November 13, 2009

Dear Friends and Family,

A lot has happened in the last few weeks and months, so I have some catching up to do.

The last time I wrote, Evan had been off of chemo for 3 months but was still receiving treatments of a maintenance drug called Avastin every 3-4 weeks. We have now stopped the Avastin treatments as well. To make a long story short – Evan started showing signs of kidney damage, which is a common side effect among patients who have been on Avastin for long periods of time. We could not have continued that treatment without causing permanent kidney damage or kidney failure, so it was not a difficult decision. After almost 2 years on the drug, Evan’s body had had enough.

The last time I wrote I also mentioned that Evan was having problems with double-vision, but that this problem had been corrected with some special glasses. The glasses worked wonderfully for several months. However, things started to change about three weeks ago. Among other things, he started getting the double-vision again, even with the glasses. Also, he started sleeping a lot and would have a difficult time waking up – very groggy and disoriented. Then, just in the last two or three weeks he started experiencing what we’ve now been told is something called “sleep paralysis.”

Basically, when he wakes up from sleeping (during the night, in the morning, or after a nap) he has trouble moving. Sometimes he just can’t move his legs, or if he tries to stand up his legs buckle underneath him and he falls back onto the couch or the bed where he was sitting. It usually passes within 5 or 10 minutes, after he’s had time to “wake-up” a bit more. But then, last Saturday evening he fell asleep while we were watching a movie and at one point started mumbling and his arm twitched a little bit. I just assumed he was having a vivid dream and talking in his sleep. Several minutes later he woke up and told me that he had been awake but couldn’t open his eyes, couldn’t speak, and couldn’t move his limbs. He had been trying to call out to me or hit me with his arm to tell me he was in trouble, but he couldn’t move. It was pretty disturbing.

This afternoon (Friday) Evan had an MRI and the fears we had been harboring all week were confirmed. Evan has a new tumor, located in his brain stem. The original tumor showed some slight enhancement, but Dr. Choucair was much more concerned about the “new enhancement.” Because the brain stem is such a tight, narrow space, there just isn’t any room for a tumor to grow without causing problems. Dr. Choucair will be taking Evan’s case to the Tumor Board which meets next Thursday morning (this is where the top oncologists and radiologists from the Huntsman Center, U of U, and IHC meet together to discuss their difficult cases), and he will call us with their recommendations next week.

However, Evan’s body has been through so much! The thought of putting him through radiation and chemotherapy again is unbearable. At this point, we’re planning to focus on him and our family instead of the cancer.

It’s been a really tough week, and we appreciate your love and support more than anything we can express. We’ll keep you posted as things develop.

With love,
Margot