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

Sunday, March 22, 2009

Back home again


We came home Saturday afternoon, Isabella seems to be over the infection and life returns to normal. Everyone got a good night's sleep, our appetite has returned and though neither would probably admit it, the sisters are pleased to be at home together again. This morning we made playdough.




Spring is in the air, enjoy the rest of the week-end.


Love

Emma and Gregorio. xxx

Thursday, March 19, 2009

Neutropenic

Sometimes the same old routine can seem a little dull, so this week's visit to the hospital provides a twist on our regular visit. Wednesday morning Isabella had a high fever of 39.4 c or 102 give or take a few points among friends. She was weak and not herself. So off to Children's we thought for a quick dose of antibiotics. Gregorio and I were secretly pleased, we'd go straight into the oncology clinic and see our usual nurses and none of the late night antics that an ER visit entails when she gets a fever. The nurse quickly accessd her port, drew blood and the antibiotics were administered. We had our coats on and were planning what to eat for lunch when we're told Isabella is neutropenic.

Neutropenic? Yes we've heard about it in the oncology coridoors but neither G nor I were sure what this meant and before the doctor returns to explain what this means, Gregorio is googling away on his iPhone. For all you non medics - basically the neutrophils in her white blood cell count are extremely low. A healthy person has 1500, for a chemo patient they will let it slip to 500, Isabella was at 410. So we were admitted to the oncology in-patient ward. Well we haven't had a sleepover on the 4th floor, a new experience.

Most of Wednesday Isabella was just not herself fighting what they expect is a regular flu-type virus, over the course of Thursday her fever came down (and then went up again) she is definitely more herself today. She's receiving antibiotics every 8 hours. The main issue with this is that her line has to be flushed with a saline solution before and after any medication is administered. It gives her a terrible taste in her mouth and she is sick to her stomach, sometimes just the word saline or flush induces vomitting. But the moment it's over she's chatting and laughing. "better out than in!" she says. Even at 1 am she sat bolt upright on tasting the saline....but moments later we had some entertaining conversations. Something about right angles and left angles.

During the day she developed an allergic reaction to the antibiotic, so they have changed medication this evening and her rash is now subsiding. This afternoon her temperature rose again so now they are saying we are staying till at least Saturday. She has to be without a fever for 24 hours, her white blood count needs to be at least 250 (we're currently below that) and rising and the blood cultures need to be negative for 48 hours. So far they are.




Isabella is beginning to get bored and hungry. These are all good signs with Isabella. She was visited by Dr JJ and Doctor Molly, also known as the clowns. All three of us were in fits of laughter today. Here they are and Isabella, looking much better. Laughter definitely is the best medicine.







Needless to say she received no chemo today and we'll reassess next week. Most likely everything will be shifted by one week. So another two sessions to go before the break. And technically the MRI is scheduled for April 6th. For the planner in me this throws everything out of alignment. I had just calculated that Isabella would be off chemo for all family birthdays. But what's in a date, the most important thing is celebrating the good times.




Matilde has been to the hospital quite a bit in the past few days, normally she is at school. This evening she arrived at the hospital with several presents for Isabella, she'd chosen her prized bar of chocolate and wrapped it all up herself. Then when she got to the hospital she told Isabella's nurse how she had received a trophy from Isabella's doctors for being a SuperSib. She is mighty proud of it. Seeing her sister in the hospital must be hard for Matilde. On the way home she asked if she could sleepover in the hospital one day with Isabella. We could bring a little mattress in for me. And just now she has called from the bed for her doctor's thing (the stethescope) she needs to see if her heart is still beating.


So here's hoping that Isabella continues to improve in the next 24 hours and her blood cultures are negative. Then we'll all be able to sleep in our own beds, have some nice food and have a relaxing week-end.

We'll leave you with the good news of the week: Isabella and Matilde will have a cousin in September. They are very excited. Happy Mother's Day to the new mother-to-be and all you British mothers.


Love,


Emma and Gregorio. xxx

Friday, March 13, 2009

Kids are amazing

It is true what they say, kids never cease to amaze. This Thursday we finished our session in the oncology clinic at 1:30 pm. It's always a rather long morning, considering we get there at 8 am. As we left the car park, Isabella starts munching on her lunch in the back of the car and asks me to call her teacher immediately to find out where the class is. We found them on their walking tour of Georgetown, looking at different buildings and structures. After an hour walking around Georgetown, she decided she'd return to school with her friends and finish up the last half an hour or so of school. I was amazed at her stamina but her friends and teachers are obviously much more fun than being with your mother! And that is just the way it should be .

