A lifelong connection

 

Written by Joy Anderson, LSW, about Elizabeth Varga MS, LGC

2019 Code Talker Award finalist

The Code Talker Award is an annual essay contest for patients, peers, and caregivers to pay tribute to a genetic counselor who has made a lasting impact. Read the 2019 finalist essay below.

 

PHOTOGRAPHS BY ANDREW SPEAR

 

In August 2018, a hematologist at Nationwide Children’s Hospital recommended genetic testing for one of our sons due to a vague blood disorder diagnosis he received years prior at a previous hospital. This is when I first met Liz. Little did I know then that this would be the first of several correspondences and appointments that we would have together. After the testing, our oldest son was diagnosed with a rare mutation in the RUNX1 gene.

 

“If I have a go-to person, it’s Liz — hands down. You can tell she has a passion for what she does. She strives and thrives to learn more about what her patients (and families) are dealing with."

 

People with this mutation have a predisposition to myelodysplastic syndrome, acute myeloid leukemia, and lymphoma. Then my husband and I got tested, and my husband was positive for the mutation. The journey continued because we have three other sons. They each got tested, and our youngest son was also positive. Liz was not only the one to coordinate all of these tests, but she was also the one to call and inform us of the results with each wave of tests. It wasn’t an easy job, giving the news not once, not twice, but three times to our family. She was always so calm, gentle, and empathetic, and answered any questions I had, which always consisted of a long list. She also is always sure to be up-to-date on any information with my husband, because he’s at an adult oncology hospital. She is kind, compassionate, wise, knowledgeable, and a good listener.

 

She has gone above and beyond her duties as a genetic counselor, because she’s done extra work toward our case. I have also contacted her supervisor to acknowledge all of her exceptional work. In saying this, I’ve met three other families who have also worked with her and who can also attest to her amazing qualities. We have a team that includes a hematologist, two nurses, two social workers, a psychologist, and a genetic counselor. If I have a go-to person, it’s Liz — hands down. You can tell she has a passion for what she does. She strives and thrives to learn more about what her patients (and families) are dealing with, and she genuinely loves what she does. She’s always quick to respond to my questions, whether it’s via email or a phone call. She puts us on her schedule when she sees that we have an appointment that doesn’t involve her — just so she can see us. For example, the boys have bone marrow biopsies next week, and she put us on her schedule. She truly is a gem. Liz had a graduate student studying under her. She had the student study our case and create slides to help us understand the RUNX1 gene mutation. Liz stood back, allowing the student to take ownership of the project, yet intervened when needed.

 

This again proves Liz goes above and beyond in her job. When the student presented our case confidently, I credited Liz for being an excellent resource and leader to the student. Liz has validated many hesitations and worries that I’ve had, but she’s also been one of my biggest cheerleaders on this journey. She has helped me understand not only the genetics part of things, but how all the other facets we are dealing with work.

 

"She was always so calm, gentle, and empathetic, and answered any questions I had, which always consisted of a long list."

 

I honestly cannot say enough positives about Liz. She is a well-rounded individual who is changing the world, one family at a time. I look forward to each appointment when I know we will see her. Why? Because she is the epitome of genuine, as well as a wealth of knowledge in the genetics world. I’m so grateful that our paths have crossed in the circumstances we’ve been dealt. I see a lifelong connection with Liz, as she’s been an intricate part of our story.