Tuesday, July 30, 2013

9 Months, a Fork in the Road

I'll structure this post the way I was taught in school to structure eligibility meetings in the special education world.  When dropping the "your child has a disability" bomb to parents, always start with a positive, gently and compassionately explain the negative, and conclude with a few more positives to leave a devastated parent feeling hopeful.

The bone marrow biopsy was negative.  The spinal fluid was negative.  Dan does NOT have leukemia. We are thrilled that Dan's transplant has not been considered a failure.  We're overjoyed that the graft seems to be doing its job and that his marrow is 100% donor cells.  We're grateful that the leukemia cells were isolated to one sanctuary site and don't appear to have escaped outside the testicles at this time.

Dan will begin an 18-month chemo regimen starting this Friday. We consulted with our doctor yesterday to listen, discuss, consider, and then decide on what we agree to be the best choice to address an isolated testicular relapse.  Our decision mostly came down to odds.  We speculated back and forth, up and down, the odds that leukemia would come back "if".  Unfortunately, there is no right answer and there is no way to know which protocol can/will definitely keep cancer away.  There is no study and no data to support our decision without hesitation.  We considered many expert opinions from many renowned facilities and ultimately trusted our doctor's educated advice on which protocol would most successfully treat Dan.  We chose a conservative approach that aggressively treats while hopefully allows Dan to go back to school and continue to get back to our goal of a normal life.  We don't have a calendar of dates/drugs or a copy of the protocol yet, but I can share what we know/remember for now:

  • The regimen kicks off with  four weekly IV infusions of familiar therapies Dan's had in the past.  He'll get testicular radiation and frequent spinal taps with chemo to keep tabs on the sanctuary sites for leukemia.  Infusions eventually become monthly with a daily chemo pill regimen.
  • Unlike our usual experience with chemotherapy, we aren't treating leukemia at this time.  There are no biopsies to monitor progress and we aren't watching a number of blast cells decrease.  It is, unfortunately, a waiting game quite similar - in fact, quite exactly - to what we've been doing the past four years.  We are approaching this protocol as a proactive therapy to keep leukemia away.  We aren't reacting to cancer in Dan's blood, we're hoping to prevent cancer from ever developing there. We think/hope/desperately pray that after 18 months of chemo, Dan's marrow will finally, finally, have gotten into a rhythm and we can drop leukemia from our vocabulary.  
Dan doesn't have cancer.  The marrow looks perfect.  The donor graft is doing its job. We are obviously disappointed and terribly upset at the thought of another day 1, a chemo calendar, chemo side effects, losing hair, managing side effects, more pills, more appointments, more doctors, and more time away from normal life.  But we are hanging on to this donor now and praying that taking this proactive approach will be worth it in 18 months when Dan will still be cancer-free. Nine months ago today Dan had his bone marrow transplant.  Since then we've had a pretty smooth ride with a few bumps in the road, all on the "normal" path to recovery.  We've been moving forward for nine months and have come to a fork in the road.  We've veered off the straight path of "normal" recovery, but we will still get there. We'll plug along through the calendar of chemo for 18 months and we'll continue to live every day finding little joys and cherishing our time together.  We know that relapse is a very real possibility but won't dwell on that chance.  Instead we'll follow the protocol, we'll trust in medicine, we'll have faith in prayer, and we'll live with hope. We'll live with the hope that ALL will be well.  

Celebrating negative biopsy and spinal fluid results


  1. Thank you for sharing - my heart is with you both.

  2. You are always in my prayers! Love you both!!

  3. S glad you had a moment for celebrating!! Be assured of our prayers for you both as Dan undergoes more chemo. Love & prayers, the Fischers