Wednesday, November 4, 2009

Tuesday, October 27, 2009

Today was another eventful day for Eve. She got an EKG to get a baseline of her heart, so we can compare what the Doxorubicin might do to it down the road. She was very cooperative. Her heart looks good, although there is a small hole in the right ventricle that allows blood to flow into the left. A cardiologist will come and speak with us tomorrow, although one of Eve's doctors said there is no need for concern because of the direction of the flow. (If the flow were reversed, there would be a murmur.) He said he isn't worried about it because it is not uncommon and we would never have known if she hadn't had the EKG.
Eve also had her surgery today to put in the port. I am truly shocked by how quickly kids recover. She was bouncing around the room shortly after she woke up! The port will remain accessed while we are in the hospital so Eve's blood can be taken for labs. She does not appear to be in any pain.
Eve was visited by opthamologists today who dilated her eyes and studied them per request of the genetics team. Her eyes are perfectly fine, although her pupils were so big that she looked like she jumped out of an anime cartoon.
We spoke with a nurse from Support Services who began to talk to us about all the expected side-effects of the drugs Eve will receive. We have quite a lot of reading to do in the book that she gave us, but I'm sure we will be experts in a few weeks. I certainly know a lot more than I did four days ago.
Lastly, we signed the consent forms for the chemotherapy. Eve will start tomorrow while her port is still accessed. Our plan is to get her into Friday's clinic. Tomorrow's chemo will be inpatient, but the remaining treatments will be outpatient at the clinic.
As it has been explained to us, she will arrive and have her blood taken to test her white and red blood cell and platelet counts. If they are high enough to continue, she will then be given the drugs, which are administered fairly quickly (two of them take 1 minute and the third will take 15). The biggest part of the visit will be waiting for the lab results, as the lab usually gets backed up. If we come during peak hours (10-10:30 am) we can expect to be at the clinic until 3 or 4 pm. Our goal is to arrive early so we can get her labs back and start chemo as soon as possible.
Eve is apparently well-known throughout the country's oncology community now, and her doctors here are fighting over who will get to treat her. She hasn't let this situation get her down and is still as sweet as ever.
We will be discharged either tomorrow or Thursday, depending on how chemotherapy goes tomorrow. Tonight is the last night the tumors have left to grow!

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