In Lesa’s Words: One Year Ago

Brennan and I both took time to write down our thoughts and memories about how we felt one year ago. We also wrote about how we feel and what our perspective is today. 

This is the second of three posts to come as we near diagnosis day. 

Here is Lesa’s heart about last year…

  

Diagnosis Day…

In some respects,  it feels like yesterday. And others, it feels worlds away. 

February 13, 2015.

Yes, it was indeed a Friday.

We weren’t expecting to get Tori’s bloodwork results for a couple of weeks, and they had just sent it in the day before. 

So, imagine our surprise when we received a phone call from neurology asking if we wanted to come in for the results. 

When the neurologist came in to talk to us, we knew immediately that this wasn’t something that could be easily fixed. 

She was in plain clothes, not her typical white robe. She wasn’t supposed to be at work that day. She wasn’t smiling, but was rather somber. She walked in, shook our hands, and said the most terrible words we could have heard: “It’s Krabbe.” 

We had heard about that disease from the  ophthalmologist earlier that week, who said “If it’s Krabbe, the vision usually goes first.” 

We had briefly Googled leukodystrophies and saw that one on the list. 

We knew that word meant certain death.

I will never forget looking over at Brennan, who was holding Tori tightly, as those words were spoken. The pain in his eyes was tangible as he asked the question we both wanted to ask but neither wanted to know the answer: “How long does she have?”

The kind doctor was gentle and said she couldn’t say for sure and that there are many forms of Krabbe. Further genetic testing would be required. She explained the genetics of Krabbe – that both parents have to carry the defective gene in order for a child to get it. 

She also gently added that we might want to reconsider trying to have more children given the odds of Krabbe appearing in any of our future children (25% chance per pregnancy). 

That was a lot to process in one day.

We were devastated beyond words. Hopeless. Knowing she was given such a grim outlook left us numb. The doctor gave us a few minutes by ourselves and we wept together, clinging to our bright-eyed, beautiful, precious daughter who we now knew was dying. 

Dying is not a word that should describe anyone’s six month old child. 

I remember feeling despair and being in utter disbelief that my world was being shattered into a million pieces.

I remember desperately pleading with the Lord to save our daughter, the one for whom we had prayed for so long.

Desperation is the perfect word to describe how I felt. I didn’t want to lose Tori and I was willing to do anything to keep her here. I was desperate to wake up from a nightmare that had only begun. 

When we went home, we cried and cried. I sat in disbelief for what seems like hours, holding and rocking Tori so tightly, never wanting to let her go.

It was the beginning of an unexpected and unwanted journey, and we were afraid.

  

In Brennan’s Words: One Year Ago

Brennan and I both took time to write down our thoughts and memories about how we felt one year ago. We also wrote about how we feel and what our perspective is today. 

This is the first of three posts to come as we near diagnosis day. 

Here is Brennan’s heart about last year…

 

Jan. 30-Feb. 13, 2015

After we got the results from the CT scan, I remember feeling so afraid for Tori.

Selfishly, I also felt scared for myself because I did not want to entertain the thought of losing her.

However, since nothing was definite, I just remember praying silently and with Lesa, pleading with God to let it be something simple. Something they could fix.

That weekend was the longest of our entire marriage, and maybe of our lives. The only encouragement we had to cling to besides each other was the tremendous amount of prayer and support received over the next several days.

When the MRI was finally done, our fears were heightened because of the severity of the possible damage we were shown. But still, we continued to pray and plead with God to spare our little girl.

The five day hospital stay we endured due to Tori not wanting to eat didn’t help matters any. However, we received tremendous help and support from the staff at the hospital to make things a little easier in the hopes that the new normal would just be temporary.

Toward the end of the hospital stay, they finally ordered the blood test and sent it off to be evaluated and to determine exactly what was going on with Tori.

It was only a short day later that we were called back into the neurologist’s office and given the worst possible news we could have ever imagined.

When I heard the doctor deliver the results, my heart immediately sank and I began to cry with Lesa. I felt like I was sucker punched in the gut, the head, and the heart all at once, and I remember thinking how truly unfair it was that we were going to lose our little girl.

In some strange way, the multiple phone calls I made to family and friends to share the news got easier the more I made. I could feel myself almost becoming completely numb to the situation just mere hours after being told the awful news.

What was just as bad was the hurt and pain I heard on the other end of the line as those friends and family tried to comfort me.

The date was February 13, 2015 and it will be a day that will live in my memory forever, no matter what happens with Tori.

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.