Tuesday, December 23, 2014

The Year in Review

How often have you said "it seems just yesterday we were doing this?" Well the thought occurred to me as we put up our Christmas tree a couple of weeks ago. However, it was Isabella, aged 12, that said it out loud. Either she too is growing up and beginning to merge one event with another (happens to the best of us) but Isabella has an amazing photographic recall and I think rather that she too has felt this has been a roller coaster year, that has whizzed by. So here we are, cruising into Christmas and 2015 and I thought I'd take a few moments to remember the year the Impavidos have had.

Isabella proved in February that public speaking is a piece of cake. She gave a great speech at the National Brain Tumor Gala Foundation with poise and grace. In 2015 she will jointly MC the evening, if you are in DC  on February 26th and would like to join us that evening to benefit Pediatric Brain Tumor research, please let us know. Isabella continues to love music, gaining her Grade IV in Piano this summer and singing with the Children's Chorus of Washington. Sunday's Chantons Noel concert was lovely. In October Isabella gained her Black Belt at Tae Kwon Do and joined the ranks of the average teenager - she got a phone and seems to be constantly texting and posting on various sites. Pretty normal child! And as you know she has been off treatment since early October. We are eager for January's MRI and hope that things continue to remain stable. We will keep you posted when there is news.

Swimming seems to dominate Matilde's time - if she's not swimming for the school team, its the Sea Devils - we seem to spend quite a few week-ends at swim meets and making sure we have a dry swimming costume. She was chosen to be head girl in September and seems to be rising to the role and her responsibility with pride. She continues to love baking, there seems to be constantly a batch of cookies on the go, in fact the aroma of chocolate chip cookies is wafting in the air right now. She gained her Grade II in piano in the summer. And with the school choir she sang (and gave a reading) at the British Embassy's carol service last week-end. The intimate church, the 'right' tune for Away in A Manager followed by mince pies and mulled wine at the end of the service transported me right back to England. Terribly nostalgic.

Gregorio has taken to running big time and completed his first half marathon on June and finished the Thanksgiving Turkey Chase 10k in pretty cold conditions in record time. He's been learning Turkish and still speaks pretty good Spanish after a tequila or two. Thankfully his work travel commitments continue to be very manageable. Gregorio and I had a romantic week in Turkey, sans enfants at the end of September, complete with a magical hot air balloon ride at sunrise in Cappadocia.

As a family we have traveled a fair amount this year. We had a great week in Jackson Hole, even if Delta conspired again to cause travel havoc on the outward journey. The girls flew solo to London on Independence Day and we enjoyed a very English wedding in the Bath countryside in  July. This was followed by three weeks relaxing in the Alps, where we saw lots of ibex, chamois and marmots and ate plenty of prosciutto, fungi porcini and gelato. The female side of the family returned to England in August and enjoyed gardening in Kent, 99s in Cornwall and saw the Poppies at The Tower of London. The highlight of the year was the amazing wedding in Mexico in November (all the photos here were taken in Mexico). We've had some memorable trips. Meanwhile I have traveled a fair bit with work - the spread of my trips indicative of the variety of themes I am working on - the D-Day beaches in the spring, pre-historic tombs and sites in England and Ireland in the summer and the Venice film festival in September.

What lies ahead? Where will 2015 take us? Maybe somewhere near you? And if not, you are always welcome to visit us here in DC! Wishing you all a very Merry Christmas.  May 2015 bring you many fun and happy new adventures.

With love,
Emma, Gregorio, Isabella & Matilde. xxx


Thursday, October 16, 2014

At 6 am tomorrow....

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.

Wednesday, August 27, 2014

What a summer!

Where have we been for the past couple of months?

Independent girls in London
I left for London via a week driving around Ireland for work - it had been a while since I'd driven on small country roads on the 'wrong' side - and I only went on the wrong side once. Next to leave DC, were the girls  - they flew solo to London and arrived on Independence Day - P & J had decked out the house in suitable decor. We had fun catching up with family and friends while in London - including best friends who left DC last year.


Gregorio arrived for the perfect English country wedding of my cousin. It was a glorious week-end complete with elegant clothes and hats, pimms, family from far and wide, kids frolicking on the lawn, tearful moments and much happiness in the lovely Bath countryside. The walks along the river avon looking at the narrow boats and swans floating by and the roast beef and yorkshire puds at the pub on the Sunday completed the memorable week-end.

Next stop Rome for less than 24 hours. Gregorio (remember the new slim version now that he is obsessed by running....it's a mid-life crisis thing) did serious damage to his credit card picking up a new wardrobe. And we had a wonderful evening catching up with dear friends, some we had not seen since our wedding.

From Rome we drove north to the Alps via Pisa. I had been longing to go up the Leaning Tower since 1980 when we had been turned away because my mother and I were in sundresses. We stopped for a couple of hours, in the heat of the day and climbed up the tower. It was impressive but Mati and I were uneasy with the lean and being at the top and looking down. We tired to get the statutory photo of us trying to hold the tower up. We made it to Susa in time for dinner - Gregorio did brilliantly navigating  through the endless tunnels around Genoa.

