Children diagnosed with cancer show us in many ways that they are strong. They emanate innocence and hope that motivates families, caretakers, doctors, teachers, and social workers alike. NNCCF has been touched by Emma and her family since the day they walked through our door. Every child’s journey with cancer is unique, and we are inspired by her spirit and tenacity.
We are grateful for the support of people in our community, and we hope that Emma’s story published in the Reno Gazette Journal will inspire many of you to support our foundation. Every day we help children like Emma and their families with financial and emotional support. At NNCCF we share the phrase “the child’s diagnosis is a family diagnosis,” meaning that childhood cancer affects the entire family in some way. No journey through childhood cancer is the same, and NNCCF strives to support each family with individualized care.
Thank you again, Emma and her family, for sharing your story.
By: Jim Krajewski, jkrajewski@rgj.com Published 3:52 p.m. PT Feb. 9, 2018 | Updated 5:13 p.m. PT Feb. 9, 2018
Chad Johnson does not a cry often, if ever.
But when he found out his daughter, Emma Johnson, was facing a severe, life-changing diagnosis, Chad admits he broke down outside the doctor’s office.
Emma Johnson, a sophomore on the Reed girls varsity basketball team, has a tumor on her brain and spine. She had surgery a year ago and undergoes a brutal 8-hour chemotherapy treatment every month, treatments that will continue for the next six months.
“I haven’t cried in 44 years,” Chad Johnson said last week. “The doctor told us what was going on, and he told us about the surgery. I was holding it in pretty well except for one meeting when he told us what could happen. It’s overwhelming.”
“He’s cried more in the past year,” his wife and Emma’s mom, Lindsey Johnson said.
Emma Johnson found out she had a tumor on her brain and her spine in December of 2016. She was going for her physical exam, which is required to be on the basketball team, and knew she could not see well out of one eye. But she did not know why.
In the vision test portion of the physical, she told the doctors and her parents she could not see out of her right eye. An MRI in early December 2016 revealed a tumor on her brain. She had a 13.5-hour brain surgery two weeks later, on Dec. 16, 2016.
The tumor is wrapped around her optic nerve and travels down her spine. During the surgery, doctors collected a small piece of the tumor on her brain. The surgery was done to identify markers in the tumor, which can then direct the chemotherapy to attack just the tumor and not the surrounding tissue.
In January 2017, she had a chemo port put under the skin on her chest. That port makes it easier for the doctors to administer the chemotherapy. Each treatment of chemotherapy knocks Emma out of school and life for several days. She misses an entire week of school each month. She makes up the course work at home and online.
“It’s rough,” Emma said. “I’m usually out for a week after chemo, sick, throwing up, all that fun stuff. But I try to come back after a week and play (basketball).”
She returned to the Raiders basketball team last season seven weeks after having brain surgery. Emma has an MRI performed every 3-4 months to see if the chemo is working. Her most recent MRI revealed her brain tumor has decreased since surgery, but her spine tumor is the same size it was on her November scan. The good news is there has been no growth.
The new game plan is for Emma to receive six more chemo treatments, which will take her through August. After that, doctors will scan her again and stop the chemo for two to three months while scanning her at the same time. If she has no new growth, the doctors will make the decision if she is done with chemo at that time.
Emma does not have any diet restrictions, but she eats less sugar because of the tumors. Emma also played on the Reed varsity golf team last fall and takes all honor classes, maintaining straight As. She tries to not let the tumor and chemo treatments affect her mental state.
“People know, but she really doesn’t let it get to her,” Lindsey said. “She’s never skipped a beat. She doesn’t bitch and moan about chemo. She doesn’t complain about going to the doctor.”
Chad said Emma tries to be like most other kids and participating in sports helps her accomplish that. “Everything is a point of trying to have a normal life,” he said.
Chad said Emma is a good example for other parents and children going through similar situations. He said dealing with a life-changing medical diagnosis can help put sports in perspective. Wins and losses don’t seem as important. “You take a look at that, and you see, Reed just lost to Reno for the umpteenth time, but you know what, how can you possibly look at that and say how bad it is,” he said. “It’s just another challenge.”
Emma isn’t one of the Raiders star players. She doesn’t see a lot of minutes and averages fewer than a point per game. But, the fact she still plays varsity sports amazes her coaches and teammates.
“She is one tough kid,” Reed coach Sarah Schopper-Ramirez said.
Chad said when Emma goes through chemotherapy, the whole family goes and has treatment.
“All four of us go and sit there and have treatment together,” he said. “Only one kid is getting it, but we all go through it.”
Chad and Lindsey said the Northern Nevada Children’s Cancer Foundation has been a great help, especially in providing a calm, reassuring support system. They said Emma’s ordeal has helped them meet several people going through similar, trying circumstances. They said helping others cope with cancer is therapeutic.
“You take a look at it and say, “What are we going to do with this?’” Chad said. “We’re going to get through this, but then what are we going to do? I’m sure Lindsey and I will be a part of the Northern Nevada Children’s Cancer Foundation going forward, and that’s what you have to do.”
Last year, the NNCCF helped 140 families with costs such as household living expenses, mortgage payments, rent, food, utilities, travel expenses related to treatment, medical expenses, insurance deductibles, uncovered procedures and additional expenses the family might need assistance with during a child’s treatment.
The NNCCF focuses on children less than 21 years old and those who are in treatment or are in follow-up care for cancer. Their main objective is to enhance the quality of life for children with cancer. They also advocate for increased research funds and raising public awareness.
“When people ask what keeps us going, it is the wonderful people that we’ve met,” Lindsey said.
To view the story on RGJ click here.