His longest hospital stay lasted almost seven months, during which he nearly died twice from complications that caused kidney failure, as well as heart, lung and liver disease. Finally, he went into remission in September 2008 and reveled in a healthy year blessed with the mundane miracles of childhood.
And Paul and Maria allowed themselves to exhale.
Ten weeks ago, routine follow-up tests indicated that Kyler's cancer had returned. This time, his treatment options are few, since recurrent neuroblastoma brings with it an entirely different set of medical considerations than the ones associated with an initial diagnosis.
Kyler's CHOP oncologist, Stephan Grupp, says that Kyler needs a treatment called MIBG therapy, in which a radioactive drug, delivered intravenously, travels to tumor sites, slamming them with radiation.
Depending on how Kyler responds, he may need up to three rounds of MIBG to knock his cancer back into remission.
MIBG is "less toxic than chemotherapy, and is usually tolerated well by patients," says Grupp, a world expert in neuroblastoma, thanks to CHOP's status as a national referral center for kids with the rare disease. MIBG therapy is the only effective treatment available to Kyler at this stage of his illness. Without it, he won't live to see his sixth birthday.
Unbelievably, Kyler's insurance carrier, Harrisburg-based HealthAmerica, has denied coverage for the treatment, which it considers "investigational/experimental" because there is "inadequate evidence in the peer-reviewed published clinical literature regarding its effectiveness."
The therapy is not approved by the Food and Drug Administration, another criterion that HealthAmerica requires.