Once in Susa we switched off and enjoyed nearly three weeks of hiking and picnics in Italy and France - going where the weather seemed better or whose food we fancied - was it baguette and pate sort of day or a panino with salame e formaggio. Highlights included seeing many ibex at close quarters, fantastic scenery, eating a copious amount of prosciutto and gelato and a night at the refuge at 2,700 m - which nonna also enjoyed with us.

Eating well earned dinner at the refuge with nonna and Emma
On someone's birthday we divided in Milan. Matilde and I went direct to London. Gregorio and Isabella had a delay and a detour to Washington DC. Isabella definitely wins the prize for the best traveler  - they arrived in DC at 1 am (nearly 24 hours after setting off) on Tuesday 5th August, at 9 am they were in the hospital for the monthly check-up and medication. At 10 pm, Isabella was on a flight back to London. She was full of beans as she walked into the arrivals hall at LHR the next morning and kept going all day.
with Peter and poppies at the Tower of London

Selfie at Stonehenge
The girls and I then had three lovely weeks in England staying with dear friends and generally enjoying the English countryside in Kent and Cornwall at 'dream house 1' and dream house 2'. While I worked, the girls picked fruit, made jam, helped in the garden, cleaned the pond, fed the chickens etc. We fitted in some cultural visits with jousting at Hever Castle, Chartwell (Matilde had done a project on Churchill and was fascinated), Stonehenge, poppies at the tower and much more. We had cream teas, sausage rolls, lots of 99s, scampi and chips, cornish pasties, gooseberry fool, summer pudding and more - all classic nostalgic English fare for me.

wearing wellies in England!
gelato a Roma
Meanwhile Gregorio was back in DC managing the fort and yet another round of work in the house. Needless to say, that despite promises the work is not complete and when we got back last Saturday we were greeted with dust and chaos. It always seems such a good idea to have work done while we are away....anyway we are looking forward to getting the house back to normal in the next week or so.

Year 6 - top of primary and Year 8
We spent Monday and Tuesday back in DC at rather a lot of medical appointments - all stable. We are due to end the treatment at the end of October and then three monthly follow ups. The good news is that if there is regrowth we can retreat with the same drug.

Today the girls started back at school. Much excitement. Here is our usual first-day-of-school-smiles-outside-the-front-door photo. And a new year begins. I am sure there will be many tales and adventures to tell. We will update you soon. Highlights to look forward to for some - I am off to the Venice Film Festival on Friday - hey, it's work and someone's got to do it! Gregorio heads to Turkey just after I get back. Italian grandparents are kindly arriving later in the month so that I can then fly out to Turkey and join Gregorio for a few days. Finally I will get to see why he loves Istanbul so much. In November we are heading to Mexico where the girls will be bridesmaids. It's all go.



Lots of love,
Emma et famille xx
















Saturday, June 14, 2014

Cool Parents!


"My parents are cool!" It is not often a pre-teen will say that but this evening Isabella was pleased with the effect her parents had on those at the sports bar where we watched England vs Italy. Sadly (!) you know the result as you read this but it was hilarious when we walked into the bar - Gregorio and Isabella were proud Italians and Matilde and I supporting England (ok I know, our costumes embrace all kingdoms), we had the t-shirts and faces painted to match. An English friend joined us with her two kids also divided in who they were supporting. And her Italian husband, currently in Europe, joined our texting loop to watch the match. A fun evening, even if not all of us were satisfied with the result.


We came home to find results from the piano exams. Isabella passed her grade IV and Matilde passed her grade II.  Phew. We are now gearing up to the summer holidays. It has been a busy couple of weeks work and play wise for all and we are much looking forward to a change of pace and scenery.

Rather complicated summer logistics but the net result is the girls get to fly unaccompanied to London for the first time and are much excited by this. They will arrive on Independence day! Looking forward to my cousin's wedding in England in a couple of weeks. Even more so, now that we have finally found shoes to wear, that we all like. Either, I am getting old, or my daughter really is a young teenager or well, they just don't make nice sensible shoes like they used to! From England we fly to Italy for some relaxing hikes and picnics in the Alps.

Isabella had an MRI a couple of weeks ago and all continues to be stable. Another is scheduled for the day we return from England, just prior to going back to school. In October we will reach the two year mark and most likely stop the current trial drugs. We will let you know.

Otherwise girls are blooming in all they do inside and outside of school, growing up fast but thankfully still think their parents are cool!

Lots of love,
Emma, Gregorio, Isabella and Matilde. xxx


Thursday, May 1, 2014

Today is a good day!

