Jules’ journey

Difficult road made lighter by friends, strangers alike

Written by Amy Palser

The scrunchy-bound lock of hair sitting atop Julianna “Jules” Cundiff’s otherwise smooth scalp is a trophy of sorts for the 12-year-old who has fought a difficult health battle this spring. After intense chemotherapy in April caused most of Jules’ silky brown hair to fall out, her mom suggested shaving off the stray pieces, but Jules insisted on keeping them.

“That’s her security, I guess,” Sarah Kriwiel says with a laugh.

The lock of hair is also a sign of hope: hope that Jules’ tresses will return, that her body will continue making its own blood, and that she will have the energy and health to resume her life as a spunky, social preteen.

Jules, a student at Maize South Middle School, spent most of April and May at Children’s Mercy Hospital in Kansas City, Mo., after receiving a bone marrow transplant to treat a rare and serious condition called aplastic anemia.

Jules was 9 when she was diagnosed with the unusual disease in which the body stops producing blood. At that time, doctors were able to treat the condition with medication and blood transfusions. But around Christmas 2017, blood work determined Jules had relapsed, and this time a bone marrow transplant was the only option.

With many possible complications and the need to destroy Jules’ immune system with chemotherapy before the procedure, a bone marrow transplant was the last thing Sarah wanted for Jules, but she knew there was no choice.

“Through all of my amazing friends that I’ve met through the Leukemia & Lymphoma Society, I’ve seen what they’ve gone through,” Sarah said. “I just prayed and prayed I could be strong for her and walk through this journey knowing and believing a year from now it would be a memory. I didn’t want Julianna to worry that I was worried.”

None of Jules’ immediate family members — mom Sarah and siblings Caroline, 21, Mary Kate, 20, and Clay, 17 — were compatible donors, so the team found a match through the National Marrow Donor Program.

“That person was amazing,” Sarah said. “I pray for that person every day. We get to meet that person a year after the transplant if they agree, and I really hope they do.”

High doses of chemotherapy took its toll on Jules, making her extremely sick and causing hair loss. She spent six weeks with a feeding tube, and with an extremely compromised immune system, visitors were limited.

“Those first few weeks were heart-wrenching,” Sarah said. “For a mother to watch that …. We walked in there and she looked healthy, but the chemo just destroyed her.”

As Jules progressed, she and Sarah moved into the Ronald McDonald House, returning to the hospital for daily checkups. Jules finally went home May 15, but a few days later was flown by jet back to Children’s Mercy due to a fever that wouldn’t break. Now back at home, she spends her days in bed but is eating well and gaining strength.

“Her attitude is phenomenal through all this,” Sarah said. “I’m really proud of her. She’s never once asked why her? Overall I am confident this will all be a distant memory at some point. The day-to-day grind is the hard part.”

Sarah, a real estate relationship manager at Meritrust, has been on unpaid family leave throughout the ordeal and plans to return to work July 1. The care and kindness of her employer, family and friends — and even complete strangers — has been an amazing blessing, she said.

“Through all of this you realize there are a zillion good people on this planet,” she said. “I feel the prayers. I am oftentimes not strong enough to pray, but I know others are.”

You can follow Julianna Cundiff’s road to recovery on Facebook by searching “Jules' Journey.” Friends have started an account to help Sarah, who is on unpaid family medical leave, at Meritrust Credit Union under “Fund of Hope for Jules.” You can also donate to the account on the Facebook page.

 
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