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

Hello everyone,

I was hoping to post a blog entry sooner but my internet access has been limited. That's one of the few things I can complain about since our vacation is going great. We left State College last Monday, dropped off the dog with a friend, and spent the night at my parent's place in Philadelphia. CFL had arranged for a limousine to pick us up Tuesday morning and take us to the airport. The entire trip went very smoothly. The flight was half full and we got into Orlando right on schedule. The kids enjoyed the flight and were well behaved. We rented an SUV off-site and made our way to the CFL home.

It's a terrific place, 3 bedrooms and well accommodated with everything you might need. Overall, it was a very long day -- traveling really takes its toll on me, and was exhausted. We have been busy every day since then, although I have limited my time at the parks to what I can manage. My parents are here as well, which is a HUGE help. Crowds have been very light at the parks, and the weather has been on the cool side (just a little bit of rain, not bad). Jenny is at Sea World with the kids and my Dad today, while my mother and I are relaxing at their hotel. We've also been to MGM, Epcot, The Magic Kingdom, and Universal Studios. I have been using a wheelchair at the parks which prevents my back from fatiguing too quickly. Tomorrow my parents are leaving to visit some friends further south, and we will probably head out to Universal Studios for another day there.

Even for a healthy family, our schedule has been pretty hectic, but everyone is having a great time. We are flying back Tuesday and things stay busy. I have an appointment (I'm getting a full set of C/T scans) in NYC on Friday and Jenny and I will probably stay in Philadelphia while the kids head home Wednesday. I'll write more when we get back, but here are a couple of photos from the week so far.

Kids at the Airport



With Grammy at the Magic Kingdom



Me with my Parents

I had an excellent visit with my brother last week, and we traveled into New York last Thursday for my 2-week checkup. Driving into the city was a nice change of pace from my usual train trip, and we didn’t encounter too many problems. My blood pressure has finally come down a bit, it’s been elevated since I started Sorafenib. I also seem to be maintaining my weight reasonably well (still around 155 lbs).

In many ways the last 10 months of my life seem like an eternity, and yet they also seem to have flown by. I have spent over 40 days in the hospital, had two major surgeries (both unexpected), had radiation treatment, undergone 6 rounds of chemotherapy, had several blood transfusions, had dozens of scans and x-rays, and had more blood taken than I would have thought possible. Jenny and I have met many doctors, nurses, and medical staff and have gotten to know some of them well. One of the nicest and most helpful people we have met is a social worker at Fox Chase. When my oncologist there recommended that we speak with a social worker I sort of laughed at the idea, thinking “why would we ever need a social worker?”. I couldn’t have been more wrong. Navigating the world of cancer treatment can be overwhelming, even to an internet-savy person committed to educating themselves. Aside from determining the best course of medical treatment (which is a challenge in itself with sarcoma), there is a complex world of medical insurance, disability insurance, social security, medical record management, and cancer support groups that can quickly overwhelm even the most determined patient. I’ve been lucky to have Jenny deal with the majority of this stuff, and readily admit I strongly dislike dealing with any of it.

We met Anjali, a social worker at Fox Chase, during one of my first chemotherapy sessions. She immediately began to educate us on the various programs and services available to cancer patients. While we are lucky to be financially stable and have solid medical insurance (many cancer patients are not so lucky), there are still programs available to help out people like us. For example, the American Cancer Society provides up to $300 per year for travel expenses associated with receiving cancer treatment. In addition, Anjali became our advocate within the hospital, directing us to the correct staff when we had questions, and often filling out hospital paperwork for us and getting various administrative matters resolved quickly. When I was in the hospital, she visited me nearly every day and would always have some tips or helpful advice for whatever was bothering me that day. Needless to say, I have gained a new found respect for what a social worker can provide to a cancer patient -- not just assistance in financial matters, but a friendly face in a scary environment and an advocate in a complex system.

The biggest impact Anjali has had on our lives is related to the “Surprise” I mentioned in my last blog entry. During one of our first meetings, she mentioned an organization called Crossing the Finish Line (CFL) which is located in the Philadelphia area. We had never heard of it, so she quickly filled us in. CFL is an organization that provides young cancer patients an opportunity to escape the world of cancer treatment through expense-paid week long excursions. One of the most common destinations is Walt Disney World since the organization owns a house on the outskirts of Orlando. At the time (this was late May) we thought it sounded great (and too good to be true, really), and Anjalie helped us apply. To qualify you have to be a cancer patient aged 25-49, reside in Pennsylvania, New Jersey, or Delaware, and have a medical recommendation. Happily, we were accepted into the program and told the coordinator that a trip to Disney would be perfect for our family with 3 kids. The big problem, of course, was picking a date that would work. I was in treatment and having all sorts of issues and it seemed like an impossible task to “predict” a week when I would be available and up for traveling. After my stomach/esophagus surgery in September, Jenny and I decided to just pick a date and see what happened. Originally, we scheduled a date in late February, but were later able to schedule a week in late January. So, the big news is that we are planning on traveling to Orlando a week from today for a 7-day trip. We just told the kids this weekend, and they, of course, are just ecstatic about it. It’s been hard “keeping the secret” but I have been reluctant to commit to going until we knew there was a good chance I would be physically up for the trip. Honestly, I still have major reservations about traveling since it wears me out so thoroughly. But this trip is extremely important to me and my family, and I feel honored to have been selected by CFL. The amazing thing is that CFL provides airfare, housing, rental car, tickets to the parks, and spending money – it really is all expenses paid. They own a 3 bedroom house in Davenport, FL, less than 30 minutes from the parks. Because my ability to go to the parks will be pretty limited, my parents will be in town as well, staying at a nearby hotel. They will be a huge help in keeping up with kids. If I spend most of the week at home, that’s OK. We should be receiving all of our tickets and travel arrangements in the mail this week, which will finally make the trip seem more real. The CFL website has lots of good info on the organization, and even has pictures of the house in Davenport. So my eternal thanks to Anjali at Fox Chase, and Mimi at CFL for setting up this amazing trip, it will be a great respite for our well-deserving family.


So we’ll be getting ready for the trip this week, and I’ll be sure to post again before we leave. If anybody wants a set of Mickey Mouse ears, let me know!

Take care,

Seth