Whizzing towards 2014

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

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

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.

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

How cool is secondary school?

Bella and Mati, first day of school 2013

In a word...VERY. The girls went back to school yesterday and Isabella went upstairs to Year 7 (6th Grade for you locals) into secondary (middle) school. She can't stop talking about all the new and exciting things. Today they were allocated their lockers...and they are turquoise! This afternoon in science they made sparklers. Now, how cool is that? Takes me back to the fun we had with bunsen burners. Oh and did I mention the NEW uniform? Take a look for yourself at the smart navy blue summer uniform. Just wait till the cooler weather and there's a white shirt and tie, which Isabella is already practicing tying.

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?!

As Isabella sits down this evening to start her first piece of history homework I am reminded of the great leap from primary to secondary. Typing in the keys words  into google for her chosen period of history to research has left her a little overwhelmed. I remember some of those early homework sessions but I had to rely on the library or Granny Pat's encyclopedias. The resources may have changed but learning how to research and use the information is the same.

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

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

Race for Hope 2013

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.

Isabella & Maria Pia.

Keep on running...

There is also a wonderful family feel about the whole race/walk. We met up with friends from the oncology department and all the doctors before or chatting during the course and after the race there were lots of high fives. Everyone finished in good time but as we were hanging around the finish line taking team photos we thought we had lost Mati. But 10 minutes later she strolled in, she had a blister and just walked around the whole course on her own. She knows the routine now,  no Peter to show her the short cut or scooters this year!

survivors

Team Impavido (nearly 40) joined us for a lovely lazy lunch in the garden. Gregorio knocking up a delicious blaze on the BBQ. The sun came out and old and young enjoyed a fun afternoon eating, drinking and playing ball games.

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.

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