Thursday, December 31, 2009

Goodbye 2009




Crack open the champagne, we can say goodbye to 2009 and truly look forward to a great New Year. Isabella received the final dose of carboplatin today. We all went off to the hospital this morning. Matilde was entertaining in the backseat and Isabella broke out into great laughter, so infectious that we all arrived laughing. Thank you Mati. There were very few  staff today (even doctors and nurses need a break!). Dear Jeanette was the only one available to access Isabella's port.  She has not done so for some months, you could have cut the tension in the room, we were all anxious for the day to be free of port drama -  great relief all round when she hit the bull's eye first time and pulled back loads of blood.

We'd be lying if we didn't admit we've been imagining reaching this day for a while. But no jumping up and down and screaming for joy, just calm relief for having made it and a special 'end of treatment' bead added to her necklace representing this journey.

This time of year leads to reflection by everyone but I think we've been doing that all year so we will look forward to life without chemotherapy. An MRI is scheduled for January 27th. The neuro-oncology team will meet the following Monday to review the scans of her brain and spine. We'll see doctors then also and hopefully all tumors being stable, if not further reduced, we'll get a date to remove that port as soon as possible afterwards. Thereafter we'll have three monthly MRI's and check-ups to monitor the tumors. We're hoping to get as long as possible before we have to consider more chemo, new drugs currently in trial or radiation.

2010 will be a New Year, I'm increasing my work hours, up to four days a week, we have booked a week's skiing in Utah in February, we're going to Disney for Isabella's Make a Wish in April and all things being equal we're planning a big European trip next summer. Family and friends stay tuned we want to see as many of you as possible over on the other side of the pond.  We have made all the usual New Year resolutions, who knows how long they will last! Most importantly we have one big wish for the future, in the meantime we'll take it one MRI at a time.

We'll not be writing so regularly in 2010, only when there is news. If you sign up for the RSS feed you'll get the update automatically.

Wishing you all a very bright HAPPY NEW YEAR.

With lots of love,

Emma & Gregorio. xxx

PS somebody sent me a gorgeous blue table runner for Christmas, but there was no sender's name on the package. Thank you.

Thursday, December 24, 2009

Let it snow, let it snow, let it snow!



Just in case you missed it, Washington DC received several feet of snow last week-end. I know many of you have seen the white stuff this past week but this was a pretty epic DC storm. It began Friday night and didn't stop till Saturday evening. We had tickets to the ICE Winter wonderland on Saturday morning at the National Harbor. They said they would honor the tickets whatever time we got there. We were only about an hour later than our ticket time but it was quite an adventure to get there. Getting down our street was only the start, none of the roads were clear, not even the major roads and it was decidedly a blizzard out there. This is Mass Ave at 10 am on Saturday morning and the Washington Monument later in the afternoon.



Those that were out were mainly in 4WD, we were in the mommie mobile! A 40 minute journey took us nearly two hours. At one point, we were going down an unploughed hill and I had images of being stuck there till Monday and beyond. My first thought - I only have enough medication for Isabella till this evening. But, we were fully kitted in our ski gear, we'll just walk somewhere and get home somehow. My three maps told me there was no right turn through to our destination at the bottom of the hill we were going down, contrary to what Gregorio's TomTom indicated.....You can imagine the initial exchange between G and I! Thankfully Gregorio and I do make a good team. Peter, you taught me how to read a map well and with absolute silence in the car Gregorio is a damn good driver even under such treacherous conditions. We managed to get to the bottom and have enough momentum to get up the next street to the left and crawled by sheer will power to the top of the hill and returned to a flat road, albeit still covered in snow. We eventually made it to National Harbor and found a covered car park - we didn't have the shovel with us and we didn't fancy digging ourselves out with a frisbee. Anyway we finally made it to ICE, needless to say we had the place to ourselves and it was spectacular. It was 9 F inside, they gave us warm coats which we put on top of our ski gear and we felt just right! The ice penguins in the igloo, the ice castle, the slides, the ice nativity scene. It was really beautiful. The drive home was less adventurous but we were pleased to be back inside.

















On Sunday, Gregorio, whom as many of you know, does not willingly get out of bed on a Sunday morning, was up shoveling snow off the driveway at 8am. Shortly before 10 we were on our way to the ski slopes. It was fantastic snow and crystal clear blue skies with sunshine. The perfect day to start a new ski season. Girls loved it too and we bumped into some school friends who had not managed to fly back to Spain due to the weather. That evening we went to our friend's annual carols and curry party. It is always such a lovely occasion and a great way to start Christmas. During the party Gregorio recieved some good news: Mr Obama had kindly closed the federal government on Monday due to the weather and so Gregorio's office was closed also. Monday we were on the slopes by 10:30! Two day's skiing and snow shoveling we were happy but exhausted. Here we are moosing around while taking a break from the slopes.






I had hoped to fit in another visit to the slopes this week but last minute Christmas shopping and baking has taken over. There was a momentary panic that Santa (courtesy of amazon.com) might not deliver on time due to the weather but all has arrived. Isabella decided she wanted to bake cheesey scones for all the staff in the oncology clinic. They were then all packaged up into individual gift bags with personalized cards for everyone. She put a lot of love and care into each one. Very sweet. We had quite a production line going in the kitchen on Tuesday morning. Isabella made about 50 scones, I was on the other side of the kitchen baking mince pies and Matilde found her corner and made her own concoction "I need more baking powder, now more milk, hmmm now a bit of clementine juice" and so the ingredients were stirred in as she thought of something else that needed to be added. The mixture was then covered and labeled "Matilde's reszepe" and put in the fridge. When asked what she was going to do with it, she replied "I'm not sure, but right now I am waiting for the butter to rise!!" Unique. 


We had a very quick and easy visit to Children's this morning. Accessed without trouble, handed out her gifts, blood counts still quite good and chemo administered. A number of the staff were not in today and many won't be there next week when we conclude this chapter. Those that we did see gave Isabella big hugs and congratulations for having made it through the year. ONE more round on New Year's Eve.


Meanwhile it is a lovely sunny crisp day in DC and there is still plenty of snow around to create the magical white Christmas. Gregorio has prepared this evening's menu: baby octopus soup, linguine alle vongole and swordfish steaks and a selection of festive sorbets. And tomorrow we are lunching with friends. Marvellous. Now it is time to read our special messages that have arrived by email from Santa and then we can even track his deliveries on the internet. Yes we are going full out with the whole Santa story. Having seen the REAL Santa at the North Pole there is no shadow of a doubt that he exists!


We enjoyed a lovely candlelit carol concert at the National Cathedral last night and this evening, before tucking into our fishy feast we'll head down to see the live nativity scene at a church up the street.


Many of you are already tucking into Christmas and unwrapping presents as I hit publish. 


Wishing you all a VERY Merry Christmas from Washington DC.


More next week.


