up north. A magical place to start the new year.

I guess I haven't mentioned the food - which is rather odd for the Impavidos. Well in short it was nothing to write home about. In fact it was bloody awful! It was repetitive and not good. Chicken or pork with beans and rice. There is a lack of ingredients and a lack of any culinary tradition. We went to some fun paladares - family run restaurant where the food was edible to good but they were more about the atmosphere and location. We learnt that not only is food very important to us on holiday but on the few occasions we thought we would wing it and find something on the fly - we had a disaster. The one piece of Christmas we took with us was a panettone  - it came in very handy and never tasted so good. On a couple of our driving days all we had some old bread and pringles crisps. We made up for the lack of good food with mojitos, daiquiris, pina coladas, cuba libre and more (and mocktails for Bella and Mati). On our return we had two nights in Cancun - we didn't get to the hotel restaurant till 10 pm but boy did we enjoy the guacamole and tacos that night!

The thing that struck Mati were the endless cigars. They really are everywhere. Isabella loved all the colorful art and Gregorio the music and free flowing mojitos! Overall one of the wonderful things for us all,  was slowing down. You can let it frustrate and upset you - waiting 2 hours for your luggage to arrive , 3 hours for the rental car to be available or 7 hours delay on departure at Havana airport  or you can just sit back and enjoy the scene and enjoy the moment. Related to this was being out of contact with the world - no texts, no emails, no wifi, no connection full stop. It was wonderfully restorative for us all. We observed the scenery, we talked and laughed and had a great time together. 

Coming back to DC was quite a shock. No heating on arrival at midnight and below freezing outside. The next day we had an injured deer in our gardens. Turns out he had been there most of the time we were away! 

This week-end Isabella is supposed to have her next MRI. However, they are really forecasting a mega snowstorm, the grocery stores were worse than the day before Thanksgiving, the hardware stores are selling out of snow shovels and salt....SO we are in wait and see mode to see if we can make it to the hospital. I think it might be a bit far to walk. Metro has already been declared closed for the week-end, many schools and businesses are closed or will be closing early on Friday. Bella and I will get our exercise shoveling, Mati is happy we have stocked up on baking goods and so will keep us fueled.

Updates on Isabella's MRI if and when there is any news beyond the white stuff!

HAPPY NEW YEAR, we hope to see many of you in 2016

Emma & family xxx
PS - just a few photos - still sifting through them all!