TOPEKA, Kansas (WIBW) - Jessica Seidel, a 14 year old from Topeka, has fought a public battle with cancer for the past two years. The community has continued to offer the Seidel family support financially, emotionally, and through blood and bone marrow registration drives.
Jessica said she began noticing something was wrong in May 2008. "I had come home from school tired and took, like, a three hour nap," Jessica recalls. "I woke up and had a 105 fever. I couldn't move. I felt absolutely horrible." Jessica said she was taken to Children's Mercy Hospital in Kansas City, where they tried to figure out what was making her ill.
In October of 2008, Jessica was diagnosed with Hemophagocytic lymphohistiocytosis (HLH), a cancer that attacks the bone marrow and other tissues. Jessica said she was surprised to hear she had this rare disease. "It's something nobody's ever heard of," she said. "Had it been Leukemia, I would've at least known what it would have been but this is something I didn't know what it was at all."
After the shock subsided, the then-12 year old Jessica was flooded with other emotions. "Then came fear," she said, "then just wanting to get it over with and try to get back to life."
But it would be a few years before life would even begin to resemble normal for Jessica. She began chemotherapy treatments in November of 2008. Then a student at Washburn Rural Middle School, Jessica had to stop going to classes and began spending most of her time at Children's Mercy. Her mom, Leslie, stayed with her in Kansas City while dad, Dave, and brother, Jordan, stayed home in Topeka.
Friends of the Seidel family held blood drives and other events in support of Jessica. In December 2008, a classmate of Jessica's, Drake Herrman, made news when he asked his mom to return a Christmas present - a Wii - and give the money to Jessica's family because he knew they were making a lot of trips to Kansas City to see her.
Drake's story inspired others to donate to the Seidels that Christmas season, and spread Jessica's story to others in the community. Jessica watched the news stories from her hospital bed in Kansas City, and received letters from strangers wishing her the best. "The support coming from people I don't even know... It helped me a lot to get through it knowing there are people out there who really did care," she said.
When chemotherapy was no longer working and the HLH was becoming more aggressive in Jessica's body, doctors said a bone marrow transplant was her only hope. The news worried Jessica. "It can take years to find a match and some (kids) don't in time. There's kids just waiting to get a match - one match - and usually it's not a very good match."
No one in Jessica's family was a match to donate, and once again the community responded to her need. A bone marrow registry drive was held in Topeka in January 2009 to encourage people to sign up to be a donor and hopefully find a match for Jessica. More than 400 people responded. In comparison, staff that conducted the drive said a previous donor registry in Topeka saw just 20 people respond.
Soon after, Jessica's match was found - a perfect 10/10. She received the life-saving transplant in early April, 2009, just a couple of weeks before her thirteenth birthday.
"I was relieved in a way, but I also knew that that wasn't the end. It felt more like the beginning." Jessica said she'd been told that the tougher times often come after a transplant; that the procedure doesn't provide an instant cure. Many HLH patients don't survive the transplant.
After the transplant Jessica struggled with Graft vs. Host disease, where the donor marrow attacked her skin. She also struggled with infections and kidney, liver and neurological issues.
"There were some days I felt relatively decent - sitting up, talking. Then other days I felt absolutely horrible - curled up in a ball in bed all day, not talking, not doing anything," Jessica said. "And then there's long periods of time I don't even remember."
There were also times Jessica and her family weren't sure she was going to survive. Scary as the reality of death may be for a 13 year old, Jessica says it wasn't herself that she was scared for. "I was scared about what would happen to mom and dad, my brother, and all my friends if it didn't work out." Those words brought tears to her mom's eyes. "She's always been such an unselfish person," Leslie said. "I remember her saying, 'I'm gonna be okay, but I don't know if you are... I think she was at peace with what she was feeling, but not with what we were feeling."
Despite the struggles, Jessica focused on staying strong. She said it helped to have the support of her family, friends, and all the people who let her know they were pulling for her. Many people - including a number of people who'd never met her - checked on Jessica's condition by reading Leslie's updates posted on the CaringBridge website. In fact, Jessica's page - www.caringbridge.org/visit/jessica16 - has had more than 440,000 visits.
"I remember sitting by her bed and realizing so many people were lifting her up in prayer and it's just overwhelming the amount of support we've gotten from Topeka and surrounding communities," Leslie said.
One year after her bone marrow transplant, Jessica is home in Topeka and, for the first time since this journey began, says the days she feels good are starting to outweigh the bad. In fact, Jessica says she's starting to feel more like other kids her age. She says despite the nutrition bag she has to carry around, and the administering of medicine each day, she feels a lot like a "normal" teenager. "Still have to do school work like everyone else. Like a lot of teenagers I spend time listening to music, playing on the computer, video games... getting on Dad's nerves."
On Monday, May 10, 2010, the Seidels were able to start the process of meeting Jessica's bone marrow donor, whom they've nicknamed "Angel."
Donors and recipients don't know the identity of one another for at least one year after the transplant. Even then, the donor can choose to remain anonymous. Jessica said she hopes her donor will want to meet her, "but if she decides not to, I understand that too. I don't know what I'd say, though, if I meet her. It goes beyond words."
Leslie said she's not sure what she would say either. "How do you tell a total stranger the gratitude that you have for them for saving your child's life? I gave her life, but this woman saved her life. It was something that I could not do," Leslie said. Though she may not know the words, Leslie does know what she'd like to do if and when she meets "Angel." "I just want to hold her. I just want to give her a hug because she will forever be part of our life. She is now part of our family." Jessica's dad, Dave, calls "Angel" his hero.
Now that she's home from the extended hospital stays - hopefully for good, she says - Jessica said she looks forward to starting high school in the fall, to hanging out with friends again, and getting back to guitar lessons. But for now, her wish is simple, "Right now I just want to enjoy being home. Focus on the small stuff for right now," she said.
Over the next few months, Leslie said Jessica will go through extensive rehabilitation to rebuild physically from the damage done by chemotherapy, the disease, and to recover from the muscle loss caused by spending so much time the past few years in bed.
You can read updates about Jessica and the Seidel family, including find more information on another disease Jessica has struggled with since age two, Eosinophilic Gastroenteritis (EGE). Her younger brother Jordan was also recently diagnosed with EGE.