Lots of love,
Emma & Gregorio xxx
















Wednesday, December 16, 2009

North Pole

Believe it or not we went to the North Pole last Saturday. We only told the girls just before bedtime on Friday that we were going somewhere happy up north. Matilde's face was a picture, her eyes popped out and her jaw dropped "not the North Pole?!" Needless to say they immediately ran off to pack a bag of essentials. We had to check in at Dulles airport at 7 am on Saturday. We proceeded through security with our boarding passes to gate D7. While we waited, there were elves to entertain and paint faces. We even had an overbooking situation to add to the authentic airport experience. On board the crew kept up the jolly theme from the decor to the safety demo said to the poem ''Twas the night before Christmas'. Thankfully we had special North Pole Jet fuel on board and were able to make the journey in 25 mins [yes we really were flying!] Captain Bob kindly kept the radio on the loud speaker so that we could follow the journey. "This is Captain Bob, do we have clearance to land?" "Ho ho ho, yes you do" came back the reply "follow the red nose in to the gate!" We emerged [at Gate D29] and were greeted to a chorus of fairies, jugglers, elves, the works. We even found Papa', who had managed to get another flight and meet us there directly! The highlight of course, was sitting on Father Christmas' knee and receiving a bagful of goodies. A truly magical morning for all. The fact that we then walked out of the shaded area of D29 and took the people mover back to the main terminal didn't seem to enter their minds.

United Airlines has been offering these flights of fantasy for many years at a number of locations around the US and other parts of the world. My opinion of United has changed. They provided a very happy day for over 200 people.
Who were the lucky ones? Sick children and their families from the Washington DC area. This is just another example of the happiness many charitable organisations bring to children with cancer. Thank you to all of you who donate
or vounteer for one of these supportive organisations. A child's smile wipes away all the crap they have to endure.

Nurse Kathy and Debbie accessed the port very quickly this morning. They seemed to have discovered the magic position. Blood counts still pretty high, full dose of carbo and half of vincristine administered. Record breaking visit in and out in just four hours. So Isabella is already back at school, wearing her latest gift from the hospital - a hat that reads "Cancer Fears Me!" Of course she believes in the sentiment but she did also see her fellow patient, 12 year old Michael last week and he was wearing one!

Highlights to look forward to this coming week include a visit to ICE at the National Harbor. Ice sculptors from around the world have created a winter wonderland with ice slides, lights, music and more. A chilly 9 F inside so we'll be wrapping up warm. Then there's the Garden of Lights, some mince pie baking and the making of glitter creations and maybe a Carol service at the National Cathedral to balance the meaning of Christmas. In case you hadn't realized we LOVE this time of year with all the fun activities there are to do in the DC area, well who doesn't?

A big snow storm is forecast on Saturday so we are pulling out the thermals and waxing down the skis. We might hit the slopes on Sunday and escape the Christmas shopping maddness.

We are still behaving for the Elf on the Shelf.

Just in case you've lost track there are just TWO sessions to go. More next week.

Happy Christmas,

Lots of love
Emma & Gregorio xxx

Wednesday, December 9, 2009

It's December, we are in the final cycle!

We have had a good couple of weeks, full of performances. The school pantomine of Cinders was wonderful. Watching the enjoyment on the kids' faces was magical. Everyone in Years 3 to 6 had a role, no matter how big or small, they all felt equally as important. Isabella sang her heart out in the chorus with the other street urchins and she played that triangle and with gusto and in time! Matilde's pilgrim lunch was also a great success. Turns out Matilde loves pumpkin pie this year. This week the school concert featured the school choirs and some of the upper school kids rocking the night away on electric guitars and drums. Much enjoyment all round, particularly by the baldy on my left. And then yesterday Matilde was part of the Key Stage 1 holiday production about ballooning around the world. Much to Matilde's delight she was a Scottish dancer.

It is funny how we have two very different daughters. Isabella is the English looking one, but she is more fluent in Italian and enjoys all things Italian. Matilde, the darker one, is interested in all things British and is totally fascinated by Scotland at the moment. On Saturday morning, it was freezing (quite literally) and snow/rain were coming down thick and fast as we stood on the streets of Alexandria and watched the Scottish Christmas Parade. I have never seen so many kilts and bagpipes in one space. Matilde loved it. Saturday turned into a rather British day. In the afternoon I took the family to their first ever pantomine (aside from the production of Cinders a week earlier, about which I had been told "mummy, it is the story of Cinderella but it is different and funny!"). Matilde was called onto the stage and Mother Goose sang her a tune. "Oh yes she did!" Gregorio was screaming as loud as any of the kids "he's behind you"

Well here we are again at the hospital for the final cycle. Only drama so far is the lack of tech in the oncology pharmacy to make up the chemotherapy. As I write this I am already imagining a complicated afternoon logistically. Well gives me something to think about as we sit and wait.

Meanwhile Tommy the Elf arrived in our house yesterday evening. Elf sits on the shelf around the house and watches if you are good or bad and reports back to Santa. He flies away to Santa each night and you find him in a different location every morning. Totally magic. When I took him out of the box, Isabella says "Mati, be careful, don't touch him or you will break the magic!" This morning we are all running around to get ready and there is an almighty scream from Isabella in the sunroom, "so it is magic, because he is now in a different place." I sincerely hope that the magic lasts as long as possible. Matilde definitely believes but she is not taking any chances with Santa missing her requests, she has written about five letters to Santir (sic) so far. She is hoping to receive two dolls, so she wrote doll twice on the list and macup and pirfyoom (sound it out you'll get it!)
Isabella has more specifc requests. She's hoping for a Dior lipstick and a Mexican cookbook! We'll have more to report on the magic of Santa Claus next week....

3 rounds to go, December 17, 24 and 31. The MRI is scheduled for January 27th, 2010 and we will be talking to surgeons this month to schedule a date to take that pesky port out after the MRI. 2010 here we come!

Lots of love,
Emma & Gregorio xxx

Thursday, November 19, 2009

Just one cycle to go.

We finished up cycle 7 today. Thankfully the blood counts bounced right back up again and Isabella was able to get a full dose of Carboplatin. We are still on track to end this stage of the journey in 2009. And she will hopefully finally get the H1N1 vaccination tomorrow.

Matilde has been under the weather with strep throat this week. We were at the pediatrician's even before there were any real signs of infection and straight onto antibiotics. Sadly she missed her ballet performance on Tuesday but I think we were more upset than she. A new hairband, a box of pringles and some brownies and you can focus on the important things in life! This week she announced that she wants to be a Children's author and illustrator. Given the number of books she is already producing about Princess Matilde it doesn't surprise us.

We now have two weeks without chemo and then enter the final cycle on December 10th. Next Thursday we will be celebrating Thanksgiving. A year ago Gregorio produced our wall of thanks to all of you who have supported us. By now that wall is made of reinforced steel and reaches a mile high. It would be impossible for us to thank you all personally but we are truly grateful for friends and family like you.

