A Time for Giving

Christmas is a time for giving and my goodness have you given. We are truly overwhelmed by your generosity, there has been a steady stream of parcels and boxes delivered to our door for the past couple of weeks. Here is a photo of our Christmas tree, it looks like we have been sponsored by fedex, DHL, UPS and postal services from around the world. THANK YOU, GRAZIE, MERCI, DANKE, GRACIAS, EFHARISTO and so on...yet again many of you may be far away but your presence is felt.

We have been having a lovely couple of days in the run up to Christmas, despite the artic weather. We enjoyed a concert at the Kennedy Center, we have seen some magical light displays, we saw the Christmas Pageant at the National Cathedral. There are always so many wonderful things to do in DC at this time of year.

Isabella has selected the seafood and fish from the fish market for our traditional Christmas eve meal which Gregorio is knocking up. We hope she will be able to enjoy some of it. And tomorrow I am on turkey duty. We'll be having our meal in the evening so we can have a leisurely day and get over the worst of post-treatment nausea and exhaustion.

Well we made it to Christmas Eve and the first 10 rounds of chemo are behind us. Isabella is increasingly anxious by the whole procedure so we are grateful for a break from it all. The good news for you is that we may not be blogging so regularly for the next month. Isabella will have a hormone injection on New Year's Eve and then an MRI on January 12, but otherwise we are on a break until January 22nd. We'll update you when we have some news, in the meantime we pray for some good news on January 12th after all she has been through in the past three months.

We wish you and your families a very Merry Christmas and a healthy and prosperous New Year. We'll leave you with the words of a local Christmas song, unfortunately we can't insert here.




It's snowing tonight in the Blue Ridge
There's a hush on the Ches'peake Bay
The chimneys are smoking in Georgetown
And tomorrow is Christmas Day

The Tidal Basin lies quiet
The tourists have found their way home
Mr. Jefferson's standing the mid-watch
And there's a star on the Capitol Dome

It's Christmas Eve in Washington
America's hometown
For it's here that freedom lives
And peace can stand her ground

It's Christmas Eve in Washington
Our joyous wish to you
Is for peace, love and laughter
to last the whole year through

Snowmen peeking through the windows
It's warm with love inside
'Round the tree the children gather
Awaiting Santa's midnight ride

Mom and Dad are counting their blessings
Reflecting on all they've done
So thankful for another
Christmas Eve in Washington


Love,
Emma and Gregorio. xxx

Round 9: we are counting the days to Christmas Eve

Each chocolate that has been consumed on opening our advent calendar this year signifies a day closer to the arrival of Peter and Janie from London and a day closer to A BREAK FROM CHEMO. We are almost there. Hallelujah.

Isabella had a pretty good week. Again last Friday she was very low physically and mentally but she was back on form on Saturday waking us up with the question "why does the sun stay hot?" A tricky question even when you are wide awake.


We then enjoyed a whole host of fun activities, including a tour of the White House to see the Christmas decorations. It was beautiful. Matilde was enchanted by the choir singing Christmas carols at the end. We have also had the school play. Matilde pranced like a beautiful fairy and Isabella rapped with real attitude!

Today we hit round 9, just one more to go for 2008. Isabella continues to be the real Impavido (translation: fearless) and fights on. Matilde, Gregorio and I have been battling with your common old garden cold and cough and are exhausted. As I write this at midnight on Thursday Gregorio in on his way home from the hospital with Isabella . We rushed her in this evening on seeing a temperature of 101 F or 38.3C. As a chemo patient her immune system is depressed but also a temperature in a patient with a central line could indicate a serious infection that needs to be treated with antibiotics by IV immediately. Poor Isabella, we draged her from her post-treatment slumber and exhaustion, only to discover that she did not register a fever at the hospital. However, they decided to do some blood tests and give her the medication anyway. Unfortunately the staff in the ER are not as well trained at accessing the port as the oncology staff. A traumatic end to a long and difficult day for Isabella. We'll be back at the hospital on Friday afternoon for another dose of antibiotics and that should be the end of today's drama.

Well tomorrow our visitors arrive, it is the last day of the school term and we can start to relax for Christmas. Roll on Christmas eve.

