Feed your FAITH and your fears will starve .

Friday, November 18, 2011

Plan? We Have a Plan? Kind Of.

Well, we don't have a definite plan by any means but we have a totally different one evolving than we thought.  I got a call from Dr. Carr today.  All the docs in PA have been working very hard to make arrangements to treat Trent. The surgery and adjunct photo dynamic therapy is actually a clinical trial.  They only allow a certain number of individuals to participate in a clinical trial each year.  And of course, this one is full for this year.  Dr. Freidberg and his team were working to have an extension given to include Trent, otherwise he would have to wait for surgery until January which nobody thought was a good idea.  While they were getting him into the clinical trial they learned that the photo-sensitizing medicine that would be used has not been very effective on sarcomas.  There is a new drug coming out that is supposed to be better....but it hasn't been approved yet and won't be available until January.  Talk about a roadblock!  So Dr. Freidberg called his mentor, Dr. David Sugarbaker at Brigham and Women's Hospital in Boston, MA.  ( I have already done my homework on him and he seems pretty darn awesome.  Dr. Freidberg's nurse said Dr. Sugarbaker is an "icon" in the thoracic world.) They discussed the options and Dr. Sugarbaker wants to see Trent on Tuesday.  Yes, in three days!  At this point no one knows anything for sure as far as treatment but Dr. Sugarbaker thinks that inter-operative chemotherapy is the best route.  They will do the same surgery as was planned for PA but before closing up they will fill the chest cavity with chemotherapy drugs and seal him up.  They will heat the chemo to about 108 degrees and let it "bake" Trent's insides for a couple of hours. Then they unseal him and drain the chemo out.  It is a "one and done" procedure, meaning he only has to have it once.   Having the inter-operative chemotherapy does not negate having the photo dynamic therapy if Trent needs it in the future, but hopefully this will be the end of cancer for us.

I am not sure what chemo they will use because we understood that all of the chemotherapy agents known to work for sarcoma do not work for Trent.  I have no idea what this all means in terms of recovery.  I have a million questions that I need to have ready for Dr. Sugarbaker.

However, the Brigham and Women's Hospital is rated #5 in the nation as far as cancer hospitals go.  Dr. Freidberg already called #1 and #2 and found that they couldn't offer Trent anything different than he could get in Salt Lake.  So I need to let the experts do their job and trust that there are things out there that I haven't heard about yet.  We are very confident that Dr. Sugarbaker and the sarcoma oncology team there will be fantastic.  We will fly out Monday and meet with the team on Tuesday.  It is possible that Trent could be in surgery by Wednesday but we really don't know at this point.  So we have to be prepared for anything.

It has been quite a day and my head is spinning.  My emotions are running wild as are Trent's.  We are planners.  We like to make a plan and go for it.  It kind of trips us up a little bit when the plan changes every day.  Hopefully we can take it easy tonight and then hit the ground running tomorrow to make plans and prepare for the path ahead.


  1. You guys are awesome :)
    Sending love and hugs and prayers of course. xxx

  2. I love that so many super heroes are banding together to find the best, most effective way to save another fellow super hero ;)

    Best of luck! This is sure to be a most memorable Thanksgiving . . .

  3. Giving thanks from the Northwest for all of these people working for all of you. Prayers continue for inspiration and tender mercies at every step.

  4. wow. those definitely are some different details & plans than what you were facing just a matter of a few days ago. what a blessing though. there's a gal i've heard of around here, though she was not suffering from sarcoma that i'm aware of, who had a similar chemo treatment done where she was sealed up, then "baked" a bit, then drained. from what i have heard, she saw improvements, and i believe is back in remission.
    another gal i knew of, back when we were in DC for my husband's stuff in '04, would fly over with her husband from germany every 6 mos for a chemo treatment kind of like that too. so hopefully this new plan/idea for trent's treatment works out to be the miracle we're all praying for! ::hugs::

  5. Just wanted to check in and tell you(all who read this blog)how very much we appreciate your constant prayers and your continuing moral support for Holly and Trent. The strength of your faith and prayers is tangible to all of us. Please know how much we appreciate every act or expression of compassion and love. Thank you for your steadiness and support. Though we will never be able to pay you back, we WILL pay it forward to others we will come to know who need the same support you have given in this instance. May the Lord continue to bless you with all the tender mercies you deserve. God bless you all. Holly's Dad.