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

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

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

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

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

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

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