This girl can fight
Patient's Name: Saylor R.
Parent's Name: Desiree R.
Home Town: Sabine Pass, TX
Current Age: 1 yr. 4 mos.
Date of Diagnosis: Mar. 1, 2019 (9 mos. old)
Diagnosis: Acute Myeloid Leukemia
How did you find out Saylor had cancer?
She and her two older brothers all came down with the flu. The boys got over it, but she never quite did. After three weeks with flu symptoms, she woke up one morning lethargic and wouldn’t breastfeed, so I took her to the closest emergency room. We live in a very small town, and the ER staff was kind of panicking when they saw her condition. I immediately knew that something was very wrong. Within that first hour, they told me, ‘We’re pretty sure she may have cancer, and you’re going to have to be life-flighted out.’
It was terrifying. It was definitely a big shock, and I did not handle it well by myself.
What happened after that?We were in the PICU at Texas Children’s for a month. She was on dialysis the first week. They could tell she had AML, but the standard tests you’re supposed to run to see how much cancer is in her bones, they couldn’t do any of those because she wasn’t strong enough. It’s scary getting any cancer diagnosis, but when we first found out, the doctors said her condition was very precarious.
How did Saylor’s brothers handle it?Not well. They stayed with their aunt for that first full month. They are 5 and 7, and in elementary school, so we felt like they needed to stay. I don’t know why we thought it would work. They were acting out at school, angry all the time. After about a month, Saylor was more stable, so dad went home, and I stayed here. She’s breastfed so I need to be with her all the time. They all come up on the weekends. They are obsessed with her, and they are her best friends. They’ve been way better since dad got home.
So Saylor responded better than the doctors originally feared?
Yeah, she’s done amazing. Her first round of chemo was really rough, we had a bunch of side effects. But every round after that, she’s had almost no side effects. We found out she was in remission after the last round.
She has an ‘inversion 16.’ Her 16th chromosome is inverted, which means she’s way more responsive to treatment than most. Which is really fortunate, since her prognosis was really bad at first.
Are you still spending most of your time here in Houston?We go home about one week out of every month. The first time, I had a panic attack just leaving Houston. ‘We’re too far away! What if something happens?’ Now when we go back, it’s kind of relieving to be out of the hospital, but at the same time it’s overwhelming. I still can’t go to the grocery store with her or go out in public with her, and she’s very clingy, so I don’t accomplish anything at home either.
The isolation is hard – me being stuck here and never having a break. Dad knows everything that goes on, but it’s like we have two different lives. He holds the fort down at home, and I hold it down here. That’s just how it has to be, but it sometimes feels like we’re on two different planets.
What are you looking forward to?Just being home. Being normal again. This is our 4th round, and if she still shows she’s in remission, then we’ll only have one more round. After that, it will be monthly clinic visits to check her blood counts, hopefully no fevers or ER visits. She’ll have her central line removed, which means she’ll get to take a bath and go swimming. She’s never even been in a swimming pool, her first summer she was too young, this past summer, she was in the hospital.
We’re feeling good, just counting down the days.
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