Thursday, January 19, 2017

New Year - NO treatment!

Last week-end's MRI shows that the tumor is stable. It is smaller than it was when we started treatment last February. We have decided to stop treatment. Isabella is happy and positively beaming at the news. After a three week break over Christmas and New Year, she was rid of the darn side effects that had been building up and now she can enjoy the freedom from the treatment.

Next MRI will be in three months to monitor the tumor.

Till then we are free of medical visits. YEAH! We discussed treatment options if/when the tumor regrows. We will cross that bridge when it happens.

Brace yourself world for the event that really is happening in DC tomorrow...

Lots of love,
Emma & co xxx

Thursday, December 22, 2016

Look back and looking ahead to 2017!

It has been some months since we last updated this blog. The good news, as many of you have concluded, is that Isabella is doing well and we have been busy with many other things.

Flower girls this summer

I am writing this while sitting at the hospital for Isabella's monthly check-up. After a VERY long day we have concluded that Isabella's body needs a break from the current medication, 3 out of the past 4 years she has been on this medication, the toxicity is undoubtedly building in her body. We are able to take a three week break on this trial, she will then be due for her next MRI and we will assess whether she should continue with a reduced dose (and hopefully limit some of the side affects)  or stop the medication altogether. Stopping sounds pretty good but the unknown does cause apprehension as we don't know exactly what the treatment options are, should the tumor regrow. We will cross that bridge when we get there. In the meantime a Christmas break without having to remember to take the pills twice a day on a completely empty stomach or worry about the latest possible side effect will be a relief all round.

Ahhh, collapse on the sofa with a good cup of tea.

Time for Tea
Atop Rocciamelone
Looking back at the past six months - we had good summer that included a stop in London to catch up with friends and family. Cultural highlights included an evening at The Globe, getting lost in the maze at Hampton Court and afternoon tea at Kensington Palace. We then had two very relaxing weeks in the Italian Alps with i nonni and also a visit from the English nephews. We visited our favourite haunts, hiked our preferred trails and got our fix of gelato and other Italian goodies. The highlight was Mati conquering Rocciamelone at 3538 m with Gregorio and a couple of friends. Thanks to modern technology -  photos and messages were instantly beamed down to the valley and I think the whole of Susa, from the hair dresser to the post office knew about the granddaughter who had climbed the mountain and then written a very special message to the Madonna di Rocciamelone praying for the other granddaughter. An emotional day.

L'ultimo gelato all'aeroporto di Torino
Sightseeing in London
No matter the age, all want to climb up there!
We returned to DC at the end of August and dove right back into school and I think we are only now catching our breathe as we wind down for the Christmas holidays. Matilde traveled with the school to Florida for a week in November to participate in an inter school sports competition. She talked a lot about the swimming and archery in which she represented her school but I think Disney World and her first ever roller coast ride also left a big impression! Gregorio traveled to Turkey, his last work mission there, now that he has moved to covering warmer climes in the Caribbean. The girls and I took a whirlwind trip to New York to see an old friend - it was the perfect autumn Sunday in the Big Apple. I had two great work trips this autumn - a wonderfully luxurious whirlwind tour to
one of many in Italy!
with cousins in the Alps
Moscow and St Petersburg. I knew it would have changed since my last visit in 1988 but I could not have imagined by how much. The grey Soviet era is firmly in the dim and distant past. The beauty, opulence and great food were truly memorable. Sadly I don't see us sending American travelers to Russia soon. This trip was followed by 10 days in Oxford and London - a quintessentially English experience to feed my annual nostalgic needs. I managed some annual rituals with bonfire night, Remembrance day, stocking up on tea and treats from Fortnums and clothes shopping on the King's Road (thanks to the great exchange rate!) to name just a few non work related things I squeezed in.
Back to School Sept 2016

The girls are growing up and becoming very independent. They are both happy and working hard at school. Isabella has started her IGCSEs and will be taking a couple next summer - under four years and she will be flying the nest! Hard to believe. Swimming is Mati's life - practicing four times a week and then swim meets on many week-ends. The bathroom is filled with wet swimming costumes and towels everywhere! Meanwhile Bella continues to sing with the Children's Chorus of Washington. Last week's Christmas concert was beautiful, the new director has breathed some new energy into their repertoire.
Oyster festival in Maryland

2016 has been quite a year around the world. I was in London the night of the US election. The result was a surprise and shock for many of us. It was the second time this year, I have felt let down by 'my' country. I am at home in England and America though I have no voting rights in either. The US presidential election and the Brexit vote came after very contentious campaigns and left me, first with a major identity crisis (I have since filed my papers to become an Italian citizen) and the second, apprehensive of what the future will bring.

