Family Update : Last Item In List
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Just like yesterday
Last January 11, 2010 was a Monday. I had spent a sleepless night with Sophie in the ER after she had slipped in the bathroom and had a concussion. In the morning, I was busy preparing Joel for an entire day of bone marrow tests in order to prepare for an upcoming bone marrow transplant at Children’s hospital. He was scheduled for a 10 am PET CT scan. He was grumpy and angry because that scan required an empty stomach and eating was one of his favorite things to do, especially breakfast. After an injection of radioactive contrast, we sat cuddled in the cozy chair together, while the contrast had time to circulate his system. It was a familiar process. We took turns reading The Big Book of Dr. Seuss, which he had just learned to read. The CT techs let me sit with them in the control room, while internal images of Joel slowly appeared on the monitor. It looked like there were too many places highlighted. From past CTs, that seemed strange, but what did I know? Perhaps the settings were picking up something else. The usually chatty techs were unusually quiet. We finished and they wished us all the best as we were on our way. It felt strange. Joel’s favorite stop, Neldam’s Danish bakery was closed on Monday. No treats today. The rest of the day was spent with physicals, cardiology exams, EKGs and ultrasound, and transplant counseling. By 4pm Joel was exhausted and had had enough. We waited in the Oncology clinic for a final talk with his doctors. He was not talking to me, mad for wasting his day and not providing the food he desired. He hid under the covers of the clinic bed. One of our Doctors came in and didn’t waste time getting to the point. He said the results of this morning’s CT were not what they had expected. His tumor had disseminated and spread through his body, they would not be able to proceed with the transplant. My body turned inside out. I had nothing to say. That was the last time I was ever to meet with Doctors without my husband. I watched Joel squirm under the covers, aloof to the grim discussion above him. “How could that be happening inside my energetic boy?” was all I could think to myself. I excused myself to step out and phone Sean. He was going to drive right out to Children’s, but I decided I just needed to take Joel home ASAP. I wasn’t going to talk with doctors anymore, they had nothing left. I did my best to compose and drive us home. He had forgotten he was mad and was just relieved to be on our way home. We chatted on the way home, and Sean was out front to greet us as we drove up. We talked quietly to each other and hugged, unable to digest the unbelievable. Thank God someone had brought dinner. I added a couple side dishes and videoed Joel cooking broccoli for the last time. I taped our family having dinner, it was one of our last meals all together. A simple event, taken for granted so many times in the past. We finished the night playing some games, Joel winning a chess game against dad. I took pictures of him cuddled in his bed with his animals. He was so happy. That night I didn’t give him any of the stupid medications he hated. What could the doctors say?

The following night as I was bent over Joel changing his bandage, he stroked my hair and held my face in his hands and said, “Mom, I want to remember you just like this.” I sunk into him, sobbing. Why would he say that? What 7 year old says that? He knew. I kissed him and told him how much I loved him no matter what.

The panic, sickness and dread increased each day throughout the chaos of the next month, the worst days of my life as the inevitable approached. I held on for hope, as the rope slowly unraveled under my hands leaving them naked before God, begging for a miracle.

His answer was not what we expected, but His compassion took him as gentle as a lamb. His days and nights were filled with Mom and Dad, hugging and loving him. His heart beat for the last time as he was in our arms.