A backstory from cana

​We’ve been getting a lot of questions about what led us here with our sweet girl. Two weeks ago to the day, I made the decision to add EvanMarie, almost on a whim, to a doctor’s appointment that I’d made for Lucia. Lucia had been suffering from some pain in her hand and it was interfering with her volleyball season. EvanMarie on the other hand had just not been herself. She was a little clingy and not sleeping great at night, and then started limping a bit after playing on the trampoline with her siblings. Since I was going anyway it felt like enough of a reason to have her seen. I just scheduled the appointment online and chose to do it for the following Wednesday as it was convenient for me, and neither complaint seemed urgent. On the day of the appointment. I didn’t even get to vocalize my concerns about EvanMarie, because upon examination she discovered a new heart murmur and then by palpitation of her abdomen felt what she described as a “mass” on her lower left side.  She referred me to a cardiologist and ordered x-rays for both our girls that day. We received results in a couple of hours. Lucia’s wrist was broken 😳 and EvanMarie’s test was “negative”. We were relieved. My doctor then ordered an ultrasound. That appointment was scheduled for the following Monday and the cardiologist the following Thursday.

In the meantime we changed our plans a bit and brought EvanMarie, birthday girl Zelie, and my mom with us on a little road trip /pilgrimage to the shrine of Blessed Stanley Rother in Oklahoma where our organization Amigos de Apla’s had helped to sponsor an event. From there we dropped Ennie in Dallas so he could fly to DC to give a keynote to a stellar group of young adults, and the girls, my mom and I continued on to San Antonio for a little birthday trip for Zelie to see her godfather Ike Ndolo in concert. We had a great time! Throughout the whole trip I watched EvanMarie like a hawk. Her symptoms continued. She was a little sensitive,  still not sleeping great, maybe a lowered appetite but overall still our fun-loving, talkative, delightful little girl.

On Sunday I was filled with so much hope and gratitude, I looked forward to checking the ultrasound off our list with the hope of it revealing a very minor fixable issue. Instead it revealed a 2cm mass on her liver. But we didn’t even get those results until Wednesday as the imaging center had “missed” the STAT order. Now we were definitely worried, but not dismayed. It was small. It could be a lot of things, etc. But we knew we needed a CT scan. We also took EvanMarie to the pediatric cardiologist to whom we were referred and she reassured us that her heart was strong and totally structurally sound, but that something was causing an acceleration in the blood flow of some vessels at the back of the heart. She explained that sometimes this is normal in kids her age,  but especially given the ultrasound results, she’d also recommend a CT scan that included not only abdomen but chest. We miraculously secured a CT appointment for that afternoon, and by the time we got home, my pediatrician was urgently calling to have us return to Texas Children’s ER. She was admitted to the PICU that night. The CT scan results are like nothing I’ve ever seen. Her case is complicated and critical and it’s hard to believe something so large could have been growing inside my baby girl without making her more obviously ill.


We feel so supported by your love and prayers. Thank you for staying with us through this very difficult time.