Monday, September 29, 2008

Tidal Wave of Cyber Love

We have been overwhelmed with all your kind words and thoughts in the past couple of days - in person, by phone, email and the comments you have left here. THANK YOU. You are all giving us strength to fight the days, weeks and months ahead. Not only have you sent words of support and love but you have reached out to pediatric neurosurgeons and oncologists around the world. You know who you are, we are truly touched.

Today we met with another pediatric neurosurgeon at Johns Hopkins in Baltimore. The bad news is that all doctors agree that it is not a "simple" pituitary gland adenoma, as we had hoped for, but a real glioma which tends to spread in the brain and recur over time. The good news is that among the four grades around, all doctors agree that this is a low grade glioma: i.e., extremely treatable with chemo. He also confirmed what we were told last week at Children's hospital but added that what appeared to others as a tumor split off from the main one, in another area of the brain, could well be a simple vein. Furthermore, we were reassured that we are in extremely good hands at Children's Hospital, here in DC. We are lucky enough to be able to receive another opinion from Rome in the coming days but as of now, consistency in opinions is a good thing.

We breathed a sigh of relief and found renewed strength as we move towards the biopsy this Friday. We then took Isabella for a really nice Greek lunch in Fells Point, even Gregorio and I were hungry today. This afternoon we also talked to her about a small weed in her head that needs to be removed, like a weed in the garden. We explained she will get her mask, fall asleep and then they will make a little cut and remove it. Like the small cyst she had removed from her neck a couple years ago. The conversation was very matter of fact, no questions asked and we carried on playing. She is still bouncing around and an extremely happy girl. In fact she is keeping us in line. On Saturday we produced a bowl of pasta for supper. Isabella said "no broccoli?" I apologised for not cooking any. "But we do need vegetables mummy!" Thanks Miss M, a lesson well learnt.

The upside of all this is the wonderful time we have had together as a family in the past couple of days. We painted pottery on Saturday, we went to the cinema and then on Sunday we went on the carousel at Glen Echo. $1 can buy a lot of happiness for all ages! Gregorio and I had talked about going away for a couple of days but Isabella is desperate to get back to school and see her friends and teacher. The highlight of her week-end was seeing 'my best friend'. So it will be business as usual until Friday. School for the girls, swimming lessons etc and Gregorio and I will distract ourselves by working.

We are grateful for all the offers of help, we will let you know when we need to take you up on them. As I am sure we will. In the meantime, family will start to arrive on Wednesday to assume Personal Assistant to Matilde. She is very happy, she seems to be getting a lot of playdates with her friends at the moment.

We will meet with the surgeon on Thursday afternoon and the operation will take place on Friday. We will be in the hospital for at least a week. We will keep you updated.

Thank you all for your continued support, it really does help.
Love,
Emma & Gregorio.

19 comments:

Anonymous said...

Sooo glad that we are having some bits of good news already. I am sure more is coming. We think of you all the time. I have these pictures I keep on looking at of the kids at the Pinna's Halloween party last year (my Mum kept on asking me: who are the two beatiful little girls wearing Spanish costumes???). I am sure Isabella will be celebrating big time this year too!!!!!
Love
Barbara & Francesco

Charlotte said...

Have just got back from Croatia, and was immediately concerned, even before opening the blog or email. We are thinking, thinking of you and wishing all the very best. Oscar has looked at the pictures of Isabella and Mati almost since birth (!), and think they look absolutely gorgeous (particularly in their Halloween outfits last year) and we completely agree. Marvellous to hear about Isabella's humour and strength, qualities she has clearly inherited from her parents. It sounds like you are dealing with all of this brilliantly, so bravely and sensitively. We wish we could just pop round, perhaps with a prepared meal (or some broccoli?!), or to play with the girls if that would help, but I am glad to hear you have such good support and friendship locally. Our warmest wishes and love stretch across the Atlantic, and we will be thinking of you especially on Friday.
Charlotte, Limor and Oscar x
Dorset, England

Juliet said...

Jamie and his friends all wish Isabella good luck and hope she feels well after friday's weeding by the doctors. They have been hard at work making a surprise for Bella which we will post from England and she can open it in her room in hospital next week. We are all thinking good thoughts for her and sending her big hugs.
love,
Juliet, Jamie, Ben and friends. xxxxxxxxxxxxxxxx

Anonymous said...

Emma and Gregorio, this is a message of love and support from Gill and Rory in South Africa. We feel your pain having been through a similar experience with our son, Cameron, fifteen years ago when he was about the same age as your beautiful Isabella. Cameron has recently turned 21! Draw strength from your friends and family and believe in the positive energy and love which is coming to you from all over the world.

Regitze said...

Sending love, prayers and support. Anything, just ask!

The Ladekarls xxx

Roshini said...