Recently I was talking to the lovely social worker here in the hospital. We don't think Isabella will remember this year negatively. Granted it is hard for any of us to get out of bed on Thursdays and the ease with which her roaming port is accessed, has come to define the day; but there have also been some very happy moments along the way. We have had lots of fun and laughter as a family, we have appreciated the simple things in life such as a Sunday walk through the forest with the autumn leaves crunching under foot, cooking together, watching a movie together or enjoying breakfast with friends at our local cafe and much much more. We have also had some wonderful travel experiences: sun and warmth in Florida in January, skiing in Pennsylvania in February, the beauty, space and tranquility of Canada in August and the magical balloon ride in New Mexico in October. Isabella has proved to be a very strong and courageous girl through it all. She is incredibly curious about the medical world and how everything functions. She loves school and learning about the world around her, she loves to get involved in many things. She is a confident and happy 7 year old who has got on with life despite the side effects of chemotheraphy. This week a young waitress in our local cafe said to Isabella "I know what it is like to have to wear bandanas, but you wear them well, YOU ROCK!" Isabella felt pretty cool and smiled.

Next week is a short week at school, Isabella will be performing in the school's production of Cinders and Mati is dressing up as a pilgrim for her Thanksgiving celebration.

We will be back in touch with more news in December. In the meantime we wish our friends here in the US a very Happy Thanksgiving. We'll probably still be eating turkey when we write again, given the size of turkey I have ordered!

Lots of love,
Emma & Gregorio. xxx

Thursday, November 12, 2009

Another busy week

We seemed to spend most of the week-end in the ER. Isabella had a fever and so a visit to Children's on Saturday and Sunday was in order. It had been some time since we'd had an ER visit. Thankfully accessing the port was done by one of the in-patient oncology nurses and without any trouble. Not sure whether we feared that more or less than the possibility of worse infection by being in the ER.

This week our pediatricians thankfully tracked down a dose of H1N1 vaccination for Isabella but unfortunately with the cold and cough that developped after her fever at the week-end she still cannot receive the shot yet. It may be too late as there are already some cases of H1N1 in the class. Che sera sera....

Today her blood counts are low, most likely as a result of the fever/cold she has been dealing with. She is getting half dose today of both carboplatin and vincristine. Finger's crossed we can keep her healthy and her counts can bounce up a little by next Thursday for the final session of
round 7. The doctors know we are focused on getting that final session of cycle 8 completed on December 31st and then we will wake up in a NEW YEAR.

Last night we had a very successful fundraising jewellery party at our house. Thanks to all those ladies who came and bought and are still buying. 50% of the profits are going to the Brain
Tumor Institute here at the hospital. Isabella proudly told the doctors that we had raised $500 so far. On Friday at the school Fall Festival the student council (which Isabella is a part of) has decided that this year's charity will also be the Brain Tumor Institute. We are honoured that this
valuable body of experts carrying out important brain tumor research has been selected. It feels good to give something back to those who have helped us at Children's and to future sufferers.

It has been a slow morning here at Children's on this rainy day in DC. Two of the clowns came by (with the third in the background, out of costume, just observing). We hardly recognised Dr JJ in real clothes and neither Isabella nor I could talk to him without laughing.

The coming week promises spectacular performances. We will be allowed into Matilde's ballet class to observe all she has learnt this term. She is very excited. Isabella meanwhile, is getting ready for her school musical production during the Thanksgiving week.

Just 5 sessions to go. The end is nigh.

Lots of love,
Emma and Gregorio. xxx

Thursday, November 5, 2009

6 to go...

Thursday again. The only drama today was when Gregorio joined in the comedy act with the clowns in the art room. It was pretty entertaining. Blood counts still good, chemo administered, just 6 sessions to go.

Halloween was rather wet but full of treats. On Sunday, having enjoyed an extra hour in bed, we went on a lovely walk through the forest.

Tuesday we spent three hours lining up at a mass H1N1 vaccination clinic at a local high school. Having gone round the block, up and down every corridor in the building we finally came to the vaccination room. The organization was pretty impressive, it makes you think that this whole exercise is part of a big emergency preparation plan. Gregorio was skeptical whether there was actually anything in the syringe. He's changed his mind since, given his sore arm. When it was finally our turn, our brave little patient sits down, pulls up her sleeve and says "this arm OK?" She was incredibly disappointed when they said they couldn't administer to a chemotherapy patient. I am not sure who's screams were louder, Matilde's or mine? Apparently their guidelines would not allow her to receive the shot without a letter from her oncologist, my screams of "this is ridiculous, she is a priority patient" were to no avail. Matilde, Gregorio and I were poked and now we are trying to track down the shot for Isabella, without having to go through the whole queuing fiasco again. We will have to do it all over again anyway for Matilde who has to have a second shot (sshh, but please don't tell her that!)

Today Matilde is 'celebrating' Bonfire Night at school. She might be half British but she had no idea what it was. She came home yesterday full of excitement telling us the story about Guy Fawkes. We called Grandpa Ross too and told him how Mr Fawkes was caught red handed. I don't think she knew what that meant but it was terrible cute. The most exciting thing for Matilde was the fact that she could take some party clothes into school for the event. And you have to love the mix of cultures we live in. Matilde took her halloween outfit (it was changed at the last minute, despite me having adjusted the original witch's costume to fit) a flamenco dancer.

Lots of love,
Emma & Gregorio. xxx

Thursday, October 29, 2009

Half term escapades

Since the last update, we have been busy. We had a lovely time with Penny and family from Cornwall. Mati and Rosie got on like a house on fire, they last met when Mati was 2 months old! It would seem that 5 year old girls, wherever they are from, are very similar, evening
dancing shows to ABBA music seem to be popular!

Last Friday our dear friend and photographer, Emily kindly let the Impavido family into the studio. Boy did we have a laugh posing in front of her camera, the girls dressed up and
brought along two umbrellas. Emily captured some very happy moments. Here are just some of the photos. If you fancy trying to capture you or your family on film take a look at her website. Emily definitely creates memorable images,
she is available both sides of the Atlantic www.emilypinnaphotography.com



On Tuesday Isabella had a follow-up MRI of the spine, number 7 but who's counting?! On October 13th they had seen some thickening of the lining around the spine, they did not think it was tumor but wanted to take another look. This week they found nothing, so the October 13th MRI really was just good news - the main tumor has shrunk. Today we are here again for the start of cycle 7. We had 4 nurses ready to access her, straight in, blood counts high and chemo is being administered as I write. Phew, one down, 7 chemo sessions to go....2010 here we come.

The flu scare seems to be reaching new heights here in DC. No siblings are now allowed in the oncology clinic. They have made an exception today for Matilde, as we didn't know. However, we have not been into the art room. In a normal year we wouldn't worry, but it seems impossible to get
hold of the seasonal flu shot for the girls and we are waiting to get the H1N1 vaccine. After much debate we have decided to just get the shots and hopefully forget about the issue and get through the next couple of months without any added complications.

