The past month seems to have been a stream of parties, end of school year activities, choir concerts etc and now Christmas is just round the corner. Before we sit down and tuck into some sumptuous feasts we wanted to take a breath and catch up.
Isabella had another MRI earlier this month. The results showed either - continued stability or further shrinkage (even if very minute) - depending on which doctor you spoke to. The good news is the magic pills are continuing to have a positive effect on the brain tumor. This is great news and just what we needed to take us forward into Christmas and beyond. There will be another MRI at the beginning of March sometime, we will continue with this drug till October assuming Isabella continues to tolerate it well with minimal side effects.
Yesterday her neurologist called to ask if Isabella and we wouldn't mind being mentioned and honoured during the National Brain Tumor Foundation Gala Fundraiser in February. The story of these new mek inhibitor drugs that she is taking is a very positive one and they want to share this with the wider Brain Tumor community to show what new drugs are becoming available and generate further funds for medical research. Both girls are very excited about attending the event, and like any girls, worried about what they are going to wear!
Isabella has been performing with her choir in several beautiful Christmas concerts. Matilde, no longer a ballerina has enjoyed her week-ends free from Nutcracker rehearsals. However, she is going to watch the show (and see some friends perform) this afternoon. As she has never seen the whole show! Both girls passed their respective piano exams and are now ready to start the next Grade. Isabella is determined to take Gregorio up on his offer - if she passes Grade 5, he'll buy a baby grand piano. He had better start saving, she's about to start Grade 4!
Gregorio is continuing to run often and is immensely satisfied, rightly so, of his increased fitness but more importantly he has a new zest for life and this is having a positive effect on us all. He completed the 10 K Turkey Chaser on Thanksgiving morning in freezing conditions and now has his eyes set on greater things. A few muscular setbacks this week will hopefully not sway him from his path towards a half marathon in March.
The Italian grandparents arrived this week and we are now all settling into the Christmas festivities. I think the last few presents have been bought or ordered on-line. Gregorio is knocking up his traditional fish feast on Christmas eve which the girls insist is adhered to each year. Christmas day I am excused from turkey cooking duties (much to Gregorio's relief) as we join a group of dear Italian friends to celebrate.
Looking ahead to 2014 we have lots of skiing planned. We are hoping that the three lots of snow we have already had are a good omen for the winter to come. Though yesterday's 21C is not good news for the local slopes….we shall be skiing most week-ends at the local slopes and have a wonderful trip planned in Jackson Hole in February. Next summer will hopefully be a European one, dates and itinerary still to be worked out but I hope we shall catch up with many of you.
Wishing our friends and family near and far a magical Christmas and a happy and healthy New Year.
Lots of love,
Emma, Gregorio, Isabella & Matilde. xxx
Sunday, December 22, 2013
Tuesday, November 19, 2013
A Time of Thanks
It has been a month since I last updated you. It is also that time of the year when I get philosophical and grateful for many things. This year is no exception!
We had a mega medical appointment week last week with various check ups in the oncology, cardiology, ophthalmology and endocrinology departments coinciding. I am pleased to report that Isabella is doing well. We have started the second year of this trial drug, the tumor continues to shrink and she seems to be tolerating the medication relatively well. It seems like a no-brainer - continue for another year. We and the doctors agree, but at the back of our minds is the unknown with any trial drug - what are the long-term side effects? Nobody knows. So we are taking it from one MRI to the next, if there continues to be shrinkage, even the minute amount (or probably stability) we will continue with the drug. The issue is that once we are off the drug and if there is then regrowth we cannot go back on the drug. However, all is stable/shrinking minutely so there is no need to think about it right now. We take each step at a time. The next MRI will be in early December and an update will follow
Added to all the above medical appointments there were others, the most important for Isabella was seeing the orthopedic specialist and getting her smelly cast off her finger. The finger does now seem to be in one piece but she is being careful so that she can perform her best in her piano exam at the end of the month.
Isabella is blossoming in secondary school and loving all her activities. She is helpful and considerate around the house and even helping her younger sister with homework etc. I am grateful that this the case most of the time! It is amazing to think how far we have come in the past couple of years on many fronts. I was reading an article today about the rhetoric of cancer and dealing with it. Before it was a shameful thing to mention, then it became known as the Big C and in more recent times it is the evil force with which you do battle. I think there are probably phases one goes through and battling or fighting is a good phrase in those early days as you come to terms with what you are dealing with. Over time it is something that you accept and just live or deal with it. We are very much in that stage, there is still a weed in the garden but the other flowers are blooming and will not affect the overall beauty of our lives.
I warned you I was in a philosophical mood….
And as we approach the most wonderful American tradition, the gathering of friends and family to express thanks next Thursday, I wanted to express our continued gratitude to many of you. I am thankful for the supportive family and wonderful friends like you. Recently I have been reminded what a good friend is, they drop everything and come and help at the drop of a hat no questions asked, or cook you supper or take over when you can't, or just know to lend a listening ear. Thank you.
I am grateful every day for the courage and maturity Isabella displays. I am thankful for the joy and happiness that Matilde brings to the household and I count my lucky stars for my wonderful husband. Gregorio has returned from a successful trip - maybe there was something in the water, as he has returned full of energy and a renewed interest in life. He never ceases to surprise and amaze me.
With love and much thanks to you all,
Emma xxx
We had a mega medical appointment week last week with various check ups in the oncology, cardiology, ophthalmology and endocrinology departments coinciding. I am pleased to report that Isabella is doing well. We have started the second year of this trial drug, the tumor continues to shrink and she seems to be tolerating the medication relatively well. It seems like a no-brainer - continue for another year. We and the doctors agree, but at the back of our minds is the unknown with any trial drug - what are the long-term side effects? Nobody knows. So we are taking it from one MRI to the next, if there continues to be shrinkage, even the minute amount (or probably stability) we will continue with the drug. The issue is that once we are off the drug and if there is then regrowth we cannot go back on the drug. However, all is stable/shrinking minutely so there is no need to think about it right now. We take each step at a time. The next MRI will be in early December and an update will follow
Added to all the above medical appointments there were others, the most important for Isabella was seeing the orthopedic specialist and getting her smelly cast off her finger. The finger does now seem to be in one piece but she is being careful so that she can perform her best in her piano exam at the end of the month.
