Saturday, February 6, 2010

Good News

It is nice to be able to report some encouraging news. We have had a great two weeks with minor and major miracles to help us along the way.

We had some insurance coverage hiccups a few days before my planned departure for Houston to start the treatment two weeks ago. Thanks to a lot of caring and helpful people we got that resolved quickly and favorably and were able to go to Houston knowing that we had full insurance coverage for this treatment.

I went down on Sunday night (1/24) and stayed in Houston through Thursday (1/28). I had blood tests,and EKGs and visits with the study doctor, Dr. Falchook, to make sure I met the eligibility requirements for the study. All that went well and on Wednesday of that week, I started taking the new medication.

As part of the clinical trial they monitored me for 10 hours following my first dose. This included hourly blood draws and almost hourly EKGs. After that I went back to my hotel. The next day Thursday I had to return for another blood draw 24 hours after my first dose, then I headed home. I continue to take the medication via oral pill twice a day.

At this point I wish I had X-ray vision to be able to see what is happening to the tumors within my body. Unfortunately I don't, but there has been a significant metric that is pointing in the right direction. Since this started in July I have been taking pain medications to deal with the pain in my pelvic area. The dosages have escalated from a few ibuprofen a day in July to needing two Oxycodones every 4 hours to help alleviate the pain. On the Saturday following my first dose I took my last Oxycodone. Thanks to Dennis and Rosie for taking our kids for the weekend, Allison and I had a nice night out and short but fun hike together. Something that I hadn't felt up to for a long time. At this point it was starting to look like things were headed in the right direction. Sunday I took some Tylenol for a headache. But since then I have not taken anything for pain. I have gone for an entire week without needing any pain medication. Being able to walk with no pain is such a great feeling again. This morning I hiked to the top of Flagstaff and skied down, thanks to Curtis who broke trail the entire way up. I was tired at the end but it's something I wouldn't have even contemplated two weeks ago.

We are indeed very grateful for minor and major miracles, and for the prayers and efforts of many that helped bring them to pass.

11 comments:

laura said...

BEAUTIFUL NEWS BEN!! Honestly so happy to hear that your pain level has decreased. What a blessing! Happy to hear you are being able to do the things you love to do. Like you said, we too are so grateful for your miracles. We love you!!

Anne said...

:)

Rachel said...

Oh HURRAH! This is wonderful, especially about your decrease in pain. We're continuing to think of you daily and are thrilled with any good news you can pass along!

April Celeste Garff said...

That is great news! Bet it felt good to be active again!!!

Karen said...

We are so glad for the good news. We have faith that it will continue. Many thanks for the update. Love you, Bill and Karen

temp0002 said...

I'm so happy to hear it. I think about you often.

Unknown said...

what great news! thanks for the update. we continue to pray for you and think about your sweet family often.

Nisie said...

Wonderful news! To the miracle and greatness of those searching for cures to this awful disease! We are thinking of you often! Be well!

Jane Durham said...

I hope you feel this well for a long while!

Anonymous said...

Yay! A miracle! We're so happy to read your update. We continue to pray and think of you and Allison daily.
amy and john

Peter said...

Benj,

So great to hear about this new option you are pursuing. We are following what is going on and will continue to keep you in our prayers.
Peter and Liz