Love,
Emma and Gregorio. xxx

Sisters

Lest, Matilde not be forgotten in all this and as an example of the support we are getting from the hospital and the generosity to be found in this country, there is an amazing foundation called "SuperSibs" for super siblings of cancer patients. Matilde has started to receive her own notes with activities etc. Not to mention all the lovely cards and gifts you have all sent her.

We have been thinking about how Matilde is coping with everything. It is hard to know what a 4 year old really thinks. Apparently at school she is her usual gregarous self. As you can see she is quite a character. This is a photo of her taken last week, ready to go and do the shopping.

When Isabella's tumor was first diagnosed Matilde was obviously confused and concerned about her sister being in hospital and getting lots of shots (the biggest fear a young child has). As the weeks went by, she became relatively jealous of Isabella. As those of us with siblings know, no matter how much you love your sibling, the feeling of jealousy is pretty common. Only on becoming a parent do we start to understand the difficulty of dividing our time, energy and love fairly between them all, even at the best of times. Matilde said a number of times recently "why is Bella always with you and I have to be with nonna?" This despite being spoilt by nonna or having spent the morning with me.

As Isabella's treatment has progressed, Matilde has been rather unaware of all that her sister is going through. She is at school on Thursdays when we are getting treatment and on Fridays, which is often a low day for Isabella, Matilde is also at school. Last Saturday morning, as Matilde and I went off to do the shopping, Isabella waved to us from the window. Matilde said "poor Isabella, she has a sad face, we have to make her happy" Indeed, we do, perhaps we just don't know what is going on in Matilde's head. Recently, she has been very sweet with Isabella, running and fetching her blanket or soft toy, or getting an adult when Isabella is feeling sick. She quite likes being a little bit of a 'big girl'. She seems to even quite like sleeping on the top bunk now.

Meanwhile, Isabella is very fond of her little sister, Matilde. During her low days, she wishes Mati were home to do one of her 'shows'. Some of you will know how unique and entertaining these can be. But don't think it is all idyllic in the Impavido household, they do still fight so life is pretty normal!

Today Isabella reached round 8. This past week, despite a very low start, she bounced back by Sunday and the doctors decided carboplatin and just half a dose of vincristine. Well we are another week closer to Christmas and our much needed "break". The break will still include a lupron hormone injection (which does seem to knock Isabella sideways) and an MRI with full sedation on January 12th. Right now we are focusing on the last week of school. The Christmas performance will see Matilde as a fairy and Isabella's class are going to be rappers. She has quite a selection of bandanas to choose from for her costume! It should be entertaining.

Love,
Emma and Gregorio. xxx

Round 7: only 3 more to go till Christmas

The Impavidos had a happy Thanksgiving in good company. None of the Italians at my table took a liking to pumpkin pie - but nobody's perfect and that left more for me! You should know that my dear husband, Gregorio is the one with a tender heart and the author of last week's blog. He won me over with a copy of a Pirandello play nearly 15 years ago. He's still a big softie underneath.

Isabella enjoyed turkey and cranberry sauce but the rest of the week was downhill. We did not manage the major side effect of the vincristine well and she was pretty low physically and mentally for the whole Thanksgiving break. She only managed a few hours at school on Tuesday but bounced back and had fun all day on Wednesday.

Today we reached round 7 and the doctors decided we had probably pushed her body far enough with vincristine. So a break from that today and only the carboplatin this week. Added to that we also had the lupron hormone injection. We're hoping for less pain this month. Dr Baldy and his side-kick the resident clowns at Children's Hospital appeared at just the right moment this morning and produced a big smile on Isabella's face. She has slept the whole afternoon and has awoken a new person, smiling and laughing and hungry for food. We haven't seen that Isabella for a while. She requested sushi and edamame for supper (she hasn't put in food requests for some time) and that is what she got. She is lapping it up while watching (for the umpteenth time) High School Musical 2.

The house is empty, the Italian grandparents have returned to Rome after their tour de force here. We are extremely grateful for all their help. We are now busy making Christmas decorations, cards etc. Apparently we are getting our Christmas tree on Saturday and in a couple of weeks English family will arrive.

We're are really looking forward to Christmas. We have the last round on Christmas eve and then there will be a break of 4 weeks before treatment starts again. And then we'll have 4 weeks on and 3 weeks off. In January there will be an MRI to assess what effect the past 10 weeks have had.

Here's to a good week.
Love,
Emma & Gregorio. xxx

Apricots Have Never Tasted Better

L'Uomo dal Fiore in Bocca

Thanksgiving. Thursday , November 27, 2008.

