Thursday, December 31, 2009

Goodbye 2009




Crack open the champagne, we can say goodbye to 2009 and truly look forward to a great New Year. Isabella received the final dose of carboplatin today. We all went off to the hospital this morning. Matilde was entertaining in the backseat and Isabella broke out into great laughter, so infectious that we all arrived laughing. Thank you Mati. There were very few  staff today (even doctors and nurses need a break!). Dear Jeanette was the only one available to access Isabella's port.  She has not done so for some months, you could have cut the tension in the room, we were all anxious for the day to be free of port drama -  great relief all round when she hit the bull's eye first time and pulled back loads of blood.

We'd be lying if we didn't admit we've been imagining reaching this day for a while. But no jumping up and down and screaming for joy, just calm relief for having made it and a special 'end of treatment' bead added to her necklace representing this journey.

This time of year leads to reflection by everyone but I think we've been doing that all year so we will look forward to life without chemotherapy. An MRI is scheduled for January 27th. The neuro-oncology team will meet the following Monday to review the scans of her brain and spine. We'll see doctors then also and hopefully all tumors being stable, if not further reduced, we'll get a date to remove that port as soon as possible afterwards. Thereafter we'll have three monthly MRI's and check-ups to monitor the tumors. We're hoping to get as long as possible before we have to consider more chemo, new drugs currently in trial or radiation.

2010 will be a New Year, I'm increasing my work hours, up to four days a week, we have booked a week's skiing in Utah in February, we're going to Disney for Isabella's Make a Wish in April and all things being equal we're planning a big European trip next summer. Family and friends stay tuned we want to see as many of you as possible over on the other side of the pond.  We have made all the usual New Year resolutions, who knows how long they will last! Most importantly we have one big wish for the future, in the meantime we'll take it one MRI at a time.

We'll not be writing so regularly in 2010, only when there is news. If you sign up for the RSS feed you'll get the update automatically.

Wishing you all a very bright HAPPY NEW YEAR.

With lots of love,

Emma & Gregorio. xxx

PS somebody sent me a gorgeous blue table runner for Christmas, but there was no sender's name on the package. Thank you.

Thursday, December 24, 2009

Let it snow, let it snow, let it snow!



Just in case you missed it, Washington DC received several feet of snow last week-end. I know many of you have seen the white stuff this past week but this was a pretty epic DC storm. It began Friday night and didn't stop till Saturday evening. We had tickets to the ICE Winter wonderland on Saturday morning at the National Harbor. They said they would honor the tickets whatever time we got there. We were only about an hour later than our ticket time but it was quite an adventure to get there. Getting down our street was only the start, none of the roads were clear, not even the major roads and it was decidedly a blizzard out there. This is Mass Ave at 10 am on Saturday morning and the Washington Monument later in the afternoon.



Those that were out were mainly in 4WD, we were in the mommie mobile! A 40 minute journey took us nearly two hours. At one point, we were going down an unploughed hill and I had images of being stuck there till Monday and beyond. My first thought - I only have enough medication for Isabella till this evening. But, we were fully kitted in our ski gear, we'll just walk somewhere and get home somehow. My three maps told me there was no right turn through to our destination at the bottom of the hill we were going down, contrary to what Gregorio's TomTom indicated.....You can imagine the initial exchange between G and I! Thankfully Gregorio and I do make a good team. Peter, you taught me how to read a map well and with absolute silence in the car Gregorio is a damn good driver even under such treacherous conditions. We managed to get to the bottom and have enough momentum to get up the next street to the left and crawled by sheer will power to the top of the hill and returned to a flat road, albeit still covered in snow. We eventually made it to National Harbor and found a covered car park - we didn't have the shovel with us and we didn't fancy digging ourselves out with a frisbee. Anyway we finally made it to ICE, needless to say we had the place to ourselves and it was spectacular. It was 9 F inside, they gave us warm coats which we put on top of our ski gear and we felt just right! The ice penguins in the igloo, the ice castle, the slides, the ice nativity scene. It was really beautiful. The drive home was less adventurous but we were pleased to be back inside.

