Isabella is blossoming in secondary school and loving all her activities. She is helpful and considerate around the house and even helping her younger sister with homework etc. I am grateful that this the case most of the time! It is amazing to think how far we have come in the past couple of years on many fronts. I was reading an article today about the rhetoric of cancer and dealing with it. Before it was a shameful thing to mention, then it became known as the Big C and in more recent times it is the evil force with which you do battle. I think there are probably phases one goes through and battling or fighting is a good phrase in those early days as you come to terms with what you are dealing with. Over time it is something that you accept and just live or deal with it. We are very much in that stage, there is still a weed in the garden but the other flowers are blooming and will not affect the overall beauty of our lives.
I warned you I was in a philosophical mood….
And as we approach the most wonderful American tradition, the gathering of friends and family to express thanks next Thursday, I wanted to express our continued gratitude to many of you. I am thankful for the supportive family and wonderful friends like you. Recently I have been reminded what a good friend is, they drop everything and come and help at the drop of a hat no questions asked, or cook you supper or take over when you can't, or just know to lend a listening ear. Thank you.
I am grateful every day for the courage and maturity Isabella displays. I am thankful for the joy and happiness that Matilde brings to the household and I count my lucky stars for my wonderful husband. Gregorio has returned from a successful trip - maybe there was something in the water, as he has returned full of energy and a renewed interest in life. He never ceases to surprise and amaze me.
With love and much thanks to you all,
Emma xxx
Monday, October 7, 2013
Orthopedics?
Isabella seems to have decided that she needs to test all medical specialist fields....this month it will be orthopedics. Yes, today Isabella broke a finger, poor thing. The school nurse said she didn't appear to be in too much pain but we know that Isabella has a high pain threshold. Both parents were in meetings but Gregorio did manage to extract himself eventually and opted for the ER at Sibley, not sure if we have a loyalty card at that particular hospital but they were seen very quickly, x-rayed and had a splint fixed to her finger. On Friday we'll see what the specialist has to say. At least it is her left hand and she is right handed, though preparing for her piano exam in November will be a little one sided for a couple of weeks.
Thursday, September 19, 2013
All stable
Today we got the news that all is stable with Isabella's tumor. There is the possibility that it has shrunk very slightly - however stability is good and we are pleased with this.
We've been on the trial for almost a year and it is five years since this journey began. We are in a good place. Isabella is blossoming and doing well inside and outside school. Next month we will make a definite decision as to whether we continue with this trial drug for another year. It looks likely that we will, given how minimal the side effects are and how well the tumor has responded to the treatment. The unknown factor is the long term side effects of this drug and there is very little data to support either side of the decision. So onwards with our 6 am alarm to take the pills every day and then again squeezing it into our afternoon activities on an empty stomach... another MRI in December to monitor the tumor.
We reviewed again Sept 2012 MRI alongside the September 2013 MRI and the shrinkage is significant, more than 50%. This is incredibly pleasing to see.
More soon.
Love,
Emma, Gregorio, Isabella and Matilde. xxx
Wednesday, September 4, 2013
How cool is secondary school?
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| Bella and Mati, first day of school 2013 |
Isabella starting secondary school reminds me how grown up I felt when I started all those years ago. I could even see myself on my first day of school proudly wearing my new uniform and my first slip on shoes - Peter kindly dug up the photo. See any similarities?!
Meanwhile it has been a good summer. We had a wonderful week in South Beach Miami with the British grandparents. This was followed by sailing camp which the girls loved, especially capsize mania day (on the hottest day of the year) and tennis camp. Mati has just received a new racket and suddenly she loves the game. Dear friends left DC and we miss them a lot, while others have returned or are about to arrive this evening.
Emma, the Duchess of fun, provided entertainment that included Asian night and Turkish night - lots of delicious food cooked and served by the girls. We then had a very relaxing two weeks down in South Carolina. We were staying on the private island of Kiawah which was very tranquil, immersed in nature, no cars or lights on the street, gorgeous houses with great views and lots of wildlife - alligators in the pond at the end of our garden, many birds, deer, starfish and turtles. Kiawah is a major nesting ground for loggerhead turtles. We joined the turtle patrol on several early mornings to inspect the nests and see if there were any hatchlings still struggling to make it out of the nests (they are about two feet underground in the sand). Isabella was fortunate to be able to assist over 25 out and then release them into the sea.
Matilde was pretty taken by the wildlife too. One lunch time she came screaching back from the beach on her bike (I was lounging by the pool about to prepare some lunch) "mummy, I don't care what you are doing or what you are wearing, get up and come and see the tortoise in the street!"
When we weren't watching the wildlife, we were biking around the island, through the marshes, under the spanish moss, along the beach, flying our kites, eating and relaxing. We did have a few days of rain but wiled away the hours introducing the girls to the southern classic movie - Gone With the Wind. Gregorio was more interested in reading "Frankly my dear, I don't give a damn!"
We visited Charleston, which Gregorio and I had seen pre-kids. It is beautiful but we were less impressed with Savannah. We saw the largest and oldest tree in America, apparently. Angel Oak was pretty impressive. We also toured the only American tea plantation. It was useful having Emma, a former tea taster, to guide us through the process and give us a tea slurping, I mean tasting demo.All in all a successful holiday where we recharged the batteries. One of the best things was switching off work email for two weeks. Sounds perfectly normal, but admit it, how often do you do it these days? I can honestly say it was the first time in five years (since I bought an iphone) and it was truly liberating. And just like the 'old days' my office did survive without me popping in to answer a question or to provide the answer! Anyway wee are now slowly getting back into the routine. Isabella will have another MRI on September 14th. We will update you then.
Lots of love,
Emma & co xxx
Tuesday, June 25, 2013
It keeps on shrinking!
We have had a busy couple of months but the most important thing to update you on is that the latest MRI shows further shrinkage to Isabella's brain tumor. We received the news yesterday, following Saturday's MRI. We will get a full report at the hospital on Thursday morning. We are amazed, over the moon and very pleased that Isabella can enjoy her birthday this Friday!