For us, Thanksgiving has suddenly acquired a new meaning. After ten years, we have stopped observing our friends celebrate something that only a few months ago seemed curious, ritualistic and somewhat distant. We have finally left our Mayflower behind and started understand what these shores mean for our family: the generosity, the compassion, altruism and love of so many close and seemingly distant colleagues, friends, relatives and even strangers.

To all of you, we are indebted for the food at the door, the night at the concert, the play dates, the words of support, the hard work at home, the phone calls, the physical presence here after hours of uncomfortable flights, the gourmet restaurant catering, the unsolicited references, the professional medical advice, the never ending prayers, and for so much more. To Isabella, we are indebted for allowing us to show her and ourselves we can be better parents. We will never be irritated for missing the next train to go on holiday or for any banal inconvenience, of which life is so full. Every day, every blade of grass in our patch, is now brighter, greener and more meaningful. Everything is purely strepitoso and even simple things like apricots taste now so much better. Pirandello was right!

We still have a long way to go, but it is the journey that defines who we are and we will travel this road with your unyielding support. Here you are (and surely we have missed many; we have not even included all the girls' friends), together with all your families, friends and communities: our wall!

Adriana S., Alberto M., Aldo V., Alejandra M., Aleš Č., Alessandra B., Alessandra D., Alessandro P., Alessandro S., Alex M., Alfredo L., Ali S., Alismond L., Allen P., Alnere T., Amanda Y., Amy K., Andrea Perso., Andrea P., Andrea R., Andrew C., Andrew S., Angela B., Angela D., Angelo R., Anna G., Antonella S., Antonia V., Ariella T., Augusto d., Axel B., Aydin, Barbara M., Barbora Č., Barry J., Ben C., Bepi D., Bethan A., Betsy F., Billy N., Bonizella B., Brian J., Bridget, Bryan S., Carla D., Carlo C., Carlo I., Carlo P., Carlo S., Caroline S., Caroline W., Carolyn T., Cecilia C., Ceyla P., Charlotte F., Chase P., Cheryl E., Chiara A., Chloe C., Chris R., Christy E., Claire C., Concetta, Costa S., Dana S., Daniela C., Dave C., David D., David F., David M., David M., David P., David W., Dean P., Debbie L., Deborah V., Denisse Y., Deniz B., Dimitri V., Domenico L., Dominique S., Durelle L., Ed C., Ed Y., Edda O., Elaine R., Elaine S., Eleni Z., Elvira M., Emanuela D., Emanuela G., Emanuela G., Emanuele S., Emilia I., Emily B., Emily G., Emily P., Emma D., Emma G., Emma P., Enrico M., Enrico T., Enrique P., Eric L., Esperanza L., Eve D., Fabiana V., Fabrizio R., Fausto S., Federica R., Feno M., Filippo Z., Fiona U., Flora C., Florence D., Florence S., Fran B., Frances D., Francesco P., Francesco R., François F., Fred P., Fulvio D., Gabe S., Gabriela Z., Garry C., Giampiero T., Giancarla L., Gianna I., Gigi R., Gill, Gillian J., Giorgio V., Giovanni D., Giovanni M., Giovanni V., Giulia L., Grazia v., Gustavo D., Hazel P., Helen A., Hemant S., Hope H., Horacio T., Humberto L., Ian A., Ian T., Ilse H., Ingrid R., Isabella V., James P., Janet D., Janet V., Janie C., Jean C., Jean G., Jean Pierre v., Jeanette, Jen J., Jennifer E., Jenny R., Jeppe L., Jerry P., Joel G., Johanna F., Juana, Jude P., Judith R., Jui C., Juliet C., Justin M., Karen E., Karl D., Karol J., Kat J., Kate S., Katie S., Katy P., Kerrie R., Kit B., LaDonna D., Larry G., Laura O., Laura V., Lauren T., Laurent v., Lawrence H., Leigh F., Lele L., Leslie P., Limor F., Linda E., Livia v., Liza H., Lorenzo G., Luc L., Luca R., Lucy C., Lucy H., Lynn G., Maddalena H., Maia K., Makhtar D., Mangal G., Manuel G., Manuel P., Mara S., Maria Elena T., Marie-Isabelle C., Marie-Rose L., Marina L., Marion W., Mark D., Markus L., Marla B., Martin, Martin C., Marty G., Mary M., MaryBeth M., Marzia K., Massimiliano P., Mathew R., Matt F., Maurizio B., Maurizio G., Max V., Meg, Mel, Michael C., Michael L., Michelle K., Mike B., Mike D., Mike E., Milena P., Mireille S., Mirella I., Miss C., Molly C., Monica S., Mrs J., Mrs L., Nadia S., Nancy H., Nannette V., Natalia P., Nicola L., Nicola N., Nicola S., Nikolas Z., Nirmaleen J., Noelia C., Olga S., Oseas R., Pamela O., Paola B., Paola V., Paolo, Paolo D., Penny F., Penny F., Perolo P., Persa, Peter G., Peter H., Peter L., Peter W., Phoebe C., Phyllis F., Phyllis K., Piercarlo B., Piers N., Pilar, Pilar B., Pippa N., Rachel H., Raffaello C., Randall D., Randall S., Rebecca M., Regitze L., Rianne, Richard H., Rik S., Roberto C., Roberto G., Roberto O., Roberto P., Roberto R., Roberto S., Rodney L., Rodney S., Roger P., Romana D., Rory, Rosanna P., Rosanna T., Rose H., Rosemarie, Roshini P., Rosi R., Ross, Ross D., Sabrina C., Sabrina F., Sally D., Sally G., Sally S., Samantha H., Sandra, Sandra R., Sandy, Sarah Jane M., Sarah M., Sarah S., Sarah S., Saverio A., Sean R., Sharon, Sheila H., Sheila T., Silvia M., Silvia Q., Simon B., Simon D., Simon F., Simona C., Simonetta M., Sofia P., Sophie A., Stacie B., Stefania F., Stelios Z., Suchelle R., Susan M., Susana D., Susie P., Tarcisio M., Tatiana, Themis Z., Thomas T., Thymi V., Tiffany M., Tobey M., Tommaso L., Val M., Valle P., Whitney K., Wyatt R., Yanni S., Yelda G., Zsofia A.

