Three years ago today, my youngest son, Eli, spoke to me. He was 7 years old and he had not spoken for exactly four months. The words were hard to understand and they came slowly, with painstaking effort. But he spoke. “I love you, Daddy.” Pretty sweet, huh?
But I am starting in the middle of the story. Here’s the rest:
On November 12, 2010, Eli had just run his third 5k race. For the second time, he finished in less than 30 minutes. He hadn’t been feeling well for a few weeks, but he ran really well that morning.
Four days later, a CT scan revealed a 3.5 centimeter mass in the posterior of his brain. On November 17, Riley Hospital neurosurgeon Dr. Joel Boaz removed the tumor. Eli sustained a complication from the procedure called Posterior Fossa Syndrome, and he was unable to swallow, speak, or control most of his body while his brain started the process of rewiring itself. A shunt was placed in his head to assist the drainage of fluid from his brain.
In the meantime, an MRI revealed that the cancer had metastasized to his spinal cord and to other portions of his brain. Riley oncologist Dr. Melissa Markel led his cancer care, and along with Dr. Boaz, remains one of our favorite people. Dr. Jeffrey Buchsbaum, a radiation oncologist at the IU Proton Therapy Center in Bloomington, drove through an ice storm the day before Thanksgiving to discuss the benefits of proton radiation therapy, as opposed to standard photon radiation. He was adamant that proton therapy could benefit Eli, and with fewer side effects (like secondary cancers) than standard radiation. He was very persuasive.
After 30 treatments in Bloomington (riding in an ambulance each way from Riley), Eli was cleared for chemotherapy. The remaining portion of the primary tumor was reduced in size by over 50 percent during radiation. We could smell victory.
Eli had a complicated course, with shunt infection and removal, multiple gastric surgeries to try and address nutrition, and the blood count issues that are common with chemotherapy. We spent nearly 10 months at Riley, with only a few times when he could come home.
We worked in shifts: Eli’s mom, Angela, stayed at Riley through the week while I stayed with Eli’s older brother and sister. On the weekends, the roles reversed. Spending that amount of time at Riley, we developed a strong bond with the staff and health care professionals. The nurses in particular became like members of our extended family.
Eli’s primary nurse, Debbie Andersen, was absolutely vital to our ability to care for Eli and still maintain our sanity. Often, Debbie (among many others) would sit with Eli to allow us to go for a sanity-preserving run.
Eli slowly improved. After four months, he could speak. After eight months, he could eat. After a year, he could walk with a walker. Now, he can sometimes walk short distances without a walker. Last summer, he went to a multiple-band rock festival. He is back in school and, until a recent fundraiser for the St. Baldrick’s Foundation, he even had some hair to brush.
Eli is still slowly improving. He has goals. He wants to walk again. He wants to run again. He works diligently to achieve those goals. The physicians, nursing staff, and therapists at Riley and at IU Proton Therapy Center have all done their part; without them, Eli would not be here.
We are profoundly grateful for their hard work, their dedication, and their personal investment in Eli and in our family.