Wednesday, May 1, 2013

6 months, .1%

I expected to update the blog this week with good news from Dan's 6-month routine bone marrow biopsy. Unfortunately, the news is not so good.  We got a phone call last night around 6pm after several days of waiting, wondering, creating "what ifs" in our head, and praying that the biopsy taken last Friday was cancer-free.  No news is good news we heard, and The doctor just hasn't had a chance to call we hoped.  After entertaining those thoughts we let our minds wander to, It's never taken this long before, something must be wrong, they're coming up with a plan before they call

Dan's biopsy showed .1% ALL cells.  Now, the positive (and what our doctor opened with) is that 99.9% looks beautiful.  Normal.  Cancer-free.  After much deliberation and consultation with the long-term follow-up team in Seattle, our doctors came up with a plan that will hopefully take care of this tiny, tiny amount and get back to 100% normal cells.  There will be another biopsy in 4 weeks to see progress.  4 weeks.  4 weeks of waiting, wondering, creating "what ifs" in our head, and praying that the plan makes Dan cancer-free. 

I mention immunosuppressant drugs on here a lot.  That's because Dan is on a lot of them.  Each week, his doses of these medications are monitored and changed based on his blood work and any overt symptoms (e.g., rashes, dry mouth, etc) that suggest graft-versus-host disease (GVHD).  GVHD can be very bad.  It can be fatal.  If GVHD flares badly, there can be life-long effects and on-going complications.  To prevent serious GVHD flares, drugs suppress Dan's immune system from attacking his donor so that the two of them get along in the sandbox and the sand stays on the ground.  A potential draw-back of this suppression is that something called graft-versus-leukemia effect is also suppressed in turn.  Part of Dan's graft/donor's job is to look around in Dan's blood and eat/attack/get rid of any cells that don't look normal.  Her cells are normal, Dan's are not, that's the whole point of all this.  That's graft-versus-leukemia effect, a good thing, normal donor cells eating abnormal leukemia cells.  The post-transplant care really consists a lot of doctors walking a tight rope prescribing enough immunosuppression to keep GVHD at bay while also allowing graft-versus-leukemia effect to take place.

Now that that's out of the way, here is the plan.  Dan will stop taking some of his immunosuppression medication for the next four weeks.  We will closely monitor for GVHD symptoms as this medication change gives the donor/graft free reigns to fill buckets with sand and throw like wild.  We hope that her cells enjoy a tasty feast of leukemia cells and that not one tiny ALL crumb is left.  We hope that GVHD is manageable and that Dan handles the medication change okay.   We pray that in 4 weeks, we all breathe a ridiculously huge sigh of relief, hug each other, cry together, and celebrate 100% cancer-free.

I can't believe I'm writing this kind of blog again, and I'm deeply saddened to share this news.  Yes, we've been in graver situations, and yes, we can do this.  We'll continue to find little joys.  We'll continue to cherish every second with each other and say I love you a hundred times a day.  We'll keep praying for health, for a cure, and for courage.  We'll try not to think of what might happen in the future and we'll see each moment for the beauty that it holds.  I know we'll get through this.  And I know we'll do it with hope, and strength, and in love.  I know we'll draw from your prayers, from your cards, emails and texts.  We'll feel the love from near and far.  We'll do this all like we have been for almost four years.  We'll do it because we have to, not because we want to, or because we're good at it.  We have no choice.  This is happening and cancer came back.  Again.    

I am off work today and plan to spend it with Danny enjoying the sunshine and his company.  He's been feeling great lately so we've been doing more and more "normal" things.  We'll fill the next four weeks with "normal" things and not wish any time away.  When the next biopsy approaches, we'll worry again.  But not until then.  We'll begin this new plan and we'll get on with our lives.  Please say prayers that we stay strong, that we don't lose faith, that the cancer disappears, and that ALL will be well.


  1. LOVE the plan to really enjoy the next 4 weeks and put it aside until then - a bold and faith-filled decision - run with it!

    Will be praying and cheering you guys on to do what you do best: fight-pray-love! :)

  2. Sorry to hear this Hannah and Dan, thank you for letting us know. As you know, our hearts are with you.

  3. We will be recommitting to an even stronger prayer attack!! Watch your mail, too. :) You guys are going to conquer this! All our love and prayers.

  4. This is a really cute picture of both of you. Best wishes for both of you.

  5. We're praying for you and offering up some new challenges for this battle against the .1%! May you find peace in these four weeks. Love, John, Ann and family