Medical miracles
Ihave had intimate knowledge of a few hospitals in my life. Unfortunately, now is one of them. But as with every other time, I feel profoundly grateful for the care, the science, the treatments and the research behind it all.
My daughter, Tricia, was born with a complete cleft lip and palate. Later we learned that there were other systems affected. She’s had about two dozen surgical procedures over her lifetime.
But through it all, almost all of the medical and dental professionals I dealt with were extraordinarily skilled, compassionate and patient in teaching me how to care for my only daughter.
The views out the hospital windows changed with each hospital, but the cheery competence comes pretty standard in American medical care.
Most of the time, our insurance paid for her costs, but early on, when we were poor students, the children’s hospital covered the extra costs with donated money.
How humbling! How grateful we were as skilled surgeons, nurses and hospital staff worked the miracles of corrected nature’s errors. What an incredible relief in a highly stressful time, to learn that kind people would take care of our child without sinking us into fathoms of debt.
Now, I watch Tricia going through the same thing with her oldest daughter, Grace, but in a much more acute vein.
She’s always been a patient, cheerful little girl. She has blonde curls with large, thoughtful blue eyes.
It took almost a week to figure out that something more serious than a typical childhood virus was attacking her. Her fever wouldn’t go away, and it didn’t respond to analgesics. A blood test showed that her liver was in distress.
So the tests began. The team of doctors and nurses started treating possible infections with antibiotics as they waited for test results. They gave her a hefty dose of steroids. They soon ruled out Rocky Mountain Spotted Fever, Lyme’s disease, leukemia and lymphoma.
Miraculously, Dr. Ashraf Mohamed, with special expertise in hemophagocytic lymphohistiocytosis works in the St. Jude’s affiliated clinic at The Children’s Hospital at Saint Francis in Tulsa. He recognized the symptoms, ran the tests and acted promptly.
HLH is a blood disorder where the immune cells in the blood go rogue and begin devouring healthy cells. The liver, kidney and brain are possible victims. Under a microscope, technicians can literally see the macrophages consuming healthy cells.
Grace is just 2 ½. The steroids continue, and HLH responds well to chemotherapy when caught early. Her blood was sent to the HLH treatment center in Cincinnati for genetic testing. If her HLH is genetic, the only cure for Grace will be a bone marrow transplant.
Grace was in the hospital for 10 days. Once the HLH was diagnosed, she was transferred to the care of the St. Jude’s-affiliated clinic that specializes in childhood cancers and life-threatening blood disorders. She returns to the clinic each week for dressing changes on her PICC line (a small tube necessary for chemo, inserted through her arm into a vein near her heart). Her parents already are expert in flushing the PICC line three times each day and administering her array of meds.
A social worker sat down quietly with Tricia yesterday while we waited for Gracie’s blood work results to come back so Grace could proceed with her chemo treatment. She explained that once her family health insurance has paid its portion, the remaining medical expenses related to HLH are covered by donations to St. Jude’s.
How humbling it is! How grateful we are!
Grace is responding well. Her blood work showed progress, and her doctors and nurses are guardedly optimistic.
The steroids make Grace ravenously hungry, cranky and too antsy to sleep well. Her body is still slender, but her belly is round and hard.
Children and sometimes adults die of HLH all over the world, but here, where doctors are more apt to catch it in time and have access to the treatments and medicines, patients have a better chance of survival.
Thanks to the gentle medical providers, generous donors, thoughtful researchers and a benevolent, kind medical culture in the U.S., lives are saved and improved every day of the week.
This time, it’s going to be our little Grace.
Only in America. God bless it.