Lashed By Storms- CH 15

Mike’s Bone Marrow Transplant

And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. I Peter 5:10

            Mike’s condition grew worse. He developed mesenteric clots, blood clots that were occluding or blocking off the mesenteric vein, located in the tissue connecting the intestine to the back of the abdominal wall. It was then that Dr. Haas told Mike he was sick enough to undergo a bone marrow transplant. Mike and Anne had a special appreciation for Dr. Haas, ever since they had met him for the first time and learned of his expertise with PNH.

            Mike was sent to Wilford Hall Medical Center in San Antonio, Texas, for his transplant. The hospital arranged for nearby apartments for Anne and Noah, and later for more of Mike’s family.

            Before the transplant could take place, Mike was started on a high dose of chemotherapy drugs for one week. The drugs were powerful, and designed to entirely destroy his bone marrow. It would also destroy anything else in his body where cells rapidly replicate—hair, salivary glands, reproductive glands, and various areas of the gastro-intestinal tract.

            “I was there when Mike asked his doctor where the point of no return was with the chemo drugs. He was told there was no going back after the first dose. Mike held that first pill in his hand for a moment. He looked at me.”

            “I’m doing this for you and Noah,” he said, “because I want to get better for the two of you.”

            “We both knew he was swallowing poison—no one can survive without functioning bone marrow. He told me he knew every time he took a pill he was intentionally poisoning his body—I could see each day it was becoming harder and harder for him to swallow those drugs. The nausea they caused was terrible.

            “Each day Mike made comments about his brother, David, who would be his marrow donor. His tone was one of joking, but I knew he was serious. Mike didn’t want David doing anything other than sitting on a couch; he wasn’t to take a shower in case he fell, he wasn’t to handle kitchen knives, or go for rides in a car. Mike wanted David available and without injury when transplant day came.

            “Mike was so sick, and I didn’t want to leave our son with strangers, so we were thankful Rex and Lorraine were willing to come and care for Noah. By then, he had outgrown his colic. His grandparents were given their own place to live, but Lorraine came to our apartment to care for Noah. I was so grateful for her help.

            “After their mom’s death, Mike and his brothers had been concerned that Rex was getting too close to Lorraine. We soon learned it was her quiet faith and calm personality that helped Rex get through those first few months following Barbara’s death. And soon, Rex realized he not only needed ‘Rainy,’ as we affectionately came to call her, but he also loved her. They were married March 24th, 1995, a little more than eight months after Barbara had passed.

Fighting for Life

            “My husband was fighting for his life, having to swallow more pills each day, and together we prayed the transplant would work. We were also considering what would be best regarding our future with the Navy.”

            The biggest question the Schlegels faced was whether or not Mike should take medical retirement. If he did, and wanted to come back after the transplant, the Navy wouldn’t have to take him. If he retained his active duty status, but didn’t survive, Anne and Noah would receive better benefits than if he had retired. After considering their options, Mike determined it best to extend his active duty status.

            As a doctor, Mike had often been involved in making decisions about others’ ability to serve; now, doctors with higher ranking than his would make that decision for him. Meantime, he would continue drawing his same salary.

            “Shortly after Mike’s chemo treatment was begun, his brother David, David’s wife, and their eight-week old son came to San Antonio. They were also provided an apartment close to the hospital, but during the day, Rainy would take care of Noah and his cousin in our apartment.

            “David would indeed be Mike’s marrow donor. His tests matched all the critical criteria—he couldn’t have been a more perfect match. David was advised to take no unnecessary risks, but if something did happen to him, then their brother Steve would be the donor; his test results showed him to be a seventy percent match.

            “I watched, day after day, as Mike continued to lose weight. He had become so weak he couldn’t read from the Bible. Each night, I read Scripture to him. And I prayed. I prayed with him about every ache, sore, and pain. Somehow, Mike would find the energy to then say a short prayer.”

Transplant Day

            The day came when tests confirmed there was little use in administering any more chemo. Mike’s bone marrow had been destroyed. The transplant team finalized the last steps for an allogeneic transplant—one in which the donation of marrow comes from a family member.

            Mike and his family knew, even with a family member donating, there was a risk of graft versus host disease (GVHD). This occurs when donated cells see the recipient cells as foreign and begin destroying them. It seemed ironic but Mike’s doctors actually wanted to see a little bit of GVHD. It would indicate a healthy balance of cells.

            While David lay on his stomach, a needle was inserted into his hip bone, and a liter of stem cells and blood was aspirated. When doctors were satisfied they had enough of the soft, spongy material, it was filtered to remove fat and any bone particles.

            David wanted to be present as his donated marrow dripped into Mike’s body. He was wheeled into the room in a recliner. A nurse hung the IV bag containing the stem cells and blood on a pole beside Mike’s bed.

            “All of us—Rex, Rainy, David, David’s wife, and me—stayed for the hour it took for the IV bag to empty. We had a nurse stay with the boys for that period of time. When Rainy returned to our apartment, she continued her practice of keeping detailed notes about every bottle feeding and diaper change for both babies.”

