Tuesday, May 8, 2012

13 minutes knocked off personal record!

This Sunday, we donned our running shoes and joined 11,000 others in the 15th Annual Race for Hope. We had a large and supportive team of all ages who all completed the 5K course with varying ease. I had done little training this year and was overtaken by several 8 year olds in our team, but not our own Matilde, who despite having plotted various short cut tactics with Peter AND they were on scooters, came in after me!

Gregorio, rather annoyingly still beat me, despite having done absolutely NO training. And several others, having done the course once with their children as a warm up, then decided to go round again!

As always it is a very moving event to see the survivors parade down the street at the start the race. Isabella strode forth at the front of the line, waving her yellow balloon with pride and a great smile. But even more moving was the moment she came running over the finish line, with tears in her eyes, screaming "I beat my record by 13 minutes!' It was magical. Isabella, like her parents is no runner, but she is a fighter and as we continue to see she is determined and can do anything if she sets her mind to it.

We are grateful to all who ran and walked with us and even more grateful to all who contributed to the cause. Over two million dollars has been raised (and still counting) in the fight again brain cancer. THANK YOU.

Some of Team Impavido at the end of the Race
A short while later Team Impavido joined us for a fun and relaxing BBQ in the garden to celebrate our sporting achievements of the morning. And then later in the afternoon, Isabella and the Children's Chorus of Washington sang beautifully in their end of year Spring performance. Quite some day. We were pleased to share it with so many friends and family.

End of school activities are keeping us very busy, as is the norm at this time of year. We had a wonderful whirlwind visit from Peter and Janie. Gregorio and I are finalizing our plans and designs for the bathroom renovations and confirming our summer travel plans. There is never a dull moment in this household.

Girls are also focused on their birthday celebration plans - hard to believe we shall have a 10 year old daughter this year - where did that decade go?! Next MRI will be late June and we'll update you again then, if not before.

Lots of love,
Emma & Gregorio. xxx

Thursday, April 12, 2012

A long slow sigh of relief.

We were at the hospital today to review the results from Isabella's latest MRI. They have decided that there is no increased growth to the tumor. We have been on tenterhooks for the past three months as the previous  scan seemed to indicate a slight increase and we were preparing ourselves for further treatment. There is a high probability that at some point in the future there will be further treatment but, not for now. What they can see is a cyst that is attached to the tumor which has increased in size, however there is no change to her vision or any other neurological change that leads them to recommend intervening to relieve any pressure at this time. This is good news and so we will continue to monitor the situation every three months.

So we will be back at the end of June for another MRI and beyond that we are busy making our summer travel plans. We will move forward with our dreams and plans until we are told otherwise. This latest MRI Isabella completed without sedation - a first and, let me tell you, an impressive feat. She lay still in that cool room for over two hours. The banging/buzzing noise is loud and relentless and I wasn't even in the tunnel. We are very pleased that she is now capable of doing this  - less risk and no preparation required.

The MRI was just the start of the Easter holiday fun. Emma has come to stay and provided great entertainment for the Eggtravanza holiday camp. There has been much activity and creativity culminating in this evening's Asian restaurant. We've also had a lovely trip down to Charlottesville to visit Jefferson's home, Monticello. The thing that I was most pleased to see in the beautiful gardens were the daisies at the edge of the lawn. No I am not smirking at them having daisies on the perfectly manicured lawn, but rather I haven't seen daisies in the US, ever. And we had a fun afternoon tasting wine at a local winery run by Italians. After a delightful Easter sunday lunch complete with Emma's hit: summer pudding we rounded off the Easter celebrations participating in the Easter Egg roll at the White House.

Back to school on Monday. We have a busy term  ahead of us and I am sure we'll be updating you with our news. In the meantime we are gearing up for the Race for Hope on May 6th. We are gathering eager runners and walkers to join Team Impavido and help us raise awareness and much needed support in the fight against Brain Cancer. Please seek out our team at:  www.curebraintumors.org  and consider joining us or making a donation. We are grateful for all contributions, however big or small.

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



Wednesday, March 14, 2012

Mummy, I've been awake since 4:42....

I don't know what time the residents of 1600 Penn Ave awoke this morning, but Matilde was very excited and wide awake, when she crawled into bed with me at 4:56 am! The reason: she was part of the welcoming committee on the lawn of the White House this morning!

