Former TV reporter Kelly Brennan Culver pens story of her daughter's rare disease, treatment
As Kelly Brennan Culver and Kevin Culver pull into the parking garage, they hear crying.
Their daughter Caroline tears up in the back seat. The 3-year-old knows what day it is — treatment Friday.
Every four weeks, she and her parents make the trip from their McCandless home to UPMC Children’s Hospital of Pittsburgh in Lawrenceville.
Caroline needs to have an infusion.
A year ago, she was diagnosed with juvenile dermatomyositis (JDM).
According to the Cure JM foundation, JDM is a rare and life-threatening autoimmune disease, in which the body’s immune system attacks its own cells and tissues. Weak muscles and skin rash are the primary symptoms.
About 3,000 to 5,000 children in the United States have JDM.
There is no cure for the disease and currently no FDA-approved drugs to treat it. Doctors are using medications that have been approved for other diseases such as arthritis.
The infusion Caroline receives is called intravenous immunoglobulin (IVIG). It’s administered slowly through an IV and is meant to boost Caroline’s immune system and calm the inflammation in her body.
IVIG is a blood product prepared from the serum of between 1,000 and 15,000 donors per batch.
“Caroline cries and says ‘Me want to go home,’” Brennan Culver said. “It takes three people to pin her down (while nurses inject a needle in her arm). The tourniquet hurts. She says, ‘Let me go.’”
It is their new normal. And Brennan Culver has decided to share the journey.
How it started
Caroline’s symptoms began with rashes on her face and knees. She had swallowing issues. There were times she struggled to pick her head up.
Her parents originally thought it was eczema or allergies.
When Caroline was born she didn’t sleep much.
“I was losing my mind,” said Brennan Culver, a former WTAE-TV reporter and current social media influencer and blogger. “She was crying all day and all night. This has been a long journey. It has been quite emotional.”
The infusions have been the family’s routine for more than a year. The disease was discovered during an appointment with a dermatologist for a toenail problem. The doctor had diagnosed the disease previously and said Caroline was “textbook JDM.”
“How could I have missed this?” Brennan Culver said she’s asked herself many, many times. “I had to learn to stop looking backward to what I missed and to look forward. By God’s grace, the dermatologist saved Caroline’s life.”
Brennan Culver scoured the internet for information about JDM. She put a post on social media and found out her daughter’s preschool teacher’s daughter also has JDM.
They connected immediately.
A book idea
Brennan Culver found there wasn’t anything that explained the infusion process for youngsters.
She began sharing her experiences on social media. The response has been so wonderful that Brennan Culver decided to write about it.
“Caroline’s Infusion Day” is a 32-page book expected to be released this summer.
“I want to help people understand what happens with an IV infusion,” she said. “I want it to be serious, but also uplifting.”
Her niece, Elleigh, is creating the illustrations. The 15-year-old high school sophomore from Ohio began with sketches.
“Caroline is such an energetic and fun-loving kid,” Elleigh said. “I tried to capture her personality in the illustrations. She makes people smile. … She is so strong.
“I want this book to be an eye-opener for people to understand what these young children go through.”
The book will have lively characters and bright colors such as pink and purple, and definitely yellow — Caroline’s favorite color. Her mom bought her a yellow dress from Old Navy that she wants to wear every day.
“Yellow is my favorite color,” Caroline said as she showed the bruises on her tiny hands. “I love my doctor.”
It was one of the only articles of clothing Caroline could wear when her body was swollen from steroids. It’s her signature dress, her mom said.
Trust your gut
The treatments are working. The hope is to increase the time between Caroline’s infusions.
Brennan Culver said her message to parents is “trust your gut.”
“Don’t let people tell you you’re crazy for how you feel,” she said. “If something with your child seems off, follow up with it. There are so many times I wish I would’ve pushed more for answers when Caroline was suffering. I’ve made peace with the fact I did the best I could with what I knew, but I’ll never forget the feeling of that ‘mamma gut’ or ‘mother’s intuition’ telling me something wasn’t right and this wasn’t normal.”
“If you’re feeling that, pursue it.”
A medical situation such as Caroline’s affects the entire family — including Brennan Culver’s older sister, Courtney Brennan, also a social media influencer/blogger who formerly worked for WPXI-TV; their parents, Carolyn and Terry Brennan; and Caroline’s big sister, Lily, 5.
“Lily has handled all of this with such grace,” Brennan Culver said. “She is aware of Caroline’s needs. She looks out for Caroline and will often kiss her on her forehead.”
The girls’ parents make sure Lily gets Mommy-and-Lily days and Daddy-and-Lily days.
“It is so easy to give all of our attention to Caroline,” Brennan Culver said. “I have two arms. I can scoop them both up, and hold them and hug them.”
A sister’s help
Before the pandemic, Courtney Brennan visited the infusion center.
“Caroline is so little, and it was heartbreaking to see,” she said. “It instantly makes you grateful for good health. The small things we complain about are nothing compared to what these children have to endure. I want to support any way I can.
‘Caroline is doing so well. She is sweet and so sassy.’ ”
Brennan said the book will be an amazing resource for others.
“My sister has the drive to do this,” she said. “She will reach so many people. Telling her story will help. This is valuable information. You have to create something to keep people from scrolling past your social media post. You want a show stopper. This book will be a show stopper.”
On treatment days, Brennan and her son Henry, 4, spend most of the day with Lily after school. They FaceTime with Caroline and all have pizza together.
“We are not secretive about what is happening, “ Brennan said. “I am so proud of Caroline and my sister. I love that she is taking the initiative to do this. It will really help people and I think it might be some therapy for herself. She will reach people she never imagined she would have reached.”
On the morning of treatment, Brennan Culver rubs numbing cream on her daughter’s hands. The children receive gifts.
“The medicine makes Caroline stronger,” Lily said.
A day at the hospital
The procedure takes eight hours. Caroline watches television and plays. They bring a suitcase full of toys along and they eat lunch.
Brennan Culver said she doesn’t sleep well the night before an infusion, when they have to arrive by 9 a.m. She is always concerned about possible side effects.
“I know how stressful it is for Caroline,” she said. “As a mom, you always want to take the pain away. I feel bad I can’t help. I am crying, too, as we pull into the parking lot.”
That’s because Brennan Culver knows what day it is, too. Her tears remind her.
JoAnne Klimovich Harrop is a TribLive reporter covering the region's diverse culinary scene and unique homes. She writes features about interesting people. The Edward R. Murrow award-winning journalist began her career as a sports reporter. She has been with the Trib for 26 years and is the author of "A Daughter's Promise." She can be reached at jharrop@triblive.com.
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