Philography: Update: 10/26/2007

Greetings Friends and Family:

Phil's MRI, on Wednesday 10/17, looked good as far as tumor is concerned. The tumor doesn't appear to have grown at all. Phil's neuro-oncologist also assessed Phil's deficits. His vision is worse in the right eye, as now he has no peripheral vision on that side - upper and lower quandrants. He didn’t do so well on the language assessment either. (He couldn’t repeat “No ifs ands or buts” or “It’s a sunny day in San Francisco.”)

Dr. Butowski explained that he has seen a worsening of deficits in other Avastin patients, as well. Avasitn not only cuts off blood supply to the tumor but to healthy brain tissue too.
The plan, now, is to cut the Avastin dose in half. If Phil's deficits worsen, Dr. Butowski recommends stopping the treatment and watching Phil closely with monthly MRIs for as long as the tumor remains stable. He has followed this course with several Avastin patients, and all but one has remained stable so far. We’ll just take it one infusion at a time. If and when it recurs, he may be eligible for other clinical trials.

We followed our trip to San Francisco with a trip to Philadelphia to see family and friends there, flying out of San Francisco to Philly the day after Phil's tests. While the flight seemed long and tiring, it was worth it to see everyone. We spent a good deal of time reminiscing about Phil's childhood. Pete took Phil on a couple of long drives around the area to see their old haunts. Elizabeth told me stories of what Phil was like in elementary school and high school. (Adorable!) We also spent some time with Phil's father going through some family heirlooms with the family. We found Phil's first grade "yearbook" and some class photos from his senior year of high school, complete with graduation messages on the back of each, all of which celebrated Phil's sense of humor. :-) I'm happy to report, he still has it!

We also went to the church of which Phil was a member for much of his life, Blooming Glen Mennonite Church. Wow! Can they SING!!! We are always moved to tears when we visit there. We were welcomed with such a warm embrace. Phil spent some time with all of his dear friends from the small group that he had been a part of when he attended that church. (See photos.) They have kept in touch with Phil over the years, and throughout his illness have sent emails and photos checking in and giving us news of their lives. His moments with them after the service meant more to him than I can express here. They seemed to change his whole outlook. He gained new courage to spend time with people, despite his difficulty communicating, because his friends are so important to him.

Now we are happy to be home. We have spent the last 3 months completing some overdue home maintenance. When Phil's tumor progressed in July, we decided to fast track some projects we had planned to complete on a longer time table, so that Phil could enjoy them while home. Frankly, we were trying to cram our lives into what little time we have together. We and several other neighbors replaced our adjoining fences. We also had the exterior of the house painted. We replaced our old and not-so-fresh carpet (thanks to Sophie-the-cat and other pet accidents), with a pretty laminate flooring, and Phil finally got his long-wished-for gas fireplace insert. (In fact, he's napping happily in front of it as write this.) It's been great. We had wonderful contractors for the most part. Our painter, flooring installer, and fireplace installers were wonderful. No problems. (How often does THAT happen?)

So we are settling in to Fall and looking forward to the holidays. We wish you all health and appreciation for all that is good in your lives as we approach Thanksgiving.

Love,
Elizabeth and Phil.

Basic Timeline....

11/10/2006: First seizure followed by a week or two of testing. Diagnosis of brain tumor followed.
2/19/2007: A follow-up MRI scan showed rapid progression of the tumor, necessitating surgery.
2/27/07: Brain surgery at UCSF Medical Center with Dr. Mitchel Berger. Good surgery and good recovery.
3/28 - 5/10/07: Started clinical trial of daily oral chemo (Temozolomide) and Enzastaurin (an experimental drug).
5/10/07: Phil completed his radiation cycle. Stopped chemo. Continued Enzastaurin.
6/4/07: Started Temozolomide on 5/23 schedule (5 days on/23 days off.)
7/24/07: MRI showed significant tumor progression. Stopped clinical trial and temozolomide.
7/31/07: Began another chemo protocol with CPT11 and Avastin with infusions every 2 weeks.
9/4/07: MRI showed the tumor shrinking considerably!
10/17/07: MRI showed stable tumor. No progression. Speech and vision worse. Avastin dose halved to slow damage to healthy brain tissue.
11/26/07: MRI showed more shrinkage in one area, and no growth in other parts of the tumor. Clinical improvement. Continue CPT11/Avastin at same dose and frequency.
1/25/08: MRI-Stable. All tumor progression is gone. One small area left that continues to shrink. YAY! Continue CPT11/Avastin.
Next MRI scheduled for March 26th.
3/26/08: MRI "pretty much clear;" Stopping tx for one month; then scan again.
July/08: Restarted avastin because of possible tumor regrowth, or other effects of stopping avastin. Infusion every 2 weeks. Scan in one month.
Sept/08: Scan improved. Change frequency of avastin infustion to every 3 weeks. Scan in early October.
10/6/2008: Scan showed some vague changes but tumor seems "stable." Phil feels some pressure in his head, though the scan does not show evidence of this. Will increase avastin to every 2 weeks to see if that will generate improvements. Next scan will be early November.

One of Phil's friends sent this beautiful quote:

“When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand, the friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” -Henri Nouwen

Memorial Services

A memorial service was held in Blooming Glen, PA at Phil's home church, Blooming Glen Mennonite Church, on Sunday, June 28th at 4:00. It was followed by a burial of Phil's ashes in the family plot across the street from the church.

The service was beautiful. People shared both touching and funny stories of Phil's life, and the music was gorgeous, with all in attendance singing four-part harmony, as the Mennonite churches in that area are well-known for. His very good friends, Rod Derstine, Rachel Blosser Derstine and Dennis Maust provided music, with Rachel on piano, Dennis on mandolin, and Rod singing a piece that brought us all to tears.

It was wonderful to see Phil's family and friends again and to spend time reminiscing with them about Phil.

A big thanks to Phil's brother, Pete, and sister, Elizabeth, for planning the service. Everything went so well. They will also be participating in the service here in Eugene on July 25th.

The Caregivers

The link below will take you to a film made by Dr. Mitchel Berger, Phil's neurosurgeon, and others on the lives of caregivers. Dr. Richardson is a resident who assisted with Phil's surgery and also cared for him post surgery while Phil was in the hospital recovering. I think it took him all of 2 minutes to check Phil's neuro status and incision each morning. He was in and out. So it was interesting to hear him talk about what that is like for him. The hospital floor they show is the one Phil was on after surgery.

The film is a good picture of what we go through as bt patients and caregivers, and I share it with you to give you a closer glimpse of how this is for us.

Click on the link below to view the film.