This gave me 20 minutes to grab something to eat and do some shopping. Then I thought we'd be going home for a nice quiet and relaxing afternoon when I picked them up at 3:30. But no, Isabella announces she wants to go to the talent show and watch her friends perform. We duly bought our tickets and settled in for several hours of entertainment. If it had been up to Isabella and Matilde we would have stayed till the bitter end!


And Friday she went off to school for another day of fun learning. We are proud of her desire to carry on just like all her friends. We thought you would enjoy a couple of images from her mornings at the oncology clinic. Here she is in the art room with the art room ladies, which is filled with every craft you can think of and lots of games.



A little later she was visited by the Easter bunny. And then the clowns came by. I didn't manage to catch a photo of her with them. Maybe next time. I am not sure who looks forward to seeing the clowns more, Isabella or Gregorio and I. They do provide some light relief during a long morning.




Two down and another two to go for this cycle of chemo and then we'll be on another short break from chemo and also from school. Isabella will have an MRI sometime at the end of March/early April to monitor her progress.



And here is Matilde holding her Supersib trophy which arrived in the post this week-end. She was extremely pleased with it, as you can see.






We're back in winter here, after a summery week-end. The snowdrops, crocus and daffs are out. Very soon they'll start predicting the peak time to see the cherry blossoms. And before you know it the mosquitoes will be pestering us and the air conditioning will be full on.

Lots of love,



Emma and Gregorio .xxx

Friday, March 6, 2009

We Love Isabella





A new month and perhaps spring is finally on it's way. Each month we are a bit closer to an extended break from treatment at the end of the year. Here in DC we've been from the depths of winter on Monday and Tuesday and now a fantstic spring week-end is being forecast.

Isabella enjoyed her break from treatment. The week at Blue Knob ski resort was a success. Matilde is quite a daredevil on skis! The girls went out with their instructor Dick even during freezing rain. They don't know that Gregorio and I sat by the fire to keep warm. Lots of snow and very few people on the slopes. We certainly recharged the batteries.

Yesterday we started another round of chemotherapy. Isabella was quite a pro and a lot less anxious than she normally is. She even managed Italian classes in the afternoon and has gone off to school today. At 2:30 pm I have still not been called to collect her. I am sure will be very tired but being distracted at school by her friends and teachers is a good thing.

This week Isabella recieved 'her' song from the Songs of Love Foundation. One of the many foundations that exist to help sick children and their families. They seem to have incorporated all her family, friends and favourite hobbies into the song. Needless to say, our budding popstar Matilde does a quite show singing along (and adding extra words) with a microphone. We tried to persuade Matilde to enter the school talent show next week and sing the song but many of you have been spared! Not even she would stand up in front of all her friends for this performance. If you'd like to hear the song you can download it as outlined below. You will need to make a small contribution to the Songs of Love Foundation. Even if this song is ringing in Gregorio and my head it has bought a lots of smiles to Isabella, she seems very touched that a song has been written about her and Mati gets all excited when her name is mentioned.

This week Gregorio and I celebrated 9 years of marriage. We've come a long way in those 9 years. Gregorio says he'd like to turn back the clocks to an easier time, but as my wise aunt says "life doesn't get easier, it gets different." Bringing up children, facing job insecurities we all face these challenges. Admittedly we have an added dimension in dealing with Isabella's tumors and treatment but nothing is insurmountable, we will get there.

I don't think the economic green shoots are beginning to show yet but they are in the garden. Spring is in the air. Have a nice week-end

Love,
Emma and Gregorio. xxx

SONG OF LOVE FOR ISABELLA

www.songsoflove.org
Click on Family & Friends Song & Ringtone Download
Enter child's last name: Impavido
Her song number is: 18016


And for those of you who don't want to download, here are the words of Isabella's song.


La La La, we love Isabella
What a beautiful girl, we love Isabella

Come on everybody, listen up you'll see
Gonna tell you about her, she's a star, she's a dream
She can sing and dance, she knows how to entertain you
You'll wanna stand up and clap your hands
Isabella, she's got the groove


La La La, We love Isabella
What a beautiful girl, we love Isabella

Dressing up Isabella, she's got style
She likes cooking with papa, making pizza and pasta
When it comes to food, Isabella, she's an explorer
She'll try anything once, then tell you if she likes the flavor


La La La, we love Isabella
What a beauitful girl, we love Isabella

When mummy and papa throw a party for Isabella
It's always a good time, everybody's comin'over
Her sister Mati opens the door
Here comes nonna, nonno and grandpa Ross


There's Peter, Janie, uncle Simon or "Toadstool" and Florence
Isabella's playing tennis and swimming
With her friends Lottie, Darya, Flora, Olivia and Ottavia


La La La, we love Isabella
What a beautiful girl, we love Isabella