Happy Thanksgiving!
Love,
Gregorio & Emma

Round 5: Scherzo: Molto Vivace

In preparation for Thanksgiving and to make light of our change of appearance, nonno has been donning a new hat as pictured here!

This week a dear friend, who is a pianist, kindly invited us to one of her concerts. She said she was personally dedicating the piece to Isabella. The third lively movement certainly summed up Isabella's attitude this week.

Last Wednesday she decided she wanted to tell the class why she was loosing her hair. She sat in front of the whole class and explained very matter of fact that her special medicine was causing it to all fall out. By Monday she was pretty much bald underneath her scarf. She told Miss S. that she wanted to show the class. And so she sat in front of them and showed them all. When asked if it would grow back, she replied "yes and I think it might grow back pink this time!" Apparently they were all in fits of laughter. When she showed them her scar across her head, the boys rose to the occasion and started showing off their latest scars. Kids are amazing.

The next day at swimming, Isabella got changed into her costume and then whipped off her scarf ready to jump into the pool. The other kids barely batted an eyelid at her new look. They just see Isabella. What more could a worrying parent ask for? Though, I know exactly what the adults present were feeling. Childhood innocence is such a beautiful thing.

As in previous weeks the past three or four days have been very good, though she does get increasingly tired at the end of the day. Last Friday we had a little drama when a high temperature revealed an infection so we were back at the hospital for antibiotics by IV. This was temporary and we were quickly back on track.

Isabella is much more in control of the situation. She is talking a lot about what is going on. She is a woman after all :). At her tap class she seemed to sit there the whole time and tell the teacher and her friend all about what was going on. They were so sympathetic; I could see Isabella was enjoying talking all about it.

Undoubtedly, she is getting fed up with having to keep going back to the hospital week after week but today we are half way through the first session. The final one will be on Christmas eve and then we get a month off! Today she only had one drug - the vincristine which took a matter of minutes to administer and thankfully we had St. Jeanette to access the port, none of the trauma of last Thursday and Friday. There should be less nausea with just the vincristine and hopefully it will take less out of her.

Now we are taking it easy and looking forward to seeing the Cirque de Soleil at the week-end and Thanksgiving next Thursday.