In other news this spring: Matilde tried snails on her birthday - needless to say, she said she didn't like them! She danced beautifully in her end of year spring performance. Here she is with her class in their beautiful costumes and then with a friend post-performance.
Isabella graduated to a brown belt in Tae Kwon Do. She had to do her whole sequence alone in front of the other belts, parents and the whole panel of instructors and the Master. She did brilliantly. We thought it would be good to end on a high, having gone a little cold on the sport earlier in the year. However, now she is determined to get to a black belt. Watch out! Here she is with Gregorio post graduation - we've taken this photo many times at this time of year.
Isabella also took her Grade 3 music theory exam ....results pending and she passed with a merit her Grade 2 piano exam. And if the Tae Kwon Do wasn't enough to drive Isabella forward, Gregorio promised her a grand piano when she has passed Grade 5. I think we may have to do some furniture rearranging in the next couple of years!
Both girls continue to enjoy music - in fact this is a house full of music which is wonderful. If the girls aren't arguing who can play the piano, Gregorio is strumming on one of his three guitars (he bought himself another for his birthday) sometimes complete with amplifier and drum machine.
Between all these events there seem to be the usual round of parties - birthdays, end of year events, beginning of summer gathering and the darn leaving party. This year seems particularly bad - the girls are loosing quite a few friends from school and some dear friends seem inevitably bound for the UK. On the plus side we have some dear friends returning and some others moving to DC shortly for the first time. You know who you are, we are sad and happy at the same time.
Friday, our baby (!) Isabella graduates from primary school. It is hard to believe - more photos to follow. They have been preparing for the ceremony for weeks with songs, speeches about their friends and peers. From the Year 6 graduation ceremony and party we will roll home and enjoy Isabella's disco dancing BBQ party!
For her graduation present, Isabella asked to have her ears pierced so a couple of weeks ago I took her to get it done (Gregorio said it was my ritual, he'd do tattoos and navel piercing!!) Anyway, the nurse was amazed, Isabella did not flinch just smiled once she knew she had holes in her lobes and she has been beaming ever since and proudly takes care of her ears every night.
Next week the much awaited summer holidays can begin. The summer begins with Grandpa Ross visiting and a trip to Miami. Later on more visitors, sailing camp, tennis camp and more time at the beach in South Carolina.
Happy times.
Lots of love to all,
Emma & Gregorio xxx
In other news this spring: Matilde tried snails on her birthday - needless to say, she said she didn't like them! She danced beautifully in her end of year spring performance. Here she is with her class in their beautiful costumes and then with a friend post-performance.
Both girls continue to enjoy music - in fact this is a house full of music which is wonderful. If the girls aren't arguing who can play the piano, Gregorio is strumming on one of his three guitars (he bought himself another for his birthday) sometimes complete with amplifier and drum machine.
Between all these events there seem to be the usual round of parties - birthdays, end of year events, beginning of summer gathering and the darn leaving party. This year seems particularly bad - the girls are loosing quite a few friends from school and some dear friends seem inevitably bound for the UK. On the plus side we have some dear friends returning and some others moving to DC shortly for the first time. You know who you are, we are sad and happy at the same time.
Friday, our baby (!) Isabella graduates from primary school. It is hard to believe - more photos to follow. They have been preparing for the ceremony for weeks with songs, speeches about their friends and peers. From the Year 6 graduation ceremony and party we will roll home and enjoy Isabella's disco dancing BBQ party!
For her graduation present, Isabella asked to have her ears pierced so a couple of weeks ago I took her to get it done (Gregorio said it was my ritual, he'd do tattoos and navel piercing!!) Anyway, the nurse was amazed, Isabella did not flinch just smiled once she knew she had holes in her lobes and she has been beaming ever since and proudly takes care of her ears every night.
Next week the much awaited summer holidays can begin. The summer begins with Grandpa Ross visiting and a trip to Miami. Later on more visitors, sailing camp, tennis camp and more time at the beach in South Carolina.
Happy times.
Lots of love to all,
Emma & Gregorio xxx
Sunday, May 5, 2013
Race for Hope 2013
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| Team Impavido at the start |
Another year and another 5k run done! Every year is different - a bigger team, different weather conditions (it was darn freezing this morning at 8 am) but the emotion at seeing the sea of yellow t-shirts worn by the brain tumor survivors is a very moving moment but a time to reflect and celebrate how far we have come. For the first time I actually walked beside Isabella for the survivor's parade. I got rather emotional, but Isabella just said 'don't worry mummy I know what I am doing, I do this every year.' As we walked past our friends - what a roar of support. Thank you. Who knows what Isabella feels at these moment but I feel very proud of her.
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| Isabella & Maria Pia. |
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| Keep on running... |
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| survivors |
We have raised over $2,000. Thank you for all your support. The money goes to valuable research to find new treatments and cures to defeat this dreadful disease. If you would still like to donate you can find our team on the Race for Hope DC 2013. Online donations continue for some time.
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| fellow survivor also on same trial treatment as Bella. |
Meanwhile, Isabella's treatment is continuing to be very effective. We have another MRI at the end of June. We'll update you with more news soon.
Lots of Love
TEAM IMPAVIDO xxxx
Monday, April 22, 2013
Race for Hope
We are in count down mode to Race for Hope - Gregorio has started running again! No doubt he'll be faster than than the rest of the family. It is a fun day to come together with friends and family to raise awareness for Brain Cancer.
This year more than ever we behind the need to raise funds to support valuable research into this terrible disease. As you know, Isabella is on a new trial and she and the tumor are responding well to the treatment - we are extremely happy and hope that you will find a way to support, however small, this cause to raise much funds into finding a cure for brain tumors. Please sponsor us or join us (walking or running) in a fun 5 k course around the center of DC on Sunday May 5th.
Go to braintumorcommunity.org and find our team. THANK YOU.
This year more than ever we behind the need to raise funds to support valuable research into this terrible disease. As you know, Isabella is on a new trial and she and the tumor are responding well to the treatment - we are extremely happy and hope that you will find a way to support, however small, this cause to raise much funds into finding a cure for brain tumors. Please sponsor us or join us (walking or running) in a fun 5 k course around the center of DC on Sunday May 5th.
