April 23, 2008


4th Chemo Treatment

Dear Family & Friends,

Evan had his fourth treatment on the new chemo yesterday. This one doesn’t seem to be quite as bad, or maybe we’re just finally learning how to keep him drugged enough to sleep through the worst of it. I think we were too conservative with the drugs at first. Now he starts taking the full dose of both anti-nausea drugs as soon as we get home, before the nausea even starts. There’s definitely a learning curve with all this.

Unfortunately, the treatments wreak such havoc on his digestive system, and cause so much pain and stiffness with his bones and joints that he still doesn’t feel good even after the nausea has subsided. There’s just no such thing as a good day on this treatment. In spite of it all, he’s been handling it as well as anybody could. He doesn’t complain and he just seems willing to take whatever this thing has to throw at him.

We had a bit of a scare three weeks ago, a few days after his second treatment, when I noticed that the whites of his eyes were turning yellow. The blood test that checks his liver function had been a little high the previous week, but the yellowing eyes suggested that something more serious was happening. When they re-checked the blood they discovered his liver function had suddenly gone through the roof. The measurement is supposed to stay between 0 and 45, and Evan’s was 217.

To make a long story short, they decided it probably wasn’t the chemo that was causing the liver damage but the new blood thinner that Evan had started taking. They had changed his blood thinner from a pill (Coumadin) to a daily shot (Fragmin) because the shots keep the blood more stable than the pills, and the new chemo can cause the thickness of the blood to fluctuate more than the old chemo. However, the new blood thinner can cause liver problems in a small percentage of patients. Evidently, Evan is one of those lucky few! So, he’s back on the Coumadin, and the liver function is doing better.

So now that Evan’s had his fourth chemo treatment, he’s ready for the next MRI. It’s scheduled for next Wednesday (April 30th) at 9:00 am. We’ll meet with Dr. Choucair at 11:30 am to get the results. If the tumor has shrunk or stayed the same, then we’ll continue the current treatment for another 8 weeks. If the tumor has grown, then we’ll have some tough decisions to make about what to do next. There aren’t many treatment options left, and they all come with huge risk factors.

We’ve looked into a few experimental treatments that may be approved for human trials later this year, but in most cases we would have to submit a tissue sample in order to be considered for the trials. Since the surgeon was not able to safely remove extra tissue from Evan’s tumor when he had his biopsy last August, it would be difficult for Evan to qualify as a potential candidate.

Anyway, that’s the latest. I’ll write again next week to let you know about the MRI results. We send each of you our love and gratitude for all your support. Even on the worst of days we feel so blessed, just because we know you’re there and praying for us. Thank you so much!!!

Love,
Margot