This week is the half term break. Between hospital visits we have been to the pumpkin patch (finally a good day without rain) and have been getting ready for Halloween. No doubt there will be photos of the 3 witches and clown available next week!

Lots of love,
Emma & Gregorio. xxx


Wednesday, October 7, 2009

Up up and away....

Cycle 6 completed, a big sigh of relief all round.

Today? Wednesday. Yes chemo today, as we are off to New Mexico this evening. The highlight of the week-end will be a balloon flight at sunrise on Friday morning at the Albuquerque Hot air balloon festival! Fingers crossed we have no medical dramas. Who knows whether some of us will suffer from vertigo. Gregorio has bought periscopes so that the girls can see out of the 4 ' high basket. I am sure there will be plenty of photos to share next week.

Tuesday we have another MRI. So more news then.

Lots of love,
Emma & Gregorio xxx

Wednesday, September 30, 2009

New Status

The wonderful thing about children is their ability to move on. Within minutes of last week's trauma Isabella was ready for Italian classes. Children also forgive and forget very quickly. She made a special request for one of the nurses this morning who had failed to access her port last week. He is a lovely nurse and does a great job each week, but was a little anxious when he arrived in the room today. There were several other nurses present ready to do the port access dance - no need, straight in. What a relief. ANC even higher this week, full dose of chemo administered and we were out of the clinic within record breaking time and back at school in time for lunch. Three down and one to go for this cycle.

The best news this week is our new status, Isabella and Matilde have become cousins. Gregorio stopped in London over the week-end and had a stern talking to Florence's belly, unfortunately he didn't get to meet his nephew. However, we are all extremely happy at the safe arrival of Björn Elio on Monday, a whopping 9 lbs and 23 inches long. The family are all settling in at home today and we look forward to meeting him soon.

Lots of Love
Auntie Emma and Zio Gregorio xxx



Thursday, September 24, 2009

How many pokes?

As we are taking the lift down to the car park at Children's this afternoon, Isabella says "you had better write about this on the blog!" I am not sure about Isabella, but I would rank today as being very high on the list of worse days since this journey began. Isabella received more needles than I can imagine today. As she retold the story, the number of pokes increased but I would definitely agree it was double digits. After nearly 6 hours at the hospital, numerous attempts by 3 nurses, several x-rays and finally a handful of attempts by the surgeon, we saw blood coming out of her port. Isabella took the words right out of my mouth "I could hug you and kiss you!" This came right after the most blood curling screams and look of fear on her little face, but she was right, what a relief.

Behind my (I hope) tough exterior I was already imagining another surgery to remove this port and fit a new one. Gregorio was in touch by phone and email as the day progressed. There were shades of almost a year ago (yesterday) when I had called him in Cyprus to say Isabella had a brain tumor. Then, he had been left speechless and only after several minutes finally managed to say "I'm coming home tonight"; today, he didn't say it, but I know he was already envisaging jumping on the next flight out of Nairobi. Thankfully today's drama did not lead to the operating theatre and all was resolved.

For some reason Isabella's port is a little roamer and if the person accessing her port doesn't get exactly the right spot at the right angle then it doesn't work. I asked the nurses who would get the short straw next week to access Isabella? They smiled. Right now we'll just relax, happy that today is over.

Maybe you are wondering why they have to get a blood return from the port? They need to make sure the line is not broken or that there is no blood clot in the line so that anything they administer to her through her port goes into her vein. Apparently the vincristine is extremely powerful, you should see the care they take to make sure not a drop touches any skin, it would burn you.

There was some good news though, her ANC has skyrocketed to over 1000 and so we were able to get back to the full dose of both vincristine and carboplatin. It was truly a long day but we can now tick off round 2 of cycle 6.

Love,
Emma & Gregorio. xxx

Thursday, September 17, 2009

Third time lucky?

OK so we have sort of started cycle 6. Sort of? Well her ANC was even lower this week which we will attribute to either a cold or possibly the gleevec medication she takes daily. Either way the accumulative effect of chemotherapy is beginning to take its toll on Isabella. She has been off chemo for a month and we were desperate to start again. It was decided to give her vincristine only and not the carboplatin. The vincristine has a number of side effects which we have more or less under control but the lowering of blood counts does not tend to be one of them.

Her ANC was 450, which for those of you in the know, or remember from our spring antics means that any fever and we will be enjoying the overnight accommodation facilities at Children's. I was talking to one of the mothers in the clinic this morning about how we would love to hermetically seal our kids in a bubble until the end of treatment but it is not realistic, let alone fair. It seems the germs have been flying around schools earlier in the season than usual.

The doctors are strongly recommending flu shots and swine flu shots for the whole family. All the hospital staff were getting their flu shots today. When St Debby saw how anxious Isabella was at the idea of getting a shot (not today anyway) Debby took Isabella off with her so she could hold her hand.

Both girls were up at 6:30 this morning and flying off the wall. Normally Matilde has to be dragged out of bed at 7:30 on a school morning (the week-ends are different...) The reason: Matilde was going to Alex's for breakfast and then off to school. "COME ON MUMMY, we have to go, otherwise they will have finished all the pancakes before I get there!!"

Finger's crossed our blood counts rise over the week and we remain clear of infection.

Wet and autumnal here today.

Lots of love,
Emma (& Gregorio from Kenya) xxx

Thursday, September 10, 2009

Cycle 6 remains elusive.

Isabella's blood counts are still too low to start a new cycle of chemo - ANC under 1000. So we slip another week (which means that we are now due to finish one week AFTER Christmas...) We'd be lying if we didn't admit we are feeling a little deflated, but on the up side it does mean another week without chemo. I guess returning to school was a shock to the system, not to mention Matilde getting strep throat and an ear infection. A great start to the new school year! Let's hope we get through the next few months without too many illnesses and viruses.

It is a funny feeling returning to the hospital every week. It is such a routine now and they truly make us feel like special friends. Gregorio has been to every appointment this past year, apart from a couple over the summer. The security guard greeted him with a smile and said "hello sir, how are you, I was wondering if you were coming today?" and proceeded to hand him his name badge without asking for his ID. In the clinic waiting room the nurse who checks the children's vitals announces "Dr Impavido please!" and on the board, they had written Dr Impavido. Isabella was beaming as she walked out of the waiting room.


The grandparents have left and Gregorio leaves tomorrow for a mission to Kenya, his first trip in a year. Previously, Gregorio traveled every other month for several weeks at a time so we should be thankful for something (the economic crisis? Isabella's treatment?) as Gregorio has enjoyed every month of the year in Washington - a first in over 10 years.


The house will feel pretty empty but there is plenty to keep us busy. The first week or so back at school has been fun and has successfully worn the girls out each day :). Matilde is loving ballet lessons and Isabella has started piano again. She tells us she is also in the school choir "it's much better than lunch break!" Fear not, I think she does have time to eat first. We have also started swimming lessons again, tennis on Saturday for us all and Italian classes next week.


