Lydia Boyer

Only two months ago, all seemed right with the world in the Josh and Kayla Boyer family. Josh has a dream job as the youth pastor at Hope Christian Church, and he and Kayla have three beautiful children — Lydia, 5, Judah, 3, and Titus, 1.

So when Lydia came down with a fever, just like several other kids in her kindergarten class, her mom and dad didn’t think much of it. But the fever seemed to hang on a little too long, and Lydia developed some mild drooping in her face to go along with it.

“My wife noticed it — I didn’t even notice it,” Josh Boyer said.

Lydia was referred to a neurologist, who examined the girl and confirmed their regular doctor’s assumption — Bell’s palsy, which is a neurologic condition that causes weakness and drooping on one side of the face due to usually temporary damage to a facial nerve.

But little Lydia continued to get sicker. Her doctor scheduled an MRI and before it could be performed, Josh and Kayla were taking her to the emergency room at Cardinal Glennon Children’s Hospital. That was on June 1, and Lydia has been there ever since, in the intensive care unit for the majority of the time.

She is battling what is easily every parent’s worst nightmare — cancer. She has Stage IV medulloblastoma in her brain and all along her spinal column.

“It’s not the most aggressive type of tumor, but her tumor is the most aggressive medulloblastoma her (caretakers) have ever seen in this form,” Josh said.

Lydia has battled loss of motor functions, incontinence and eye problems. She has lost the ability to walk and has difficulty speaking. Doctors are hopeful she will regain all these effects, but it’s impossible to be sure.

Right now her treatment consists of brain surgery, which removed 95 percent of the tumor, although it remains all along her spine, according to Josh. She has radiation therapy Monday through Friday and a mild chemotherapy once a week. Since the treatments have started, Lydia has regained some movement and sensation.

“Up to this point, we have no idea if it’s been working, except clinically,” Josh said as he waited for doctors to finish administering an MRI on Lydia to show if the tumors have indeed been shrinking.

Lydia also deals with pain, especially in her back, where tumors still affect her spine, and she misses home. A lot.
“She asks for her little brother Titus all the time,” Josh said. “He’s the only one who’s been able to make her smile.”

If Lydia is able to stay the course with her current treatment of six weeks of radiation along with daily chemotherapy, the next stage will include a four-week break before beginning an eight-to-nine-month course of chemotherapy. And in that four-week break, the family, who has been in the hospital 34 days and counting, may be able to go home.

When asked how Josh and Kayla are dealing with watching their daughter go through such agonizing symptoms from a deadly disease, Josh, who rattles off medical jargon as if he’s been working on a second career in oncology, answers just as easily.

“We have amazing support, from our family, from our church,” he said.

Josh’s Hope Christian Church family has stepped up in ways big and small. They make sure the Boyers’ lawn is mowed at their Columbia home, and that their house is clean. A group of cancer survivors who have traveled the same difficult road the Boyers are currently navigating have been working on getting little Lydia’s room ready — cleaned, sanitized — just in case doctors decide she is well enough to come home and continue her radiation as an outpatient.

“We’ve just got awesome support,” he added.

While medical bills have not yet started rolling in, they will soon and they will be large. Currently, the House of Neighborly Service is accepting donations for the Boyers. Send checks to HNS-Lydia Boyer Fund, P.O. Box 367, Waterloo IL 62298.

The best way to follow Lydia’s journey, and keep updated on future fundraisers, is to “Like” the page Facebook.com/HopeForLydia.

Josh, Kayla, Lydia and the whole Boyer family are on a journey that has changed their lives and what it has in store, they just don’t know. But Josh credits their faith for bringing them this far, for all of Lydia’s little victories so far, and he has faith in God’s bigger plan for his family.

“It’s no doubt this is the hardest thing we’ve gone through,” Josh said. “But we’re not going through it alone. That’s the blessing of knowing Him — it’s knowing He is right with us. There’s a lot that we don’t know, but He does and we trust Him.”