Lots of love to you all,
Emma & Gregorio xxx

Round 4

Isabella was knocked sideways by round 3 last week. Added to that she began treatment for the precocious puberty. There were quite a lot of issues to deal with physically, mentally and esthetically. We are still working out how to best manage the major side effects. Last week-end, Isabella was a mere shadow of her former self, there was no sparkle in her eyes. And then Monday arrived and she bounced back and had three great days at school with her friends. This was very reassuring.

Wednesday night she lapped up penne al pesto, the first decent meal she had eaten in over a week. The european collection of elder females present were heartened by the sight. I think the Greek entertainment definitely helped!

Today we were back at the oncology clinic for round four. Isabella has the routine down to a fine art. We try and cruise in first to the clinic at 7:45, today we were number 2. After we've checked in and checked on the number of fish in the fish tank, one of the nice nurses takes her vital signs. This week she did loose some weight. Then we wait to see the neurologist, the oncologist and finally the nurses arrive to access her port and draw blood. Despite the aneasthetic cream there is always a moment of panic. But St Debby is ever there with her hands ready to be squeezed during the quick procedure. Then we are free to enjoy the art room or the playroom. When the blood tests come back we are then given the all clear to proceed to our 'pod' of choice where we settle in and do some homework, reading and DVD watching - Tinkerbell today. Finally the chemotherapy is concocted and the nurse begins the process which takes about 1.5 hours. All this time, Isabella is happy, she knows the routine, the nurses make it fun. Today we saw the clowns again and we met her neurosurgeon, whom she adores in the art room.

We got home for a hearty lunch at 1pm, Isabella then took it easy. After last week, we decided rushing to school for such a short time was not worth it. We tried taking her to Italian classes this afternoon but she didn't last long. She was not happy and the aches and pains and tiredness were kicking in. She declined my roast pork and mashed potato for supper and went straight to sleep. She is getting increasingly tired but still she is coping incredibly well, all things considered. Tomorrow is another day. In fact, we are looking forward to the class assembly - she'll be the elephant trainer in the circus. Followed by pizza lunch and the Fall Festival.

She has adjusted to shorter hair but is ressembling papa more and more. On Tuesday we started wearing scarves. Here are the two sisters sporting their latest look on the way to school. Any opportunity to dress up and young Matilde is there!

We are contemplating our headwear, Isabella does feel the cold but doesn't want an itchy wool hat indoors. I know some pretty cotton hats are on their way from South Africa, thank you. A dear supporter of team Impavido has come up with a lovely idea. If you have some interesting scarves or pieces of material perhaps you would like to send them to Isabella. Each piece will represent a story, a virtual hug and symbol of strength for Isabella from around the world when she wears your scarf.

Thank you to Miss E for this idea and all of you for your continued support. You really do all give us strength with your messages, calls and presents.

Love,
Emma & Gregorio. xxx

Hair today, gone tomorrow?

Yesterday Isabella's hair started falling out so we all went to the barbers this morning. Isabella was a little upset to loose her long plaits (braids) but seems to enjoy the chic French look she is sporting now. Realistically it will be probably somewhat thinner within a couple of days. But she's getting used to the idea. It's autumn, the leaves are falling and so is our hair.

Luckily there are certain members of the Impavido household with limited hair on top. And this morning, Gregorio decided to go full out for the Kojak look. They make a great team. Here they are post hair cut with their chupa chup prize.

Round 3: Yes we can!

Isabella is cruising through the rounds.

We are learning to manage the side effects, by and large she is continuing life as her normal happy self. She was pleased to be back at school this week. Unfortunately today's session at the clinic only gave her an hour at school, but we'll be back bright and breezy tomorrow we hope.

It still seems like a long road for some of us, but when there are those moments of doubt about whether we will make it, there's that now famous phrase: "YES WE CAN!"

On hearing the news that Obama had won (we whispered in her ear at midnight) her eyes opened and she smiled and said "yeah!"

Round 2: Trick or treat?

Isabella tolerated the first round of chemo well. Last week-end she was understandably up and down following the operation and the chemo. She was affected to some extent by all the minor side effects but by Monday she was back to her normal happy self.

She defied the statistics and even gained weight this week. Apparently not normal for most patients after their first treatment. I am sure helped by Gregorio's cooking. Last night polpo alla luciana (octopus soup) was on the menu. I couldn't stomach it after a colleague's description of his culinary adventures in Vietnam but Isabella lapped it up!

