One Year Ago Today: The Leukodystrophy Diagnosis

 After Tori’s MRI on February 4th, we received a call from a neurologist inviting us to come in to discuss the results.

It was in the middle of the day on a Friday – the second bad Friday in a row – so Brennan decided to stay at work and my mom went with Tori and me to the appointment. We didn’t know what we were about to hear or how important it was.

Tori napped as we waited for the doctor to come in. She was so peaceful and it kept me calm.

When Dr. Byler came in, she introduced the two medical students with her and began evaluating Tori before discussing the MRI. I don’t remember exactly what she was saying to the students, but I remember the word “spasticity” among others.

Then she pulled up the MRI images and began to explain what she saw and suspected. You can read the original post here.

She said it was likely a form of leukodystrophy and that not all could be treated. It would take bloodwork to determine the specific type Tori has. 

I remember her asking me if I wanted to know what she thought it was, and I said no. Me, the researcher, didn’t want to speculate. I’m not sure what made me say that but I am glad I decided to not know. Dr. Byler even said that was wise.

Looking back, I know she knew it was Krabbe. She knew it was a death sentence.

She added that most (if not all) leukodystrophies are genetic, so we might want to put having future kids on hold. We would hear those words again many times in the next few weeks.

I felt numb and discouraged. It seemed like things were continuing to get worse and worse with every appointment.

Brennan ended up coming home early that day after I filled him in because he was too upset to continue working. We are so grateful for his employer and their graciousness throughout this ordeal.

I was obviously upset and Tori knew it. I assumed that was why I couldn’t get her to nurse, so I purposely tried to be calm and collected while holding her. She didn’t eat much the entire day.

This was not the first time she wouldn’t nurse, so we called the pediatrician. He had us come to the office immediately.

Dr. Krall discussed options with us and recommended a feeding tube (NG), which we would have to have done at Hershey Medical Center. He made arrangements and we went home to wait for the hospital to call to say they had a room open.

Somehow, in our stress, it didn’t register that we might be there for a few days. We thought they would insert the tube and we would go home that night. Because of that, my mom stayed home and we didn’t pack anything.

Sure enough, they admitted her to the children’s hospital. 

Right around that time, our pastor texted and asked if we needed anything, like dinner. I had my mom pack up stuff for us and then our pastor and one of the deacons came to the hospital with our stuff, dinner, and snacks. That would be the first act of amazing kindness that would come our way this year.

As we look back one year, the day was obviously tragic, but it was also filled with goodness, joy, kindness. We were surrounded in love by so many. 

Little did we know that we were going to need that love so much more in the days to come.

One thought on “One Year Ago Today: The Leukodystrophy Diagnosis

  1. brennan,lesa, Icontinue to have little tori in my thoughts & prayers. God always answers prayers, & still can preform a complete transformation to the good in her little body!! I also pray for strength, peace in both ur hearts. Much love goes to the whole family! thank you both for sharing ur deepest concerns. love & hugs! dolly s

    Liked by 1 person

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