            “Mike was conscious of what was happening as his brother’s stem cells dripped into his body, with no idea of what would follow. Shortly after the IV bag emptied, he began feeling worse. The impact of the chemo was now attacking his entire body. He had already lost his full head of thick brown hair; now he had no body hair anywhere. There were scalloped edges on the surface of his tongue, and the insides of his mouth hurt.

            “Mike couldn’t eat; he developed body sores. His eyes couldn’t produce tears. One day he looked at me. I wasn’t surprised at what he had to say.”

            “’I just want to be left alone.’”

            “So, you want to lie here and die?” I asked.

            “You don’t know how I feel,” he responded.

“I wasn’t about to let Mike die. His doctors were doing all they could for him, and I was going to do the same.

            “One thing Mike’s medical team emphasized was how important it would be for him to move. I knew that was the last thing he felt like doing. I decided to be his cheerleader, going so far some days to wear a cheerleader outfit with a big letter M on the front.

            “Several times a day I would work with Mike—helping him to move his arms and legs. I remember the first day he could only move for four seconds. And I remember the day he managed to move for five seconds.

            “On day six, when I went to work with Mike, I found him delusional. He was hallucinating and had a fever of 104. Doctors immediately placed an order for a blood transfusion. After that, he perked up a bit.

Good News

            Day eight came, and with it came good news—engraftment—the day everyone had been waiting for. The transplanted stem cells were now making their way to what little was left of Mike’s bone marrow and starting to make new blood cells.

            In spite of engraftment, Mike remained at risk for bleeding, infections, anemia, nutritional problems, and the possibility of damage to his liver and kidneys; any of which could be brought about by GVHD.

            Mike’s blood counts were continuously monitored. Nurses watched for symptoms of fever, infection, dry eyes and rashes. Their patient had dropped one hundred pounds. He resisted having to move.

            “Every day I was there, forcing Mike to get up, to stand beside his bed, and to shuffle in a tight circle before collapsing back on the bed. He hated every minute. But without me, he wouldn’t have moved; he wanted to be left alone. I knew it was only through his iron will that he would comply with my never-ending efforts to make and help him move.”

            Ever so slowly, movement became a bit easier for Mike, to the point that Anne felt comfortable leaving him for a few hours so he would rest. She would then spend time with Noah.

            “During that time period, Noah began crawling. It was such a joy to watch him. When I told Mike about our son’s achievement, we couldn’t help but recall celebrating Christmas for the first time with baby Noah.

            “All Mike’s family, including Rex and Rainy, had joined us at our home that first Christmas. Mike read the story of Jesus’ birth, and as he did so, I re-enacted the story with puppets. Then, our family joined hands and prayed. It was the beginning of an on-going tradition.

            “That first Christmas with Noah I started a gratitude journal. The book is large and bound with wood. In what would become another family Christmas tradition, each of us, including the children when they were old enough, would write about things that happened during the year, referencing challenges and blessings.”

Mike Comes Home

             A month passed before Mike was dismissed from the hospital to live in the apartment unit. By then, his dad and Rainy had gone home, and so had David and his family. An environment that more closely resembled home felt good to Mike, even though a nurse came every day to check on him. It was also a nurse who made sure Anne was using the wash recipe the hospital had provided for her to use to clean Mike’s food. She had to re-wash lettuce that had already been washed. She would take this precaution for two years.

A Call from Home

            Before Mike’s surgery, he and Anne had made arrangements for their dogs and their home to be cared for. They reached an understanding with a couple they felt they could trust, who needed a place to stay while having a house built. The couple would stay in the Schlegel home during the building process, and be ready to leave by the time the Schlegels could return to Virginia.

            This couple was calling Anne to let her know Sam wasn’t doing well—she wasn’t moving. Anne was devastated.

            “Not one of the dogs. Not Sam. I couldn’t bear the thought of either of them failing. We’d been through so much together, and I treasured their love and companionship.

            “I quickly made arrangements for a nurse to stay with Mike and I bought a one-way ticket to fly home. Darlene picked me up at the airport and drove me to the house. I wanted the place to myself for the night; I needed to be alone with Sam and Max.

            “Sam’s back legs were paralyzed and it was obvious she hadn’t been brushed or well cared for while we were gone. I sat on the couch and held her, stroking her and sobbing over my twelve and a half-year-old companion. The thought of losing Sam tore a hole in my heart.”

            After a night of crying and no sleep, Anne carried Sam to the car. Max jumped in and they headed for the vet clinic where Anne used to work. She’d called ahead and the vet met her at the front door. Anne carried Sam to the back room, not an easy task given the dog’s size.

            “I knew there was no hope for Sam to recover from renal failure, and I was thankful my former boss was kind and gentle in administering drugs that would free Sam from her pain. I had our beloved pet cremated, and the clinic agreed to hold her ashes until Mike and I were back in Virginia.

