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

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