Matilde and Niamh
Matilde has been recently elected to the student council. The primary school student council pupils and the secondary pupils of the British School were invited to be part of the official welcoming ceremony for PM David Cameron at the White House. Matilde has been beyond excitement for several days. I am not sure she knew who David Cameron was but she does know Obama. I had instructed her to smile at any British TV cameras, and if asked she was wearing her British hat today (unlike when she met British Royalty last year!) She was smiling like a cheshire cat and proudly wearing her student council badge when she set off with Gregorio at 6:20 am.

The proud Anglo-American. A special relationship.
I have been monitoring the news all day to see if I could spot anything about the event - but nothing. When I picked her up from school, she seemed a little exhausted and fed up. "It was hot and too much standing!" In fact the temperatures were in the 80s today and at the crucial moment she slipped from the front row and retreated to a spot of shade. She missed shaking hands with the two leaders, as some of the kids did but she seemed happy to have been at the White House and seen the official ceremony. When I asked her friend, Niamh how the day had been, she explained that everyone had to go through the security line and it took forever, but Matilde and I are American and we went through quickly! The beauty of being multi-national :)


And just to prove they were there too!

A memorable day though.  And we'll be returning to the White House soon. We have won lottery tickets (well thank you Emma) to the White House Easter Egg roll on Easter Monday (watch this space for photos) and Isabella's class will be taking a tour of the inside of the White House in the coming months.

Crazy warm weather here, spring is springing.

More news soon.
Love,
Emma and co xxx

Monday, February 27, 2012

The Best Holyday Ever!

We are just back from a winter wonderland out west and Matilde described it as the 'best holiday ever!' The trip to Yellowstone in winter with friends has been brewing for many months and a hot topic of conversation for us all "so can we talk about Yellowstone?" was a constant refrain  in NW DC.

Few people visit Yellowstone in winter but a dear colleague has been talking about it for several years. And this year, I finally convinced Gregorio that it was worth sacrificing a few days of downhill skiing to experience the beauty of Yellowstone covered in snow. Having had no snow (amazingly) in DC this year and positively mild temperatures, the snowy cold landscapes were particularly special.

From the moment we landed in laid back Bozeman, Montana the magic began. Cowboy Michael took the ten of us on a scenic drive through the Gallatin Mountains through the North Entrance of Yellowstone National Park, into Wyoming and onto Mammoth Hot Springs. The land was covered in snow and a two hour airport transfer turned into a wildlife safari in which we spotted bald headed eagles, golden eagles, elk, mule deer, white-tail deer, coyotes eating a carcass and much more.

Mammoth Hot Springs had a certain dated charm to it and proved a very pleasant stay for two nights. We had an early morning start in order to join a 'wake up to wildlife' journey which took us at dawn, through a light snow blizzard into the Lamar Valley. We thought we were guaranteed a sighting of wolves; but here the animals are wild, this is not a zoo and they don't appear just when you want them. However, we did spot many other animals (some of things mentioned above plus endless herds of bison, big horn sheep and various birds and ducks) and the animal paparazzi were out in full force in our van! There was competition to capture the award-wining shot. I think we all excelled in quantity of shots taken, by the end of the tour the backseat girls were sighing "oh mummy, not another bison photo!"

The vast sense of space was awe-inspiring. More impressive was the fact that we had the park to ourselves, quite literally.   In the afternoon, the skies cleared and the sun shone. We hired snowshoes and went for a beautiful hike above the travertine terraced springs. It was hard work and quite hilarious running through the deep snow. That evening some of us rewarded our efforts with a soak in the changing colored hot tub, while looking up at the stars above.

From Mammoth we headed south, deep into the park to Old Faithful. A picturesque morning took us through changing landscape on a specially equipped snow coach - from desolate barren plains, to rocky cliffs,  onto vast flowing rivers to destroyed forests, and lush snow-covered alpine vistas to the magical mystery of the geo-thermal activity that lies beneath.  It is true we had not realized just how extensive the thermal features are in Yellowstone, despite Isabella repeating that it is a vast extinct volcano. The contrast between the steam puffing into the sky and the clear cold air is extraordinary.  The snow had melted in these areas and often we would see animals warming themselves up from the heat below.

The guide was fantastic pointing out all the animals and answering all our questions about the park and its history. Though we did nod off when he announced "and now for a bit of personal history!" This week Yellowstone celebrates 140 years as a National Park "for the benefit and enjoyment of the people." It is an amazing place that many Americans visit at least once. Though, as I have said, few in the winter months. If you are seeking magnificent winter landscapes, an opportunity to view animals in the wild up close and a need to experience the tranquility of natural beauty and the revitalization it will give you - this is the trip for you!

