Our Fifth Extreme Isolation - Gordon H. Chang

Over the past 16 years, my family has experienced four extreme self-isolations. Not just social distancing, but real lockdowns where we had almost no contact with others for months, not just weeks. As is true in the present crisis, we isolated for medical reasons. We faced cancer.

Hundreds of thousands of others around the world who have had risky pregnancies, organ transplants, or illnesses that required immune-suppression have known self-isolation. The experience has not been uncommon in the contemporary era. In those cases, being isolated was a matter of life or death. In the face of a mortal threat, my family embraced isolation and the hope it provided.

Seventeen years ago, when my daughter, Chloe, was just 15 months old, she was diagnosed with a rare, very aggressive, and deadly variety of leukemia. Without treatment, she would succumb quickly. Drug therapy suppressed the disease for a while, but doctors said that she needed to undergo a stem-cell transplant, where drugs would be used to wipe out all the white blood cells, the core of the immune system, and, they hoped, all evidence of disease. The introduction of “clean” stem cells would then rebuild the immune system over time.

The procedure was relatively simple, but the recovery was agonizing. Because Chloe had no immunity, she had to stay in a double-door isolation room for months afterward, as her system slowly rebuilt. The only social interaction she had was with medical personnel and a few relatives and friends. I came and went to work. My wife, Vicki, self-isolated and lived 24/7 with our toddler. Not even a window could be opened for fresh air.

Our daughter could not leave the 15’ x 15’ hospital room for months. Because this was before the digital revolution, we had no smartphones or computers. We did have an in-hospital entertainment system that offered Sesame Street and Baby Einstein. We had clean toys right out of the box. We bonded in the luxury of the given time. We laughed, and we cried. We did not despair but held on to hope.

Eventually Chloe was released and returned home, where we practiced what is now called extreme social distancing. She was severely immune compromised for months. But we gave thanks for the possibility of recovery that isolation offered.

Six months later, the aggressive leukemia returned and we faced another transplant. This time a more difficult procedure involved rebuilding her immune system with cord blood from her newborn sister, Maya. Again, there was the extreme isolation followed by social distancing for months. But we persevered, and she fought back the disease.