Go to braintumorcommunity.org and find our team. THANK YOU.
Sunday, April 14, 2013
Further Shrinkage and China!
The past week has gone by in a haze of jet-lag. We arrived back from an unforgettable adventure to China on Sunday morning at 11 am (a mere 12 hours delayed) and by 1pm, Isabella was in the MRI scanner at Children's for her latest brain and spine scan. I'm assuming you'd like the medical news prior to our traveling tales?! Well, her tumor has shrunk further!!!
We had a lengthy morning at the hospital on Thursday visiting all the specialists (I'm not sure there is a specialist Isabella hasn't seen in the past year - let alone the past 5). Anyway, all is going very well and they are extremely pleased with how this trial drug continues to affect the tumor's pathways and reduce it in size. We reviewed this last MRI with September 2012, just prior to starting the trial. To our untrained eyes, it looked 50% smaller. Astounding. We are extremely happy.
This was just the news we needed to carry on our holiday mood. As many of you know, we had been planning this trip to China for a long time. Gregorio and I had been due to take a trip on our own in 2008, but that never happened. Then when our friends moved to Shanghai a couple of years ago, it became the obvious excuse for a big family adventure. We have been asked how the trip went and the short answer is: it left us with mixed emotions and images that we are still trying to digest.
Read on if you have time for more detailed impressions. At some point I'll add some photos too! In case you don't make it through the tales of China I wanted you, our dear supporters, to know that we shall be participating in the 5K Race for Hope again on Sunday May 5th. Calling all local friends to join us - walking or running and as always we are grateful to all for your continued support. Search our team on the DC Race for Hope website.
Chinese Adventures
China is a vast country, the smells, the noise, the people, the choice, the size and scale of everything is overwhelming but also very exciting. The rubbish, the smiles of the local people, it feels very safe, the wonderful food, the chaos, a different concept of service, the constant construction, yes the pollution and the sheer strangeness of it all - rarely have I been in a situation where I don't speak or understand any of the language of the destination. But put it altogether and we had a magical eye-opening tour from ancient Beijing, to the rural landscapes around Yangshuo to ultra modern Shanghai.
We stayed in a local hotel in the hutong in Beijing. The decor and ambiance were very Chinese and the location very tranquil. We enjoyed walking the narrow streets, dodging the bicyclists (unlit at night) or the piles of masonry along the road. Here we copied the locals - enjoying noodles for breakfast in the hotel or buying local sticky buns from the street vendors in the morning. We wandered into the local market and also exercise park. We were the youngest and only non-chinese. We caused many smiles as we jumped on the equipment and wandered around watching the groups performing tai chi, singing, dancing and just playing a game of ping pong. We saw all this activity at many parks around the city. It is such a pleasure to see these public spaces used and visited all day and every day.
There were cars and bikes everywhere going at their own speed and direction. Pedestrians are of the lowest importance on the totem pole, so crossing the street becomes a whole new game - when in doubt stick very closely to a local and don't stop or hesitate, just keep going.
Standing on the Great Wall of China was breathtaking. It is such an iconic image of China, it's a cliche but it really does stretch as far as the eye can see. We had a good work out walking up and down the steep steps and climbing the watch towers. We were the first on our section of the wall that morning and were whisked to the top in the cable car that President Clinton had taken in 1998. By the time we returned to the 'village' below all the street vendors had opened up shop - it was quite an effort to get through the thoroughfare without parting with any yuan, however cheap everything was.
Tiananmen Square is another iconic image of China, it was hard to believe we were standing there. The square is vast, you really feel like a small insignificant fish in the sea of tourists and various groups of military guards marching past. There are security checks to enter the square and large stern institutional buildings all around with Mao's face dominating the space at the end on the gate to the Forbidden City.
Matilde was enraptured with the Forbidden City, running around the courtyards like the child in the Last Emperor, which we had watched just prior to going. She fought with the hordes of Chinese to get to the front of the line to view the various throne rooms. On our arrival in Beijing, Matilde said to the friendly local guide "ok, I have a question for you: why did the Japanese kick the Last Emperor out?!" I am not sure if the guide was more shocked by the question (not strictly correct) or the fact that a girl of 8 could ask such a question.
From ancient Beijing we took the high speed train to Xi'an - new this year. Within 5 hours we were in a different world, previously it would have been an overnight train journey. In Beijing it had been cold and clear and the wind had blown away the pollution, but Xi'an was a different matter. A very dry and dusty place, the air was thick. We visited the Terracotta Warriors. Matilde had expected to see 7, Isabella thought they would be smaller and we were astounded at how many (approx 7,000) and how vast the complex is. They continue to excavate, nearly 40 years since that farmer first came across them. Each piece is so different and full of amazing detail. Construction of endless apartment complexes was very evident on the outskirts of Xi'an, even right next to power plants or "cloud factories" as our friend's son likes to call them. A slightly more poetic image of what those large chimneys are puffing into the sky (and lungs) of the local residents.
Despite a little snafu with our flight booking, we did manage to depart Xi'an as planned and flew south to Guilin. This lush green land is rather surreal with the endless rice fields and sugarloaf mountains. We drove through a number of small towns, each lined with small markets, cafes and repair shops. It seems the Chinese will fix anything and there is a little man and his workshop to do that everywhere. As we drove past, many were sitting around playing cards or chatting with friends waiting for customers. In the fields there was the odd worker, up to their knees in water/mud and the odd water buffalo ploughing the field. I had wanted to see rural china and this was it.
When we arrived in Yanghsuo the driver had a little difficulty finding our hotel, we came to the end of the road - there was our hotel across the river - but the road across was flooded! We were directed another way round through the fields. The following day Matilde and Isabella spent hours going back and forth across the river, copying the local farmers who took off their shoes and strode across. From our bedroom window all we could hear was the sound of the flowing river and birds singing and all we could see was the lush fields and limestone karst mountains covered in dense trees and shrubs. It was very picturesque and a complete change from the pace of life of Beijing and Xi'an - just what we needed. We had leisurely breakfasts sitting in the garden (when weather permitted), we read our books and we enjoyed the beautiful scenery sipping ginger tea. We had rather a lot of rain during our stay but we did manage to bike around the paddy fields and through the very small villages. The poverty and smells were quite something for the girls and I to experience. When we hit the main road we were in for another surprise. Being on a bike we were more important than pedestrians but navigating the road with the masses of tourist bikers along with farmers, cars, trucks and buses was entertaining. Especially when any four wheeled vehicle likes to hoot every time it sees another car. Its a noisy experience, not to mention the lack of bike helmet and proper brakes!