Tomorrow I am joining a whole crew of travel industry professionals as we roll up our sleeves and spruce up the monuments and surrounding parkland on the National Mall. Not an insignificant date to say, "Tourism Cares".

This week-end is also the anniversary of the passing of our dear friend and neighbor. He and his family have been a great inspiration to us this past year. God bless you, David.


More next week when we hope to finally begin cycle number 6.


Lots of love,
Emma and Gregorio. xxx

Tuesday, September 1, 2009

Canada was wonderful.



We are back from a most wonderfully relaxing holiday in Canada. Just what the doctor ordered all round. It was a true escape, apart from the lack of internet connection, it was so beautifully green and open. Refreshing air, delicious food and majestic scenery from the miles of lakes and trees to the magnificent St Lawrence River at all times of day. And what surprised us, was how totally French everything was, albeit with an accent that was hard to understand at times. We kayaked and canoed on the idyllic setting of Lac Gagnon with our lovely Canadian friends and we went walking, picnicing and whale watching on the Cote Charlevoix, north of Quebec City. We were staying near Baie St Paul where the Cirque de Soleil began 25 years ago, and were treated to some very entertaining street acts. We didn't see any moose, though I ate caribou, Gregorio claims he saw a black bear and we saw many many different types of whales. If you are curious and have the stamina, take a look at some of our pictures . You'll need a little imagination to spot the belugas and humpback whales.

http://www.shutterfly.com/lightbox/view.sfly?fid=14b7bb86b161b31d5b2f2841c4d4a52e


Thankfully no drama with Isabella's condition though we did have two hospital visits for the two female members with a 7 in their age. A relatively quick x-ray revealed no broken bones and we continued our 2,400 mile road trip.

Now back to reality. The girls were thrilled to be back at school on Monday, catching up with old friends and meeting new teachers. Today we were at Children's for the start of round 6 - we thought. However, her blood counts were a little low, with hindsight her motion sickness during the return journey was probably a little virus. No problem, she got to school earlier than anticipated and we will just shuffle things down by a week and return next week.

The next MRI is scheduled for October 13.

When we left Quebec on Friday morning it was a crisp autumnal morning with beautiful sunshine and 9 C, when we arrived in DC it was a muggy 32C. This week the humidity has gone and the weather is absolutely gorgeous. We hope it will last for the nonni's last few days and the upcoming long week-end.

Love,
Emma & Gregorio. xxx


Thursday, August 13, 2009

Canada here we come!

Cycle 5 completed this morning. We had some anxiety and drama with accessing the port but St Debby came to the rescue. The lovely nurse who missed with the first attempt (we are talking about a rather large needle that has to go through the skin on her chest and into the small port) felt terrible. Once accessed and calm, Isabella says "don't worry, you were very close!"

The clowns were there to brighten our morning. Matilde's face was a picture of total disbelief as one of the clowns pulled the missing red scarf from nonna's sleeve. Matilde gave nonna an enormous hug and she is now forever 'la nonna magica!' Even wise Isabella was a little perplexed by the trick.

Well we are packed and ready to head north to the cool open space of Canada. The weather has been oppressively hot in DC this past week. We have whittled down the bags of toys and hopefully there aren't too many superfluous dresses in the bag.

The final test, before leaving, was a blocked kitchen sink this afternoon. Thankfully our dear contractors were working opposite and fixed the problem very quickly....I don't think I shall tell Gregorio till we are safely on the road tomorrow morning! That's assuming he manages to leave the office tonight. All the usual drama prior to going on a holiday.

We'll be back at the end of August, just in time to start school. Cycle six begins on September 3rd, so more updates then.

Enjoy the rest of the summer,

Emma and Gregorio. xxx
PS Happy Birthday Caroline!

Thursday, August 6, 2009

Another birthday

It has been a week of birthday celebrations for me. Gregorio took me out for a surprise evening with friends on Saturday evening. He would not give anything away despite my endless questioning. It turned out to be Paul McCartney in concert. At 67 he rocked the night away, ending with all the classics and fireworks. Gregorio, fireworks again on my birthday, grande, cosa puoi fare l'anno prossimo?! On Sunday we had a lovely BBQ with some of our dear DC friends, thankfully the skies cleared as the evening began. On my actual birthday on Tuesday, I had a very relaxing day with the family at the National Gallery, pool and dinner out. Thank you for all the birthday wishes.

I share my birthday with the person who coined the phrase "Yes we can!" And, as you know it has been very much a year in which we strive to believe we can beat the weed in Isabella's head. Today at the hospital, we said our official good-byes to her oncologist. He is sadly moving onto another hospital, he summed up how far we had come and what to expect in the coming months and years. He is cautiously optimistic for the future. We will complete cycle 8 at the end of the year and will then be monitoring the weeds with monthly visits to the clinic and MRI's every 3 months for the first two years.

And when the night is cloudy, there is still a light, that shines on me,
shine until tomorrow, let it be.


Three chemo sessions down, one to go. We are almost counting the hours to our road trip north next Friday.

Love,
Emma & Gregorio xxx

Thursday, July 30, 2009

Two down, two to go

Another round of chemo today, only half dose of vincristine. Otherwise a fairly routine Thursday. Now we are relaxing at home in front of the TV.

We are another week closer to a break and a much needed vacation to Canada. I have finally booked all parts of the holiday and the girls have packed their bags - 3 polly pocket shoes in one bag along with sticky tape, hair bands, headless barbies, numerous plastic bead necklaces, lip gloss and notebooks, there are several of these types of bags, containing all the essentials. I can only imagine Gregorio's reaction when it comes to packing the car up!

Its hot and humid in DC, we are just hoping the weather holds off for a BBQ at the week-end.

Hope you are all having a good summer,

Emma & Gregorio. xxx

Thursday, July 23, 2009

Over the hump

Today we were at Children's for the start of round 5, it's downhill to Christmas (finger's crossed there are no slips in the treatment dates).

Matilde came to the hospital today. Isabella whispers in her ear, just before they started the procedure "don't worry, I might cry, but I promise I won't scream". It was a very sweet moment, Isabella wanted to be the brave strong elder sister and Matilde was there to help but Isabella knew she wouldn't stick around if there were too many screams. Matilde has not been to the Thursday morning clinic many times and today she got to enjoy the routine including an entertaining visit from the clowns. Isabella was a little more agitated today, as she had had a couple of weeks off, but all things considered, it went pretty smoothly.

Her neurologist repeated the MRI results that everything was stable and that this was good news and very standard at this stage of treatment. Our aim now is to keep the tumors at bay. We also fitted in a visit to the eye doctor. They need to do a few more tests next week but so far she has 20/20 vision. As if we had any doubt, but it is one of the main things we have to watch, given the location of the main tumor.

