Race for Hope

In 2009 we were soaked by the rain, this year we were soaked through for another reason. In the space of about 48 hours DC went from winter to mid-August - 90F or 30C and VERY humid. It was seriously hot as we gathered with Team Impavido on 12th and Penn Ave at 8:30 am on Sunday morning. We were greeted with a loud cheer by our dear friends and family all proudly wearing the team t-shirt. This is most of the team, some were still pinning on their numbers as this picture was taken!

The day's events began with a tribute to all Brain cancer survivors - they paraded down Penn Ave in their yellow t-shirts to the front of the start line. Isabella was in the front row striding with great determination and pride. True to her name, Miss Fearless! There was not a dry eye around.

The race went well. We all completed the 5K course - some running and some walking. Despite the heat I ran faster than last year, though I am a little stiff today! Our oldest member and star global charity fundraiser in the family, Janie was the first to finish in our team. Isabella was determined to complete it too and ran across the finishing line with a big smile. Matilde, walking with Peter, announced on several occasions "this is the most boring thing ever!" I think she was fed up she had lost track of everyone else in the team and all she could see was a sea of sweating unknown people, 10,000 to be precise. But she, like Isabella felt a great sense of achievement on completing the race. See the certificate that Isabella produced for herself at the end of the day below.

Participating in an event like this is very emotional. There is a strong bond between everyone going through or knowing someone who has gone through a similar situation. As Isabella sat and rested after the event, a teenage boy came up to her and said "high 5, buddy!" He then wanted to know how long she had been a survivor and discuss tumors. We discovered that he had been treated by the same doctor. And as if on cue, out of the throngs of people, appeared the lovely, calm Dr P. Isabella was pleased to catch up with him on a day like this, here they are together.

We were thrilled to have such good friends and family with us. We are truly grateful for your support to us the past couple of years but also your generosity to such a vital cause. As Dr P says on his team's page and they announced at the beginning of the race, "we will not rest until we find a cure!" Near and far you have donated your time and money. We are around $5,000 for our team so far but the donations are still coming in and can be accepted for several months to come. A huge thank you to Susan, who ran her own charity race a couple of weeks ago (but 10K or was it more?) in Belgium and has raised nearly $2,000 for the cause.

And here is Uncle Billy  with some of Team Impavido. He spent the morning trying to promote the book I have written about Isabella's story. It has been beautifully illustrated by Marie-Isabelle, we hope to publish it for other children and families in a similar situation.

After a very hot but wonderful morning we returned home to a celebratory BBQ (using Gregorio's new machine) with all the team and their families.

Thank you for all your support.
Love,
Emma & Gregorio. xxx

All stable

We know many of you have been waiting to hear the results of the latest MRI. Well it is good news, the tumor is all stable, no change. Full steam ahead with our plans for this summer!

Many of you know that waiting, or rather patience, is not one of my fortes. So each time an MRI looms there is a certain tension and a total inertia to do,  decide or plan anything. Thankfully (well perhaps that is not the right word) an unpronouncable volcano in Iceland decided to cause havoc to European airspace this past week and the fall out has kept me extremely busy, dealing with stranded travelers in London and Amsterdam. Quite incredible that a volcano in this day and age provided non-stop bloody fun,  to quote a friend and former colleague in the business! I am pleased that the latest challenge to the travel industry is coming to a close and our home life will find an equilibrium once more. It is bad enough with the iphone buzzing on Gregorio's side of the bed at all hours, with the latest revision to a proposal!

We are very grateful to all those who have sponsored us or are joining us in the Race for Hope on May 2nd here in DC. See one of the postings below for full details if you haven't yet donated to the valuable cause to find a cure for brain cancer.

More news at the end of June after the next MRI. That's all for now, Gregorio says I have gone too cerebral!

Lots of love,
Emma & Gregorio xxx

Where Dreams Come True

We are on the final leg of our journey home from Disney World in Florida, after a truly memorable week all round. The Make a Wish people built up the excitement prior to our departure with weekly cards and information on the different parks and things to do. We have been looking forward to the trip for many months, the last two had been particularly intense. Firstly, the girls and I had a wonderful week's skiing in Park City Utah. Gregorio, unfortunately, broke his shoulder on day two of the trip. It was his first ever fracture but he was more pained by the fact that he could not enjoy the fabulous snow and extensive pistes in the Rockies, something he had longed to experience. Then I left for Athens and Siena (hey, it was work!) The girls tied Gregorio's shoe laces and helped him get dressed, he insisted on driving his manual golf cabrio and somehow he managed single handedly for a week. And before I returned, Gregorio set off around Europe to right the world of its financial woes. The 4th March was our tenth anniversary, Gregorio celebrated in London and I with the girls in DC. Their comment on us having reached 10 years of marriage: "so?" Indeed, I am told ten years is only tin.

