Luca's story
Luca was a normal, happy child in every way until mid-December 2004, when, two months shy of his third birthday, Luca began to show symptoms such as lethargy, vomiting (especially in the morning), head pain, and an unsteady walk. The symptoms were especially unusual because Luca still had an appetite and did not present with a fever. His pediatrician decided to rule out other more serious causes, and ordered a CAT scan.
On January 4, 2005, Luca’s CAT scan revealed a large tumor at the base of his brain that was preventing his spinal fluid from draining into his spine. The trapped spinal fluid was causing his brain to swell which was manifesting in the aforementioned symptoms. Luca was rushed to Boston Children’s hospital where an MRI confirmed the presence of the tumor.
On January 5, 2005, Luca underwent a lengthy and major brain surgery to remove the tumor. One hundred percent of the gross mass of the tumor was removed, but it had already disseminated throughout the layer of his brain and been delivered to his central nervous system through the circulation of his spinal fluid. This remaining dissemination and spread was inoperable.
Luca was introduced to The Dana Farber Jimmy Fund Cancer Institute in Boston, a pediatric outpatient cancer facility that partners with Boston Children’s Hospital. Luca’s pediatric neuro-oncologist estimated his chances of survival to be approximately 60% (“survival” is defined as alive after the expiration of five years). The gold standard in treating medulloblastoma is by high dose radiation therapy to the entire brain and spine, followed by chemotherapy. Unfortunately, however, radiation therapy was an illusory option because of the intense adverse and irreparable neurological and developmental side effects that such therapy would surely impart on such a young brain.
From Luca's eulogy
...The night before his last MRI, Luca held his Momma tightly all night long, and before he fell asleep, said 'Momma, hold me here, in this house, in this bed, forever.'
Therefore, Luca’s parents were given very few options, all of which were extremely unattractive. It was determined that the best course of action would be to enroll Luca in a protocol of five rounds of intravenous high dose chemotherapy using six different chemical agents. His stem cells would be extracted and harvested, and, at the expiration of the fifth round of chemotherapy, Luca would undergo a final round of chemotherapy which he otherwise would not survive, except for the reinsertion and regeneration of his stem cells.
In mid-January, a port was inserted into Luca’s chest so as to permit access to his veins for delivery of the medications and easy extraction of blood samples. But, while it was necessary to start chemotherapy as soon as possible due to the aggressive nature of the cancer, the commencement of the protocol was not permitted because it was first necessary for Luca’s surgical incisions to heal. Then, at the end of January, Luca’s brain began to swell again and he developed a seizure disorder, all likely due to the quickly spreading cancer. Another brain surgery was performed, this time for the insertion of a shunt so as to promote artificial draining of his spinal fluid.
Luca made it through two rounds of chemotherapy which necessitated frequent transfers to the intensive care unit of Children’s Hospital. He endured hundreds of painful and undignified medical procedures and was unable to eat following his January surgery. An MRI performed in mid-March after his second round of chemotherapy revealed that the spread of the cancer had shrunk by approximately 25%. Luca was discharged to his home for one week, but, after five days, suffered a massive seizure which required that he be intubated and hospitalized. Another MRI revealed that, during his five day break, Luca’s cancer had completely grown back; the 25% reduction had been replaced in a matter of days with 30% growth. Therefore, Luca was removed from his chemotherapy protocol. The doctors recommended radiation therapy as his last best chance, despite the devastating neurological consequences.
For six weeks, Luca underwent daily radiation therapy which necessitated that he be anesthetized per occurrence. However, the cancer continued to grow and spread rapidly despite this new course of action. A subsequent MRI revealed that tumors had begun to grow on Luca’s spine, and that the cancer was out of control. Luca was discharged to home, where his parents provided his care until his death on June 29, 2005. During his last days Luca went paralyzed due to the spinal tumors.