In the three weeks we have been off chemo Isabella has grown in height, gained weight and all of a sudden none of her shoes fit. She is looking well and happy.

Not much else to report this week other than we are enjoying having the Italian grandparents here. We have been splashing in the pool in between the rain showers and fixing leaking kitchen taps and aging cars.

We are counting the weeks to our vacation in Canada - hopefully starting on August 14th, at the end of cycle 5.

Lots of love,
Emma & Gregorio. xxx

Tuesday, July 14, 2009

Stability is good

Isabella had her MRI on Monday morning (slight mix up in the date with the hospital). Her oncologist came by as Isabella was waking up from the sedation. Good news: all stable no growth.

We will meet with the oncologist and the neurologist on Thursday July 23 when she starts cycle 5 of chemo. We'll have a chance then to review the actual scans and get more details. In the meantime we are happy to know the chemo is keeping the tumors stable.

We've been having fun splashing about in the pool with the British grandparents who sadly leave on Wednesday but on Thursday the Italian summer camp begins with the arrival of i nonni da Roma.

Hope you are all enjoying summer, it's been lovely here in DC.

Love,
Emma and Gregorio xxx

Thursday, July 2, 2009

Dr Impavido



On July 1st the new doctors start at Children's Hospital, let us present Dr Impavido, her second day on the job! Matilde had the great idea of giving her a doctor's jacket and bag for her birthday and today Dr Impavido has been walking proudly around the hospital. She's been taken into the oncology office to meet all the staff and given various badges and her very own stethoscope. She is very proud.

July 1st was a day of anniversaries for Gregorio and I - we've been together for 15 years and it was also the day we brought Isabella home from the hospital 7 years ago. It is hard to believe all the adventures we have had since that emotion filled chaotic day. We had a lovely family day with Peter and Janie on Sunday, Isabella's actual birthday when she went for the world record in how many lamb chops anyone can consume in one sitting. Then on Monday we had a fun party splashing at the pool.

This last week at school seems to have been one long party for all. And Isabella was given the primary award for French. Our little linguist! Today is the last day of school and tomorrow is a holiday so a long relaxing week-end all round. Much needed.



Today Isabella is receiving carboplatin only, this completes cycle 4, we are half way there! We now have a couple of weeks off from treatment which we are all looking forward to. On Sunday July 12th she will be having another MRI of the brain for an update on what progress the treatment is having. We should have the results sometime on the Monday 13th and will update you then.

In the meantime, enjoy the summer and Happy 4th July.
Love,
Emma & Gregorio.xxx

Thursday, June 25, 2009

One more week till the end of term and another chemo break

Another week and another round of chemo. No dramas last week and fingers crossed we'll get to the end of term on July 2nd and complete cycle four that day also.

As is the 'norm' Isabella asked to be taken back to school as soon as we were finished at Children's today. Normally there is a teacher in the reception area at school only too willing to accompany Isabella up to her classroom or down to the playground. Today nobody was hanging around so I strolled down there with her. Her teacher gave her a warm welcome and looked at me and said "amazing, I don't know how she does it?" And neither do we, but then one of the girls spied Isabella and shouted "ISABELLA'S HERE" and several of the girls came running. It brought a smile to Isabella's face, she was back where she wanted to be once more. Thank you.

Peter and Janie arrive from London on Saturday in time for the birthday celebrations. Isabella turns 7 on Sunday. Matilde wants to give Isabella a 'doctor kit' so they can play doctors and we've found the game of Operation to add to the fun. That was a classic in our youth, but no doubt Isabella will have comments on how realistic or not it is!

The heat and humidity seem to have returned to DC, not to mention the mosquitoes, but we're keeping cool in our new basement watching Wimbledon when we are not splashing in the pool.

Lots of love
Emma & Gregorio. xxx

Thursday, June 18, 2009

Still here...

Yes we are still here, despite our constant yearning to disappear to a desert island. In fact Gregorio and I dream about it often. In former times Gregorio would have dreamed about an island with all his essentials - a pizza oven, or a pasta maker... but now a completely desert island sounds wonderful. But we can't really escape at the moment, so we try and carve out some relaxing times where we can. Last Friday we had imagined simply sitting in the garden after the kids had gone to bed, looking at the hydrangeas and sipping a glass of wine. Sadly for all concerned, the venue turned out to be the ER at Children's Hospital.

After a good day at school on Friday, Isabella developed a fever of 38.9 or 102. Fever in a post-operative patient and one with a central line is not a good sign. So we flew to Children's. It took three oncology nurses to access her port. It was an anxious 6 hours, she was swollen, tender and tired from the surgery but finally they did succeed and managed to draw blood and antibiotics were administered. Matilde and I were there till 10:30 pm, she thought it was a great evening, she got to eat in the cafeteria and quite a dinner she had - pizza, fried chicken, mac and cheese and crisps!

By 1 am Isabella, Gregorio and I were finally sitting on our bed at home (yes thankfully her blood counts were high and we were not admitted). Isabella was laughing and relieved to have the ordeal behind her, I was sipping camomile tea to try and relax while Gregorio opted for a more effective whisky!

On Saturday Isabella was a happy girl once more and we all enjoyed the school picnic. Today we are here in the oncology department again. They have decided to give only a half dose of vincristine this week but otherwise her counts are good and we move forward another week.

Let's hope we survive the last two weeks of school and chemo without any further drama and then we'll have another break. The next MRI is scheduled for July 12th. Meanwhile, it may not be a desert island but we will dream of our escape north of the border, to Canada planned for the August break.

Until then we'll make do with getting back to the pool this week-end.

Lots of love,
Emma & Gregorio. xxx

Thursday, June 11, 2009

Surgery number 4, cycle 4

Isabella was on the operating table again this morning, the fourth time since this journey began. A new port-a-cath was successfully inserted. We asked for it to be done on the same side, so there would be only one scar, but do parents ever get it right, she was expecting it on the other side and has just told the nurse that now she's not symmetrical!

As always she is a complete trooper. She went to bed calmly last night. Having got dressed this morning, she waits for us to be ready and doesn't even ask for anything to eat or drink. Once at the hospital she is happy passing the time playing scopetta with Gregorio or watching the TV and then once we are taken back to pre-op she knows the routines and climbs onto the bed and drifts off into a slumber without any anxiety.

We are now upstairs in the oncology department starting cycle number 4. While her chemotherapy is being administered, the lovely social worker is helping Isabella with her necklace that she adds beads to each week, representing all the things she has been through in her treatment. This is a regular interlude on a Thursday that she looks forward to.

Meanwhile Matilde will have had another fun day at school. Yesterday as we were trying to get her ready and out the house, she's shouts from the bedroom "just wait, I'm not hurriable!" Oh she is funny, and then this morning's comment was touching. "do you know who is really special? Well I will tell you, its Bella because she has to do all these ports, all this medicine and hospital stuff". Sisters, they may fight but they do adore each other.

