20 January 2014

Overdue Update

Time has stood still and sped by all at the same time.  The biopsy from C's lungs came back malignant setting our travel plans for Thanksgiving awry, our holidays became uncertain, and once again we were faced with the unknown.  We returned to NIH where C had just joined a study and learned that chemo would definitely be the next step which then disqualified him from that study.  In our meeting with the doctors we learned that prostate cancer can mutate in this way, especially in younger men with the disease.  A difficult pill to swallow and a very disappointing setback, but we were told that they would forward his file to a few other teams and maybe here would be another study we could look at.  On the way out we visited with a friend of ours who is an oncology nurse there, she explained a couple of things that we weren't clear on and offered more love and support.  By the time we went to my parent's house to pick up the girls, not 10 minutes away, we received a call from her that C's file had been placed on her desk as a possible participant in one of her studies.

The new study that we considered, then signed up for, is a phase 1 study focusing on the cancer in his lungs.  Phase 1 means that there is no control or experimental groups like the last study.  This one is testing the amount of the medicine that patients can stand with the hope that the tolerable amount will increase the benefit of the current standard chemotherapy.  As C is one of the later patients to enter the study, they are reasonably sure of the beneficial amount.  This combination of chemo, the standard of care and the experimental medicine, is given in 21 day rounds.  For the first four days he stays at the hospital while the treatment is administered, He then gets the next two weeks to recover before starting again.  The goal is to receive six total rounds, tonight is the eve of the third round.

Tomorrow we will go in and get a CT scan to look to see if there is any movement with the tumors in his lungs.  If there are no adverse effects we will continue for four more rounds.  We have no reason to believe the cancer in C's lungs is not responding, so hopefully they will be able to give us good news, that maybe it has shrunk by some measurable amount.  There is a certain amount of fear that we won't, but we can't focus on that possibility. 

We have been blessed by so many friends and family who have been by our side through this rough time.  Friends who have helped us with a food train to take meal planning off of our shoulders, including one friend who didn't let a "little" ice storm prevent her from delivering a meal to us..... sacrificing her own safety and sanity.  Those who have sent texts and notes, encouraging us through prayers, generous offers of time and energy to help with whatever they can.  Others who have dragged me out either for adult time away or play dates when I can't leave the girls, offering an escape from my own thoughts and fears.  I know I'll never fully be able to verbalize the amount of gratitude we have that so many have been placed in our path that have helped hold us up, but from the bottom of my heart thank you all for everything.