Kailee’s Journey: A story of support, love and community at Beacon Children’s Hospital

Kailee and her mom, Alexis, before Kailee’s cancer diagnosis.

Support often goes unnoticed until the moment it’s needed most. For Kailee Michalski, that moment arrived unexpectedly in late February, on a day filled with birthday cake and laughter.

Her fifth birthday. And the day Kailee was diagnosed with leukemia.

A day meant for celebration swiftly unfolded into a months-long journey of bravery, resilience and the unwavering support of loved ones and strangers alike.

***

It started with seemingly harmless bumps that first appeared on Kailee’s hands, like a trail of pinpricks or dots of a marker. Her mom, Alexis, wondered if her daughter hadn’t inadvertently marked herself with a pen or picked up a rash during their weekend getaway at a hotel with a swimming pool.

But these dots couldn’t be washed away, and more revealed themselves on her feet, as well. Alexis called their pediatrician. The doctor saw Kailee that afternoon and recognized the markings to potentially be much more serious than nonerasable ink.

Pinpoint-sized dots appeared on Kailee’s skin.

Bloodwork was ordered, and then they returned to their South Bend home.

Alexis could tell by the doctor’s reaction and body language that something concerning could be going on. Around 9:30 that night, as she was getting ready to go to sleep for work the next morning, her phone rang.

“We found cancer cells in Kailee’s blood.”

“I literally dropped to my knees,” Alexis recalled hearing those words. The mysterious rows of dots on the little girl were petechiae, or bleeding under the skin. More tests needed to be run, immediately.

“Her dad came rushing in because I was just getting out of the shower and he had to take the phone from me, because I couldn’t handle hearing that my 5-year-old had cancer,” Alexis said. “That was a big, big hit on my heart. I never expected my child to have cancer. She’s never had anything wrong besides normal sicknesses.”

Within the span of a half an hour, Alexis and Kailee found themselves being cared for and comforted at Beacon Children’s Hospital.

***

Dr. Angela Herman, Pediatric Hematology / Oncology, Beacon Children’s Hospital.

Sleep did not come easy for Alexis in the days that followed as she grappled with the enormity of what lay ahead.

Support, in various forms, became a lifeline during those trying times for Kailee and her family as they learned about their fight against B-cell ALL, or acute lymphoblastic leukemia.

“What is cancer? Why do I have it?” Kailee asked her mom.

Too young to grasp the gravity of her diagnosis, Kailee depended on Alexis to help her understand. Alexis, who is always up front and honest with Kailee, depended on support from the entire Beacon Children’s team that quickly became her allies. Child Life specialists came armed with videos to help explain things in 5-year-old terms.

Dr. Angela Herman walked with Kailee and her family on their cancer journey. “Being able to do that with them — it’s sacred to me,” the pediatric oncologist said. “Treating the whole family is what we do best. It can be so hard for our families, like Kailee’s because they were here for months, so we make sure they have what they need.”

Through spring and into summer, the family navigated a maze of treatments and tests. Chemotherapy treatments became more rigorous, more intense, yet Kailee’s tears were few and her attitude upbeat.

“She’s very strong and never lets herself get down,” Alexis said. “I had more tears than she did. She’s what kept me going.”

***

Chemotherapy, however, did not put Kailee’s cancer into remission. Twice, tests still detected leukemia cells in her blood. This led to another treatment, this time an immunotherapy drug that works differently than chemo, which Kailee would receive intravenously 24-hour-a-day for 28 consecutive days. Called blinatumomab, the medication is used in the treatment of certain cancers, particularly Kailee’s type of leukemia.

“It was heartbreaking, but we were in the right hands with these doctors,” Alexis said about the hospital team, which had transformed into trusted companions offering not only expert guidance but compassionate hearts.

Kailee unpacks Play Doh, a gift from one of her favorite nurses during her several month hospital stay.

Dr. Herman, for example, knows exactly what question she will get every time she walks into Kailee’s room.

“Will you play with me?” her young patient always asks.

One time she handed Dr. Herman a wet wipe and had the doctor clean her Cinderella chair. She put makeup on the nurses. Another time she was making a menu for Kailee’s McDonald’s when Dr. Herman walked in.

“I’d like some ice cream,” Dr. Herman told Kailee, pretending to order.

“We’re out of ice cream,” Kailee informed her customer.

“How can you be out of ice cream, it’s on the menu,” Dr. Herman said with a laugh.

It’s clear to hear their bond, and the bond Kailee has developed with all the staff. It has helped give Kailee and her mom more good days than bad days.

“They made me feel better on what was to come as we moved forward,” Alexis said. “If I needed a shoulder to cry on, the nurses have all been here for me. And our doctors are more like family now than doctors. They literally explained and broke down every question I had.”