This morning we were back at the oncology clinic for round 2. There was a moment of panic as the port was accessed with a needle for the first time. Thankfully our promise that there would be no pain because of the aneasthetic cream held true. And we settled down for a couple of hours video watching while the drugs were administered.

And then back home for lunch and on with the rest of the day. We're confident she'll tolerate this round better than the last and that the week-end will be full of treats.

Beware there will be a scary witch and a flamenco dancer-cum-princess-cat parading the streets of DC tomorrow evening. The Italian grandparents, experiencing Halloween for the first time, are in for a real treat.

Let's hope that next week brings more treats and no tricks on all fronts.

Enjoy!
Emma & Gregorio xxx

Round 1

We have come a long way in a month. We've seen more doctors, surgeons, aneasthesiologists, nurses (in no particular order, you medics) than you can imagine. Each time Isabella smiles and wins them over. Not to mention all the tests, procedures and sugeries Isabella has taken in her stride.

Today the port a cath was inserted successfully. At the last minute a change of surgeon and an explanation of the complications adds a little spice to the game. As always children's hospital are exceptional and we have faith in them. Today we even had clowns to entertain us, while we waited for surgery to begin. Very helpful given that we had 3 hours...

Having completed surgery, we meanered by hospital charriot to the fourth floor to begin the medical version of round up. (Gregorio's weed killer of choice in the garden). Isabella has been told she had a small tube inserted so that we can give her medicine to kill the weeds . And she doesn't have to taste the disgusting medicine..

The chemo took about an hour and half to administer. Isabella enjoyed a film and started dreaming about what nonna had concocted for dinner. As always Isabella has her priorities.

Another long day but round one is behind us. Now we are all sitting on the sofa honing our fighting skills by watching Kung Fu Panda. Matilde and Isabella know all the words. One thing is for sure you won't get this fighter saying I'm not hungry, master"

So far we are reacting well. I am sure we'll sleep well tonight. Possibly school in the morning and then we have the half term week which will be full of tricks and treats.

Tune in next week.

Love

Emma and Gregorio xxx

First visit to the oncology clinic

Life is pretty normal in the Impavido household.... we had a fun day at the pumpkin patch on Sunday, taking hayrides, running around, loosing Matilde, enjoying a nice picnic in the sunshine with friends. Lots of fun and laughter all round. Thank you. A perfect autumn Sunday, even if it did feel like August! This week Isabella has been back at school. We have been trying to keep up with the playdates and various school and after-school activities, of which there have been many. Plenty to keep one's mind occupied.

And our 'new life' wouldn't be normal without at least one visit to Children's Hospital. We spent this morning at the oncology clinic and met all the key players and discussed the regime which will include two drugs (carboplatin and vincristine) delivered by IV and another daily tablet of (gleevec) which should further inhibit growth of the tumors. The side effects seem minimal and we hope that Isabella will react well.

The staff and the clinic are totally geared to the children. Isabella spent the morning doing the little tasks the nurse bet she couldn't do and enjoying the arts and crafts room. Another fun visit.

On Monday we will meet the surgeon who will insert the central line into her chest to administer the drugs. The surgery will probably happen next week and the treatment will begin that day. We'll be returning to Children's every Thursday morning for the following 10 weeks. The great thing about this type of line is that it will be under the skin, so no daily care required by us and moreover, Isabella will be able to swim anywhere, whenever she likes. We are very pleased about this, she is such a water baby. Each time she has treatment they will numb the area with cream and then insert a needle. She will cope with this.

As we move through the various cycles of treatments there will be follow up MRI's to monitor the tumors.

We now have a battle plan and will await our marching orders to begin. Isabella is unaware of the next stage, Gregorio and I need to come up with the next game so please do not mention anything to her.

There is plenty of joy and laughter in the household, the girls are enjoying all the visitors and missing those who have already left. The little gourmande is enjoying prosciutto and mozzarella di bufala this week.

Thank you for your continued support.

Love
Emma & Gregorio xxx

Marching forward

This morning we met with the brain tumor specialist at Children's to discuss the next stage. They have diagnosed a Juvenile Pilocytic Astrocytoma (JPA). It is low grade; i.e., not aggressive. This is good news. They are seeking a second opinion from a pediatric pathologist in Philadelphia.

