Mother raises research funds

By Shawn Hogendorf

Staff Writer

Katie Jacobs, 1, of Prior Lake, recently took her first steps. She can say her dog’s name. She can almost form the words Mommy and Daddy.

For the first 10 months of her life, Katie was the “shining picture of health,” her mother, Karen Hohertz-Jacobs, said. Katie never had an ear infection. She was never sick. She was never on an antibiotic. She only needed to go to the doctor for routine check-ups.

Three months ago, everything changed.

Katie was diagnosed with neuroblastoma, a rare form of pediatric cancer that affects about 650 children a year in the United States and about 15 children a year in Minnesota.One-year-old Katie Jacobs and her
mother, Karen Hohertz-Jacobs,
recently made it through Katie’s
fourth round of chemotherapy.
(Photo by Shawn Hogendorf)

Neuroblastoma is a cancer of the central nervous system. It is a solid-tumor cancer that starts in the adrenal gland and spreads throughout the body. The cause of the cancer is unknown. There is currently no cure.

Katie has tumors everywhere, Karen said. In February, Katie got an ear infection. Her eyes would swell up and then deflate. Three weeks later, her stomach started to swell and she was unable to hold down a couple of ounces of water.

“From the middle of February to the end of March, Katie went from the shining picture of health to wondering if she was going to live,” Karen said. “It came on like a rocket out of nowhere.”

A CAT scan found an abdominal tumor wrapped around her aorta and her lymphatic system. The tests also found a tumor on the left side of her skull as well as tumors everywhere in her body except her arms, she said.

The good things about Katie’s diagnosis were her age, the chromosomal makeup and histology of the cancer, Karen said.

Medical professionals have given Katie an 85-percent chance to live.

Katie recently finished her fourth round of chemotherapy in three months. When she is not in chemotherapy, she has medical professionals drawing her lab tests at their house in Prior Lake. When she is not in chemo or having lab tests drawn, Katie spends most of her time in clinics.

The Jacobs family will get the results of Katie’s tests back in July to see where the cancer is at – whether she needs more chemotherapy, surgeons can remove the tumor or more chemotherapy sessions are needed.

“We’re in a painful waiting mode,” she said. “It’s good because she is healing after the chemotherapy. But it is hard to wait to find out what the next steps are and how far along she has come.”

Change in perspective

Both Karen and her husband Matt used to work full-time for Best Buy. Karen is still employed but is on leave.

Matt went back to work at Best Buy a month after Katie’s diagnosis.

The Jacobs are trying to keep life for Katie’s 3-year-old brother, Ryan, as normal as possible.

Ryan is aware of the tumors, and he prays everyday that Katie will get better. His little sister means the world to him, Karen said.

Cancer has taught the Jacobs family to live day-to-day and appreciate the time they have with each other.

“My whole focus is to enjoy the moment,” Karen said. “Enjoy the time we have every day for what it’s worth because you may not have that tomorrow with these kids.”

 People assume when they have kids that they will grow up and do great things in life, she said. The family doesn’t know for certain that Katie will survive.

“We can’t take next year or tomorrow for granted. We enjoy every day we have with our children,” Karen said. “It’s a harsh wake-up call, but it’s sort of the gift that cancer has given us. We know to enjoy every day with our children when our children are 1 and 3 years old, rather than when they are older and we haven’t looked at them as the gifts that they are.”

The Jacobs family is searching for their new “sense of normal,” Karen said. Three months ago, she never thought about pediatric cancer. She didn’t know what neuroblastoma was.

Now, she follows the Caring Bridge Web pages of 20 different children with pediatric cancer on a daily basis.

“Childhood cancer has become a normal part of life,” she said.

The stresses in life three months ago seem insignificant, she said. Before, Karen worried about what someone said to her at work. She worried about a project she was working on.

Now she worries if her baby will live.

“That’s what stress should be. We have a whole different perspective on life and what is important,” she said.

Raising awareness

Neuroblastoma has a high rate of reoccurrence in children, according to the American Cancer Society.

The Jacobs family hopes to raise awareness and money for neuroblastoma research to find a cure.

Lunch for Life is a nonprofit organization started by Mark C. Dungan, a father of a neuroblastoma survivor.

Dungan realized how little money goes into the research of pediatric cancer because it is rare and not a priority, Karen said. Of the little amount of money for pediatric-cancer research, even less of that goes into neuroblastoma because it is a rare form of pediatric cancer.

Karen said she came upon the Lunch for Life Web site while trying to find things to keep her mind off cancer while Katie was in the hospital.

Karen also helped to raise money for Children’s Hospital to buy new high-definition televisions for the rooms of the cancer patients. Best Buy contributed $15,000 for the TVs, and Karen raised another $10,000 for the TVs with the help of family and friends.

“I want to find a cure for cancer selfishly, so medical professionals know more about the disease if it reoccurs when Katie is 5 years old,” Karen said. “I want to find a cure unselfishly to help all the other parents who are going through this journey of hell.”

The rate of occurrence of neuroblastoma in children has remained consistent over the years, she said. But the lack of money for research inhibits the ability for finding a cure.

People can donate to Lunch for Life by giving $5 at www.lunchforlife.org/donate.aspx.

Donations can also be made in Katie’s name by donating to her Caring Tree page at www.lunchforlife.org/givingtree.aspx?cid=389.

 “It’s a great way for friends and family to donate money for neuroblastoma research,” Karen said. “If everybody were to give up something for lunch, donate it to cancer research and tell their friends and family about it, we’d have millions of dollars going to neuroblastoma research.”

Karen’s hope is to hold some local events to raise money and awareness for neuroblastoma research, but nothing is scheduled yet.

She is trying to get a spot at the Prior Lake Farmer’s Market to set up a Lunch for Life booth. She is also looking into becoming a legislative advocate for pediatric cancer.

To read about Katie’s condition and her mother’s daily journal log onto Katie’s Caring Bridge site at www.caringbridge.org/cb/inputSiteName.do?method=search&siteName=katejacobs. Shawn Hogendorf can be reached at (952) 345-6374 or shogendorf@swpub.com.