At Old Faithful the snow was much deeper, we were at about 7, 500 ft. The snow lodge was a more modern and very comfortable structure. Our friends had thought we were in the quaint and quirkly Old Faithful Inn - but that is only open in the summer, due to the lack of heating inside. Another trip, I think.  Here at Old Faithful the kids were able to roam and feel completely at home - building snow caves, playing hide 'n' seek. We were about the only young families in the hotel (British School half term differs to US spring-break) and were quickly known as 'the English group!'

During the day there were quite a lot of visitors who come into Old Faithful (either on snow coaches or snow mobiles - which Gregorio was secretly eyeing up) but by mid-afternoon we had the place to ourselves. Old Faithful geyser was a 5 minute walk away, it erupts approximately every 90 minutes and we caught its showering mist high into the sky in several different lights. In the evening we set off in a bombardier - a small converted van/tank with skis built in the 1940s originally for transporting Canadian school children. Inside it was very noisy but warm and cosy - off we went on our nighttime adventure. Kitted out in thermals and full ski wear, we took our torches and followed our driver/guide Rachel - quite literally into the middle of nowhere. She then asked us to switch off our torches and listen. It was pitch black and all we could hear was what sounded like ragu bubbling on the stove top - when we turned them back on we saw bubbling mud pots. Further on we could hear a pressure cooker or or had polly put the kettle on? Our flickering lights revealed boiling pools of water and steaming fumaroles. There was no other sound, bar one of two of the kids wondering if the coyote would have followed us down the path?! Extremely cold but the sounds and sites were amazing. Back in the bombardier Rachel handed out a much appreciated thermos of hot chocolate for us all.

On Valentine's day we decided to all try cross country skiing - we can all ski downhill, how hard can it be?Well the answer is - on the flat,  first thing in the morning, with beautiful scenery around - not too difficult at all. We did a 5 mile round trip ski surrounded by geysers spurting high into the air and pools of water boiling away. The air was crisp and the sky clear blue. The name of our destination "Morning Glory" was very fitting. After lunch the children decided they would take it easy in the hotel. The four adults were buoyed up by our success in the morning and a couple of glasses of wine - so we thought we'd kick it up a notch. Gregorio led the way, downhill, through the trees....weeeeeeeee, crash. Matt's fall was even more comical - it was a classic cartoon shot - head first , skis in the air. I don't think Penny and I have ever laughed so much. Next up - me! And let me tell you getting back up on cross country skis in deep snow is not easy. I tried to hoist myself up using a pine tree close by. No good, I took the skis off, hoping to start again, but then found myself in thigh deep snow. In the end my prince charming came to the rescue and somehow we were all standing again. Hilarious.

We had a very jolly last night in Yellowstone and then headed up to Big Sky, Montana the next day for four days of downhill skiing. We had a lovely cabin for all ten of us that we could ski-in and ski-out. So having stocked up at the Hungry Moose Deli on the way up the mountain we settled in. As many of you know, Gregorio is a chef extraordinaire on holiday and his menu was extremely well received. It does tend to feature a wide variety of delicious carbohydrates but thankfully when you are skiing for about six hours a day you can indulge without feeling guilty! We were able to relax by the log fire, under the gaze of a former caribou, or chill out with mulled wine in the hot tub and then tuck into some delicious hearty fare.  The skiing was fantastic, there was nobody on the slopes - the adults were exhausted at the end of day one given how long the pistes were and the fact that there was no waiting in line at the lifts. We had a mixture of sun and snow -  overall a couple of great days skiing.  Isabella and Matilde were in ski school mastering parallel turns. It won't be long before they will surpass their mother on the slopes!

Our return back to DC turned into another adventure. A technical hitch to our plane meant we sat at Bozeman airport for six hours - perhaps we should have taken the earlier flight with our friends but we hadn't wanted to get up at 4:30 am. While waiting at Bozeman, we got talking to a Frenchman near us, an amateur photographer who was a little fed up at the delay given his rather exciting week-end. He had been with a group of hiker/photographers at 8,500ft a couple of days earlier filming wildlife - they had even seen a rare snow leopard. However, then the snow had started coming down thick and fast (we got stuck in the same snow storm, trying to find our way back to the house that afternoon - it was pretty heavy!) The photographers were stranded up there between 2 pm on Saturday and 9 am on Sunday morning. They had stayed awake all night trying to keep a fire going and watched helicopter after helicopter circle overhead but unable to land because of the weather or the risk of avalanche. Despite the waist deep snow and lack of food or shelter, the man seemed very pleased to have some great photos that he showed us during our wait. An amazing story.