After a very wet May, June seems to be heading the same way. The forecast for the next week looks full of thunderstorms. Given that we can't swim for a week because of the surgery we are not too upset but hope that good pool weather will return by next week-end.

Another three weeks and we will be half way there.

Love,
Emma & Gregorio. xxx

Monday, June 1, 2009

Back to normal....

Time ran away and I forgot to update you on the news. Isabella did have surgery on Friday 22nd May to remove the broken port. Poor thing had 7 pokes in about 24 hours what with injections, IVs and attempts to draw blood from the broken port.

Given that she had a fever and was neutropenic they were not able to insert a new port. We are currently awaiting a date when the surgeon and the operating theater (OR) are available. We are hoping to push the date off for as long as possible as Isabella is now on a break from chemo. They decided to simply omit the last round of the cycle.

Isabella came out of hospital eventually on Saturday 23rd (it took them 3 hours to get all the paperwork in order and the girls were nearly tearing the place down). We were home in time to welcome Simon and Florence whom Gregorio had collected from the airport and start the Angelina Ballerina Twirling Butterfly party. A success and great time was had by all 5 year olds thanks to those who helped out with the fun.

We had a fun week with Simon and Florence during our half term break despite the rain and more rain. And finally on Saturday we were able to jump in the pool and officially declare the beginning of summer!

Isabella is due to start cycle number 4 on June 11. At the end of which we will be half way there. We are getting there.

Love,
Emma and Gregorio.xxx

Thursday, May 21, 2009

5 years for Mati, 10 for BSW and triple whammy for Bella



Matilde hit the ripe old age of 5 and she has celebrated in style today at school. She trotted off with donuts to share with her class, including her friend Marina - born on the same day in the same hospital!!



At school the much anticipated 10th anniversary celebrations took place. There were various activities including the almost simultaneous release of nearly 500 balloons into the air. The singing of Celebration and Happy Birthday by Key Stage One was very cool. Well done to all.

Isabella and Gregorio have just watched the video of the singing in their hospital suite where they have been all afternoon. Yep this morning's visit revealed a triple whammy - fever, neutropenic and her central line is not working. After numerous attempts to draw blood an x-ray with dye revealed a leaking line. So antibiotics for the virus, two nights as an in-patient for the neutropenia and we're in discussions with surgeon about the timing to replace the line. ...it could be as early as tomorrow, Friday.....




Not exactly how we envisaged Mati's birthday. She has been a trooper I guess all the sugar during the day helped and now she, Bella and Gregorio are watching a movie while eating a packet of crisps. What more could she want?!

Bella does seem better than this morning and will hopefully be home on Saturday. Obviously no chemo today and they have decided to ommit this round and so once she recovers from this virus she is fighting and the surgery to insert a new central line she'll be able to enjoy 3 weeks without chemo.



Gregorio has opted for the hospital sofa tonight, for which I am extremely grateful. Thankfully we have a long weekend ahead of us, and the girls have the whole week off from school.



Love
Emma and Gregorio xxx

Friday, May 15, 2009

Egg and spoon racers


End of another week full of activities. On Sunday Gregorio and the girls spoilt me with adorable mother's day cards and a cup of tea in bed (not quite breakfast but still gratefully received) followed by a lovely family walk in the park. This week Isabella has been busy with the end of year 'quizzes' (don't even get me started on the British educational need to test 7 year olds) and today both girls gave it their all in the school sports day. Verdict: the Impavido girls are good at balance and coordination - egg and spoon race was a doddle, but when it comes to pure running, it seems to be more about unique style rather than speed. Gregorio refused to join me in the parent's 3-legged race. As we now know, he's a serious runner!









Given all this excitement we are having treatment today, on Friday afternoon, so that Isabella could join in all the fun with her friends. The girls are in the art room now, eating cherries and brownies left over from the picnic while we wait for the chemo to be ready. The blood counts are a little low, but not drastically, probably related to the small cold she has. We are still proceeding with chemo. We're hoping there'll be no fever this week-end and all will proceed as 'normal'. We are at round 3 of cycle 3, one more week and then another break. Isabella does seem to be getting stronger and stronger with each week, even her hair is starting to grow back, despite being on treatment. This has pleased her greatly.

We'll take it easy this week-end and hopefully Isabella will be up to all the fun things going on, especially her first piano recital on Sunday. We have been practicing religiously and the stuffed toys, Matilde, Gregorio and I have been duly attending the practice rehearsals in the study.

And next week there seems to be even more going on what with the school's 10th anniversary celebrations and Matilde's 5th birthday. The girls have been learning a celebration song for the school festivities. Isabella insisted on looking something up on the computer, I was having difficulty understanding what she needed, and she certainly put me in my technological place "Oh mother, you don't understand anything about YouTube!" and proceeded to find what she was looking for.
And Gregorio is gearing Isabella up for her Italian end of year test. I think we'll be happy to reach half term at the end of the week. The parent's of Isabella and Matilde's future cousin are coming to stay. Matilde has all the baby stuff ready for it (it isn't due till September). But what we are really looking forward to is the pool opening at the end of next week. So, Mr Weatherman, summer can officially begin please, enough rain.
Love,

Emma & Gregorio. xxx





















Monday, May 4, 2009

We did it!



Despite the pouring rain, Gregorio and I ran 5K on Sunday morning in the Race for Hope fundraising event. This is us at the end of the race. Neither of us are runners and apart from one miserable attempt about a month ago, I don't think I have run since the Gosport Fun Run along Stokes Bay in 1982! Some of you will remember that.


As we crossed the start line on Pennsylvania Avenue at 9 am, the rain was beginning, Gregorio's knees started to rise and he was off and out of site in a flash. At that point I thought I am going to run this all the way. 5K is nothing for many of you but it was an achievement for both of us. It was a pretty good feeling on hearing "Emma from Washington, YOU DID IT!" I can begin to understand what it must be like to run a marathon - maybe that's next!!


The rain got heavier as we went round the course, which only added to the emotion of the morning. There were about 10,000 people participating in the run/walk and prior to setting off all those taking part who were brain cancer survivors paraded past.



We started the race with Federica and Maddalena, pictured here. Later we met up with Team Ecuador. There were also some other people who ran and walked the course, who we didn't find and a number of you who braved the wet weather to cheer us on. We are sorry we missed you but thank you very much for the support.




The kids completed their Fun Run in the pouring rain also and are now the proud wearers of their medals.



Most importantly we have raised a significant amount for the Children's Hospital Team. To date Team Impavido has raised a total of:


$4,860.


Thank you very much for your generosity.



And here's the final picture of the day with Ale and Gigi, without whose support before and after the event we would not have managed.




