What Am I Doing to My Son?

Following Michael’s initial procedures, we had a couple of “down” days for Michael to recover in the hospital before his inpatient chemo began. On both of these days, Michael was given Bactrum, an antibiotic that prevents one specific form of pneumonia that he is highly susceptible to while going through chemo. This drug did a number on his stomach, and we spent two days fighting nausea and stomach pain. Michael will be on bactrum every Saturday and Sunday while he is going through at least this course of chemo. We have been able to tweak when and how we give it to him, and these changes have helped significantly.

Over the course of the next two and half years, Michael will be going through ten different courses of chemo. They last different lengths of time, and in each one the drug regimen changes. The first few course are the most intense. Michael’s leukemia is a fast-spreading kind, and it is treated very aggressively at the beginning. The chemo is gradually stepped down in intensity and frequency over time. The first nine courses will take approximately 12 months to complete, with the final course lasting about 18 months. For the first 9 to 10 months, Michael will be getting chemo every week. In the final course, his chemo is bumped down to once a month.

I will never forget passing “the point of no return” when the nurses administered Michael’s first two doses of chemo. I watched the drugs take effect within minutes and completely wipe him out. After the nurses were done, I had to step out into the hallway. Down the hall from his room, there is a corner with seating and windows that overlooks a park (and a cemetery of all things). Over the course of the week and a half that we were in the hospital, I would visit this quiet corner a number of times, sometimes to make phone calls, most times, to bury my face in my hands and sob like a little boy. It’s my job to hold it together for my family, to be their rock, the calm assuring presence in the room. That’s why there were times, when after the dust had settled, I stepped out to “take a walk.”

Michael’s next dose of chemo came on Thursday, February 6th. This particular drug was different and nastier than the original two, and it wiped him out for two days. All day Thursday, Sarah and I tried to get Michael to eat and drink, but he had little interest in either. Consequently, Friday was the sickest and weakest I have ever seen him. Up until Thursday, he had been eating and drinking well, so the nurses had taken him off the IV fluids. With the combination of little food, dehydration, and a potent drug in his system, Michael looked like death walking. At one point, going from the bathroom to the bed, he blacked out on his feet. His body convulsed a few times as I held him in my arms. After a few seconds, he came to and collapsed face first into the bed. The nurse and I rolled him over, and the nurse got the IV fluids going again. Once we got him settled and stabilized, I went for a walk again.

When we met with the medical team later that morning, we made the decision to stay in the hospital at least another day. Michael was supposed to be discharged that day, but he was in no condition to go home. However, I had to officiate a funeral the following day. So after talking with Sarah, we made the decision that I would go home that night, then touch base after the funeral to see what Michael’s status was.

I pulled into our driveway that night at about ten minutes to midnight. It was then that I remembered that I didn’t have my house key with me. My parents were watching my other three children, and I had left my key with them in case they needed to get into the house for some reason. They live thirty minutes away. I called my mom, woke her up, and thirty minutes later pulled into her driveway. I had asked her to leave the key for me on the counter next to her front door, but she had waited up for me. “I just wanted to hug you,” she said. And when she did, my floodgates opened, and I sobbed in her arms for what seemed like an eternity.

“What am I doing to my son?!” “What am I doing to my son!!!” I wailed. I am the head of my household. When it comes to the care and protection of my children, the buck stops with me. I will give an account to God for my choices concerning Michael’s care. And the burden of my decision to allow my son to be subjected to drugs that were wreaking havoc on his body was overwhelming. The guilt is something that I expect I will take with me to my grave. Michael has trusted me unquestioningly throughout this process which in some strange way makes the burden even heavier.

When I finally calmed down, my mom through tears said, “Mike, you are saving his life! You are saving his life!!” It is my hope and prayer that she is right.