Kid's table at Thanksgiving
economic students...a few years later
As a dear English friend's father wrote recently, while the future remains uncertain, there will always be friendship. And this year we have certainly relished the friends we have. We were visited by the Italian friend who first introduced Gregorio and I - some 22 years ago - he certainly looked the same, not sure about Gregorio and I! We reconnected with a number of friends in London after several years to celebrate my birthday this summer and we were visited by other dear friends who previously lived in DC. This week we have sadly said goodbye (for now?) to some friends heading back to live in Europe. We've had plenty of fun times with friends to be thankful for this year. Thanksgiving at the Impavido household has become a tradition with our dearest DC friends, they are practically family - a big one at that, there were 32 of us sitting down to turkey and trimmings in November. For Christmas we will be at an equally warm gathering of close DC friends. Preceded, as always, by Gregorio's traditional Christmas Eve fish meal - Mati is not particularly fond of fish but she believes the menu is sacred and cannot be changed!
cena nel cortile!
The "usual" English walk in Virginia

We are looking forward to a relaxing Christmas break and ready for new adventures in 2017. We wish you all a magical time with your family and friends and the brightest and healthiest of New Years.

Lots of love,

Emma, Gregorio, Isabella & Matilde. x

PS can you ever have enough Emmas in your life?!?
Bonfire night - Up, Down & Sideways!
in NYC

Thursday, July 28, 2016

Shrinkage!

Nearly six months back on the treatment and we have confirmed shrinkage.  Need I say more?!

Yesterday's MRI shows approx 20% reduction so the tedium of taking the pills twice a day on an empty stomach ( four of us have synchronized alarms on more devices than you can imagine to avoid missing even one dose) and the annoying side effects to Isabella's skin are worth it. This is great news. We will leave soon on holiday and will depart in a very good mood.

Girls are having a good summer. Sleepovers, shopping and plenty of sports ( swimming and rowing in pretty oppressive DC heat)  are keeping them entertained. We've had some fun outings and also attending a beautiful wedding a couple of weeks ago where the girls were flower girls. We are looking forward to catching up with family and friends in Europe soon.

Some photos from some recent activities in DC.

Next MRI end of October.

Lots of love
The Impavidos xxx


Monday, May 16, 2016

All Stable

First MRI since we restarted treatment shows that the trial drug is continuing to have effect. The official word is that the tumor is stable, and shows no growth since the February MRI. Looking at the figures it might even have shrunk slightly. But they need to see a more significant decrease to officially declare shrinkage. However, stable is VERY good we are much relieved and move forward for another three months.

This means we can now finally start to think about our summer plans. We are still constrained by medical appointments and school holidays but we are very grateful that the treatment is continuing to have a positive effect. Isabella is one of the first to go back on this treatment.

Meanwhile in other news: it is still pouring with rain here and feels more like March than the typical May weather for DC. We did have a lovely sunny day yesterday, though very cold for the 5 K color run that Gregorio and the girls did. I waited at the finish with a cappuccino in hand and everyone's sweatshirts!

We are gearing up towards the end of school with lots of annual events, with choral concerts, sports day, exams, birthdays and more.

Next MRI end of July.

Lots of love,
Emma & Gregorio xxx

Monday, May 2, 2016

Race for Hope 2016


Most of the Team at the start of the race.
Well it poured with rain but this did not dampen spirits. We had an amazing turn out, nearly 60 in Team Impavido. Thank you to all who joined us, along with thousands of other runners and walkers. Isabella strode proudly in the survivor's tribute (see video below - though I am not sure this will work!) and we all ran or walked in record speed


video


It was a memorable day. Here are some fun photos of the team!

Team Impavido at the end
We abandoned the celebratory lunch in the garden - even the English think twice about 60 in the garden in the rain....so we moved to a large pizzeria in Bethesda and took over a private room. A fun and relaxing way to celebrate with dear friends. We are very grateful for their immense support and when the rain stopped all kids (and one or two adults) even went outside and played rugby - an annual tradition for two members of the team.

The donations just keep on rolling in, we are nearly at $4,500 raised by Team Impavido for 2016. Vice President Biden spoke at yesterday's event, though we missed him. His support  for this cause and over $2 million raised so far by Race for Hope 2016 will surely move us closer to better treatments and a cure. Here's hoping.