In Yanghsuo I learnt the art of haggling to rather good effect. "lucky for you, lucky for me, lady" was a common refrain from the vendors. The girls just kept saying "mummy, give her 5 Yuan more, then you have split it evenly" In the 'silk' clothing shop Gregorio was furious that I was considering the sum they were asking - still don't know if it was deliberate or not but the result : we walked off paying a third of the price originally asked. And they probably would have gone lower!
On our last day in this lush humid rural setting, we headed north of Guilin to Longsheng to see the terraced rice fields. The drive up was a little hair-raising to say the least. Not long after we set off the guide was spouting various statistics, including the annual number of deaths on the road in China, at about the same time the driver started to speed up and began overtaking - on a bend! "Interesting" I said to Gregorio, not trying to reveal any discomfort to the children. It only got better, as we were climbing the mountain road, dodging the various landslides and piles of rocks caused by the bulldozers widening the road - the driver just kept driving, if he couldn't get over the obstacles easily enough a quick swerve to the left and remarkably close to the cliff's edge.....I was quite relieved to arrive in the village of Pinyan. We were greeted by the local tribes women with amazing long hair bound up in various fashions that indicate their marital status. They were the bearers of large suitcases on their backs or the stall sellers, while the men offered transportation up through the village in sedan chair. We were happy to use our legs after the three hour drive. There was the usual array of stalls and the fixers, the man carving up water buffalo horns into combs and various tools and objects (the Chinese do not waste anything!). At the food stalls, various pieces of meat were hanging to dry or were being smoked. On seeing rat, I turned to Gregorio and said "I don't think I need to eat today!" We made it through all this, winding past the wooden buildings, the odd chicken wandering around the place (bird flu had not been in the news in a big way at this point...) and above the village we were afforded some spectacular views of the terraced rice fields. The visit to this village had felt like we were stepping back in time to another era. Needless to say we did gain an appetite after the hike around the terraces and our guide found us a lovely clean looking restaurant. We enjoyed the local dish of rice cooked in bamboo. We also ordered a large bowl of plain rice, the girls were amazed that it cost a mere $0.20.
We spent the last four days in Shanghai with our friends. They had a delightful house out of the city and we were pleased to have a decent cup of coffee and a western breakfast. They treated us to some wonderful highlights. Shopping featured quite highly: visiting the food market, the silk market and the pearl market. Luckily our time was limited otherwise we might have needed more suitcases to bring home our loot. Never any prices, it's always a discussion based on how many you are going to buy. We visited the water town of Suzhou with it lovely museum by I. M. Pei and beautiful gardens of the Humble Administrator. Names and titles are so poetic.
The last two days were a national holiday - Qing Ming or commonly translated as "Tomb sweeping day" Basically people pay respect to their ancestors. It was fascinating to see people outside the city temple in Shanghai burning wads of papers and incense as a sign of respect. All shops, monuments and museums were open and were very busy as a result. Walking down one of the main roads, Nanjing Lou and along the Bund was very busy, we were constantly checking we still had 5 kids with us! As day turned to night along the Bund we enjoyed the Pudong skyline all lit up. Very impressive, as was the Pudong tunnel with its light show as you take the train under the river.
We had gone from ancient to modern in two short weeks. We had had a guide on several occasions otherwise we wandered around everywhere and used local transport. We experienced the metro in Beijing and Shanghai. Very clean and efficient. In Beijing, adverts streaming past the windows in the tunnels, security checks into all the stations. We had resorted to a taxi on a couple of occasions, either because the kids were just too exhausted to go another step or on our last afternoon, Gregorio and I thought we'd hop down to the Bund and see the Pudong skyline in the sunshine one last time. The taxi driver did not understand "hotel" (The Fairmont Peace Hotel was the only landmark we could quickly remember), nor did she understand the name of the street when I said it in Chinese or when I indicated it was near water (perhaps drinking water in Chinese is different to river water...). We had become so relaxed we had gone out without our guide book and phrase book that afternoon. Eventually Gregorio remembered the Chinese characters for The Bund and wrote them down. At which point the driver was obviously saying "where along the Bund, it's a long road!" There was a lot of shoulder shrugging and charades. We did get there finally and told her to stop when we knew where we were. Entertaining but incredible to me, that even the word "hotel" is not understood by a taxi driver in a major international city.
Throughout our trip we had some fantastic food. We didn't try anything too out of the ordinary. We spent a morning in a small kitchen in old Beijing learning various recipes and making more dumplings than we thought we could consume (how wrong we were). They were delicious and we seriously hope we can repeat them back at home. We had peking duck at one of the best restaurants in Beijing - a very westernized and fancy place but at the same time we were astounded at the lack of understanding of English when they obviously cater to foreigners - 40 minutes to bring us mango ice-cream (which was listed on the menu) and between all the delicately carved peking duck and nouvelle-cuisine presented dishes, the little Chinese lady wheeled around her plastic trolley to collect the dirty dishes. We had our best dumplings in Shanghai and enjoyed a banquet there too, in our own private room complete with TV and own loo!