            “When I got home, I packed up our roller-skate car. I needed to get back to Mike and Noah, and there was no way I wanted to leave Max behind. I could care for him in Texas, and I figured it might be good for Mike to have Max around.

            “Our home away from home wasn’t designed for a 115-pound dog. But Max didn’t know that. After giving Mike an affectionate greeting, he ran around the unit. We were sure he was looking for Sam.”

Anne’s Feelings

            “Living with Mike post-transplant was a challenge. He couldn’t handle noise—even the slightest sound in our living quarters was difficult for him to tolerate. It didn’t matter if it was a drippy faucet, a passing car, or Max playing with a toy.

            “The side effects of the transplant were enough to drive both of us crazy. Mike was sick often; flue, diarrhea, and fever. My efforts to be meticulous with hygiene when cleaning and preparing food weren’t enough. His immune system was extremely compromised.

            “I continued to miss the attention Mike had shown me while dating; and living with him after his diagnosis of PNH had changed the dynamics of our relationship even more. Hugging him since that diagnosis had been like trying to hug a porcupine—I never knew what would set him off.

            “Thanks to PNH, our physical relationship had fallen apart. It was only during times of physical intimacy that I felt special, that I was the only woman Mike loved, and that I was the only woman who could satisfy him. Only during those times did I feel treasured.

            “I gave up expecting anything from Mike—no hugging, no touching, no good night kiss, no acknowledgement that I was his wife or lover. The only thing I did expect from Mike was for him to treat me with respect.”

            Anne quietly contemplated the changing realities of her broken relationship with Mike. She decided that when he was feeling better, she would seek legal separation, making sure he would have full visitation rights. She wouldn’t deny Noah time with his father.

            “I didn’t believe in divorce; my best and only option was legal separation.

Home to Virginia

             In September 1998 his doctors determined Mike was well enough to go home. His release from the hospital came sooner than anyone had anticipated, and it was welcome news. Anne couldn’t wait for their family of three to be back in their Virginia house. She looked forward to praying a blessing over Noah with Mike every night as they tucked him into bed.

            “Saying goodbye to doctors and staff at Wilford Hall was bittersweet. Mike had received excellent care, and every doctor and nurse had been respectful and kind. Mike had been the ultimate fighter, unwilling to give up. Staff shared that when they thought Mike might give up, I was there. They found me to be a loving and supportive wife, every day. They said that wasn’t the case with every couple; their words and actions let us know they thought highly of us. They might have thought differently if they had known I was planning to leave Mike.

            “I called the couple staying in our house to let them know Mike was doing so well we were coming home early.

            “’You can’t do this to us. Our house isn’t ready.’” they said.

            “Their response left me dumbfounded and angry. I couldn’t believe what I’d just heard from people for whom we had provided free housing and utilities. They didn’t seem to care Mike was well enough to come home, and they made it clear they had no intention of leaving.”

            With plenty to do to prepare to bring Mike home, Anne didn’t have time to deal with the ungrateful couple. She made a phone call.

            “Two elders from our church were more than willing to help; they had to call the police to have the couple evicted. Mike and I soon learned the two weren’t having a home built; they were merely taking advantage of our situation.”

            Once home, Anne couldn’t get the house cleaned fast enough; it had been left in filth and disarray. After having the carpet shampooed, she and Mike enjoyed watching as nine-month-old Noah crawled and explored his new environment. Mike continued to improve, and his steroid medications were being tapered.

            “With Mike feeling better each week, I was ready for a change of pace. I’d been so focused on Mike since his diagnosis, and then focused on being a mom and a caregiver, that I needed to get out of the house and live a more normal life. I wasn’t even sure what “normal” meant.

            “Getting out of the house to meet up with Darlene to clean other people’s houses was just what I needed. I didn’t have to keep tabs on medications and schedules, and I didn’t have to talk to doctors and nurses. It was great therapy and the cash wasn’t a bad deal either.”

One Year Later

            Not until May 1999 did Mike come off steroids permanently.

            “While I was thankful Mike was making progress, I found his behavior unnerving. Tough as his erratic personality had been to handle, I had managed to adapt to his difficult temperament. Now he was a bit easier to live with and I didn’t know what to do.

            “I observed Mike’s behavior becoming more logical, more reasonable. I couldn’t help but like him a little bit. And my liking him, even a little, threatened the walls I had so carefully put in place to protect myself.

            “My plan to file for legal separation was in place.

            “But I had to wonder how Mike would react, once he knew.”

***

Mike had been through tremendous physical challenges. He and Anne had been through tremendous emotional challenges. All of it was more than any couple should have to bear; it was their unshakable faith that had carried them through. After all they had shared with me, I had no clue how Mike would respond when he learned Anne desired a legal separation—maybe she would change her mind. Mike had fought for his life. Would he fight for his marriage? And if so, how?

Chapter Fifteen

Scripture quotations are from The Holy Bible, English Standard Version,

Continue to Chapter 16

Return to Chapter 14