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News Every Day |

A Miracle

It is 3 a.m. Central Time and I cannot sleep. Sleep is elusive the night before I travel anywhere but most especially when I know I’m going down to the Houston Medical Center three hours from now. I’m tired, so tired, and I cannot sleep.

It has been months of sleepless nights stretching back to March when I looked across the kitchen table at my son’s golden face and blurted out, “It’s back.” My daughter knew immediately what I was talking about and scolded me, “Mom, you don’t know that.” But I did know that, in the way moms know things they cannot know, and it was confirmed two days later at the hospital. The Severe Aplastic Anemia was back.

First off, Aplastic Anemia doesn’t happen. It happens, but it happens so rarely that it might as well not happen. Leukemia happens. Sickle Cell Anemia happens. They have foundations and fundraisers and celebrities. No one has heard of Aplastic Anemia. Between 600 and 900 people in the United States are diagnosed with Aplastic Anemia in America each year, mostly children and teens. It’s a blood disease tacked onto hematology-oncology departments where doctors treat mostly blood diseases and cancer. The treatment for Aplastic Anemia goes straight to bone marrow transplants. Twenty-five years ago, the mortality rate was 95 percent. Today, the survival rate for first-time patients under the age of 40 is around 90 percent.  That’s how much the science has changed.

My son had a bone marrow transplant for Severe Aplastic Anemia with PNH in 2017. My daughter was his sibling-related donor. They were a perfect genetic match and that gives better outcomes. The transplant went beautifully. It took time to recover, but by the next school year, he was in 7th grade with his peers. No more social isolation. No more constant vigilance. Before his illness, he was one of the best runners. After the transplant, he was the slowest kid. He ran a 12-minute mile and wanted to cry, but fought on. Each month he made progress. By the time he started high school, no one would have known that he had been through such a thing.

The above paragraph does some heavy lifting and makes it seem easy. There were months of transfusions for blood and platelets since his body destroyed his bone marrow. He experienced “conditioning,” which is a euphemism for chemotherapy and immune suppression. His body sat at zero immune cells for the 18 days we waited for the new immune system to take root and “engraft.” It was an agonizing time of waiting on blood test results hoping each day would be the day his body recovered. One day it did. In October of 2017, he was released from the hospital and dumped into flu season. The goal was to keep him healthy so he didn’t end up back in the hospital.

That’s where he is again, now in recovery trying not to get sick.

This July, he was admitted to the hospital where he experienced heavier chemotherapy and, this time, full body radiation, and then the transplant. The donor is a 24-year-old European gentleman who is CMV-positive. That is all we know. We’ve spent lots of time in conversation imagining this young man. He’s jovial. He’s likely from Germany (the greatest population center) or maybe France. And in an exotic twist, he’s of Asian descent because his blood type is B+. We don’t know any of this, of course, but it’s fun to make up a story. What we do know is that this young man is generous. He gave his bone marrow for a stranger halfway across the world. He saved my son’s life.

My daughter couldn’t be the donor again, unless no one else matched. There’s some genetic quirk in our family that scientists haven’t figured out yet, or so goes my son’s doctor’s theory, and rather than risk another bone marrow transplant failure, it was best to get a nonrelated donor. This made us anxious because nonrelated donors can have tougher outcomes. Second-time transplants have worse outcomes. Usually.

That hasn’t been the case here. This transplant engrafted within 10 days. My son was out of the hospital in three and a half weeks. This was after chemotherapy, radiation, and a transplant. He was eating full meals before he left the hospital (no Total Parental Nutrition, which is food through a tube that has its own nasty side effects). He was no longer throwing up. Besides his resplendent bald head and losing a couple pounds of muscle, he looked perfectly healthy. He hadn’t even lost his tan from lifeguarding over the summer before going into the hospital.

For context, normally transplant patients are in the hospital for 30–60 days. Because this was his second transplant and because he would have a tougher treatment course, we were told to expect a longer stay. We were out in 23 days.

My son is a miracle.

I have had a tough time absorbing this illness the second time. A week before admission to the hospital, my son looked me in the eyes and asked, “Am I going to die?” He was searching my face and testing my confidence. “No,” I said, sounding sure. Inside, I was stricken and hoping my expression was neutral.

I have had a tough time finding the words for any of this … really for any topic, not just this. The words, they’ve dried up. I didn’t share the story on Facebook like last time. I kept the news of this to a few friends and to those who subscribe to the mailing list here. My dear friends supported me with food and money for gas and parking and housing by the hospital. It’s crushingly expensive to go through a long-term health ordeal. The hospital is full of people going through worse. I am fortunate. I have a job where my co-workers are flexible and kind. One woman I met at the hospital had to quit her job. Who would care for her son? She had little support and a sick toddler. I felt helpless to alleviate her frustration and hopelessness. She was alone. I was not alone.

People from my church prayed. The priests and chaplains visited in the hospital. We kept communion. This support formed a solid core of strength from which to draw. God answered even my trivial prayers. Having been in the hospital before, I knew that one side of the bone marrow transplant unit was darker. We needed light and so God gave us light. Our room was on the west side and the morning sun bounced off the glass-lined hospitals and gave us a sunrise. Then, around noon, the sun crested our building and sunlight shone in. As the day waned, we’d see the sunset. The room was beautiful, peaceful, and at the end of a horseshoe of rooms. We had one very quiet neighbor — a teen girl, bald and shy, enduring her own pain.

Children who are being poked with needles cry. Children who are barely verbal learn the word “no” too young. “No, mama, no mama!” Mothers pin their babies down so that a line can be placed. The children are bewildered by the treatment; stunned by the terror. Some of the young ones are warriors, hell, all of them are, and own the situation. One such girl was on her third transplant. Like my son, she had an unspecified genetic disorder. She is 6.

