What's a Mother To Do?
ROBERT - 1994
What’s a mother to do when she sees her 23-year-old son lying in an E.R. bed and he says, “Well, Mom, it’s either AIDS or cancer”? Disbelief was all I remember feeling. This was my son, athlete, baseball player, gorgeous, charming and full of life. It couldn’t be AIDS; Robert had a complete physical recently and received a clean bill of health. “So,” I thought, “it’s cancer; that’s curable, no problem, we’ll beat this.” When I left the hospital that night I sat in the car for an hour crying.
The next day we had a diagnosis: Acute Lymphocytic Leukemia. The doctor said there was a 90% survival rate. Robert moved to the leukemia floor and I began a new weekday routine: wake and head to work, rush to lunch with Robert, back to finish the workday, return to the hospital until midnight; weekends were spent at the hospital until he entered remission. Back at home, our new normal included managing five days of chemotherapy per week.
December 1995, a visit to Florida inspired Robert to enroll in college to study physical therapy. What a surprise for me! Semester over, he came home for his 25th birthday. An issue with his hip required an MRI. The night before the MRI, he told something wasn’t right and he was going for a blood test while there. “Why?” I asked, my heart in my throat. “Do you want me to go with you?” “No.” Silly, him, did he think he could stop me? HE RELAPSED. His white count was over 260,000, about thirty times normal. Back to seven days per week at the hospital with my son.
The road to remission wasn’t as easy this time; we almost lost him twice. One night his condition was so bad I had to help a nurse wheel him down to ICU. I spent the night beside his bed willing Robert to live. I didn’t close my eyes for an instant. He made it through that nightmare only to face a bone marrow transplant. Seriously weak from the chemo, he came home to build his strength.
While he was home I got married. I wanted my son there when Walter Roth and I married and this was the only way I could ensure he would be there. Two weeks later, we walked through the doors of North Shore University Hospital and the grueling routine began anew. Two bone marrow transplants with marrow provided by his brother Adam, and two relapses later presented a question, what do we do now? Stem cell transplant or not? The odds were terrible. Was the suffering warranted? Always a planner, Robert had told his sister Cheryl what to do and when. It was decided to bring Robert home and shower him with as much love as possible. Robert’s good friends, Jenny and Randi, flew from across the country to be with him; as did his old high school sweetheart, Helene. November 22, 1996, Robert went off to that great baseball diamond in the sky knowing he was loved unconditionally by so many.
Devastation and heart break enveloped me, even as I write this, I cry with the pain of loss. My son, Robert, an amazing human being was loved beyond what anyone would have expected. Over 600 honored him at his funeral, some from as far as Europe. What a tribute to my child, a 25 year old who touched lives and hearts in a way that no one understood.
CECILE - 2014
I’m Ceil, Robert’s mom. On May 27, I went for a routine blood test; on May 28, my doctor tracked me down. He didn’t like the fact that my white count was 31,000. “Big deal,” I retorted, but he wasn’t listening. He had already given my number to a hematology oncologist. So what do I do now? First I had to tell my husband, Walter, second, would be my daughter, Judith, who would be extremely upset if I didn’t tell her. I told no one else. Why should I? Nothing was confirmed.
A week later, I sat at the cancer center as they drew ten vials of blood. My doctor hinted at leukemia, but only the blood work would provide proof. I struggled with my thoughts. Robert’s illness taught me this: don’t worry about anything until you have to. So, I was determined to “not worry”. At that point, I had to tell my other children, Cheryl and Adam.
Fast forward to today, I have Chronic Lymphocytic Leukemia. My recent lab work was a little bit higher than 18 months ago, but not terrible. I am told I will die with this, not from it, so why worry? Instead, I am doing everything within my power to help find a cure.
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