Anyway, back to Disney, we were in much need of a change of pace and scenery. At 6pm last Friday we were picked up in a seriously large black limo. Did you not hear the screams?! The squeals of delight from Isabella and Matilde were hilarious. Let the records also show that the driver said to me, not once, but twice "is that all the luggage you are taking, I have never seen a family travel so lightly! (I know, I know Gregorio this was not the case on the return). Once inside the limo the girls insisted on sipping a glass of water from one of the champagne flutes. It was a great way to start the week and an indication of the VIP treatment we were to receive.

We were taken to Union Station, as part of Isabella's wish was to travel by train. What an adventure. We boarded the Silver Meteor bound for Orlando and quickly found our two roomettes on either side of the corridor, they were compact and revealed an efficient use of space, to say the least. Penny, I don't think the decor or menu in the dining car has changed since we toured the US by Amtrak twenty years ago!

By Saturday lunchtime we were in the Sunshine state. We were met and taken to Give the Kids the World Village. This resort is used by many Make a Wish families visiting Disney world. However, it was spring break and there was no room for us, so we were accommodated at the Polynesian Resort in the Magic Kingdom. We had the perks of Give the Kids the World (eg VIP treatment in the parks, free ice cream in the village all day long) and the convenience of the Polynesian - the best of both worlds.

We spent a full day in the Magic Kingdom experiencing all the classic rides and shows around Cinderella's castle. Isabella's status got us into and onto everything without any waiting. Magic. There was much hilarity when Papa was squirked by the camel during the flying carpet ride. We watched and participated in several parades. The floats were bright and colorful, bedecked with balloons and all the classic Disney characters singing and dancing away. I don't know if it is Disney's ability to create the feeling that a dream can come true or knowing why we were there, but on a very overcast day, Gregorio and I had our sunglasses firmly on during the parades. The highlight of this day was a visit to the Bibbidi Bobbidi Boutique where a fairy godmother fussed over little princesses, doing their hair, make-up and nails and then showering them in sparkles before spinning them around so they could look in the mirror at their transformation. Matilde was, as we knew she would be, ecstatic. "This is the best day ever".  The real joy was watching Isabella. She was given the royal treatment and had three people tending to her. She apologised for not having enough hair to work with and them her story. They added hair pieces and lots of razzamatazz. An enormous grin spread across her face when she saw herself. "I still look the same with long hair" She was so pleased, she could finally believe that she will have long hair again. Priceless.

At Seaworld we fed various animals, but the highlight was feeding the dolphins. Isabella shouted out "this is the best day!" (so far...) We also watched a beautiful show featuring dolphins, acrobats and parrots. Next stop: finding a real pearl in an oyster. Yes, this was just the beginning of the shopping....At the Animal Kingdom we went on safari. Even Gregorio, who has been on a real safari, said it was done amazingly. Admittedly you probably wouldn't see that many animals on a real safari in a whole day, let alone thirty minutes. The final and perhaps the park enjoyed most of all was Epcot, not least because there were fewer people. The science and technology displays were interactive and educational. Fascinating. We then proceeded to walk around the different countries. A series of replica buildings filled with restaurants and shops selling all sorts of wares from the various countries proved to be a fascinating (and expensive) journey around the world.

We began in Norway. I would not be deterred by the impatience of the rest of the family and eventually we were given the last table inside the Royal Palace, where we mingled with princesses. Matilde's face on learning that we would be seeing Cinderella, Snow White, Ariel, Belle and Aurora was magical. Matilde was so excited she couldn't bare to waste too much time at the Norwegian buffet table, for fear that she would miss the princesses. They moved around the banquet greeting little princesses with hugs, signing autograph books and giving them a hug. Every little girl's dream.