There is no room for self-pity in a children’s hospital. Rides in the elevator are exercises in horror. Listless babies and toddlers with growths, self-conscious teens refusing eye contact, they all wear their illnesses like a miserable cloak, their parents hovering over them, faces lined with worry.

I’m not the only one exhausted. In just a bit now, I’ll be driving down to the medical center. It’s a hypnotic journey as cars drive at 70 miles per hour within four feet of each other like a synchronized swarm of bees. My son will be in the front seat, his bald head on a pillow, the sunrise forming a faint glow around his face. He is alive. He is breathing. His color is back.

Tomorrow, well, today, we’ll find out his hemoglobin level. We’ll find out how many platelets he has now. During the worst of it before the transplant, he’d chew up his platelets every four days and have about 2,000 of them. The minimum number he should have? 175,000. The number he has right now? Probably around 70,000. It’s better than 2,000.

His immune system is still growing. That takes time. Months. The first 100 days are the most critical. It’s an arbitrary cutoff, but like the six weeks to recover from surgery, 100 days seems somehow to be magical. We’re at Day 60 or so. Forty more to go of the doctors nitpicking. It’s an apt metaphor because they inspect his head and body looking for swelling, bruises, and signs of anything off. They listen to his heart. With all the transfusions, iron has built up in his bones, brain, liver, and heart. That will have to be dealt with, ironically by having blood drawn out. But that’s for another day when his body is more recovered. For now, it’s about keeping him safe. Helping him heal.

My son is a miracle. He’s a product of prayer. He’s a product of generosity. Multiple people, hundreds, donated blood and platelets that he needed to live. Without them, he would die. He was, for months, transfusion dependent. It’s something relatively small, giving blood. People think less of it than they ought. Giving blood and platelets saves thousands of lives. Four and a half million Americans will need blood each year. Each day, 43,000 pints of blood are used in America. Give, if you can.

Every time I go to the children’s hospital, I’m struck by two things: First, the injustice of all these innocent children suffering, and their parents along with them. Second, that such an edifice exists. Children’s hospitals are places of leap-frogging scientific advancement. So many deadly illnesses are no longer deadly. I see doctors talking excitedly about new treatments. I see nurses lovingly care for and support kids. For every dose of sorrow, there are 10 doses of joy.

This transplant was different. The vibe in the unit, even during the absurd COVID rules that are still in force, was more alive. The parents were chatty. The children more likely to come out of their rooms. There were so many 4-year-olds in the bone marrow unit this time that the hallway looked like a preschool. They had drumming parties and art projects. The parents stood around and talked like they were at a school function. It was surreal and encouraging.

Now, in post-care, we talk. We marvel. We swap war stories and treatment updates while wasting time in the waiting room. And for every one of us, there are 10 more waiting. There are limited rooms and too many sick children. The wheel keeps turning.

It is too much to think about those who will come behind. For now, it’s enough to think about my son. I’m grateful he’s alive. Not all children go home.

I still struggle for the words. I wondered whether to share this at all. In this interconnected world, oversharing is a problem, and anyway, most people don’t care, not really. Because of this, I remained quiet through this storm and shut my mouth except to pray and tell those closest to me, mostly so they could pray, too. I didn’t want to waste words, which would lose gravity in the telling. I chose silence instead.

Should I have remained silent? Part of me still wants to if only to wrap this small chapter in my life away and pretend it didn’t, it isn’t, happening. But this is a miracle, both physical and spiritual, and miracles should be praised openly. Giving blood might seem like a do-gooder thing in the abstract, but my living son is reality. Those small acts of kindness that no one hears about really do matter. That is the same for a blood donation as it is for a prayer donation. Many children receive transfusions. Fewer, but still many, receive transplants. But this course of treatment and the resulting good health my son enjoys is miraculous. If you could only see the doctors’ awe, you’d know.

Cynicism is easy. Indifference and cool irony is the modern way. Materialism is the new religion. Miracles cut through that facade. They challenge the faithless. My son is a miracle. He benefited from the love of his fellow man and of God.

Twice now the impossible happened and twice my son has been spared. He is a miracle. There is no excuse for not living when life is there for the taking. The children who go through this seem to know it intuitively. They live.

***

We’re back from the hospital. Traffic was a beast. A couple-mile stretch on a Houston highway took 45 minutes. Normally, the whole trip would be under an hour. This morning? An hour and a half. This, on an hour of sleep, was not ideal.

The test results, though, are triumphant. Hemoglobin is at 12.3. (Normal!) Platelets at 112,000. (Almost normal!) His blood chemistry, perfect. (No, this is not an exaggeration. It was perfect.) The only hitch in our get-along? His liver enzymes. His liver has been abused and is struggling with some inflammation. His liver needs to heal. He is on three medicines: the anti-rejection drug, a mild steroid, and an anti-viral. That’s it.

Medicine can do a lot, but this kind of outcome transcends what medicine can do. The doctor inspects and shakes her head. It’s all good news. One of the doctors said while we were in-patient, “We’re visiting as a social courtesy. There’s really nothing to say.”

There actually is something to say. You can say it’s a miracle because that’s what it is.

Links:

To register to be a bone marrow donor: Be the Match. Black, Hispanic, and mixed race people are especially needed.

To give blood: The American Red Cross. There is an urgent need right now.

To help families in Houston (Texas Children’s Hospital helps facilitate more bone marrow transplants than any other hospital) in the transplant unit: His Grace Foundation. Parents of a child started a foundation and help buy groceries and gas and everything children need.

The post A Miracle appeared first on The American Spectator | USA News and Politics.









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