Philography: Update: 12/23/06

Greetings Everyone:

It has been a while since our last update as we have been in a waiting mode to hear from the neurosurgeon. During that wait, we were able to enjoy some time getting back to “normal” a bit. We even found some humor in our situation at times, believe it or not. So we have actually enjoyed this time of not hearing any news or having to make any decisions. It’s been nice to have the time to acclimate before having to move on. He called on Wednesday and gave Phil an update about the results of the MR-Spectroscopy scan.

Dr. Kokkino has presented Phil’s case at two conferences, the latest in Cincinnati, and he called Phil from there with the consensus that he and his colleagues had reached through long discussion of his case. They agreed that the imaging provided a lot of good data about the location of the tumor, the areas of the brain that are affected and the resulting impairments that might be expected if they were to do surgery. They also agreed that imaging studies are not conclusive in determining the grade of the tumor, so they are recommending a biopsy at this point. A biopsy should tell them what kind of cells they are dealing with, how fast the tumor is growing, and whether or not to treat start treatment sooner rather than later. If the tumor is a low-grade tumor, then they may decide to wait a while on treatment. If it turns out to be a more intermediate-grade tumor, then they would begin treatment sooner with radiation and/or chemo.

He was very reassuring about the biopsy. He and his colleagues discussed, at length, the benefit/risk issues and how best to minimize those risks. The area of the brain that would both produce a good sample and present only a very small risk of impairing his speech and would be the most anterior portion of the left temporal lobe. We are encouraged by that.

He also encouraged us to get a second opinion, and we have scheduled that with a top-notch neurosurgeon/brain tumor researcher at UCSF, Dr. Mitchel S. Berger.

As we are learning, everytime we have news from the doctor and have decisions to make about that, it takes us a day or two to equilibrate and be able to have a more forward-moving approach. Phil pulls in to himself (who wouldn’t?) and I cry easily (most helpful, I’m sure). Then we talk about what we’ve been thinking and worried about, and then we both feel our feet slowly coming back to ground and we are then able to move forward. It seems that talking with each other about the things we fear the most helps us tremendously, in small doses. We feel more prepared, then, to face those situations. Erin and Elena stay in close contact with us. Erin calls Phil almost everyday from Portland, and Elena lives in Eugene now, so we are able to see her more often than last year. It is good to have them close. We’ll be spending Christmas Day together and are looking forward to that.

At this point, we have decided to just focus on being in the present and enjoying Christmas and New Year’s, being with family, and letting this other stuff take a back seat for a while. Tonight, we are sitting in front of a nice fire and watching DVD’s of the first season of Alias. J

Thanks, again, for all of your wonderful replies and support. It means so much to us to know that all of you are following this with us and caring so much for us.

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.