When my mom gets sick

there is something called SARCOMA that my mom got.
When you have SARCOMA there is something that you sometimes get called tumors.

My mom sometimes does not feel well becuse she eats too much.

When my mom was 34 she did'nt even know what sarcoma was and I am 7 years old and I know what sarcoma is.

blogging, brivanib and coincidences

On Friday I wanted to post from 53rd St, but for some reason I could not get to my blog (Maya, the digital native, was able to post from hers). As I tried to get to my blog I found reference to Elsa with a liposarcoma on a link to a blog called Card Blue. Oops that has to be me. Me and my silly posts. I was curious but the computer at Sloan Kettering did not allow me to access the blog.
So when I got home, I turned the computer on to get to Card Blue. But, as it often happens I was immediately distracted and went to another site, this time, the Sarcoma Alliance. I had not been there in a while and to my surprise (and honor) it now has a link to Living With a Sarcoma. Oops.. again a link to me and my silliness ;).
Aha but there it was! Underneath my blog, a link to Card Blue. With a smile I found the post mentioning my stable tumors and Michelle´s. But there were more coincidences. Card Blue was also starting Brivanib at MSKCC. And as I read older posts I realized that we had actually been in the same waiting room at the same time a couple of hours before.
Coincidences. I believe in them.
Good luck. Viva Brivanib.

No man is an island

Zé wrote a post about how much fun it is for the girls to stay behind with tio Armindo and Tia Didija and about how we get to be spoiled by tio Jorge Pedro and tia Maryanne when we are in NYC. He also wrote about the "mini-convention" of Retro Lipo Travellers that took place in the treatment room last week. The liposarcoma stories that were shared, were nothing more than stories of hope. Two topics, I wanted to write about, but since, as always, Zé wrote it a thousand times better, I am just going to copy/paste from his blog.

Elsa's Drug
written by Zé

For the past few weeks, as those who check Elsa's blog know, Elsa and I have been traveling to New York City, to Memorial Sloan Kettering Cancer Center, where she is trying out a new drug. The traveling back and forth has been very tiresome, but hopefully worth it. She has found three other people that are taking the same drug. One lady has almost the same history as Elsa. Apparently there is a lot of hope and expectations riding on this drug. There are quite a number of people taking the drug, because it worked so dramatically on a patient who happened to have a liposarcoma, just like Elsa. Every time we go there, we hear of more people getting on the drug. They are all very hopeful people who have made a very calculated bet on science. They all have stories of struggle against this horrible disease, but they all share a common attitude that science will come up with a solution to their problem. I, for one, believe this is the correct attitude and have always encouraged Elsa to approach her battle this way.

But even if it is tiresome and sometimes stessful, like when I have to deal with NYC traffic, these trips have also had their moments of fun. Every week Elsa and I stay overnight at my uncle Jorge Pedro's and aunt Maryanne's house were we are pampered and regaled with stories like only he can recount.Tios Didija and Armindo stay with Maya and Filipa, at our house, while we are away, which I think is also a joyful time for them. Although it is a difficult ordeal to go through, our family has been supperb to us in helping us deal with it. I am reminded of the Donne poem: "

No man is an island, entire of itself
every man is a piece of the continent, a part of the main ...

Indeed!

Yesterday

Our smiles reflect what was going through our hearts. If you read the comments you will see that we only met last week, through our blogs. I found Michelle´s blog when I searched Brivanib (on google blogs). So, as you can imagine, we were excited to meet in person. On top of all, we have Doctor´s visits on the same day, same team at MSKCC.

If you have a sarcoma you know that it is not often that you bump into other sarcoma patients (sarcomas are one percent of the adult cancers and there are over 50 types). Even for those of us who are lucky to be treated in a sarcoma center it does not happen that often. First of all because we do not go around the waiting room asking: what do you have? what drug are you on? Also our doctors and nurses don't tell us: see that other patient over there, he has the same thing as you. There is something called patient privacy.

Anyways, there was more than one reason for Michelle and I to be smiling. We were smiling not only because we liked each other immediately and because we really know how the other one feels. We were smiling because when Michelle was driving to MSKCC, something wonderful happened. She had a terrible pain and horrible nose bleed. Yes, in our world we celebrate these things ;). Michelle's sarcoma tumors are located on her brain. What happened yesterday COULD mean that the drug is working and one of the tumors COLLAPSED. Read more about yesterday in Michelle´s blog.

A Cure In Our Time

(via Sarcoma Foundation of America)