Thursday, May 8, 2014


Two weeks ago we got news that abruptly ended the quest for answers to Dan's mystery symptoms.  We got a phone call that we'd dreaded for 18 months since the transplant.  We heard for the fourth time in five years that Dan's leukemia was back.  This time, however, there was no treatment, no transplant, no trial that Dan could tolerate.  We checked him out of rehab and brought him home to begin his hospice journey.     

On Monday, we had a safe trip to my parents' house in PA and enjoyed a rare and awesome grouping in the car - Dan, me, my brother, Colin, and Dan's college friend, Luke.  It was an emotional 2 hours of reminiscing, laughing, crying, listening to Bruce, stopping at McDonald's for 4 piece nuggets, 7eleven for Slurpies, and feeling the sun through the windows.  My family was busy converting the dining room into a bedroom for Dan and it looked beautiful by the time we arrived.  The hospital bed is so much more comfortable and easy to move Dan in so it was a welcomed change.  The windows bring in lots of light and the birds chirp outside the windows.  The room is filling up with flowers so their soft fragrance fills the air.  It is the perfect space. 

We met with the new hospice team here and have been so impressed by their gentleness, kindness, and sensitivity in dealing with the most difficult questions/topics.  Dan and I signed up for massages and we are looking forward to a harpist coming to the house to play some music.  We've met with our nurse and social worker who have answered many of our questions.  A nurse's aid will come by a few times a week to help Dan bathe and help us care for him.  Hospice has been wonderful.

Two weeks ago, our doctor told us that this disease would likely grow quickly and progress in 2-4 weeks.  Dan is more tired than 2 weeks ago and definitely weaker, but he is still smiling, still socializing, still eating and drinking and lighting up the room.  We are so grateful for this time that he is awake, alert and asking for visitors.  He is scared, but is not letting fear consume him.  We are taking each day as it comes and making the most of the time we have left.  Fortunately, we have been talking about death and its possibility for years now so some of these conversations haven't been new to us.  We certainly are not "prepared" because I cannot even imagine life without Dan, but we are coping with the news in a way that allows us to face reality while living in the surreal state that is love, laughter, and joy surrounded by family and friends.  Nothing is normal anymore and we know that. 

The last two weeks have been a celebration of Dan's life.  We have received countless emails, texts, cards and letters reaching out to share memories, send love, and express gratitude for Dan's friendship.  I have no doubt that he is one of the most special people ever to walk this earth. We haven't had a chance to reach out to everyone individually, so I will say a collective "thank you" on here for all of your words.  "Thank you" for making us smile, for stirring up fond memories, for filling our house with food and flowers, and for showing us what it means to be loved.  We are forever grateful.  

I'm sitting next to Dan as he rests peacefully - the breeze through the windows, soft music filling the room.  I haven't opened the doors yet to the hustle and bustle of people and I'm sipping on some coffee in my pajamas.  In this moment, we are not afraid.  In this moment, ALL is well.  

A corner of Dan's room with a picture from a happy day