The drive to and from Pennsylvania feels increasingly like a transition between two lives. The highway itself, and those who call it home, represent a moving, fluid, dynamic community of purpose that I seemed to draw energy from as I traveled. Truck stops, and the lives they provide support to, are very interesting.
Michaela's condition is largely unchanged, but nonetheless tenuous. She completed her run of radiation treatments a little over a week ago. Since then, the emphasis appears to be on monitoring things that have a large impact on her current status. Michaela gets a Complete Blood Count (CBC) test run twice a week. If her platelet count or hemoglobin is low, she goes to Children's to get these. In this picture, Michaela is in the infusion area at the Oncology clinic, with a volunteer music therapist who sang some beautiful, simple, and peaceful songs.
The things that Leslie endeavors to monitor on a daily basis include any bruising or fatigue that might betray a lower than normal blood count. Also, Michaela's IV fluid intake needs to be closely monitored, especially when she receives blood products. Leslie must moderate the amount of TPN that Michaela receives, in order to prevent fluid overload.
The larger concern is that Michaela's bone marrow will shut down, and her body will stop responding to transfusions. At this point I will defer to Leslie's words from a members-only site that she maintains to chronicle Michaela's story:
Only God has a say in what will happen to her now. Our hope is resting in God's tender love and mercy. I believe that all things are possible with God. I have no doubt that he has kept her through these long four and a half years and I know he can heal her if he chooses to. I still however do not know his will for Michaela. As long as there is life there is hope and so I pray daily for strength and to accept whatever God decides. He loves her. Her name is written in his hand.When I left Leetsdale on Saturday morning, I knew two things:
- That my life, or the shambles of conflicting priorities, symbiotic relationships, and dreams both realized and unfulfilled that at times substitutes for a life, has a place with Leslie. This is a place that I must play an equal role in nurturing and forwarding, while at the same time trying to address another life that at times sees itself as incompatible with this one.
- A child is suffering and struggling, and her mother, the woman I love, is in need. Regardless of how long it takes or what it looks like at the end, I belong with her.
So in the interim I am trying to pick up my 'other' life where I left it 3 weeks ago. My son deserves credit for keeping the house as well as he did, despite the frequent gatherings of his friends that I knew were inevitable. One thing that is certain is that neither he and I enjoy yard work, so off we go into the verge. I go back to work tomorrow, and Words is beckoning me to complete July's complement of programming. It'll be a busy few days.
Enjoy the rest of your week.