By Shawn Hogendorf, Staff Writer 

In three weeks, Kate Jacobs of Prior Lake will be 2 years old.

She loves the movie “Cars,” playing with her older brother Ryan, jumping, running and singing.

The little redhead doesn’t stop smiling or talking while toting around her favorite blanket and Peppy, her favorite stuffed animal.

Kate’s story is one of courage, strength, hope and heart-wrenching pain, all at the same time.

Kate is a cancer survivor.Kate Jacobs undergoes a
radioactive injection prior to her
MIBG scan, which will locate any
neuroblastoma cells at Children’s
Hospital in Minneapolis on Tuesday
afternoon. Kate had a number of
scans and tests done this week as a
post-treatment procedure.

At 11 months old, Kate 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.

“The journey has been really … surreal,” said her father, Matt Jacobs. “The initial phone call when you find out that your child is gravely ill is the worst. It’s all raw emotion and pain. I remember one night in the hospital a couple of days after the initial identification. The pathology wasn’t back yet and there were a number of different ways the diagnosis could’ve gone.”

That’s the point where the gravity of the situation hit Matt.

“I could lose her,” Matt said. “She’s 11 months old, and this could be it. I held my daughter in my lap and cried for hours. I ran my cell phone battery dead praying with my parents and brothers.”

The following weeks were all about the prognosis and seeking information to understand the fight the Jacobs family entered into.

Since June, when the Prior Lake American first featured Kate, she has undergone full treatment for intermediate-risk neuroblastoma, her mother Karen Hohertz-Jacobs said. Kate had eight rounds of chemotherapy, which she finished in September.

In October, she had a full-body CT scan, which found that the tumors and lesions that once filled the little girl’s entire body – with the exception of her arms – had melted away, other than the original tumor on her adrenal gland.

Doctors and surgeons wanted to remove the primary tumor.  Surgeons pulled Kate’s digestive system out but found the tumor wrapped around her arteries near her heart.

The removal of the tumor was unsuccessful.

Multiple biopsies were taken from the tumor and sent to California for testing.

After anxiously awaiting the biopsy results, her parents heard that the cells had matured, meaning there was less than a 10-percent chance of the cancer metastasizing, Karen said.

In January, Kate had another full-body CT scan that found the cancer hadn’t spread. This week, Matt and Karen are once again anxiously hoping for the best.

Kate went into Children’s Hospital in Minneapolis for post-treatment scans. Over the course of five days, she will have a CT scan, a bone scan, an MIBG scan, which includes an injection of a radioactive isotope that attaches to neuroblastoma cells, to see if any cells are still present, and a bone-marrow aspiration.

“It’s a big week,” Karen said. “But for whatever reason, I am really calm this time around.”

“I’m optimistic about this week,” Matt added. “I can honestly say without reservation that Kate will beat this disease. Perhaps it’s a coping mechanism I have, but when she was sick a year ago, I looked into her eyes and I knew something was wrong. I just don’t see that when I look at her now.”

The only thing Kate currently struggles with is digestion because her spleen is tucked under her stomach as a result of the removal and replacement of her digestive system, Karen said. She just needs to grow until things realign, she said.

Not only have Kate’s parents fought cancer, but they have also become advocates.

In the last year, the Jacobs family has raised nearly $30,000 in donations for the Childhood Neuroblastoma Cancer Foundation through a garage sale at Crossroads Church last summer, matching donations from Matt and Karen’s employer, Best Buy, selling bracelets and maintaining Kate’s Lunch for Life Web site at www.lunchforlife.org/donate.aspx [1]. 

Friends of the Jacobs family are attempting to raise more money for neuroblastoma on May 18 during the Cellcom Green Bay Marathon. The runners are calling the effort “Running for Kate.” The group of runners is accepting donations at www.firstgiving.com/katejacobs [2].

Tia and Greg Mack of Prior Lake are among those running for Kate.

Last year, Tia Mack said she ran a Chicago marathon for St. Jude’s Children’s Research Hospital.

“When I ran the Chicago marathon, I felt honored to run for a cause,” she said. “This is a special honor to run for Kate because this hits home. I have children. It breaks my heart to see what children with cancer go through. It’s simply an honor to do something for people at this magnitude.”

But raising money for research and awareness isn’t where the efforts stop for the Jacobs family.

“Grassroots efforts are critical for finding a cure,” Matt said. “I’m not one for usually quoting people, but in this case it seems appropriate. Margaret Mead said, ‘A small group of thoughtful people could change the world. Indeed, it’s the only thing that ever has.’”

“The failure of governmental sponsorship for The Conquering Childhood Cancer Act to increase the amount of funding the National Institute of Health gives to childhood cancer is proof that the government isn’t doing anything,” Karen added. “The National Institute of Health only allocates 5 percent of their research funds to childhood cancer.”

That legislation failed to get to the floor in the Senate or House in 2004 and again in 2006. The bill would allocate $150 million to childhood cancer research from the National Institute of Health resources over five years.

Pharmaceutical companies don’t research drugs for childhood cancer because it is rare and not very profitable, Karen said.

“This makes my blood boil,” she added.

To date, there is no known cause of neuroblastoma, nor is there a database of children who had the disease to base research on. Allocating money would help build databases and secure research for a cure, Karen said.Kate Jacobs pages through a book
in the aiting room of Children's
Hospital in Minneapolis Tuesday
afternoon. (Photos by Shawn
Hogendorf)

“I just feel like I need to give back,” she said.

That thought came early on when Karen saw Kate getting red blood cell transfusions following chemotherapy.

“She would be lethargic, lying in my arms, and an hour-and-a-half later she was ready to go,” Karen said. “I thought, ‘A stranger just saved my daughter’s life.’”

Karen realized a lot of people cared and wanted to give to her cause as a result of the amount of responses Kate’s Caring Bridge site received.

“We’re not people who feel comfortable taking money from people, but so many people wanted to give. So I let people boost our spirits by donating to neuroblastoma research,” Karen said. “Since government and big business aren’t helping find a cure, I truly believe the cure will come from parental efforts.”

People affected by cancer understand there is never anything certain with cancer, Karen added. There’s no guarantee of anything until there’s a cure.

“But as Lance Armstrong says, ‘Knowledge is power. Unity is strength. Attitude is everything,’” Karen said. “That quote is great for this space. It’s the cancer manifesto.”

To read more about Kate Jacobs, log onto www.plamerican.com/node/2389 [4] and read the first story written about Kate last June.

To donate money for neuroblastoma research in Kate’s name, visit www.lunchforlife.org/donate.aspx [5].  

To donate to “Running for Kate,” visit www.firstgiving.com/katejacobs [6].

To follow Kate’s story through her Caring Bridge Web site, visit www.caringbridge.org [7] and search for katejacobs.

   

Shawn Hogendorf can be reached at (952) 345-6374 or shogendorf@swpub.com.