Thursday, October 30, 2008

Round 2: Trick or treat?

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

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

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

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

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

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

Enjoy!
Emma & Gregorio xxx

Thursday, October 23, 2008

Round 1

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

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

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

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

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

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

Tune in next week.

Love

Emma and Gregorio xxx

Thursday, October 16, 2008

First visit to the oncology clinic

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

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

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

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

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

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

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

Thank you for your continued support.

Love
Emma & Gregorio xxx

Friday, October 10, 2008

Marching forward

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

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

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

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

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

Love,
Emma & Gregorio

Monday, October 6, 2008

Back Home

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

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

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

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

Love,

Emma and Gregorio

Friday, October 3, 2008

Hospital Sleepover

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

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

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

Love Emma and Gregorio