Philography: At Journey's End - 11:32 PM, June 13, 2009

Phil passed away at 11:32 PM pacific time last night. He was comfortable. He didn't struggle. He just stopped breathing and was gone. It was a relief, in some ways, to know he was no longer suffering. We stayed with him a while before calling the mortuary. They came and got him at about 4:00 AM. Then I curled up on his bed, still warm, and fell asleep.

I will miss him terribly. I am so grateful to have been a part of his life, to have had the privilege of walking this last stretch of road with him. I hope never to forget the lessons I've learned both from him and from this experience we shared.

Thank you for all of your prayers, love, emails, cards, notes, photographs, anecdotes, thoughts, food, time, support, and other gifts over the past 31 months. With a prognosis of 6-14 months with treatment, Phil beat the odds and managed to find himself again and again, his humor, his ability to enjoy life, after each difficult stage of this journey.

We will have a celebration of Phil's life in Eugene in a few weeks. We will also have some sort of celebration in Pennsylvania where Phil is from. Please check the blog for details as we make the arrangements.

Love,
Elizabeth 6.14.2009

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.

3 comments:

UnknownSunday, 14 June, 2009
Elizabeth: we believe Phil's soul is forever filled with your love and laughter. We imagine the same can be said for you. Our hearts are with you- and in honor of Phil, so is our love and laughter.

-Chris &Marejka
David BakerThursday, 18 June, 2009
Your blog is amazing. It's filled with such joy and helps me remember my cousin the way I always did...smiling. Phil was such a pleasure to be around. Our lives went in different directions, but he remained and will remain a fond memory. God bless you for your good care of him.

Much love,
Jerry HSunday, 28 June, 2009
So sorry to hear of Phil's struggle and journey's end. Thank you for the blog. It's very well done. I'm sorry I did not find it sooner. We were classmates at Dock and EMU, and I always enjoyed his interaction and perspective. We last talked maybe 15 years ago in the Harleysville National
Bank parking lot. It was nice to catch up with where life had taken us. I'm sorry we never talked again. Thank you for sharing the final chapter of Phil's journey on earth. My thoughts and prayers are with you in this very difficult time.