November 29, 2009

Dear Friends and Family,

We hope everyone had a nice Thanksgiving! We have appreciated all the messages of love and concern that so many of you have sent over the last two weeks. Thank you so much!

I wish I had better news to report.

The tumor board met a week ago Thursday and recommended a new round of radiation for Evan. However, Evan's radiologist (Dr. Watson - whom we trust more than any of Evan's other doctors) was out of town and unable to attend the meeting, so we wanted to get his opinion before we made any decisions.

On Monday of this week I had a long conversation with Dr. Watson and he was very honest and direct, which is what we've always appreciated about him. First of all, the "Gamma Knife" radiation surgery is not an option because of the new tumor's location. The type of radiation Evan could receive would be a series of 5 high-dose treatments over a period of two weeks. However, when I asked Dr. Watson what he thought we would accomplish by doing it, he said that it might buy us another two months, at best, and then we'd be right back where we are now.

Considering all the side effects it could cause for Evan, and with so little benefit, we called Dr. Watson back on Wednesday and told him that we had decided not to do it. He was very kind and compassionate and tried to prepare us for the coming weeks. He also arranged for us to start working with hospice services. We'll have our first meeting with them sometime this coming week. Dr. Watson told us to prepare for the possibility that Evan might not make it to Christmas.

Fortunately, Evan had a great day on Thursday and thoroughly enjoyed spending the day with his family at his Mom's house in Layton. Since then he's had a rough couple of days. His vision has taken a huge turn for the worse, and he's been losing mobility and/or falling at least 5 or 6 times a day. Most of the time he's near the couch or the bed, so he has a soft place to land. But twice he's fallen and hit his head on the hard floor - so it's a pretty serious concern. On Friday we put him back on the steroids, hoping that by reducing the swelling around the tumor it would relieve some of these symptoms. So far, it hasn't helped.

In spite of everything, Evan has managed to stay in relatively good spirits - making jokes about how I should look on the bright side because I won't have to buy him any Christmas presents this year. Typical Evan.

As always - we'll keep you posted. Thanks for your prayers!

Love,
Margot