Esther and Dan Levy go from despair to cautious hope regarding son Andrew

May 14, 2016 | By Garrett Montgomery More

Esther and Dan Levy are happy that their boy, Andrew Levy, is alive and doing well, just months after they planned his funeral. Andrew Levy, who was diagnosed with acute megakaryoblastic leukemia, had one year to live and his parents made the tough choice to stop his treatment – that decision saved the child’s life.

Esther and Dan Levy

Esther and Dan Levy were planning the funeral of little Andrew Levy, and now they are all celebrating the life of this energetic little boy.

When Andrew was only 14 months old, he fell very ill, and he was diagnosed with a subtype of acute megakaryoblastic leukemia (AMKL). The cancer affects only about 45 children a year nationwide and is much harder to treat. Doctors told Esther and Dan that it was like their child was “bitten by a shark and struck by lightning at the same time.”

According to experts megakaryoblastic leukemia is:

“…is thought to derive from the transformation of a multipotent myeloid progenitor cell. In the adult patient multilineage dysplasia is a common finding and in some cases a minority of myeloid blast cells is present.
The blast cells show one or more megakaryocytic markers (i.e. Factor VIII, CD61, CD41, or CD42), they test negative when using the anti-myeloperoxidase monoclonal antibody and never show coordinated expression of lymphoid markers, though isolated CD2 or CD7 positivity can be found on some occasions. The CD34, CD13 and CD33 markers are positive in a substantial fraction of cases, as is the case with the CD36/thrombospondin receptor.
The myeloperoxidase stain is negative by light microscopy, but ultrastructural peroxidase activity with a specific peri-nuclear staining pattern can be detected at the electron microscopy level.”

Just weeks after getting diagnosed with the illness Mr. and Mrs. Levy were hit with even more bad news. Andrew’s doctor, Norman Lacayo, an oncologist at Lucile Packard Children’s Hospital at Stanford University, learned from Michael Loken, the president of Hematologics Inc., who works in a Seattle lab that he had “a specific phenotype — a pattern of proteins on the surface of the leukemia cell he called R.A.M. (a former patient’s initials) — that independently predicted a terrible outcome, with a survival rate of about one in six. ”

Dan spoke to the New York Times where he revealed that he felt he was in a horror movie after learning his child’s fate. He said:

“Has anyone ever survived this kind of cancer?,All I wanted to know is that it was not impossible. Lacayo said yes, but I felt his answer was “foggy.” The truth was that the team couldn’t find a single equivalent case in the literature.”

A small miracle took place when the family learned that Andrew’s brother, Wills, was a perfect donor match. Andrew underwent two rounds of chemotherapy, but there were still traces of cancer when the transplant was performed in February 2015, putting the outcome at high risk of failure. After the cancer had returned, the family decided that Andrew would go back home, completely stop the treatments and simply enjoy the little bit of time he has left. Esther Levy explained:

“Oh, God, I felt i could not go through it all again. And there was no reason to think it would work. The odds of success during the first transplant had been long; in a second attempt, they would be much more so. But the odds that it would cause all of us more suffering were 100 percent.”

A short while after getting home, the little boy fell sick and was in constant pain. The parents prepared for the worse, asked doctors, friends, and families to tell Andrew a final goodbye. The Times wrote:

“During the second week of July, the hospice team told them to prepare for Andrew’s imminent death. They called a rabbi, and thinking about how Andrew loved airplanes, they picked a Jewish cemetery near the airport. Not wanting him to be buried alone, they purchased grave sites for themselves as well. They established an Andrew Levy Memorial Fund to raise money for music therapy at the Lucile Packard Children’s Hospital.”

However, a real miracle took place. The Times went on to say:

“…the infection that nearly killed Andrew in July had triggered a huge increase in his new white blood cells — and that heightened immune response had attacked not only the infection but the cancer cells as well.”

His body’s response, teamed with his shorter than average stint on immune suppressing drugs gave the tyke the window he needed to fight back. That means stopping the cancer treatments, which would have killed the transplanted marrow cells, helped save Andrew’s life.”

The little boy is not completely cured yet, but his mother happily admits, “day by day we are allowing ourselves to celebrate a little more.”

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