When we did eventually make it to Minneapolis we had missed all our connections to DC. We took the hotel vouchers and ended our holiday at a Day's Inn motel, overlooking some highway. The girls were impressed they gave us an emergency overnight kit  - t-shirt and toothbrush and toothpaste. The girls and I actually had a change of clothes for the next day. Gregorio, who had been the recipient of my coffee when I had tripped that morning, was not so lucky! It was dark and snowing when we arrived at our luxurious suite for the night; not knowing Minneapolis, I led the family to the only place I had heard about - the largest shopping mall in America. We wandered around in the warmth and dry of the mall and then found something to eat.  We made it back to DC 24 hours later than planned, but what a great holiday.

Let me know if you are interested in seeing any of the photos. There are rather a few that I am wading my way through :)

Spring seems to be in the air back in DC, so we have packed up our ski gear for another year. Isabella's next MRI will be in early April. We will have some news sometime around Easter - depending on whether she manages to complete the full brain and spine scan (nearly two hours) without sedation. We have a slot booked with sedation as a back-up later in the week.

Hope all is well with you all.

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

Saturday, December 17, 2011

Hallelujah!

Hallelujah Christmas is nearly here! I am sure, that you are all beginning to get into the Christmas spirit. In our household we have been singing Christmas carols since September so we have been dreaming about the sparkling lights, presents under the tree and so much more for quite some time.

Kennedy Center concert hall, choir is right at the back!
Isabella smiling proudly in the middle. 
Last week Isabella sang with her choir, the Children's Chorus of Washington at the Kennedy Center. They were accompanying the Four Canadian Tenors and the National Symphony Orchestra. I am not sure you will believe it from two totally biased parents, but it was a beautiful concert. I was really moved, there was even some sniffing from the bald man to my left! Gregorio had been muttering about the endless rehearsals and the rather staid uniform that they have to wear but he too thought it was a wonderful mix of songs and we felt very proud of Isabella. We could not make out Isabella's facial expressions but we could read her body language and when the Tenors threw in some Italian songs such as O Sole Mio and some

Morricone theme tunes we just knew she was turning to her fellow choristers and saying something like "you know I'm Italian, I can understand what they were singing!"  She was at the Kennedy Center for five nights in a row, getting home at 10 or 11 o'clock at night. I was concerned she would not make it but she loved every evening and couldn't wait till the next day. Isabella is very shy about standing up in front of others, so this was a very positive experience. This week-end the choir has their own Nordic Winter concert at a church downtown. They will be singing in Finnish, Swedish, Norwegian, French, Hebrew, oh and English. I was impressed at the fact that she can sing (because I most certainly can't) never mind in languages one doesn't even speak!

Meanwhile, across town at the Warner Theater, Matilde has been skittering and smiling in the Washington Ballet's  Nutcracker. She is loving it even more than last year. This year she is a snow angel and oh my goodness "did you see the costumes? and do you know we are on stage with the BIG ballerinas" She already has her sights on what she would like to be next year! Despite it being a phenomenal military operation (444 children spread over 5 different casts each with on average eight performances over the course of a month) it is a magical show. I have caught snip-bits from the wings and Gregorio, Isabella and I shall attend the final performance on Christmas Eve. As Tchaikovsky's score rings in our head we shall slip merrily into our annual traditions.



There is absolutely no way one can tinker with the Christmas traditions in our household. Gregorio and I have been informed: Papa' is cooking on the 24th and the menu includes: polipetti alla luciana (baby octopus), linguine alle vongole (clams) and sea bass. And the following day Mummy will be knocking up a turkey and roast potato feast. And is Isabella ever unique - she loves brussel sprouts!

There is another reason to rejoice this week. Isabella and Matilde gained a nephew. Little Franklin was born on Monday and is settling in at home in London.

We are looking forward to slowing down over the Christmas and New Year period. It has been a fun but busy couple of months. We hope to connect with many of you over the season but better still we hope to see many of you in 2012. The Impavido travel agent is already gearing up with a trip to Yellowstone and the Rockies in February and Europe in the summer. Stay tuned for when we shall be making an appearance near you!

Isabella's next MRI will be at the end of February. We are hoping for an all stable result which will take us to two good years post chemo and we will be upgraded to scans only every six months. This will mean a longer stretch of living life to the full before scanxiety kicks in.

May your Christmas, like ours, be filled with choirs of singing snow angels.