On Sunday, Gregorio, whom as many of you know, does not willingly get out of bed on a Sunday morning, was up shoveling snow off the driveway at 8am. Shortly before 10 we were on our way to the ski slopes. It was fantastic snow and crystal clear blue skies with sunshine. The perfect day to start a new ski season. Girls loved it too and we bumped into some school friends who had not managed to fly back to Spain due to the weather. That evening we went to our friend's annual carols and curry party. It is always such a lovely occasion and a great way to start Christmas. During the party Gregorio recieved some good news: Mr Obama had kindly closed the federal government on Monday due to the weather and so Gregorio's office was closed also. Monday we were on the slopes by 10:30! Two day's skiing and snow shoveling we were happy but exhausted. Here we are moosing around while taking a break from the slopes.






I had hoped to fit in another visit to the slopes this week but last minute Christmas shopping and baking has taken over. There was a momentary panic that Santa (courtesy of amazon.com) might not deliver on time due to the weather but all has arrived. Isabella decided she wanted to bake cheesey scones for all the staff in the oncology clinic. They were then all packaged up into individual gift bags with personalized cards for everyone. She put a lot of love and care into each one. Very sweet. We had quite a production line going in the kitchen on Tuesday morning. Isabella made about 50 scones, I was on the other side of the kitchen baking mince pies and Matilde found her corner and made her own concoction "I need more baking powder, now more milk, hmmm now a bit of clementine juice" and so the ingredients were stirred in as she thought of something else that needed to be added. The mixture was then covered and labeled "Matilde's reszepe" and put in the fridge. When asked what she was going to do with it, she replied "I'm not sure, but right now I am waiting for the butter to rise!!" Unique. 


We had a very quick and easy visit to Children's this morning. Accessed without trouble, handed out her gifts, blood counts still quite good and chemo administered. A number of the staff were not in today and many won't be there next week when we conclude this chapter. Those that we did see gave Isabella big hugs and congratulations for having made it through the year. ONE more round on New Year's Eve.


Meanwhile it is a lovely sunny crisp day in DC and there is still plenty of snow around to create the magical white Christmas. Gregorio has prepared this evening's menu: baby octopus soup, linguine alle vongole and swordfish steaks and a selection of festive sorbets. And tomorrow we are lunching with friends. Marvellous. Now it is time to read our special messages that have arrived by email from Santa and then we can even track his deliveries on the internet. Yes we are going full out with the whole Santa story. Having seen the REAL Santa at the North Pole there is no shadow of a doubt that he exists!


We enjoyed a lovely candlelit carol concert at the National Cathedral last night and this evening, before tucking into our fishy feast we'll head down to see the live nativity scene at a church up the street.


Many of you are already tucking into Christmas and unwrapping presents as I hit publish. 


Wishing you all a VERY Merry Christmas from Washington DC.


More next week.


Lots of love,
Emma & Gregorio xxx
















Wednesday, December 16, 2009

North Pole

Believe it or not we went to the North Pole last Saturday. We only told the girls just before bedtime on Friday that we were going somewhere happy up north. Matilde's face was a picture, her eyes popped out and her jaw dropped "not the North Pole?!" Needless to say they immediately ran off to pack a bag of essentials. We had to check in at Dulles airport at 7 am on Saturday. We proceeded through security with our boarding passes to gate D7. While we waited, there were elves to entertain and paint faces. We even had an overbooking situation to add to the authentic airport experience. On board the crew kept up the jolly theme from the decor to the safety demo said to the poem ''Twas the night before Christmas'. Thankfully we had special North Pole Jet fuel on board and were able to make the journey in 25 mins [yes we really were flying!] Captain Bob kindly kept the radio on the loud speaker so that we could follow the journey. "This is Captain Bob, do we have clearance to land?" "Ho ho ho, yes you do" came back the reply "follow the red nose in to the gate!" We emerged [at Gate D29] and were greeted to a chorus of fairies, jugglers, elves, the works. We even found Papa', who had managed to get another flight and meet us there directly! The highlight of course, was sitting on Father Christmas' knee and receiving a bagful of goodies. A truly magical morning for all. The fact that we then walked out of the shaded area of D29 and took the people mover back to the main terminal didn't seem to enter their minds.

United Airlines has been offering these flights of fantasy for many years at a number of locations around the US and other parts of the world. My opinion of United has changed. They provided a very happy day for over 200 people.
Who were the lucky ones? Sick children and their families from the Washington DC area. This is just another example of the happiness many charitable organisations bring to children with cancer. Thank you to all of you who donate
or vounteer for one of these supportive organisations. A child's smile wipes away all the crap they have to endure.

