Philography: Update (finally!) 10/10/2008

Hello everyone:

Phil has done well on the Avastin to date. We celebrated our 4th anniversary on Sept. 18th! (There have been many times we weren't certain we'd make it to another aniversary, but we did!
:-) We even took a second honeymoon - a week on Maui! We had a beautiful view from our condo. This is a photo of Phil on the beach that our condo overlooked in Kapalua. We had a lovely sea breeze coming through the slats in the louvered windows. It was my first time to Hawaii, though Phil has been there twice. Such a beautiful place. We went to the Maui Ocean Center (aquarium) which has a beautiful exhibit of ocean reef life, and I snorkeled a little. It's just amazing there.

Phil has been having his Avastin infusions every 3 weeks for the past 2 treatments. He had an MRI on Monday and it showed the tumor as stable. We Fed-exed the scans and report to Dr. Butowski at UCSF, and we spoke with him by phone on Wednesday. Dr. Butowski suggested returning to a two-week, rather than 3-week, interval for his Avastin infusions in the hopes of showing some improvements in the next scan. So Phil's next infusion will be on Monday, and his next scan will be in one month.

Thanks for your continued prayers, emails, and hopeful thoughts. We wish everyone a beautiful fall season.

Love,
Phil and Elizabeth

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.

2 comments:

ChuckTuesday, 14 October, 2008
Hey Phil Phantastic and Beth Beautiful - great to hear that all is well. I've been checking the blog off and on and wondering if things were good. Maui qualifies...

We are well - Eddie had his first birthday party last weekend. My folks were here so that was fun. I'll send some pics.

Chuck
JanetTuesday, 20 January, 2009
Hey Chuck,
I love Phil Phantastic and Beth Beautiful! You are a gem!!
Janet (Beth's little sister!)

Beth and Phil,
Thanks for the birthday wishes. We didn't get time to talk about Phil, but I am glad to have read the blog today. My prayers are with you both for the next medical decision. I miss both of you.
Love,
Janet