SHAWNEE COUNTY (KSNT) - May is National Brain Cancer Awareness Month and one local family is reflecting on the memory of their late daughter.
Morgan Kottman was just 15 years-old when she died from a rare and incurable brain tumor called diffuse intrinsic pontine glioma (DIPG). This November will be the 10th anniversary of her death.
Her mom, Christine Kottman, says she still thinks about Morgan's sense of humor.
"She was very bubbly and funny. Laughed a lot," Christine said.
Dr. Kevin Ginn is a pediatric neuro-oncologist at Children's Mercy Hospital in Kansas City, Missouri. He was also Morgan's doctor. He says DIPG is very aggressive and usually only affects children.
"DIPG specifically," Ginn said, "is one of the tumors that from the first day I meet the family I have to tell them their child is most likely going to die within two years."
Dr. Ginn says despite facing such a grim situation, he remembers Morgan being a real jokester.
"Morgan specifically," he said, "I remember being fun to see, very pleasant in clinic always. Joking around with us."
Christine says even when things were at their works, Morgan never lost her sense of humor. Both Christine and Dr. Ginn recalled a time he spoke with Morgan on the phone while he was out of town.
"I was in South Beach, Miami at a neuro-oncology conference," Ginn said, "and needed to talk to her about something medical care related while I was away."
Christine remembers hearing Morgan ask Dr. Ginn if he went to the beach.
"And he must have said no," Christine said, "because she goes 'you big dummy! You're in Florida and you didn't even go to the beach?'"
"Even in that timeframe," Ginn said, "she was kind of making fun of me, but also reinforcing take some time to relax and enjoy the time that you have away as well."
Ginn says about 300 kids are diagnosed with DIPG every year in the United States. He says despite many drug trials, there's been no real advancement in treatment for decades.
"This disease is rare and is devastating to families," he said, "and deserves more support for funding for research so we can cure these kids."
Morgan's dad Jerry said if he had to give advice to another family in their situation, it would be "just keep remembering." Christine says they have a couple of traditions to do just that.
Every year on Morgan's birthday and the anniversary of her death, they go to Olive Garden because that was her favorite restaurant. She also says they have some holiday traditions.
"The last Christmas she was here she didn't want to wrap anything," Christine said, "so it was all in a bag. Every year for Christmas I buy a gift of some sort and I put it in that same bag. Everybody gets a gift from Morgan every year with her handwriting."
Right after Morgan died, her parents got a card from their 10-year-old niece. Christine says it's still hanging on their fridge to this day and that it has some pretty good advice from Dr. Seuss.
"It says 'don't cry because it's over, but smile because it happened.' And she says Morgan wouldn't want you to be sad, she would want you to be happy you got to spend all those years with her."
ChadTough is an organization dedicated to fighting DIPG. If you'd like to donate to research efforts or learn more about the disease you can find their website here.
For more local news, click here. Keep up with the latest breaking news in northeast Kansas by downloading our mobile app and by signing up for our news email alerts. Sign up for our Storm Track Weather app by clicking here.