Nurse Kathy and Debbie accessed the port very quickly this morning. They seemed to have discovered the magic position. Blood counts still pretty high, full dose of carbo and half of vincristine administered. Record breaking visit in and out in just four hours. So Isabella is already back at school, wearing her latest gift from the hospital - a hat that reads "Cancer Fears Me!" Of course she believes in the sentiment but she did also see her fellow patient, 12 year old Michael last week and he was wearing one!

Highlights to look forward to this coming week include a visit to ICE at the National Harbor. Ice sculptors from around the world have created a winter wonderland with ice slides, lights, music and more. A chilly 9 F inside so we'll be wrapping up warm. Then there's the Garden of Lights, some mince pie baking and the making of glitter creations and maybe a Carol service at the National Cathedral to balance the meaning of Christmas. In case you hadn't realized we LOVE this time of year with all the fun activities there are to do in the DC area, well who doesn't?

A big snow storm is forecast on Saturday so we are pulling out the thermals and waxing down the skis. We might hit the slopes on Sunday and escape the Christmas shopping maddness.

We are still behaving for the Elf on the Shelf.

Just in case you've lost track there are just TWO sessions to go. More next week.

Happy Christmas,

Lots of love
Emma & Gregorio xxx

Wednesday, December 9, 2009

It's December, we are in the final cycle!

We have had a good couple of weeks, full of performances. The school pantomine of Cinders was wonderful. Watching the enjoyment on the kids' faces was magical. Everyone in Years 3 to 6 had a role, no matter how big or small, they all felt equally as important. Isabella sang her heart out in the chorus with the other street urchins and she played that triangle and with gusto and in time! Matilde's pilgrim lunch was also a great success. Turns out Matilde loves pumpkin pie this year. This week the school concert featured the school choirs and some of the upper school kids rocking the night away on electric guitars and drums. Much enjoyment all round, particularly by the baldy on my left. And then yesterday Matilde was part of the Key Stage 1 holiday production about ballooning around the world. Much to Matilde's delight she was a Scottish dancer.

It is funny how we have two very different daughters. Isabella is the English looking one, but she is more fluent in Italian and enjoys all things Italian. Matilde, the darker one, is interested in all things British and is totally fascinated by Scotland at the moment. On Saturday morning, it was freezing (quite literally) and snow/rain were coming down thick and fast as we stood on the streets of Alexandria and watched the Scottish Christmas Parade. I have never seen so many kilts and bagpipes in one space. Matilde loved it. Saturday turned into a rather British day. In the afternoon I took the family to their first ever pantomine (aside from the production of Cinders a week earlier, about which I had been told "mummy, it is the story of Cinderella but it is different and funny!"). Matilde was called onto the stage and Mother Goose sang her a tune. "Oh yes she did!" Gregorio was screaming as loud as any of the kids "he's behind you"

Well here we are again at the hospital for the final cycle. Only drama so far is the lack of tech in the oncology pharmacy to make up the chemotherapy. As I write this I am already imagining a complicated afternoon logistically. Well gives me something to think about as we sit and wait.

Meanwhile Tommy the Elf arrived in our house yesterday evening. Elf sits on the shelf around the house and watches if you are good or bad and reports back to Santa. He flies away to Santa each night and you find him in a different location every morning. Totally magic. When I took him out of the box, Isabella says "Mati, be careful, don't touch him or you will break the magic!" This morning we are all running around to get ready and there is an almighty scream from Isabella in the sunroom, "so it is magic, because he is now in a different place." I sincerely hope that the magic lasts as long as possible. Matilde definitely believes but she is not taking any chances with Santa missing her requests, she has written about five letters to Santir (sic) so far. She is hoping to receive two dolls, so she wrote doll twice on the list and macup and pirfyoom (sound it out you'll get it!)
Isabella has more specifc requests. She's hoping for a Dior lipstick and a Mexican cookbook! We'll have more to report on the magic of Santa Claus next week....

3 rounds to go, December 17, 24 and 31. The MRI is scheduled for January 27th, 2010 and we will be talking to surgeons this month to schedule a date to take that pesky port out after the MRI. 2010 here we come!

Lots of love,
Emma & Gregorio xxx