August 24, 2007

Biopsy Results

Dear Friends and Family,

Thank you for all your kind notes yesterday. Your uplifting thoughts and expressions of support mean so much to us! Thank you again!

Friday was a long day, but Evan made it home just in time to see Ryan for a few minutes before he left on his first campout with the deacons. That was such a blessing! Ryan was so excited to go on this trip, but also so worried about Evan. Once he got to see Evan and see that he was o.k., all the fear and worry disappeared and the excitement could finally take over. My dad went on the trip with Ryan, and Ryan has awesome leaders and great friends in the quorum, so I know he’ll have a great experience. We were so grateful for that.

On Friday morning the nurses told us that Evan would indeed be able to go home that day, but said that Evan’s Oncologist (Dr. Choucair) wanted to see us before we left. It took several hours before he could get over to see us. We thought he probably just wanted to check on us and answer any questions before we left, but it turns out he had our biopsy results already. Evidently he wanted a specific pathologist to analyze the biopsy, and that particular pathologist (Dr. Chen) was scheduled to leave town this weekend. Dr. Chen graciously agreed to stay late on Thursday night in order to finish the study before he left.

The results were not what we were hoping for. Cancerous tumors are rated on a grading scale of 1 to 4, with 4 being the most malignant/fast growing form. What Evan has is called grade 4 Glioblastoma. This means that the treatment will include both Radiation and Chemotherapy. Evan will have Radiation treatments 5 days/week for 6 weeks, and take a Chemo pill everyday during those 6 weeks. After that, he will have one month off and get another MRI to see what the tumor is doing. Then he will go back on the Chemo pill for 3 weeks on and 1 week off. They can continue that treatment for up to a year.

The chance of completely getting rid of a tumor like this is only 3-5%, so the goal is to shrink the tumor as much as possible and then watch it really closely after that. Statistically, the prognosis isn’t great. The average life expectancy is 2 years. However, the doctor was quick to add that although an “average” can sound really scary at first, it also tells us that the other 50% went on to live much longer than that. Since Evan is young and doesn’t have any other health problems, he should certainly expect “above average” results.

Our surgeon came by to see us also, and he was very encouraging as well. He said that statistics are helpful only to the extent that they give you a sharp and clean understanding of what you’re dealing with - so you know you can’t mess around or be naïve. But after that, we just need to put them aside because every person and every tumor will respond differently to treatment and no one can predict that. And that’s the attitude we’ve had all along, so we’re going to stick to that.

We’ll be seeing the Radiation Oncologist next week to get all the details about the treatment and do any preparation work that needs to be done. I’m assuming they’ll start treatments as soon as that’s done, but I’ll let you know.

Thanks again for all your love and prayers. We are so lucky to have such a powerful support system. We saw lots of very sick people over the last three days who did not have that. It was a very humbling experience. We’re so grateful for each and every one of you.

All my love,
Margot