From Norway we went to China, where Matilde gained a little chinese silk dress and we watched an interesting film about China with amazing landscape scenes. We wandered the souks of Morocco filled with jasmine sense, where the girls had henna decoration painted on their hands. In Japan, Isabella tried on a kimono and chose several pairs of chopsticks. Recently Isabella has gone mad about sushi, she had it three or four times this week alone. "Papa', questo e' il giorno piu' bello di tutti!" Under the arches of the Doges Palace in Italy, the girls were commented on their Italian and Gregorio was congratulated as well for teaching his daughters Italian. At the end of a very hot day we arrived in England, where Gregorio marched us into the Rose and Crown pub and ordered four lime and sodas. Stu, behind the bar asked where he was from (when Gregorio speaks English, his accent is still more British than American). "I'm from Rome, but she's local" he said, pointing at me and the drinks were on the house.

In between all this park hopping filled with fun we also enjoyed some good food from around the world, did you expect anything less from this family? We ate Asian, African, Hawaiian, Cuban, Norwegian and enjoyed Polynesian entertainment at dinner one evening and had breakfast with Mickey, Minnie and Pluto. We also found time to relax and splash around at the pool and the girls were happy with the simple things like colouring Disney characters in the lobby or helping  the lady to make real flower Hawaiian lei.

We concluded our magical week watching the firework display in the Magical Kingdom eating candy floss (cotton candy, zucchero filato). Life doesn't get much better than this. We are extremely grateful to Make a Wish for making a dream come true, a magical week for the whole family.

Tomorrow the fun continues with Easter Egg hunts and festivities. We then have lots of fun things to look forward to this spring including the Race for Hope on May 2nd (see previous blog for more details). We are very happy that family are flying in to participate in this event with us. Then there are birthdays and getting ready for our big European vacation this summer.

Isabella will have another MRI on April 21st, we will update you if there are any changes. In the meantime, we wish you all a Happy Easter / Buona Pasqua.

Love,
Emma & Gregorio. xxx

PS: Yes, Gregorio's shoulder is nearly better and he is in training for the race on May 2nd!

Race for Hope

Calling all supporters, runners and walkers!. On May 2nd we are participating in the annual 5K Race for Hope, here in Washington DC to raise money to help find a cure for brain cancer. 

Our personal story

Our daughter Isabella was diagnosed with a brain tumor (Juvenile Pilocytic Astrocytoma) in September 2008, age 6. Thankfully she was basically asymptomatic. She underwent 14 months of chemotherapy with strength and courage. The tumors shrank and are now stable. She has now been off treatment for 10 weeks and we pray this will continue to be the case before there is any change and we have to consider further treatment.

The facts

Everyday 9 children in the US are diagnosed with a brain tumor. Twenty years ago the diagnosis of a brain tumor was virtually a death sentence for a child. Because there was very little research being done into the disease, most treatments were ineffective or harsh, and most children did not survive to adulthood. But in 2010, 3 children diagnosed with a brain tumor in the US will transition to survivorship everyday. There is hope.

Many are excited about treatments currently being researched and developed. They expect to see advances in several areas: less traumatic surgeries, new chemotherapeutic drugs and combinations of drugs that effectively could replace surgery and radiation therapy, chemotherapy with fewer side effects, treatments that marshal the body’s own immune system to kill tumor cells, and gene therapy. Researchers are developing new therapies that will extend the lives of many (adults and children) affected by a brain tumor and will ultimately lead to a cure.

We know there are many valuable causes out there, so we are truly grateful for anything you can donate towards finding a cure for brain cancer. Please consider supporting Team Impavido on May 2nd in the Washington DC 13th annual Race for Hope. 

Donating on-line is a very easy process, but let us know if you have any difficulty. Go to www.curebraintumors.org and search for Team Impavido or click on this link:  http://www.braintumorcommunity.org/site/TR?pg=team&fr_id=1490&team_id=34940

With many thanks,

Emma & Gregorio

Port out, snow continues

This morning at 5:30 am Gregorio took Isabella to the hospital for surgery. It was pretty cold and icy out there. Gregorio and I were comatose at that hour, Isabella was alert and excited, she was getting her port out. A quick bit of shoveling to clear the tracks from our driveway and they were off. All went smoothly and they were back home having breakfast by 11.

Isabella has been relaxing at home, watching the TV with Mati - no school for both of them again today. No school tomorrow either, they haven't been at school since last Thursday and the way things are going it is unlikely they will be going back this week and then it is half term!