Many thanks to all who supported near and far.

Lots of love,
Emma, Gregorio, Isabella & Matilde xxx



Sheltering in CVS before the start


Great outfit! Did it keep you dry?



Last but not least!


5k ladies - give me a game of tennis over running any day!








Friday, April 29, 2016

Race for Hope looking back

We have been getting ready for our annual 5K Race for Hope to raise funds and awareness for brain cancer. The forecast is not looking good for Sunday. And despite the largest team ever, I think we might be in for a repeat of our first year in 2009 when it pissed with rain.

This got me thinking about how the team has grown over the years. I thought I would pull up some previous photos to share and you can tell by the light and what we are wearing that the weather has varied greatly each year!

You can still donate to this year's cause by going to curebraintumors.org. Please search for our team.  The event raises much needed funds for research into new treatments. Many thanks for all your support. We will be posting photos of the this year's event.

2009
The original team 2009

In the pissing rain in 2009
Proud fun runner!




2010
English side of the family are in town for the event and we had team t-shirts and were showing off Bella's book, trying to find a publisher. Mati and Peter were on scooters!
Team Impavido with shirts & Bella's book 2010
With her neurologist 2010
















2011
Isabella proudly strides in the Survivor's Tribute at the beginning of the event. The nonni were in town for the race.

Survivor's Tribute 2011
Team Impavido 2011
I Nonni 2011
 2012
UK family here again to join the team.
Team Impavido 2012 at the end
Team Impavido 2012 before the race.


2013
Survivors 2013
Survivors 2013
2013 another cold start
2014
Impavido Family 2014
Team Impavido 2014

2015

Bella with her oncologist 2015
Glorious day for Team Impavido 2015





Sunday, February 14, 2016

Here we go again!

We feared it, we hoped otherwise but the reality is: Isabella's brain tumor has grown. We were shown last February's MRI, last October's and now this February's. Sadly there is a steady increase and given it's close proximity to the optic nerve now is the time to restart treatment.

This obviously came as a bit of a blow to us all, particularly Isabella. However, we've had nearly one and half years without treatment and the good news is that the trial drug that she was previously taking can be retaken. It has minimal side effects, there will be 'minimal' hospital visits and most importantly it was successful at shrinking the tumor last time around. Good news, here we go again.

For those of you not in this world of continual medical visits - minimal side effects is still not always pleasant. Last time around there were endless in-grown toe nails. Watching one's daughter have these extracted is bad enough, god knows the pain she endures. The skin issues are another side effect that are not always fun to deal with. And there are the usual digestive upsets, though not as bad as traditional chemotherapy. Minimal medical visits....ha! I suspect Isabella saw more medical experts and had more tests last Thursday and Friday than the average person does in years. Sonograms, cardiograms, EKG, blood tests, endless eye examinations, visits with oncologists, neurologists, endocrinologists, cardiologists, more blood tests. The list goes on and on. Yes we were pretty fed up and drained by the end of last week. Many of these tests to ascertain how she was. The reality is, she feels and looks great, which is good. Then there were all the tests that were necessary in order to restart trial treatment.

So I think we are all set to start this week, tests indicate she is fit to start and we have signed the consent forms to be part of the trial. Just a minor issue of needing to remove some baby teeth as requested by the orthodontist , hopefully we will get that done prior to starting the treatment as the drug does slow down the body's ability to heal wounds. This should mean that only three days include medical appointments this week and leave Thursday and Friday free for fun. What a half-term break!

I am reminded of a saying that the girls learnt in the early years at school - when they were learning to share things with other kids: "you get what you get and you don't get upset". Isabella was initially feeling pretty down at the news but once the medical appointments began, she shows incredibly maturity and is cooperative with the doctors and very accepting that this is the situation and so deal with it we must, start the treatment and on we go. We are very proud of the way you takes it all in her stride.

Isabella had a nice pedicure and manicure as a treat this week-end and we had a great day out on the slopes today - even if it was extremely cold 7F (or -14C or lower?) when we arrived this morning  More snow is forecast tonight and tomorrow and we are hoping to escape to the local slopes for a couple of days at the end of the week if all the medical appointments go to plan.

Then it will be monthly visits to see how she is doing and get another course of medication and three monthly MRI's to see what effect the drugs are having.

We will update you when we have more news.
Love
Emma & Gregorio xxx