From the heart of a patient – Lydia, a Variety NICU Graduate

Thursday, February 1, 2024

"As a 14-year-old, I have seen the inside of a hospital room too many times to count. I have had countless appointments where doctors and nurses ran all sorts of tests and scans. I have been poked, prodded, cried and spent too many nights in the hospital. But through it all, you were there, helping me get the care I needed at Blank Children’s Hospital.

My story begins when I was born at 32 weeks. My mom was pregnant with me and my twin sister, Greta, when she developed preeclampsia (high blood pressure) and was admitted to the hospital and placed on bed rest. After a routine morning check-in, the doctors decided it was time for my mom to deliver. Greta was born weighing 4 lbs. 1 oz and I weighed only 2 lbs. 11 oz. My mom remembers how tiny we were and how frightening it was to see us hooked up to so many monitors and tubes. I was in the Variety Neonatal Intensive Care Unit for nearly 10 weeks. During that time, my parents remember how supportive and compassionate the care team was and how grateful they were when Greta and I graduated from the NICU and could go home.

Two years later, I started getting sick every few weeks. My parents noticed I wasn’t my usual self. They took me to the doctor, expecting I may have an ear infection. Instead, we were rushed to Blank Children’s Hospital. After a series of tests and scans, I was diagnosed with Acute Lymphoblastic Leukemia. Life stood still for my family.

Even though I was too young to remember the worst parts, one thing that sticks out is how amazing the doctors, nurses and the Child Life team were when I didn’t feel my best. My medical team made my time inside the hospital feel less scary. They found ways to distract me through play, crafts and were able to explain every medical procedure in a way I could understand. They always made me feel safe and cared for.

For three years, Blank Children’s became my second home, spending countless nights in the emergency department and on inpatient floors. My team of doctors and nurses took special care of not only me, but also my family. Child Life brought a sense of normalcy to my siblings by bringing books, crafts and videos to our room to share. The doctors and nurses brought comfort to my parents, making them feel part of my care team. They answered any questions my parents had and always looked out for the well-being of our whole family.

I didn’t fully understand how they helped me get through the hard things, like pain and fear, until I was 11. That’s when my doctors told me I had hip dysplasia and I would need two reconstructive hip surgeries to help correct it and avoid a hip replacement in the future. I had many tough days but Child Life helped entertain me and encouraged me to use my wheelchair to get out of bed. They played games with me and brought crafts to do and movies to watch while in my room. I was so scared before going into these surgeries. Child Life helped calm my fears by playing Mario Kart in the pre-operation room. They
also knew how much I loved unicorns so they found a unicorn surgical hat for me to wear while I went into surgery. I also remember how one doctor searched the entire hospital to find glitter for my cast after I told him I wanted a pink glittery one!

The entire team at Blank Children’s was there for me. As I look back at that time, I see every person as my second family. When I ask my mom what she thinks about Blank Children’s and the impact it’s had on our family, she says: “We have always said a prayer of gratitude that we could receive care close to home. Having the best resources and expertise right here in Des Moines has been a blessing for our family, as well as so many others in central Iowa.”

Through everything, I have learned to keep a positive outlook and to never give up hope. Today, I look for ways to advocate for other childhood cancer fighters out there. For example, my art (pictured below). For me, art has been a huge part of my life and one day I hope to use this passion and help others through art therapy by starting an art-based nonprofit. I am so grateful for your support. I have seen firsthand how your donation impacts the care children and their families receive at Blank Children’s. You are part of my story. You helped me feel like a normal kid again in the hardest time of my life. Thank you for making a world of difference."

Variety has supported Blank Children's Hospital every step of the way since the first Telethon in 1975, where we raised $151,000 to expand and equip their Neonatal Unit. Many things have changed since 1975, but the need for the services provided at Blank Children's Hospital has only increased. Please consider donating to the 50th Variety Telethon so we can continue to support children like Lydia.

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