In case you missed the news, Washington DC received an historic amount of the white stuff, as predicted last Friday and Saturday. Somewhere in the region of 25-30 inches. We have dug ourselves out but the roads are still a mess. And now as I write this, the next snow storm has begun, a few hours later than they advised but it is set to snow till tomorrow evening and bring a mere 10-20 inches this time.

Sunday and Monday were beautiful sunny days. We had lots of fun playing in the snow. Needless to say lots of cooking and eating has been going on the past 5 days, think we deserved it after shoveling 2 feet of snow and walking up our street (hard enough without snow!)

Lots of love,
Emma & Gregorio. xxx

All stable, life without chemo is good.

We met with the neuro-oncology team at Children's this morning and were told that last week's MRI showed that all is STABLE, the port is coming out, we are free of chemotherapy for the time being. A huge sigh of relief. 2010 continues to be a good year.

After a neurological exam, the doctor showed us the scans of the brain and spine. Isabella said she wanted to stay and look. She pointed out to her neurologist "that's my brain stem, that's the cerebellum, my eyes and the optic nerves, now where's the tumor?" We laughed, she's going to be a doctor. Then he pulled up some scans from the July MRI to compare how things had changed in six months, at which point Isabella announces "oh this is SO boring, I'm off to the art room!" She had the information she needed, the port is coming out.

Gregorio and I discussed the future. They repeated what we have been told before. It is a slow growing tumor so we hope to buy as much time as possible before we reach the last resort: radiation. In the meantime there would be more chemotheraphy as an option, depending on when regrowth happens or hopefully new drugs that are in trial, would be available. We were assured that he would get us to or bring the latest treatment to Isabella, whenever it is needed. He is a world renown neurologist but also incredibly down to earth and a support to Isabella and the family this past year and a half. He did point out that they've been hoping for a breakthrough with new treatment for about 10 years and they are still waiting for it to happen. However, it is true medicine is making tremendous advances.

To this end, we have chosen to support Brain cancer research whenever possible. We have decided to run again in the Race for Hope in Washington DC on May 2. If you go to www.CureBrainTumors.org you should be able to find our team. Let us know if you want to join the team - in reality or as a virtual runner or donate what you can. We know there are many valuable causes out there, not least the poor survivors of the recent Haiti earthquake, we are grateful for any contributions you can give. I have also written a children's story about Isabella's journey which a lovely friend, who's family know all about brain tumors, is kindly illustrating. The aim is to help other children going through similar experiences and ultimately give money to brain cancer research. If nothing else it will be a beautiful book for Isabella to remember what she has been through.

Since Isabella finished treatment she has gained strength, her hair is growing thicker and a sense of total serenity has descended on the household. It has been a happy month, none of that sinking feeling when we wake up on Thursday morning. It was very sweet at supper this evening when Gregorio says "a toast to life without chemotherapy" and Mati says "don't mention that chemo stuff, it makes Bella feel sick!" She was happy to understand that we were done with chemo.

Tuesday they will take out the port and then no further worries about fevers and having to run to the ER and perhaps more importantly we avoid a monthly flush of the line and all the anxiety that would cause Isabella. Thankfully we managed to have the port accessed and flushed while Isabella was sedated for the MRI last week so avoided all the drama.

The next MRI is scheduled for April 21st. Before that, we are off to Utah for a week's skiing. We are really looking forward to it, not that we haven't done a lot of skiing locally for the day in the past couple of months and have been getting a fair amount of the white stuff in DC. Two snow storms in the past week and a major snow storm forecast to start Friday at noon - so much so Gregorio's office will be closed and so is school tomorrow. Guess my free day to run around and do errands is out the window! I managed to grab the few remaining things on the supermarket shelves this evening. It is always so amusing to watch the panic buying up at the stores prior to a snow storm. So we are all set for a week-end of cooking and eating in the Impavido household between sledding and snowman making. Then the week before Easter, Isabella's wish thanks to Make a Wish is being granted, we will travel to Disney world in Florida for a week of pure fun.

Fun times lie ahead, not to mention the planning of a European trip this summer. More news at the end of April.

Lots of love,
Emma & Gregorio. xxx

Waiting for news

Just in case you are waiting on news from last week's MRI - and a number of you have kindly asked - we probably won't know anything till this Thursday (February 4th). Our meeting with the doctors to review the scans and talk about the next steps was moved (several weeks ago) to Thursday. Don't read anything into the change of date. Isabella is doing well, we are all very distracted with lots of work, school and skiing. More news when we have it.