Kit’s family battles leukemia, raises awareness

Ronna Lawless
Kit’s family battles leukemia, raises awareness

It was relaxing weekend time for the Van Sickle family one Sunday in February. Little Kit crawled into bed with her parents, and MaryKate ran her fingers through her daughter’s long curly hair as they visited. Everything was about to change for this family of four.

“My wife Mary found a lump on Kit’s neck, and we just kind of looked at each other,” said Cory Van Sickle, a 1997 graduate of Nevada High School now living in a suburb of Kansas City.

The parents didn’t want to alarm Kit, but the lump, combined with some unusual bruising, had the parents concerned. The next day they took Kit to their pediatrician and within an hour of having her blood tested there, she was at Children’s Mercy Hospital in Kansas City.

On Feb. 9, just a few weeks before her 3rd birthday, Kit was diagnosed with acute lymphoblastic leukemia.

Before this, Kit was “the healthy one.” While her 4-year-old brother Connor had bouts with ear infections and strep, Kit didn’t seem to catch any of that.

When she was diagnosed, her blood cells were 72 percent lymphoblasts (the bad, leukemia cells) and her bone marrow was 84 percent. A recent blood sample came back at zero, but Cory is cautiously optimistic. “That was just one sample and it just takes one or two cells to be left in the body and start dividing to bring the disease back,” he said.

Kit undergoes chemotherapy once a week, every week. Currently she’s in the second week of an 8-week phase.

“A few days after chemo, we see the side effects. One day, I turned on a cartoon for her, but she just curled up in a ball and put her face into a pillow,” Cory said.

She is high risk, so she’s getting tougher medicine.

She has a port in her chest that connects directly to an artery. The chemotherapy is so strong, the health care workers have to wear thick plastic gloves when they bring in the bright yellow bags marked with hazardous material symbols.

Right now, she’s in the toughest phase that she’s had in her treatment thus far. “It is going to be a rough eight weeks,” Van Sickle said. That will be followed by a maintenance regimen for 18 months, where Kit will continue to take daily pills at home, but she will be able to kind of get back to a normal life at that point. For example, she will be able to go back to day care.

“It is such a relief that she’s making progress. As a paren,t you have real anxiety in this situation,” Cory said. “The innocence is broken, and we will probably feel like we are looking over our shoulders for a long time. But we continue to press on.”

Kit is like most little girls her age. She loves Disney princesses. She loves the movie “Frozen.” She loves to play with her baby dolls and her stuffed animals. She likes to color.

“I’m so impressed with Kit’s strength,” Cory said “She’s had a dozen spinal taps, double digit transfusions of blood and platelets, she’s had evil poison pumped into her system and she hasn’t complained once.”

Since her immune system is compromised, she can’t go to day care, where she would normally see her friends. So the nurses are her new friends. She likes to wear pretty clothes, necklaces and bows when she goes to her appointments.

“As a parent, it’s incredibly difficult,” Cory said. “But Kit is very resilient. She’s always been strong-willed and independent. She has the right personality to fight this.”

Childhood Cancer Awareness

September is Childhood Cancer Awareness Month. Along with supporting Kit through her journey, working at their jobs and paying sky-high medical bills, the Van Sickles are trying to increase awareness of the illness.

“Childhood cancer is not as rare as people think it is,” Cory said. “We are trying to be advocates.”

One fact Cory would like the public to be aware of is this: The National Institute of Health currently allocates only 4 percent of its budget to pediatric cancer. “That’s all pediatric cancers. Not just leukemia,” he added.

“We’ve seen one family lose their child, and we are probably going to see another one lost soon,” Cory said.

The statistics for childhood cancer show some negatives and some positives.

In the United States, cancer is the leading cause of death from disease among kids over the age of 1. That’s more than cystic fibrosis, asthma and juvenile diabetes combined.

On the bright side, however, a child’s chances of surviving cancer are much better than they were decades ago. In 1964, a child had only a 3 percent chance for survival, but today those odds have increased to 85 percent or better.

Dr. Carla Schwalm, a pediatric oncologist with Blank Children’s Hospital in Des Moines, said 13,500 children are diagnosed with cancer each year. “Currently there are 375,000 survivors of children’s cancer. About 85 percent of children’s cancer patients go into a long-term remission,” she said.

Since 1980, fewer than 10 drugs have been developed for children with cancer. One of the reasons for the few drugs is that drugs go through three phases of testing in adults before the FDA approves them to be prescribed to kids. “That takes years and years for each drug,” Schwalm said.

If the circumstances are dire, it’s possible to work directly with pharmaceutical companies, Schwalm said. “Occasionally you can get the drugs for compassionate use. But that’s rare, and it’s difficult to obtain. I’ve only done it once,” she said.

Community support, a source of strength

“We have had such strong support from our family and friends and even from complete strangers. We feel so humbled by the kindness and support we’ve received,” Cory said.

Cory and MaryKate have had tremendous understanding and support from their employers, as well, he said. MaryKate works for Waddell and Reed in Kansas City and Cory works for Dex Media. “They have been understanding about missing work for medical appointments. They’ve even understood,” Cory said, “when we could make it to work, but weren’t quite all there mentally and emotionally.”

Cory was born and raised in Nevada, and graduated with the Class of 1997. His parents are Jim and Debbie Van Sickle of Nevada, and his sisters, Ashley and Nicole, live in Nevada too.

“We can feel everyone else holding us up,” he said. “We are so appreciative of everyone’s support.”

Using the hashtag #GoKitGo, social media has become a source of support and encouragement for the Van Sickles.

The Internet has also helped raise funds to help them financially.

The first month of prescriptions alone were $1,100, after insurance. Although both parents have supportive employers, the reality is that both of them have used all of the family leave, and when they do take time off, it’s often unpaid.

Freely Given, started by the Van Sickles’ dear friends Allison and Chris French, features videos, photos and stories about Kit’s journey. On the site, Freely Given sells apparel that benefits its users. Kit is the first, and so far only, user of the site, but the intention is for that community to grow.

Although the site launched just 21 days ago, it has already raised more than $4,500 toward the cost of Kit’s in-home care. Hundreds of people across the country have become involved in the Freely Given Movement. Freely Given has a page on Facebook or can be found online at www.freelygivenmovement.com.

As a professional photographer, Allison offered to document their journey with hopes that photos and videos would go viral. For every shirt sold, 90 percent of the profits goes to the Van Sickle family. “It is ridiculously expensive to have home health care. It costs more than our mortgage,” Cory explained.

There is also a profile on Go Fund Me that has more than 500 donors who have contributed more than $48,000 to the Van Sickles. Kit’s profile can be found by searching the Go Fund Me site for “Kit’s Medical Fund.”

Kit has a professional athlete in her corner, as well. Kevin Ellis, a centerback on the Sporting Kansas City soccer team, met Kit through an organization called Braden’s Hope for Childhood Cancer.

“I fell in love with Kit as soon as I met her,” Ellis said. The two became fast friends, with Ellis spending time with Kit doing crafts and having tea parties.

Ellis tries to get Kit’s message out to as many people as possible so they will support her. “I want to get her as much love as I can,” he said.

So he tweets about her, using a #GoKitGo hashtag. Searching Twitter, it’s easy to see this hashtag is starting to catch on.

Earlier this season, when Ellis scored the first goal of his MLS career, he celebrated by lifting his uniform shirt and revealing #GoKitGo written on his T-shirt.

Community support has become a source of strength and a reminder of hope for the Van Sickles.

“When Kit’s grown up, she will be able to look back at the photos and videos and comments and see what she was able to overcome,” Cory said.