On several occasions we had some most entertaining conversations trying to order food, we pointed to things on the menu and ordered several things. The waitress, who gaggled away in Chinese, kept smiling but she was obviously saying 'you have ordered too much'. Eventually our food came - not sure if she was then laughing because we managed to eat it all and had surprised her or if she had bought less and was laughing as we hadn't realised!! On another occasion, in Xi'an, we were given a menu with pictures and Chinese and we pointed again to what we wanted and she indicated 'no'. At which point we looked around and pointed to the next table and held 4 fingers up. We later realised that everyone was dining on the same thing - a delicious local mutton broth. You are each given a round flat bread (somewhat stale) that you break up and put at the bottom of the bowl, then you give the bowl to your server and they bring it back with a large mutton broth filled with meat, noodles. To which you add handfuls of coriander leaves and take bites of raw garlic between mouthfuls. It was delicious and just what we needed. The only drink we had managed to ask for was chamomile tea - not quite what we needed but water, coke, beer anything else didn't seem to be understood so we gave up and drank tea. Midway through the trip we were dreaming of a bowl of home-cooked pasta but the reality is we loved all the food. Lots of delicious vegetables and fruits that we never see here. I am a bit skeptical at the size of those carrots. And I thought they were leeks but the chef told us they were spring onions, true the leeks were even larger. Dragon fruit and mangosteen. And all so beautifully displayed in the market - anything rotten was cast aside from the display. We enjoyed the variety of mushrooms. Gregorio was amazed at the variety of eggs for sale and did buy a couple of duck's eggs and was planning to knock up a duck egg omelette for himself on the last morning. But even he thought it wasn't worth risking it, given all the talk about bird flu. Eating habits and etiquette are certainly different in China, we have definitely strengthened some previously unused muscles with all that chopstick use and when tired just shovel it in somehow.
Surprising take aways - how many Chinese tourists there are everywhere. I know there are 1.6 billion Chinese but apparently the Chinese are now also major tourists in their country too. Everywhere we went, there were enormous groups and we were pulled aside by the odd person, young and old, to have our photo taken with them. I had wanted to see rural China and we really did, in its basic, poor, vast state. I think many comment that they go to China to see the major monuments and natural scenery but it is daily life that is so fascinating and how friendly everyone was. We were accosted by a lady on the street in Beijing on our first morning. After five minutes we realised the lady (an English teacher) just wanted to talk English with us. We lingered for about 20 minutes chatting with her. And if you have been to China you'll understand why it is hard to forget a Chinese public loo and potty training, Chinese style!! I'll say no more, I have gone on far too long. It was a memorable journey and there are many photos to prove it - just need to download them all and sort them all out.
Lots of love,
The Impavido Family xxx
We had a lengthy morning at the hospital on Thursday visiting all the specialists (I'm not sure there is a specialist Isabella hasn't seen in the past year - let alone the past 5). Anyway, all is going very well and they are extremely pleased with how this trial drug continues to affect the tumor's pathways and reduce it in size. We reviewed this last MRI with September 2012, just prior to starting the trial. To our untrained eyes, it looked 50% smaller. Astounding. We are extremely happy.
This was just the news we needed to carry on our holiday mood. As many of you know, we had been planning this trip to China for a long time. Gregorio and I had been due to take a trip on our own in 2008, but that never happened. Then when our friends moved to Shanghai a couple of years ago, it became the obvious excuse for a big family adventure. We have been asked how the trip went and the short answer is: it left us with mixed emotions and images that we are still trying to digest.
Read on if you have time for more detailed impressions. At some point I'll add some photos too! In case you don't make it through the tales of China I wanted you, our dear supporters, to know that we shall be participating in the 5K Race for Hope again on Sunday May 5th. Calling all local friends to join us - walking or running and as always we are grateful to all for your continued support. Search our team on the DC Race for Hope website.
Chinese Adventures
China is a vast country, the smells, the noise, the people, the choice, the size and scale of everything is overwhelming but also very exciting. The rubbish, the smiles of the local people, it feels very safe, the wonderful food, the chaos, a different concept of service, the constant construction, yes the pollution and the sheer strangeness of it all - rarely have I been in a situation where I don't speak or understand any of the language of the destination. But put it altogether and we had a magical eye-opening tour from ancient Beijing, to the rural landscapes around Yangshuo to ultra modern Shanghai.
There were cars and bikes everywhere going at their own speed and direction. Pedestrians are of the lowest importance on the totem pole, so crossing the street becomes a whole new game - when in doubt stick very closely to a local and don't stop or hesitate, just keep going.
Standing on the Great Wall of China was breathtaking. It is such an iconic image of China, it's a cliche but it really does stretch as far as the eye can see. We had a good work out walking up and down the steep steps and climbing the watch towers. We were the first on our section of the wall that morning and were whisked to the top in the cable car that President Clinton had taken in 1998. By the time we returned to the 'village' below all the street vendors had opened up shop - it was quite an effort to get through the thoroughfare without parting with any yuan, however cheap everything was.
Tiananmen Square is another iconic image of China, it was hard to believe we were standing there. The square is vast, you really feel like a small insignificant fish in the sea of tourists and various groups of military guards marching past. There are security checks to enter the square and large stern institutional buildings all around with Mao's face dominating the space at the end on the gate to the Forbidden City.
Matilde was enraptured with the Forbidden City, running around the courtyards like the child in the Last Emperor, which we had watched just prior to going. She fought with the hordes of Chinese to get to the front of the line to view the various throne rooms. On our arrival in Beijing, Matilde said to the friendly local guide "ok, I have a question for you: why did the Japanese kick the Last Emperor out?!" I am not sure if the guide was more shocked by the question (not strictly correct) or the fact that a girl of 8 could ask such a question.
From ancient Beijing we took the high speed train to Xi'an - new this year. Within 5 hours we were in a different world, previously it would have been an overnight train journey. In Beijing it had been cold and clear and the wind had blown away the pollution, but Xi'an was a different matter. A very dry and dusty place, the air was thick. We visited the Terracotta Warriors. Matilde had expected to see 7, Isabella thought they would be smaller and we were astounded at how many (approx 7,000) and how vast the complex is. They continue to excavate, nearly 40 years since that farmer first came across them. Each piece is so different and full of amazing detail. Construction of endless apartment complexes was very evident on the outskirts of Xi'an, even right next to power plants or "cloud factories" as our friend's son likes to call them. A slightly more poetic image of what those large chimneys are puffing into the sky (and lungs) of the local residents.
