Philography: A Good Day! January 25, 2008

Dear family and friends:

Phil had another MRI today, and the scan looks good!!!! There is no new tumor growth. In fact, the doctor said that all of the tumor that was involved in his July recurrence appears to be gone. There is one small spot of tumor remaining (it was left in during Phil's surgery in February) and that appears to be shrinking each time he has an MRI.

The neuro-oncologist gave Phil the option to stop treatment now and scan again in one month to monitor for any rebound tumor growth, or to remain on treatment for 2 more months and then stop treatment at that time. The NO answered our questions, and Phil decided to remain on the treatment for 2 more months before stopping. So he will have 4 more infusions (one every two weeks) and then another MRI to check his status. The NO said that, while there is an idea circulating that once you stop Avastin, the tumor can rebound dramatically, he has not been seeing this lately. So far, every one of his patients who has stopped the Avastin has been able to hold steady for a while.

Phil continues to improve cognitively. He was not able to correctly name numbers a month ago. In the last two weeks, he began adding the tip to the bill when we eat out, and in the last week, he has also calculated the tip a couple of times. He's been on target each time. These improvements are a good sign and we welcome all of them.

We started the day having breakfast with our friend, Karlie, who drove into the city through rainy weather to meet us. Then she gave us a lift over to the China Basin campus where Phil gets his MRI. It is always great to see her.

Once we had seen the doctor, we rode the MUNI (the commuter train) from the doctor's office to the station near our hotel. Phil and I stood the whole way, and he had the energy and stamina for it - even after an MRI day. The driver gave everyone a good 5-minute scolding for one thing or another, and that, paradoxically, put everyone on the train in a good mood. She was the proverbial cranky mom lobbing her complaints into the back seat about our slowing her down and holding her up, and we were all the naughty children in the back, some eyeing each other and giggling and others volleying justifications that largely went unheard. Things quieted down after a while, and everyone was generally friendly. When we reached our stop, we had just a short walk from there to our hotel. Everything felt "normal," for a change, and that felt good. Even the weather in SF has felt "normal" to us Eugenians: Rainy and very gray.

Thank you for your prayers and good thoughts for us. We feel them.

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.