Esther and Dan Levy asked their friends not to tell them there was still hope, but to respect their decision: no second bone-marrow transplant, no palliative chemotherapy for their toddler son.
Andrew Levy had a subtype of acute megakaryoblastic leukemia (AMKL), which only affects about 45 kids a year nationally. His chances of surviving the disease were extremely low, especially as his doctors discovered he had a specific phenotype, which is a pattern of proteins on the surface of the leukemia cell. Essentially, this mean he only had a survival rate of 1 in 6.
However, once he was diagnosed, doctors urged him to get a bone-marrow transplant as soon as possible. Because of this, Andrew’s 3-year-old sister, Lea, and his 5-year-old brother, Wills, were tested, to see if they were a donor match. Luckily, Wills turned out to be a match. Andrew underwent two rounds of chemotherapy before the transplant was performed in February 2015.
This meant that Esther and Andrew spent three months in the hospital, while the rest of the family moved out of their house and into an apartment so they would be able to clean the entire space while Andrew’s immune system developed. Sadly, Andrew’s cancer returned by June. At the time, Esther wrote about parenting a sick child, stating:
“I can’t think of anything more painful than spending time with your precious baby knowing that he is going to die soon. I am no longer ‘raising’ him to grow up to be a wonderful human being.”
By July, the family’s hospice team told them to start preparing for Andrew’s death–a rabbi was also called, and a Jewish cemetery was chosen. Somehow, though, Andrew began to appear to become better, and act more playful. By October, he was able to run and play. His doctors theorized that as his cancer came back, he also had an infection, which meant his white blood cell count was increasing. Thus, his immune response kicked in at just the right moment.
Recently, the family has been able to think more hopefully. Esther told the New York Times that she finally feels OK allowing herself to move on in a healthy way:
“Day by day, we are allowing ourselves to celebrate a little more.”
I hope this means Andrew has made a full recovery–and can start to enjoy just the simple things in life.