March On

January and February are tough months in our home. We've been forever imprinted by the events of January and February 2002, when my stepson, Danny, relapsed with leukemia for the second time, spent 39 long and difficult days in the hospital, and died on March 15, 2002, after two weeks back home. The months of January and February represent becoming aware that something was seriously wrong, again; the painful bone marrow aspirations that confirmed another relapse; the demoralizing reinserting of a central line for a third chemotherapy protocol; the constant monitoring of oscillating blood counts; the assessment of hard treatment options; an unexpected stint of kidney dialysis; the changed and almost distant look on the faces of the doctors and the altered tone in their voices; the futile preparation for a bone marrow transplant that would never happen, including the early removal of orthodontic braces in preparation for radiation; and the all-too-familiar loss of weight, hair, energy and strength in a vibrant young man.

Every step along the path in those two months was filled with pain and a foreboding sense of possible loss. Early on, there was also hope as we looked toward a BMT buoyed by the fact that Danny's brother was a perfect match. But, we had to reestablish a remission first, and that didn't happen. As February wore on, we became increasingly aware that Dan was not responding to the latest round of chemo. This time, the leukemia was here to stay. On the 28th of February we brought him home.

It is interesting that March is not as difficult a month for us. March 2002 was a month of mostly quiet days at home with Danny being relatively comfortable in our family room and his bedroom, where I’m making this entry. Our focus was palliative; our challenge was reconciliation; our time was dedicated to simple sharing; our goal was maintaining a sense of peace sweetened with a few drops of joy. Certainly, there were difficult times in that month, such as renting a wheelchair because for the first time Dan could not get up and around, and arranging for hospice for a 14-year old. But, there were many remarkable moments that continue to inform us and resonate in our lives every day. There were transcendent late night discussions between my wife and her son that touched on the threshold of the sacred. There were early morning encounters between me and my stepson that redefined the peacefulness that is found only when one lives in the here and now.

That experience changed almost everything for my wife and me. We are profoundly different people now – we are better people; our hearts are more open and compassionate; our minds are more open and aware. So much good has come into our lives since March 15, 2002. And yet, we are conflicted – because we would give it all up in a second if we could snap our fingers and return to 2001 and have Danny back in his room, making a blog entry, rather than me. But, we can’t.

It would be too easy, too presumptuous and too self-centered to say that the betterment of our lives has revealed the purpose to Danny’s death. But, it is correct to say that we have gleaned meaning, awareness and vision from our experience at Dan’s side during a four-year journey. We remain determined that we will not allow the seeds he planted in us to lie in fallow ground. We will grow, because he wanted to; we will learn, because he wanted to; we will live, because he wanted to; we will continue to change; because he did; we will be resilient, because he was. We will fight our way into the here and now because that is where he taught us to live in peace in the face of adversity.

He would be pleased; and that pleases us.