Chapter Fourteen
Chapter Fourteen
Scripture quotations are from The Holy Bible, English Standard Version,
copyright © 2001 by Crossway, a division of Good News Publishers.
Used by permission. All rights reserved.
The Tipping Point
Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shadow due to change. James 1:17
When Anne and Mike left the hospital with Noah, Anne had complete peace that the adoption would be final after the mandatory twenty-eight day waiting period. She had worried prior to that time, though, and now it was Mike who had no peace.
“Those twenty-eight days were the hardest part of the entire adoption process. I wanted the same feeling of peace as Anne, but I was afraid to answer the phone. I feared it would be Helen calling, telling us she had changed her mind. That time was rough, very rough for me.
“There were times I’d watch Anne with Noah. I was so thankful for who she was as a wife and a mother. She had far more patience with Noah than I did. There were times our son would cry non-stop for three hours or longer. I could take that for only so long; then I had to leave the house.
“As a doctor, I knew there were parents who had no patience with colicky babies; those were the infants we’d see in the emergency room, often with bruises, symptoms of shaken baby syndrome, or worse.
“I quickly learned how challenging it can be to deal with a crying baby, particularly a colicky one. What I’ve never come to understand is how any parent could hurt a child. When I first observed Anne protecting Noah on top of the dryer, while they both got some rest, I was amazed. Actually, I think I appreciated Darlene’s suggestion more than Anne did.
“It was important to me to have the full experience of being a father, and I was more than willing to help with feedings and diaper changes whenever I was home. Sometimes Anne would take me up on my offers, but not as often as I would have anticipated. She relished everything about being a mom.”
Mike continued to stress over finalization of the adoption until the attorney he and Anne hired was able to procure a correct birth certificate, accurately listing their son’s name as Noah David Schlegel.
“That last day in court was a huge relief for me. Now I could have the same peace as Anne—the three of us were indeed a family. There was one moment I thought something might go wrong, when I saw that Helen’s dad had come to provide his daughter emotional support. We also learned Noah’s birth father had finally let go of his earlier objections to the adoption.
“It was a great moment watching the judge sign the final adoption paperwork.”
Different Concerns
Once Noah’s adoption was final, Mike’s concerns were for himself. His symptoms were getting worse. It didn’t help that he pulled twelve-hour shifts more than twenty times a month, and after each shift spent another three to four hours completing patient charting. Some days he also had to attend lectures and labs.
“The work demands were brutal. It seemed hypocritical for me to advise patients to get more rest when I was continually sleep-deprived. Along with the fatigue I was experiencing anemia, worsening esophageal spasms, severe gut cramping, and tea-colored urine. I knew, from the urine, that my body was flushing out ruptured blood cells that were releasing their contents, forcing my kidneys to work overtime.
“There were times I was so sick that I wound up as a patient in the same emergency room where I worked. Efforts to control my symptoms weren’t working as well as when I had first been diagnosed."
Remembering His Diagnosis
Mike had a hard time walking through the doors labeled hematology/oncology. He was there for a blood test—one his doctors had ordered following another bone-marrow biopsy. He knew the lab technician would be drawing blood for a sucrose fragility test, and he was nervous.
“At first, the chit-chat between the lab tech and me helped ease my tensions. She got excited about the reason for my test, though, since she’d never done one where PNH was suspected. She glanced up from her work to tell me she hoped it came back positive.
“When she saw the look on my face, she seemed to realize the impact of her statement. She apologized, but that ended the chit chat.
“The moment she finished the blood draw I headed straight for the hospital administrator’s office and registered a complaint.
“I was really mad and I was hurt. To this day, I use that example when I work with new doctors. Honesty is appropriate, but to make a comment to a patient the way the lab tech did, is not.
“At the time of my diagnosis, my faith wasn’t as strong as Anne’s. For a long time, I was in a state of disbelief. I couldn’t have PNH. An oncologist told me the only possible hope for a cure was a bone marrow transplant. I was thankful my brothers had agreed to be tested as potential marrow donors. But no matter how bad I felt, Dr. Haas would always tell me that I wasn’t sick enough to have a bone marrow transplant.
“This meant the inherent risk of a transplant didn’t outweigh the potential benefit. The thing was, I’d almost have to be close to death for the benefits of a transplant to outweigh the many risks. The risk/benefit changed when I developed blood clots in my gut.
“And then, when I thought I couldn’t possibly feel worse, shigellosis struck. That’s a debilitating form of diarrhea, characterized by bloody stools. And it’s highly contagious.
“I was so sick, I called Dad, thinking it might be time to say goodbye. During our conversation, I filled him in on my health. I could tell he was devastated. As we ended our conversation, I told him how much I loved him.”
Asking Why
“As my health continued to deteriorate, there were many times I questioned God, wanting to know why.
“One of the main times I asked that question was when I would watch Anne care for Noah. I was concerned about how to make sure my family was provided for once I wasn’t around. The very thought of not being there for them brought tears to my eyes.
“I wanted to watch Noah grow up and I wanted to be there for his first day of school. I wanted to be the one to teach him how to throw a ball, and ride a bicycle. I wanted to experience all those moments and more. With a shortened life expectancy, I was left to wonder how many of them I would miss.”
Mike reached a point where he didn’t think it was possible to feel worse. He quickly learned otherwise. To thin his blood and to keep clots from forming, his doctors prescribed Coumadin. And, he was reluctant to admit, they also prescribed estrogen to help strengthen his red blood cells.
“As if those drugs weren’t enough, I was also taking prednisone to help keep inflammation at bay. That drug suppressed my immune system, caused me to gain weight, and contributed to even greater changes in my personality and behavior. I couldn’t live this way much longer.”
The scales had tipped. Mike had reached the point where the benefits of a bone marrow transplant would outweigh the risks. There was no choice but to take this critical step.
***
I couldn’t identify with Mike’s feelings. As a parent, I’d never had reason to think about my husband having to raise our daughter without me. Anne knew Mike would survive. But she didn’t know what the two of them go through before he would re-gain his health.