Tiny trooper marches on

Patient's Name: Owen S.
Parent's Name: Emily S.
Home Town: Lake Charles, LA
Current Age: 2 yrs, 11 mos. old
Date of Diagnosis: Jan. 14, 2019 (2 yrs. 3 mos. old)
Diagnosis: T-Cell Lymphoblastic Lymphoma

How did you find out Owen had cancer?

He was sick for about a month before we were diagnosed. He had a cough, they thought it was a virus, gave him steroids and he got better. Couple weeks later, he had difficulty breathing, took him to an urgent care, he tested positive for RSV, put him on more steroids. They did bloodwork, but it didn’t necessarily indicate cancer, it could have been from the virus. I am a nurse practitioner, I went into the doctor’s office where I work and said, “What are the chances it could be cancer?” They were all like, “Really really slim. Don’t worry about that.”

A week later, he was spending the night with my mom, and I got a frantic phone call that he wasn’t breathing. He woke up, grabbed his throat and then collapsed. Ambulance was on its way but my mom lived 45 minutes outside of Lake Charles. She gave him mouth to mouth resuscitation under the direction of the 911 operator. He might have died right then and there. When we finally got a chest X-ray, I couldn’t believe it. The mass was huge. It was the size of a grapefruit and wrapped all around his heart, blood vessels and airway.

We were told it could be lymphoma or possibly one or two other rare disorders, and that we were going to be transported to Texas Children’s Hospital to find out. We got in at 11 p.m., and the surgery team came in at 3 a.m. to get a biopsy, and it turned out he did have T-cell lymphoblastic lymphoma as they had suspected.

pic What have his treatments been like?

He was diagnosed on a Monday and we started chemo on Wednesday. He was so unstable they couldn’t even put in a port. They had to put a femoral line in his leg to start the chemo. But they said this type of tumor was highly responsive to chemo, and I can tell you that within one week it was gone. It already looked like he was in remission. They gave him a port and sent us home.

He has to do the same treatment as acute lymphoblastic leukemia, with an extra phase because he was given steroids before he was diagnosed, which could have masked how far the cancer spread.

His first day of induction was good, he was given a high dose of chemo, stayed up all night, ate everything in sight. Everything was great, but then on Day 29, his port got infected. Consolidation, the next phase, was the worst so far. He got cellulitis outside his bottom and inside his rectum. He’s had pseudomonis and sepsis and he’s on his third port now. His counts just get so low that he has no immune system for weeks at a time. He’s had it rough. Every rare or bad potential side effect from the chemo, he’s gotten it all. Now anytime anyone tells me, “Oh that’s rare,” I’m like, “Well he’ll probably get it then.”

How have his spirits been?

He’s been active and crazy – like normal. Even the doctors have a hard time believing it. He can be severely anemic and he’ll still be bouncing off the walls. When he’s had these really bad reactions, he doesn’t want to get up, that’s when I know something’s very wrong.

Life is pretty secluded now, we can’t really go anywhere. I haven’t worked since he was diagnosed. I still have my job, but because it’s in a family practice clinic, I don’t want to bring any illness home. I’ve let him have cousins come over and play a few times, but it causes a lot of anxiety since we’re two and a half hours away from Texas Children’s.

But overall it hasn’t affected his growth or development. He was not talking at all when he was first diagnosed in January and within a month he was speaking in full sentences. If you see him at home, you would have no idea he was a sick kid.

How have your spirits been?

Pretty good. But since his symptoms started with just a cough, and I wasn’t worried about it, and then it turned out to be cancer, I feel like I can’t trust anything anymore. I’m a nurse practitioner! I want to be able to trust the opinions of the doctors. But now when there’s anything to discuss, I’m just like, “Do the chest X-ray. Show me the labs.”

Being pregnant throughout this has been hard. A blessing but hard. We haven’t even had a chance to think of names. Owen should be finishing up with the intense chemo in October, and the baby is due in November. Once October comes, it becomes a question of can I even drive here? I don’t want to have a baby in a car. But that’s my next challenge. I stay focused on one challenge at a time.

I tend to do better when things are critical than when things are easy. Because when things are easy, you have time to think about the “what if this happens” and the “what if this goes wrongs.”

What will you always remember about this experience?

I’ll always remember how strong he’s been through it all. I don’t think I’d be this outgoing and energetic if I’d just had chemo! Every time I think, “Oh God, this is going to be horrible,” he makes me realize he can march right through it.

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