Emma and Gregorio. xxx


PS yes we are hobbling around today :)

Tuesday, April 28, 2009

Forza Impavido

We are overwhelmed by your support at us taking a Sunday morning jog! In case you missed the news, Gregorio and I are taking part in th 5K run to raise money for brain cancer research on Sunday May 3rd. A number of you are joining the run with us here in DC, many will be lining the route to cheer us on, others are doing their own run in others parts of the world. At 10 am there is also a Kids Fun run which the girls and some friends will participate in.


And your donations have been rolling in. Thank you. The power of the internet and the ability to reach you all so quickly. Just in case you haven't donated yet and you have a few spare dollars lying under your mattress, loosing value in this economy, consider this cause, your generosity will greatly benefit the lives of others. It is not too late to donate, even if you are reading this after May 3rd. You can donate up to September 30th 2009. Please log onto the website http://www.curebraintumors.org/ and search for Gregorio or I, let me know if you have any difficulty donating. No donation is too small. So far we have raised approx $4,000. Fantastic.

Today we are at the hospital for the first round of cycle 3. The doctors reiterated the good news from the MRI and showed us the visual evidence. There has been significant reduction up to 50% in some areas. It is really good to see and hear this news. We will continue with the current regime as she is tolerating it well and it is having a significant effect on those weeds. Another 6 cycles will take us to early 2010. We will get there.

Go Team Impavido

Lots of love,
Emma and Gregorio xxx

Tuesday, April 21, 2009

Race for Hope

On Sunday May 3, Gregorio and I are donning our running (well maybe walking shoes) and joining thousands of others in a fundraising 5K Run/Walk for a world without brain tumors. We will be part of the Children's National Medical Center team aka Dr Bear's Brain Buster team. If you would like to support our effort you can either sponsor us individually or our team. Please go to the website and follow the instructions.

www.curebraintumors.org

We are grateful for all your support. If you want a laugh come down to the Freedom Plaza, 13th and Penn Ave NW and cheer us on!

Many thanks,
Emma and Gregorio xxx

Shrinking

I know many of you have been waiting with bated breathe for the MRI results, this morning we finally received the good news. The chemo is working, the tumors are shrinking.

Last measurements of the main tumor: 29 x 25 x 32 mm
New measurements: 26 x 22 x 31 mm

They also looked at the spine, part of it seems to be the same and another part seems to have disappeared. The two smaller tumors in brain are unchanged.

Great news. Enjoy spring.

Will write more soon.

Lots of love,
Emma and Gregorio xxx

Thursday, April 9, 2009

Happy Easter



This week has whizzed by. We have been enjoying the first week of the spring break, bike rides, ice creams, visits to the Natural History Museum, enjoying the new playroom and more. Having been without chemo for two weeks there were very few side effects this past week.

We're at the hospital today with Matilde. She is having a great old time and won't leave the art room. But I think she is more excited about this evening - her first sleepover! Everyone at the hospital has been told.

Today we completed the end of cycle number 2. We are a quarter of the way there!

The MRI will now be on Friday April 17th. This is not unlucky for the British. We are confident that those weeds are shrinking but do keep those prayers going.

Our basement is complete, after 10 weeks of chaos we are much relieved. Spring is in the air, the forsythia and cherry blossoms have peeked, the daffs are still out and the tulips are begining to show their colorful heads and now the dogwoods and azaleas are beginning to bloom. This week-end we've got an Easter Brunch with friends, egg hunts and Papa's birthday (not to mention tennis, playdates and a ikea visits) so lots of things to keep us busy.

No chemo for the next two weeks but we'll update you when we have the results of the MRI. Next week Isabella will meet the people from the Make a Wish Foundation and will let them know her wish.

Happy Easter/Buona Pasqua,

Emma & Gregorio. xxx


Thursday, March 26, 2009

Maple Syrup

Last week ran away with us and I never got round to publishing an update and here we are again at Children's on a Thursday morning. Isabella's blood counts (specifically her ANC) were still a bit low at 420, so there was no chemo last week. Today her ANC rocketed up to 1850 and we are about to start chemo. This will be round 3 of this cycle and we are now two weeks behind our original date for a break. Of course, last week I had just recalulated when our breaks would fall throughout the next 6 months but I am learning that this can be a futile exercise. Realistically, I'll keep on working out when the 'good' chemo-free weeks will be and just have to accept when they are shifted.

The good news is that through major scientific research we seem to have cracked Isabella's anxiety which induces vomiting. The magic ingredient, you may not believe, is Aunt Jemima's maple syrup. She looks away and takes deep breathes of maple syprup and she forgets about the smell and taste she has in her mouth. Hey, whatever works, just so long as I remember to pack the bottle in my hospital bag every week we should be fine! And just to prove she can now handle the saline flush, they had to give her 4 doses this morning in order to draw blood. No problem, bring it on!

In fact today has started better than most weeks. Isabella asked for and ate breakfast. She has not done this on a Thursday in 6 months of treatment. Then on our way to the hospital, Isabella's mood was different. Instead of a tense 20 minutes + drive, filled with questions such as "who is going to access me today, I hope it's Jeanette" "how much saline will I have to have? " "how long will we be there today" "can I rest at home this afternoon if I don't feel well" we had "what are those people doing standing in the middle of the road?" "mummy I don't think you are sticking the speed limit!!" and "can I play the piano this afternoon?" Definitely much more positive and aware of her surroundings.

This morning she was accessed very quickly with no anxiety and then, as if scrambled eggs weren't enough at home, we've just had a yogurt, two rashers of bacon and a bottle of chocolate milk. Ok not her usual gourmet selection, but Thursday mornings are full of treats and a concentration on the calorie intake.

We think Isabella is continuing to do brilliantly in the way she takes everything in her stride. We often get asked "How's Isabella doing?" and quite honestly we don't always know how to reply. From the beginning Isabella has been asymptomatic (thankfully). No headaches, no vision problems, no seizures, no pain and really she is tolerating the chemotherapy incredibly well. So it is often difficult to know what to say. As a worrying mother I am always adding "yes we'd love to come over for a playdate on Friday but please understand that Isabella may not be on top form" Everytime she proves me wrong, so perhaps I should just stop worrying. Yeah right! But how we answer that question usually depends on the how we are feeling, but please don't stop asking. Isabella is a very sensitive and mature little girl, as many of you know, and we are increasingly dealing with her questions about how long she is going to have to take chemotherapy for and why she has to take it, but Mati doesn't. The lack of hair continues to be a non-issue, in fact she's rather pleased not to have to go through the whole hair washing and drying ordeal like her sister. Most of the time Isabella is a regular 6 year old, sorry 6 and 3/4 year old, full of questions, enthusiasm and happy to play, learn and enjoy life.

Given that we are two weeks behind on the original chemo plan, the MRI will now be shifted so it falls after the last round. We are still waiting for the date. We'll be back next week for the final round. Both girls are rather happy about this as there is no school, so big sister gets to show young Matilde the art room and introduce her to her friends and the clowns.

Love,

Emma & Gregorio. xxx