Despite a little snafu with our flight booking, we did manage to depart Xi'an as planned and flew south to Guilin. This lush green land is rather surreal with the endless rice fields and sugarloaf mountains. We drove through a number of small towns, each lined with small markets, cafes and repair shops. It seems the Chinese will fix anything and there is a little man and his workshop to do that everywhere. As we drove past, many were sitting around playing cards or chatting with friends waiting for customers. In the fields there was the odd worker, up to their knees in water/mud and the odd water buffalo ploughing the field. I had wanted to see rural china and this was it.
When we arrived in Yanghsuo the driver had a little difficulty finding our hotel, we came to the end of the road - there was our hotel across the river - but the road across was flooded! We were directed another way round through the fields. The following day Matilde and Isabella spent hours going back and forth across the river, copying the local farmers who took off their shoes and strode across. From our bedroom window all we could hear was the sound of the flowing river and birds singing and all we could see was the lush fields and limestone karst mountains covered in dense trees and shrubs. It was very picturesque and a complete change from the pace of life of Beijing and Xi'an - just what we needed. We had leisurely breakfasts sitting in the garden (when weather permitted), we read our books and we enjoyed the beautiful scenery sipping ginger tea. We had rather a lot of rain during our stay but we did manage to bike around the paddy fields and through the very small villages. The poverty and smells were quite something for the girls and I to experience. When we hit the main road we were in for another surprise. Being on a bike we were more important than pedestrians but navigating the road with the masses of tourist bikers along with farmers, cars, trucks and buses was entertaining. Especially when any four wheeled vehicle likes to hoot every time it sees another car. Its a noisy experience, not to mention the lack of bike helmet and proper brakes!
In Yanghsuo I learnt the art of haggling to rather good effect. "lucky for you, lucky for me, lady" was a common refrain from the vendors. The girls just kept saying "mummy, give her 5 Yuan more, then you have split it evenly" In the 'silk' clothing shop Gregorio was furious that I was considering the sum they were asking - still don't know if it was deliberate or not but the result : we walked off paying a third of the price originally asked. And they probably would have gone lower!
On our last day in this lush humid rural setting, we headed north of Guilin to Longsheng to see the terraced rice fields. The drive up was a little hair-raising to say the least. Not long after we set off the guide was spouting various statistics, including the annual number of deaths on the road in China, at about the same time the driver started to speed up and began overtaking - on a bend! "Interesting" I said to Gregorio, not trying to reveal any discomfort to the children. It only got better, as we were climbing the mountain road, dodging the various landslides and piles of rocks caused by the bulldozers widening the road - the driver just kept driving, if he couldn't get over the obstacles easily enough a quick swerve to the left and remarkably close to the cliff's edge.....I was quite relieved to arrive in the village of Pinyan. We were greeted by the local tribes women with amazing long hair bound up in various fashions that indicate their marital status. They were the bearers of large suitcases on their backs or the stall sellers, while the men offered transportation up through the village in sedan chair. We were happy to use our legs after the three hour drive. There was the usual array of stalls and the fixers, the man carving up water buffalo horns into combs and various tools and objects (the Chinese do not waste anything!). At the food stalls, various pieces of meat were hanging to dry or were being smoked. On seeing rat, I turned to Gregorio and said "I don't think I need to eat today!" We made it through all this, winding past the wooden buildings, the odd chicken wandering around the place (bird flu had not been in the news in a big way at this point...) and above the village we were afforded some spectacular views of the terraced rice fields. The visit to this village had felt like we were stepping back in time to another era. Needless to say we did gain an appetite after the hike around the terraces and our guide found us a lovely clean looking restaurant. We enjoyed the local dish of rice cooked in bamboo. We also ordered a large bowl of plain rice, the girls were amazed that it cost a mere $0.20.
We spent the last four days in Shanghai with our friends. They had a delightful house out of the city and we were pleased to have a decent cup of coffee and a western breakfast. They treated us to some wonderful highlights. Shopping featured quite highly: visiting the food market, the silk market and the pearl market. Luckily our time was limited otherwise we might have needed more suitcases to bring home our loot. Never any prices, it's always a discussion based on how many you are going to buy. We visited the water town of Suzhou with it lovely museum by I. M. Pei and beautiful gardens of the Humble Administrator. Names and titles are so poetic.
The last two days were a national holiday - Qing Ming or commonly translated as "Tomb sweeping day" Basically people pay respect to their ancestors. It was fascinating to see people outside the city temple in Shanghai burning wads of papers and incense as a sign of respect. All shops, monuments and museums were open and were very busy as a result. Walking down one of the main roads, Nanjing Lou and along the Bund was very busy, we were constantly checking we still had 5 kids with us! As day turned to night along the Bund we enjoyed the Pudong skyline all lit up. Very impressive, as was the Pudong tunnel with its light show as you take the train under the river.
We had gone from ancient to modern in two short weeks. We had had a guide on several occasions otherwise we wandered around everywhere and used local transport. We experienced the metro in Beijing and Shanghai. Very clean and efficient. In Beijing, adverts streaming past the windows in the tunnels, security checks into all the stations. We had resorted to a taxi on a couple of occasions, either because the kids were just too exhausted to go another step or on our last afternoon, Gregorio and I thought we'd hop down to the Bund and see the Pudong skyline in the sunshine one last time. The taxi driver did not understand "hotel" (The Fairmont Peace Hotel was the only landmark we could quickly remember), nor did she understand the name of the street when I said it in Chinese or when I indicated it was near water (perhaps drinking water in Chinese is different to river water...). We had become so relaxed we had gone out without our guide book and phrase book that afternoon. Eventually Gregorio remembered the Chinese characters for The Bund and wrote them down. At which point the driver was obviously saying "where along the Bund, it's a long road!" There was a lot of shoulder shrugging and charades. We did get there finally and told her to stop when we knew where we were. Entertaining but incredible to me, that even the word "hotel" is not understood by a taxi driver in a major international city.
Throughout our trip we had some fantastic food. We didn't try anything too out of the ordinary. We spent a morning in a small kitchen in old Beijing learning various recipes and making more dumplings than we thought we could consume (how wrong we were). They were delicious and we seriously hope we can repeat them back at home. We had peking duck at one of the best restaurants in Beijing - a very westernized and fancy place but at the same time we were astounded at the lack of understanding of English when they obviously cater to foreigners - 40 minutes to bring us mango ice-cream (which was listed on the menu) and between all the delicately carved peking duck and nouvelle-cuisine presented dishes, the little Chinese lady wheeled around her plastic trolley to collect the dirty dishes. We had our best dumplings in Shanghai and enjoyed a banquet there too, in our own private room complete with TV and own loo!