We are just next door - though it can seem very far away, with so much going on. Know that we are there for you, ready to help in whatever way we can - so please ask. We are so fond of Isabella and Matilde and have watched them practically from birth - they are adorable girls. We are sure that Isabella's sunny, friendly, plucky spirit and Mati's love and affection will help to get all of you through this week and beyond.
With much love,
Roshini, Valli, and Rosemarie

Unknown said...

Dear Ones,

So glad to hear some good news. You are constantly in our thoughts- please let us know if you need help with Matilde...or anything at all. Isabella is truly an inspiration.

Our love,

Em & Piercarlo

Anonymous said...

Dearest Emma,
I cannot believe the shock. We'd been in the Loire Valley 25-30 September, so I only just opened my e-mails thinking this one was another set of lovely photos of your lovely daughter. I'm utterly shocked and inexpressibly sorry. I saw the photo first and thought how gorgeous she looks and how much like you she is now. Then reading down, I came to the second entry first and it was like some sort of nightmare which I still haven't adjusted to. How infinitely much worse for you and Gregorio. I'm devastated for you. I wish so much I could just come over and give you a big hug. Lots and lots of love to you all,
Sheila

Anonymous said...

Hi Emma and Gregorio,
Emma has passed on your blog to us and we are so very much concerned about Isabella, and of course, you two. We have been immersed in fighting Greek red tape and builders, and have now realised just how small our problems really are. It sounds as if you could not be in better hands though, and look forward to a positive report after Friday. We wish we were closer and could offer real help to you all. Thinking of you every day and night,
lots of love
Jerry and Leslie P

Juliet said...

(.....You may need to get in a big ball of blue-tac!) I forgot to put some in!
Love,
Jxx

Anonymous said...

Dearest Emma and Gregorio
What staggering news. We have been trying to find words of comfort ever since finding out and I fear that there are none. Please know that our thoughts are with you all at such a worrying time. We wish you all the best of luck for Friday.
With so much love
Pip and Piers Noble

Unknown said...

Dear Emma and Gregorio.
We just heard your news from Janie. Please know that we are thinking and praying for you and your precious little girl. She is absolutely gorgeous and we can only imagine how hard this is for you, but we are sure that she is going to amaze you with her strength and resilience.
Warmest wishes and lots of love
Alnere, Thomas, Ethan, Rachel and Julia

Anonymous said...

Hi guys

The girls send their love and hugs and a good luck kiss for tomorrow.

Charlotte and Sophie

Unknown said...

La Luna piena minchionò la Lucciola:
- Sarà l'effetto de l'economia,
ma quel lume che porti è debboluccio...
- Sì, - disse quella - ma la luce è mia!
(trilussa)
Un abbraccio pieno di luce
sandra e andrea

Suze Millar said...

My dearest lovely souls
You are sooo much in my thoughts and I send all my love for tomorrow. It's the hardest test of all, but I know you will cope and strength will come and find you when you least expect it. I am concentrating vividly on the comment from Gill about their son Cameron, now 21...
A big kiss to you all.
Lots of love,
Suze
xxxx (one each, no squabbling!)

Unknown said...

Emma,

It's 8:13 on Friday morning. Im praying for Isabella, and her doctors - and you... Sending our love.

Marie-Rose

Anonymous said...

Me encantaria poder estar ahi, pero de igual manera tengo a Bella en mi mente cada momento. Estamos rezando porque todo salga bien. Mucha fuerza.
Con carino

Pamela y Roberto

Anonymous said...

Carissimi Ghio ed Emma, sarebbe stato bello sentirci in una situazione diversa, ma tant'e'... questo e' quello che la vita ogni tanto ci riserva. Non so veramente come esprimere i sentimenti che ci stanno attraversando il cuore... sicuramente posso dirvi pero' che, anche se sono forse 20 anni che non ci sentiamo o vediamo (che non vedo Ghio, per essere precisi: purtroppo non ho ancora avuto il piacere di conoscere Emma e Isabella, cosi' come non ho potuto farvi incontrare ancora Deborah, Filippo e il piccolo Matteo), vi siamo vicinissini e pregheremo per voi e per Isabella con tutto il nostro cuore e il nostro affetto. Un abbraccio fortissimo a tutti, in bocca al lupo per l'operazione di oggi e seguiremo con ansia il blog per tenerci informati. Forza e coraggio, ragazzi, e speriamo che tutto vada per il meglio!
Giorgio, Deborah, Filippo e Matteo

Silvia said...

Carissimi Gregorio ed Emma, anche se è tanto che non ci sentiamo volevo ugualmente farvi sapere che vi sono vicina con tutto il mio affetto in questo momento così difficile. Sono sicura che tutto andrà per il meglio. Un fortissimo abbraccio, Silvia