Today is a good day for many reasons:

  • At the hospital today we learnt today that it is almost certain that the trial mek inhibitor drugs Isabella is taking are about to be approved for reuse - I forget the correct term. Basically, Isabella is due to finish her two year trial mid October and beyond that there was an element of uncertainty. With this approval she can be readmitted to the trial and restart the drug, should there be growth to her tumor post October. This is great news, until now there was a nagging feeling at the back of our minds 'what if the tumor regrows, we'll be back to old school chemo'
  • During our monthly visit and collection of medication. We finally agreed on the dates Isabella will need to have medical appointments this summer (it has been a long discussion on what we could and couldn't do because it is a medical trial) and so without further ado I confirmed our flights to Europe. YEAH, summer here we come.
  • Today was a gloriously hot summer's day. On Tuesday I put the heating on in the house and yesterday it bl***y poured and poured, apparently more rain came down yesterday than usually   happens in a month. It has been a long winter and spring has been sporadic but finally it felt good.


So warm sunny weather, summer holiday on the horizon and hope for the future. What more could you ask for? Well, Gregorio is flying home this evening. We've missed him and it has been an intense couple of weeks  - with not very pleasant injury for Mati (thankfully on the mend) and household issues and things to deal with. Not to mention all the usual things that keep us busy at work, school and home.

Gregorio's flying back in time for the Race for Hope on Sunday. We have a strong team again this year. It's never too late to join or support this worthwhile cause in the fight against brain tumors. Go to the website and find our team http://www.braintumorcommunity.org/

Isabella has another MRI towards the end of May. She continues to be well and full of energy. We are gearing up to the end of the school year with tests, piano exams and much more for both Isabella and Mati. It will be another whirlwind couple of months, I am sure. So it feels good to have the summer to look forward to. The girls are excited to be flying one way on their own. They will fly solo for the start of their holidays and arrive in the UK on Independence day! Isabella will actually fly unaccompanied twice as she's returning to DC for about 36 hours mid-holiday to collect more medicine. No fedex was not an option, sadly. 

Lots of love,
Emma.x

Saturday, March 8, 2014

When is spring coming.....

A quick update since the last month.

We had a fantastic week in Wyoming - checking out the downhill skiing in Jackson Hole - a lot of snow and seriously amazing powder. Best friends for mummy and Isabella flew in from London to join us as did some dear friends from DC. In fact they all arrived before us - some technical hitch at our starting airport meant that we arrived 24 late, lost our sense of humor, a day's skiing and vowed never to fly with Delta again or via Minneapolis in the winter...

Once we got there we did have an wonderful trip. Had we had another sunny day, I think Gregorio might have taken the leap into (literally) Corbett's Couloir - quite the vertical piste...another time perhaps. We took a day off downhill and enjoyed the scenery and wildlife in the Grand Teton National Park. The clouds lifted and the sun came out for some iconic Teton photos as seen here. The biggest highlight for me (and possibly others) was finally seeing moose - but not just one, 7. At this time of year they are without antlers and somewhat hidden among the vegetation, so one will have to keep trying for the magical image!

Back in DC I think we have had at least two more bouts of snow. Needless to say, after I had washed and put away all the ski stuff. Sometimes it just doesn't pay to get ahead and be organized!

During the latest snow storm, Gregorio took Isabella to Children's for her latest MRI. Results: all stable. We are now debating how we can maximize our summer in Europe - medical appointments and the fact that they won't release more than 4 weeks of the medication (it being a trial) are adding to the factors we need to keep in mind with our planning.

In other news Isabella is part of the children's chorus performing in an opera (Der Rosenkavalier) at the Kennedy Center tonight with Renee Fleming. Next week she is part of the school's chemistry team competing in the local final against several other schools. She is busy studying up her periodic table.

Tomorrow our clocks are springing forward to Daylight Saving Time, so surely spring will be here soon? Looking ahead to spring, we are seeking runners and walkers to join us at the annual Race for Hope on May 4th to raise funds and awareness for Brain Cancer. If you would like to join us or donate to this valuable cause please look for our team here: http://www.braintumorcommunity.org

Next MRI at the end of May/early June. We will update you when we have more news.

Happy International Women's Day, ladies!

Emma & family. xxx

Thursday, February 6, 2014

Bella Notte

Disclaimer: proud parent moment!


This evening we attended the gala fundraiser for the National Brain Tumor Foundation at the Italian Embassy, entitled Bella Notte. And indeed it was a beautiful evening. It was a well attended event with great food and wine. We had a large crew of great DC friends all contributing to this valuable cause - this evening's proceeds going towards Pediatric Brain Tumor Research.

The evening was about honoring the heroes of pediatric brain tumor research and thanking them for their participation in finding new treatments.

Last week, Dr Packer had called to ask if Isabella would say a few words about her experience on the mek inhibitor trial drug she is taking, on behalf of the kids currently on the trial. I said I'd ask but wasn't that confident she would talk in front of a large crowd. How wrong I was, she jumped at the opportunity. But more importantly, she delivered a fantastic speech with grace and poise and received laughs, rounds of applause and endless congratulations and compliments.

In short, in our opinion, Isabella 'knocked the ball out of the park!" But you can be the judge...

(not sure if this video is working)