On several occasions we had some most entertaining conversations trying to order food, we pointed to things on the menu and ordered several things. The waitress, who gaggled away in Chinese, kept smiling but she was obviously saying 'you have ordered too much'. Eventually our food came - not sure if she was then laughing because we managed to eat it all and had surprised her or if she had bought less and was laughing as we hadn't realised!! On another occasion, in Xi'an, we were given a menu with pictures and Chinese and we pointed again to what we wanted and she indicated 'no'. At which point we looked around and pointed to the next table and held 4 fingers up. We later realised that everyone was dining on the same thing - a delicious local mutton broth. You are each given a round flat bread (somewhat stale) that you break up and put at the bottom of the bowl, then you give the bowl to your server and they bring it back with a large mutton broth filled with meat, noodles. To which you add handfuls of coriander leaves and take bites of raw garlic between mouthfuls. It was delicious and just what we needed. The only drink we had managed to ask for was chamomile tea - not quite what we needed but water, coke, beer anything else didn't seem to be understood so we gave up and drank tea. Midway through the trip we were dreaming of a bowl of home-cooked pasta but the reality is we loved all the food. Lots of delicious vegetables and fruits that we never see here. I am a bit skeptical at the size of those carrots. And I thought they were leeks but the chef told us they were spring onions, true the leeks were even larger. Dragon fruit and mangosteen. And all so beautifully displayed in the market - anything rotten was cast aside from the display. We enjoyed the variety of mushrooms. Gregorio was amazed at the variety of eggs for sale and did buy a couple of duck's eggs and was planning to knock up a duck egg omelette for himself on the last morning. But even he thought it wasn't worth risking it, given all the talk about bird flu. Eating habits and etiquette are certainly different in China, we have definitely strengthened some previously unused muscles with all that chopstick use and when tired just shovel it in somehow.
Surprising take aways - how many Chinese tourists there are everywhere. I know there are 1.6 billion Chinese but apparently the Chinese are now also major tourists in their country too. Everywhere we went, there were enormous groups and we were pulled aside by the odd person, young and old, to have our photo taken with them. I had wanted to see rural China and we really did, in its basic, poor, vast state. I think many comment that they go to China to see the major monuments and natural scenery but it is daily life that is so fascinating and how friendly everyone was. We were accosted by a lady on the street in Beijing on our first morning. After five minutes we realised the lady (an English teacher) just wanted to talk English with us. We lingered for about 20 minutes chatting with her. And if you have been to China you'll understand why it is hard to forget a Chinese public loo and potty training, Chinese style!! I'll say no more, I have gone on far too long. It was a memorable journey and there are many photos to prove it - just need to download them all and sort them all out.
Lots of love,
The Impavido Family xxx
Thursday, February 7, 2013
Further shrinkage!
It's been a couple of months since the last MRI, and so yes you are right, it's about time for another MRI (every two months under this study). Last Sunday Isabella was in the tube and today we received the results - and the good news keeps coming: further shrinkage! Yes the tumor has shrunk further. It is looking less active (the fact that it is taking up very little dye) the cyst seems invisible and the tumor continues to shrink in height and width. Just wonderful to see the pictures.
Of the four children under the study at Children's, Isabella's tumor seems to be responding best to the treatment. Who knows why, but we feel very fortunate. So onwards we go with the twice daily round of pills, dealing with the minor side effects. It is worth it.
We were in and out of the clinic relatively quickly having seen all the key players, reviewed the scans and picked up the next month's worth of medication. And then we skipped back to school and work with a smile on our faces. Here is a photo taken in the waiting room this morning of Isabella and Sofia, a fellow JPA patient on the same study (she has a twin sister called Isabella!)
Half term here next week, otherwise plodding along with this crazy winter - bitterly cold, then unseasonably warm and on we go and a severe lack of snow - maybe a good thing as we are not skiing this year, given that we are going to China this spring.
Hope all is well with you.
Love,
Emma and co. xxx
Of the four children under the study at Children's, Isabella's tumor seems to be responding best to the treatment. Who knows why, but we feel very fortunate. So onwards we go with the twice daily round of pills, dealing with the minor side effects. It is worth it.
We were in and out of the clinic relatively quickly having seen all the key players, reviewed the scans and picked up the next month's worth of medication. And then we skipped back to school and work with a smile on our faces. Here is a photo taken in the waiting room this morning of Isabella and Sofia, a fellow JPA patient on the same study (she has a twin sister called Isabella!)
Half term here next week, otherwise plodding along with this crazy winter - bitterly cold, then unseasonably warm and on we go and a severe lack of snow - maybe a good thing as we are not skiing this year, given that we are going to China this spring.
Hope all is well with you.
Love,
Emma and co. xxx
Thursday, January 10, 2013
It's going to be a GREAT 2013
Great Photos
We thought we would start 2013 with a NEW look and some great photos (thankfully one member of the team is very tech savvy :) We have just received a lovely selection of great photos taken of Isabella and the clowns last year at the hospital.
 |
| Isabella with the clowns
Around the same time that this and the new header photo were taken, Isabella and Matilde enjoyed posing for Emily Pinna. Below are a couple from that photo-shoot. Emily, if you don't know, takes great photos in Europe and here in the US see her website for more details: emilypinnaphotography.com
Great news leads to great adventures
Given the great news we received just before Christmas that the tumor is shrinking we are moving full steam ahead with our plans for a great adventure to the Great Wall of China! Yes we are heading to the other side of the world around Easter to see friends in Shanghai and beyond and put the girl's mandarin to the test. The great travel planner is busy at work...just hope that she can renew her US visa in time (just realised tonight that it expires next month!)   Meanwhile we are full of lots of great intentions for the New Year, we hope we can sustain them well into 2013. Buon anno! Lots of Love, Emma, Gregorio, Isabella and Matilde xxx |
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