September 27, 2022 at 1:45 p.m.
A colorful paper chain hangs on a wall in Jesse and Julie Job’s rural Freeport home. Youngest daughter Lilah removes one link after she finishes another week of chemotherapy.
By January, Lilah and her family, including older brothers Peyton and Isaiah, hope to have all the links gone.
On July 18 she started a 24-week regimen of Monday chemotherapy treatments at Children’s Hospital in Minneapolis after she was diagnosed June 30 with Wilms tumor (nephroblastoma), one of the most common types of kidney cancer in children.
September is Childhood Cancer Awareness Month.
But this happy-go-lucky girl doesn’t let cancer get her down.
Mid-morning July 21 Julie watches their baby girl eat pretzels and dip around their kitchen counter.
“What always sounds good,” Julie asks.
“Mrs. Grass soup,” Lilah said.
Chemo treatments have caused changing taste buds and loss of appetite for Lilah, but her positive attitude has not decreased.
That attitude helps get Jesse and Julie through challenging days.
“She’s so strong,” said Julie. “Even when she’s sick, she is just a trooper.”
Isaiah and Peyton, who have put their teasing aside, support her in their own ways, much like the Freeport community and beyond, including during Lemonade for Lilah events and the distribution of Love for Lilah bracelets, which Lilah has wrapped around her tiny wrist.
“Initially she would say her two brothers were annoying but now she says ‘they are actually nice to me,’” Julie said. “That’s precious.”
In a blink of an eye, the Jobs’ lives have changed – again – Julie referring to when Jesse had his life-changing accident three years ago.
“I’m praying sooner or later Lilah’s back to normal and being a kid again,” she said. “This will change her forever. She has missed so much.”
But she didn’t miss the Aug. 27 Luau for Lilah on the Sacred Heart Catholic Church grounds. Lilah’s doctor gave her the OK to attend it after her counts held steady.
“She’s very humble and said, ‘These people are all here for me. They are so kind, momma, and wonderful,’” said an emotion-filled Julie.
Many were wearing yellow Love for Lilah T-shirts, including close first grade classmates, who Lilah played with like a normal 6-year-old during the two hours she was there, which warmed her parents’ hearts. In fact, other than her hairless head, you would never have known she has cancer.
It was blood in Lilah’s urine that had Julie taking her to the doctor. On June 30, Lilah was diagnosed with Stage II nephroblastoma, with spots on her lungs. They were told Lilah may have had this cancer for a while and were unable to give them a reason why.
Telling Lilah was emotional.
“She didn’t really understand, but we explained the best we could,’” said Julie, who gathered books and pamphlets on cancer to help explain it to her.
Lilah also met with a child life specialist.
Her right kidney and 14 lymph nodes around the organ were removed during a July 7 surgery, and she started chemotherapy July 18 at Children’s Hospital. Julie never left her side during the whole process, including during the 15-minute chemo infusions that could take anywhere from two to five hours. She is often accompanied by her sister, Jenn Tschida, or other family or friends.
Lilah’s personal cancer path sheet maps out her 24-week treatment schedule.
Regular scans show the spots on her lungs are not changing, which is good news.
“Doctors are not 100% positive, but they are very certain these spots are not cancerous because they didn’t shrink or grow,” Julie said.
Because of this, what Julie called Lilah’s “nasty chemo drug” was removed from her treatment plan, which hopefully will decrease Lilah’s side effects of a changing voice and throat clearing. She still deals with pain, nausea and neuropathy.
Lilah was excited to start school; her parents with a plan in place for when she is not up to attending school due to her low counts or not feeling well. Julie homeschools her then.
A former nurse, Julie is a realist, knowing more challenging days could be ahead, and like their daughter, she chooses to focus on the positive.
“She’s my baby, my flesh and blood, but she’s a rock star, even during times when I know she’s hurting,” she said.
Lilah doesn’t even mind her hairless head, most days choosing not to wear one of the many hats she has been gifted.
The Job family is thankful for continuing support, including prayers, messages, people who drop off meals, send cards and gift them with monetary donations.
They treasure Lilah’s good days and good news, including a scan six weeks ago that showed there was no cancer growth. She will continue to have frequent scans and follow-ups with her oncologist every two to three months.
On Friday it was all about celebrating this blue-eyed and at one time blonde-haired girl during Love for Lilah Day at Sacred Heart School, where a sea of children and staff wore yellow T-shirts and bracelets in honor of their friend.
“When she sees somebody with her shirt and bracelets she says, ‘Momma, … that is so amazing,’” Julie said.
Julie is positive something good will come out of this experience.
“That Lilah can realize how strong she is and how much of a fighter she is, and that it will take her somewhere in this world. That she can look back on this and say, ‘If I can kick cancer’s butt, I can kick anything,’” Julie said.
Lilah will do it one day – and one link – at a time.