Thursday, March 8, 2012


Friends and Family,

A lot has happened since the last update but we still are not certain of the next steps for treatment.  Since then Dan has had the stereotactic radiographic surgery on his brain.  The tumor there was about the size of a BB.  The doctors felt the procedure went well. Dan said he just laid down and took a short nap and then it was "over".  It is easier than most doctor's office visits!   We won't fully know the results until sometime in May (unless a clinical trial before then requires earlier tests), when they retest him, but we are assuming the results will be as excellent  as they have been in the past. 

On Feb.12 we went to the Biblical Discipleship/Counseling Conference at Faith Church in Lafayette, IN.  Not only were we there with 8 others from our church in NY, but we ran into a friend from PA and 3 friends from College Hill days who now attend Faith Bible Church here in Cincinnati.  It isn't too surprising to run into folks you know there.  There were 1725 in attendance!  

Dan and I were in two different tracks so we were hearing different topics.  We were in class from 8:15 a.m. until 6:30 p.m. most days.  It wasn't as emotionally or mentally draining as last year, but hard physically to sit so long each day....and still challenging.  

We returned home from that on Feb. 17 in time for Dan to attend the Men's Retreat from ECC (our OH church).  Monday, we had our appointment with Dr. Rixe, the kidney cancer researcher at U. of Cincinnati.  Much to our dismay, we learned that he, too, is leaving our fair city.  We did meet the doctor who will be taking over the research projects and we heard about one possible clinical trial that Dan would qualify for.  It is a "phase 1" trial. That means that Dan would be in the first group of humans to receive the drug.  Up until now, only lab rats/mice were given it.  hmmmmm.  Not our first choice.  The other option we learned about was a new kind of stem cell transplant being done in Bethesda, MD.  While that sounded a bit more promising, it would require a sibling "match" and living in Bethesda for about 4 months.  Dan only has one living sibling and there is probably less than a 50% chance of her being a close enough "match".  Plus I know that he really wants to get this discipleship/counseling ministry up and running and doesn't want to be in Bethesda, MD for 4 months.  But it remains a possibility.

Dr. Rixe also recommended that we talk with Dr. Rini, at The Cleveland Clinic.  He thought they might have a clinical trial or two there that Dan might qualify for.

After talking with Dr. Rixe, we felt that much of what we had to do in the next week or two was to do a lot of research, phone calling and thinking and praying and all of that could be done from NY.  We had planned on being in NY but were not sure we could go.  We decided sort of "spur of the moment" to go home, pack and leave the next day.  

While we were driving to NY, I thought...."we drive right through Cleveland.  Maybe, if we are really lucky, we could get an appt. at The Cleveland Clinic the day we are driving back home and save ourselves a separate trip."  Well that sounded like a good idea.  And I think out of respect for Dr. Rixe who had referred us, Dr. Rini made time to see us that day.  The only problem was that it meant NEEDING to leave NY at a specific time and we had sort of planned NOT to need to do that so we could work around winter weather.  You know what is coming...right?    Yeah.  NY hasn't gotten hardly any snow all year but right after we got there, they got a fair amount of snow.  And just before we left a big snowstorm arrived.  We kind of worried about when we should leave for 3 days and after all of that, ended up leaving in the middle of the storm!    More on that a bit later.

Well, we ended up visiting when the NY schools have "winter break".  Their school year is from Labor Day to the end of June and they get a winter break in addition to a spring break b/c the winters are so long and hard there (usually).  So many of our friends were gone on family vacations and a few more regular snow-birds were still down south.  BUT we did get to see several friends and had good visits.  We also got one day of fun in the snow....snow shoeing around the ministry center lake.

This is Dan (center) with Al and Audrey on our trek around the Ministry Center's Lily Lake.  

Dan and I were enjoying the snow.  Cocoa was enjoying the hike too! You can see that it was truly a "winter wonderland" that day.

A dear friend let us stay at her beautiful home rather than to have to open and close our cabin.  I know that that made the trip easier and more enjoyable for Dan, not having to worry about all of that.  

                        Dan, relaxing, doing his beloved Sudoku.

Thanks, Joan!!  Just wish you would have been there with us!!

Well, we waited for that storm to come and go.  Originally, it was predicted to be finished by mid afternoon on Thurs.  We planned to leave then, drive a few hours, spend the night and then drive the rest of the way to Cleveland on Friday morning.  Our appt. was at 1 p.m.  Cleveland is about 7 hours from our place in NY under good conditions so we knew we would need longer.  Based on the forecast, the worst of the driving conditions should have been between where we were
and Syracuse.  But they kept moving the end time of the storm later and later.  At first we thought we'd just wait till it ended (supposedly at midnight now) and leave around 3 a.m.  But then it looked like the snow  was going to last all night Thurs.  THAT was NOT good.  I finally decided that if I was going to have to drive in the snowstorm, I'd rather do it in daylight so we left about noon on Thurs.  

The drive from Lake Pleasant to Utica normally takes about 55 minutes.  That day it took an hour and 45 minutes.  Thankfully there were not many other people dumb enough to be driving, but there were logging trucks.  You do NOT want a logging truck behind you on SNOWY, curvy, steep mountain roads!!  I finally found a place where there was a little bit of shoulder so I could pull over and let the truck go by me.  That was a relief!!  We were going anywhere from 20 mph to 40 mph, depending on the steepness of the road and the depth of the snow cover.  The plows just couldn't keep up with the snowfall.

We were very thankful to get down the mountain safely.  Once we were about 15 miles west of Utica, the snow turned to rain and the driving got a lot easier.  We went as far as Erie, PA that day.  Since we had Cocoa with us, we needed to find a pet-friendly motel.  My sister takes her dog on many trips and recommended the LaQuinta chain, so that is where we stayed.  The thought of staying in a room where other dogs stayed was not too appealing, but do what ya gotta do!  Other than the key card system being down, requiring that we be let in our room by a staff person, it wasn't too bad.

The next day we arrived in Cleveland in plenty of time to find the right building at the clinic, find the parking and then find a restaurant.  We are learning to appreciate my iPhone at times like these.  "Ms. Siri" helped us find a Panera for lunch and find our way back to the Clinic.  (for you non-APPLE folks, "Siri" is the computer voice that gives vocal info from the phone ...sort of like an audible GPS but offers a wider range of info).

Dr. Rini did not have any clinical trials to offer us but he did have some insights on Avastin, the drug that Dan had taken for 2 years.  We had read that some people who were successfully treated with Avastin and had had to go off of it for some reason for a time; when they went back on the drug, it was no longer effective.  He said he had treated many people with Avastin and had not seen that happen.  He felt that it worked before and was probably the best course of action for right now.  He said that since it is now approved for renal cell cancer treatment, the oncologist could be more flexible in handling the possible complications that caused Dan to have to go off of it the last time and at the very least, might buy time until a new clinical trial that seems to fit his circumstances better is found.

We still have one more researcher to talk with.  We will be visiting Dr. Olencki at Ohio State's  "The James Cancer Center" on Monday.  He may or may not have a clinical trial that would be appropriate.  If he does, I'm thinking Dan may still opt to go the Avastin route for right now and see if it has the same good impact it had before, possibly saving the clinical trial for later.

He has an appointment with a new local oncologist set up for Tues. and we are  hoping he can get his treatment started sometime next week.

As always, thank you each so much for continuing to pray for us.  We still are learning about things like "trust" and "faith" and God's sovereignty and His faithfulness.  Your prayers have meant much to us, helping to carry us along the journey!!  Thank you!!  Jodee and Dan.