project-38-sebastian
 

Sebastian finished cancer treatment in September 2016.

He’s off to first grade now, with a full head of hair and a good prognosis.

Gone are the stomachaches, leg pains, and mouth sores. Gone are the fourteen different medications, weekly clinic appointments, and middle of the night emergency room visits. 

Many families feel apprehensive as the end of treatment approaches. After all, it’s the chemotherapy, as awful as it is, that’s protecting their child from cancer’s return. With leukemia, the first aggressive month long chemo session is intended to send the cancer into remission. The following two years of therapy provide a protocol to dramatically decrease the odds of relapse.

As one doctor explained to Michelle, Sebastian’s mom, using a sports analogy —

The first month is offense, and the following two years are defense.

For Sebastian, the season is over and he’s come home a winner. Instead of worrying about the possibility of relapse, Michelle is choosing to celebrate.

“Cancer robbed him of so much. But now, while cancer is not part of our lives, we are going to enjoy every minute. It feels great. He can go back to being a kid.”

It was hard for Sebastian to be a kid these last several years. His cancer journey began when he developed a strange mass on the side of his neck. The pediatrician sent him for some tests and eventually a biopsy. But the weekend before his biopsy, mom noticed his chest had swollen. It was Michelle’s dad who insisted she not wait until Monday but rather call the doctor immediately. The family was sent to the ER and quickly admitted to the pediatric intensive care unit. Both the mass on Sebastian’s neck and the mass in his chest were leukemia cells. Doctors said his airway had nearly closed off.

If they had waited until Monday, he might not have awakened in the morning.

There is nothing worse than watching your child suffer. Because of his airway occlusion, Sebastian couldn’t be sedated for a spinal tap. Because he needed to be monitored so closely, he had to spend another week in the PICU. And when the family could finally leave the PICU, Sebastian sobbed because he thought he was finally going home, when in reality he was only moving a few floors away. 

The months and years that followed consisted of clinic visits, chemo rounds, and steroid treatments. And because Sebastian had t-cell leukemia, in addition to the drugs, he needed radiation therapy. Michelle’s husband broke down when his little boy had to be fitted for a radiation mask, a mask that would show doctors exactly where to aim the beam. 

And if cancer stole part of Sebastian’s childhood, it also stole some of the joy of parenting from Michelle.

Michelle and her husband Herberto have two younger children at home. Their baby, Kaden, was only six months old when Sebastian was diagnosed. Michelle can’t even remember when he started walking.

“I was a regular mom, and cancer took that from me,” she says. “I had to be at the mercy of this disease.”

Now that treatment is over, the family opted not to have Sebastian’s bone marrow tested. The results might show traces of leukemia. They might show nothing at all. But it won’t give the doctors any useful information regarding Sebastian’s chances of relapse, so they’re moving on. “We went through two years of hell and we’re stronger because of it. We’re going to enjoy the life we’ve been given.”

When Sebastian went into the hospital that day in July, he didn’t come out for a month.

It was the middle of summer when cancer interrupted his childhood.

For his “Make-a-Wish,” he didn’t want a trip, but rather an above ground swimming pool in his backyard. Maybe so he can extend all his future summers out a little longer.

Sebastian, 6

Diagnosed with High-Risk T-Cell Leukemia at 4