Buon natale ed un felice e sereno 2012.
Emma, Gregorio, Isabella and Matilde. xxx

Thursday, October 27, 2011

phew....all stable

Here we are at the end of October. Another scan behind us. And at the end of the day, I can report that all is essentially stable, nothing to worry about, but it was a tense day...getting to this point.

Gregorio says we should just wait till the follow-up meeting in the oncology clinic next Thursday, but would you be able to wait one week? I  know I am the pestering mother, asking for information until I get it. I cannot live in ignorance. I want to know - good or bad - I want the news now. I am not patient at the best of times. Then we can prepare ourselves for the next step and how we deal with imparting the information to Isabella and Matilde. Isabella's neurologist replied to my email this morning that he was out of town and not back till Monday. In a separate message, the wonderful nurse practitioner explains that there was a lack of neuro specialists to review the scans yesterday, hence the delay. Early afternoon today, she sends us the preliminary report with the words "there is some increase but do not panic yet. I am going down to radiology with Dr X to take a look". Do not panic YET? Yeah.... right.....meanwhile we did the shopping, we bumped into our dear old neighbor, who knows only too well about the journey cancer can take, though I took seeing her to be a good omen....another message comes in from Children's "we are going to review her scans in the next 30 minutes"......an hour passes and in comes the news "there is some slight change but nothing to worry about, we will continue to monitor everything but essentially all still stable". A huge sigh of relief. At this point I do call Gregorio with the news. He said he had lost 4kg! I resorted to eating chocolate. It takes two.

Anyway this aggravating wait and exchange of information only lasted a day  - with all communication done by email, as Isabella was constantly by my side and I did not want to alarm her unnecessarily. However, she gets the joy and relief now. She walks into the dining room ce soir "ah a mojito for mummy and papa' we must be celebrating ME!" A big grin, and rightfully so.

If only we could have asked Siri the answer for Isabella's latest MRI results. Yes I upgraded from the first generation of iPhone to the all new singing and talking 4s. Let me tell you Siri has the answers to most things: the meaning of life (I like her answer about chocolate the best), she looked up the answer to the $64 million on the internet; she can find my husband; apparently if a woodchuck could chuck wood, it would chuck 42! She responds to questions about love - in English and French though she didn't understand my German for the best way to the train station! There was a definite note of sarcasm in her reply to my question about the whereabouts of my phone "who would you like to call, Emma?" Hours of entertainment.

We have had a relaxing half term and now we are gearing up for a pumpkin fest this week-end. Watch out for our devil and witch. No prizes for guessing how we will be dressed. Yeehaw!

The rehearsals for the Nutcracker and the Children's Chorus of Washington are picking up. If you are interested in catching our little performers on stage, let me know and I'll give you the relevant dates.

We'll update you when we have more news.
Lots of love,
Emma and Gregorio. xxxx

Tuesday, September 20, 2011

Another year

This week you have been diligently logging on to this blog for three years to get updates on Isabella's health. Three years, it is hard to believe how far we have come. She is looking radiant and happy and I thought it was time we updated the picture of our principessa. Hence the new header. The original picture was taken in May 2008 - prior to her being diagnosed with a brain tumor. This new picture was taken on her sister's birthday, this May. We were off to a wedding. The girls were extremely excited to be attending their first wedding (well they were in nappies at the previous one they attended).

Since our last update, Isabella and Mati enjoyed the rest of their summer holidays entertaining friends from Italy and then England. The Greek Taverna, fairy gardens and general activities were 'like no other' summer camp. Thanks Miss D. The summer ended on a memorable note with an earthquake (in Washington?!) a hurricane and then torrential flooding. And now it feels like autumn.

And so back to school we go. Like many of you, we are slowly getting into our 'new year' routines with school, homework and after school activities. We are, needless to say, busier than ever. Matilde is doing ballet again and looking forward to the Nutcracker auditions next week. Isabella has joined the Children's Chorus of Washington - she loves  singing and is looking forward to performing at the Kennedy Center with the National Symphony Orchestra in December. And I am looking forward to an added dimension in my logistical planning - two children, two theaters and multiple performances! Not to mention piano, tennis, Italian classes and tae kwon do.

Lots of fun things to look forward to as we move through the next few months. Isabella will have another MRI at the end of October. If the following one in January is stable we will probably move to scans every six months. The oncologist and the neurologist have conflicting opinion as to when one can actually move to every six months. We'll probably be happier to have them further apart - while we do enjoy life to the full between each MRI there is no doubt we suffer from scaniexty for a few days before until we receive the all stable news.

Lots of love,
Emma and Gregorio xxx