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.