Seth's Info

Be at peace.
Do not look forward in fear to the changes in life; rather, look to them with full hope as they arise.
God, whose very own you are, will deliver you from out of them. He has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in His arms.

Do not fear what may happen tomorrow; the same everlasting Father who cares for you today will take care of you then and every day. He will either shield you from suffering, or will give you unfailing strength to bear it.

Be at peace, and put aside all anxious thoughts and imagination.

St. Francis de Sales
1567-1622

Seth's obituary may be viewed at the following links:

http://www.legacy.com/centredaily/GB/GuestbookView.aspx?PersonId=86462409

http://obits.pennlive.com/PennLive/DeathNotices.asp?Page=Lifestory&PersonId=86492166

Dear Friends, I am so very sad to tell you that Seth passed away yesterday afternoon at home. We were having a normal afternoon and getting ready to watch a movie, when Seth began coughing and was unable to breathe. I can tell you that he left this world suddenly, very quickly, and by the grace of God, without pain. His death was a shock, but by no means unexpected, given the advanced stage of his cancer. After all Seth had been through in the past year, I felt that this was a gift from above that he did not suffer, and was not in some hospital room far from home. Only a few hours before, my valentine had hugged me tight, told me how proud he was of me, and how much he wished he could do more with me and the boys. I am the one who is so proud to call myself his wife and best friend.

Tomorrow the obituary should appear in the Centre Daily Times and Harrisburg Patriot-News. Visitation will be on Sunday at Koch Funeral Home, 2401 S. Atherton Street, State College from 2-4pm and 6-8pm. The funeral is Monday at 1:30 pm at Grace Lutheran Church, 205 S. Garner Street in downtown State College. In lieu of flowers, an education fund for our three young boys has been established for those wishing to make a contribution. These can be sent to: Nittany Bank, 1300 N. Atherton Street, State College, PA 16803, with a notation for the Edmondson Children Fund.

Seth and I have been so blessed by the outpouring of your love, prayers, and support over this past year. He and I have appreciated this more than I can ever possibly express. Seth touched many people's lives, and I can tell you that he felt your love in return! God bless you all, and please keep our family in your prayers.
With love,
Jenny

I had an unexpected turn of events the last 2 days. I had been having trouble earlier in the week getting an appointment scheduled at Fox Chase that wasn’t 3 or 4 weeks away. I got a call Wednesday afternoon asking if I could make an appointment Thursday morning at Fox Chase. I was able to get a friend from work drive me down to Philly early Thursday morning and make the appointment. I was very happy to be able to get to see the doctor this week and get things rolling.

To my surprise, Dr Von Mehren told me about 2 clinical trials that Fox Chase was running for which I would qualify. Both are Phase I trials and neither one is specifically designed for sarcoma patients but for advanced cancer patients in general. The first trial involves a drug called patupilone, which is a drug being developed to treat advanced solid tumors developed by Novartis. The second trial involves a drug called SN2310, which belongs in class of cancer drugs called camptothecins and has been developed by Sonus Pharmaceuticals. Both drugs are very new and, as a result, there is little data about how effective either one would be with nerve sheath tumors (or sarcoma in general for that matter). Phase 1 trials are essentially safety trials developed to determine tolerable dosages of a new drug, and do not focus on the efficacy of the drug. This is the downside, really, but I am a good candidate for trials like these because I don’t really have any “proven” treatments to fall back on at this point.

I have decided to enroll in the SN2310 trial, mainly because there is a lot of promise in the camptothecin class of drugs. Camptothecin is a compound that comes from the bark of a tree native to China and has shown tremendous anti-cancer properties by disrupting DNA replication in cancer cells. So there are absolutely no guarantees that this drug will have any positive effect on my sarcoma, but I am happy to be involved with a new and promising drug. There are some typical side effects with the drug (immunosupression etc) but certainly no worse than the traditional drugs I have been involved with.

Over the next couple of weeks I’ll need to have some pre-trial tests conducted and then I should be able to get started. The drugs are administered every 3 weeks, but there are additional blood draw requirements (particularly in the first round) that will keep me busy.

That’s all for now -- thanks for your continued comments, emails, phone calls and prayers.

Seth

I’m happy to report that we are back safe and sound from our big vacation. We enjoyed 7 days in Florida and everybody had a great time. CFL had provided us with 6 days of tickets to the various parks and it was almost too much to accomplish. I was happy to make it out to the parks on several days and avoided getting completely exhausted by using a wheelchair. CFL is really an amazing organization and if you are looking for a worthy cancer charity, please consider supporting them.

Our trip home was very smooth. Our flight was only half-full and arrived into Philadelphia on time. CFL had arranged for a limo to pick us up and drive us back to my parent’s place. My parents arrived home later the same day and we all agreed it was a vacation to remember. Here are another couple photos from the trip.

On the way to the park.....



Sea World Orlando



Because I had a doctor’s appointment in NY on Friday, my mother and her friend Jo Ann drove the kids back to State College on Wednesday while Jenny and I traveled into NY on Thursday. We drove into the city and stayed at a nice hotel Thursday night that was only a couple of blocks from the doctor’s office. I had a full C/T scan scheduled Friday morning with an appointment at 1pm. We didn’t get to see the doctor till after 3 (which was frustrating). As a reminder, we were doing this scan just a month after my last scan because the doctor was not happy with the way the cancer was responding to the Sorafenib. The new scan showed more of the same. There was no real reduction in any of the pelvic and abdominal masses (the largest of these measures almost 10 x 7 cm), and several metastatic nodules remain in the lungs (the largest measuring 1.3 x 1.2 cm). There are still multiple bone mets located in the lumbar and thoracic spine and pelvis as well. This news was obviously not welcome, but not unexpected either. The overall study results seem to be indicating that for sarcoma Sorafenib will be an agent best used in conjunction with other chemotherapy drugs and not just as a stand alone agent.

So the plan now is to return to my oncologist at Fox Chase (Dr Von Mehren) and begin a new, as yet undetermined, protocol with her. My New York City oncologist was happy to keep treating me, but moving treatment back to Philly will be much easier logistically. There are several chemotherapy options available, and we’ll need to discuss these with the doctor and see what she recommends. I am not happy about returning to a hard line chemo treatment, but I don’t have a lot of other options at this point. Jenny and I remain on the lookout for upcoming clinical trials that might offer new or unique treatment approaches.

In the meantime, I am looking forward to watching tonight’s Super Bowl; we are pulling for the Colts in this house. We celebrated Jack’s 8th birthday this weekend in low key fashion. It’s hard to believe it’s been 8 years since Jenny and I became parents!

I’ll keep everyone posted on what develops with my appointments at Fox Chase. Take care and enjoy the game!

Seth