Including questions about a bone marrow transplant to replace Kailee’s stem cells with her brother’s so she can produce healthy new blood cells. This procedure, a required part of her treatment, would be performed at Riley Children’s Hospital in Indianapolis.

Alexis, Kailee’s dad, and Kailee’s brothers willingly underwent testing to find out if they could be bone marrow donors.

Beacon Children’s nurses adjust Kailee’s IV lines.

She’s not surprised everyone stepped up to help. “This whole journey has made the kids closer with their sister and Kailee a lot closer with them,” Alexis said about the unwavering support from everyone in their family. “They love their little sister, so anything they can do to save her life they are willing to do.”

One of the boys, 10-year-old Khyren, was determined to be the best match.

“I’m not really scared,” her brave brother said.

“It makes me feel good to be able to do this for her,” Khyren said. “She hasn’t been home sometimes, and it makes me and my siblings sad when she’s gone. So I’m being kind and giving it to her to save her life. I love when she smiles. It makes me happy.”

***

Alexis and Kailee give each other a big hug the day they are set to leave Beacon Children’s Hospital.

Just days before the family would leave for Indy, they were in for two surprises.

First, Alexis received a call about Kailee’s latest test results. The 24-hour continuous IV infusion worked. Kailee was in remission; there were no detectable cancer cells in her body. It was such a positive outcome after many months of treatment.

“I cried my eyes out,” Alexis said. “It was the best birthday present I could ever ask for.” That’s right, the family learned Kailee had cancer on Kailee’s birthday back in February, and they learned of her remission on her mom’s birthday.

Being in remission means the leukemia cells have been reduced to undetectable levels. Dr. Herman said this can lead to a more successful transplant procedure if all the leukemia cells have been eradicated prior to the transplant. If a patient is not in remission, residual leukemia cells may survive the transplant process and increase the likelihood of a relapse.

“Our hope is Kailee remains in remission, and we see here back here at Beacon Children’s for regular follow-ups and evaluations,” Dr. Herman said.

Around the same time, Alexis also received a phone call about a certain college football quarterback who made Kailee a promise when he met her while volunteering at Ronald McDonald House of Michiana.

A promise to come see her before she left Beacon Children’s.

Alexis snapped this photo of Kailee and Notre Dame quarterback Sam Hartman at Beacon Children’s.

“Members of the team had cooked for everyone at Ronald McDonald, and she met Sam Hartman there. That’s when she gave him one of her bracelets,” Alexis said.

Kailee’s grandmother made bracelets with the words #KaileeStrong to give family and friends during the summer months.

“We wanted to give people her bracelet to those who interacted with her, or listened to our story, and he was one of them,” Alexis said. “He was really interested during that visit and threw the football back and forth with her. We were supposed to go to their first home game, but doctors didn’t want to take the chance of her getting sick since she is so close to the transplant. We didn’t want to risk it.”

As Notre Dame fans, they usually try to get to one or two home games a season.

During his recent weekend visit, Alexis and Kailee let Hartman know about her positive test results, and he wished her the best of luck with the transplant. They took pictures and he told Kailee to stay in touch.

“You can see he’s wearing Kailee’s bracelet in pictures. He didn’t have to do that,” Alexis said about the support from Hartman and the Notre Dame community.

“Look mom — my bracelet,” Kailee has said while watching Notre Dame on TV during treatment at the hospital.

“It melts my heart because they don’t know us from anybody,” Alexis said. “We’re just people here. But hearing her story and seeing them wear her bracelet means so much to us. It means a lot for them to be thinking about her.”

***

Khyren gives his little sister, Kailee, a piggyback ride days before her bone marrow transplant.

Alexis, Kailee, Khyren and their dad have been down in Indy for the past week. They’re still getting settled in. Kailee has been getting chemotherapy to prep for her transplant, and Khyren has just been hanging out with his little sister.

Khyren is scheduled for his procedure today (Sept. 26).

On Wednesday (Sept. 27), Kailee will receive his stem cells intravenously like a blood transfusion. She will need to remain in Indy with Alexis, who is on a leave from work, until January.

“I am feeling a little nervous for both Kailee and Khyren, but I’m ready for this process to begin,” Alexis said. “I just hope Khyren’s procedure goes well, and he doesn’t have any pain afterwards. And Kailee — I’m just nervous because I’ve never known anyone to get a transplant like this before, so I just hope that everything will work out how it’s supposed to and she has a speedy recovery.”

Kailee could have a fever and not feel very well at first. It could take two to three weeks before the family knows if the bone marrow transplant is working.

“She’s in such good spirits so far that it makes me feel good going into this,” Alexis said. “I believe it will be a long road, but I’m optimistic. I want to have nothing but good thoughts, and I want her to knock it out of the park.”