Isabella will be starting chemotherapy in about two weeks time. She will have weekly doses every Thursday for 10 weeks at Children's. There will then be a break and then start again for four weeks and off for three. As many of you know, these things do change and evolve depending on how the person and the tumor reacts to the treatment. There are other drugs that they will try if the first one doesn't work.

It is not an aggressive form of chemo and most of his patients respond well. However, this is not your average tumor because on reviewing the MRI of the spine they did find a small tumor there and there is the smaller tumor in another area of the brain. This type of tumor does not tend to spread like this, so there could be other tumors that they have not yet located (but only in the spine or brain). Chemotherapy is the best option at this stage.

The aim is to control or hopefully reduce the size of the tumors for the next 3-5 years. In which time there may be new treatments that are currently in trials. As a last resort, there is radiotherapy. This would kill the tumors but there is the risk of brain damage.

Isabella is doing extremely well, given that she underwent brain surgery last Friday. She is bouncing around and bored of being at home. So it is back to school on Monday and business as usual. She does not yet understand everything that is going on but she is being very cooperative and taking it all in her stride. Should you meet/talk to her, please let her bring the subject up and talk about it very matter of factly.

Love,
Emma & Gregorio

Back Home

Monday morning and we are back home. Isabella (and Gregorio) are pleased to get back to their own beds.

They said children were resilient but we didn't quite believe it. She made dramatic progress over the week-end. On Sunday she was sitting up and laughing, particularly at my description of Matilde's picture at breakfast - a snake with glasses. He had glasses on so he could find the ants!Isabella has been incredibly brave and taken the whole experience in her stride. She is tough she claims not to be in pain and is refusing any pain medication. The swelling has gone down and she is regaining her energy.

She told the doctor this morning that the food in the hospital was disgusting and she was looking forward to going home to eat some real stuff, like fruits and vegetables. When she got home she put in her order for lunch and her personal chef produced pea soup, risotto con gamberi and a pear. She polished the lot off!

Now we are taking it easy at home and will await the biopsy results this week and will let you know about the next stage.

Love,

Emma and Gregorio

Hospital Sleepover

Isabella has made it through surgery successfully and is doing very well. The procedure took a little longer than anticipated, not least because the surgeon was being very careful of Isabella's golden locks.

Isabella bounced into the hospital this morning at 6am on her way to a "hospital sleepover" and was apparently laughing in the operating theater. She (and we) are now resting in the intensive care unit. All her vital signs are good, you can hardly see the cut though her face is swollen.

We should have the biopsy results next week. Now we'll focus on recovering from the surgery.

Love Emma and Gregorio

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.

Principessa Impavido

On Tuesday an MRI revealed that Isabella has a brain tumor. Tests over the summer had confirmed that she had the condition precocious puberty and the MRI was merely a formality to rule out any tumors on the pituitary gland. Statistically the chances of finding any tumors were extremely low.

As the week progressed the news did seem to be going from bad to worse, but as we write this on Friday evening we have just learnt that there are no other cells in the spine. The blood work. done yesterday would strongly indicate that we are dealing with a low grade glioma, with possibly another small tumor in another part of the brain. The experts say it is treatable. We will be doing a biopsy next Friday - this is still major brain surgery - and will then know for certainty what type of tumor we are up against and what treatment we should then be following.

We are in extremely good hands at Children's hospital here in DC. We cannot describe the care and attention we have had in the past 3 days. And her pediatrician has also been extremely supportive. We shall seek a second opinion at John Hopkins in Baltimore on Monday but will almost certainly go with the surgeon at Children's hospital. She inspires great confidence and has done this type of surgery many times.

How is Isabella doing? She is amazing. She hasn't quite realised what is going on yet, despite the two MRIs this week - with sedation and the numerous doctor visits. She laughs in the waiting room, she is happy to be going for another MRI (as she might get another soft toy) and she barely kicked up a fuss at being woken at 6 am this morning to be given breakfast and then not allowed to eat until 7 this evening. Not to mention all the blood tests. This afternoon, she was telling the doctors what to do, "yeah, yeah give me the mask, I've done this before. I'll wake up later!" She is truly amazing and gives us strength to fight on.

This is only the beginning but we'll take it a step at a time and we will fight on. Isabella is a strong girl. We are truly grateful for all the support from the doctors, family, friends, work colleagues and the girls school. We will update you on her progress.

Love

Emma and Gregorio xxx