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As the Northern Nevada Children’s Cancer Foundation prepares to attend the 2014 Childhood Cancer Action Days on Capitol Hill, we look back at how far we have come in just a year. With the help of a generous donation to NNCCF, we are proud to announce that we are expanding our program to include support for adolescents diagnosed with childhood cancer before their 21st birthday and through treatment until their 23rd birthday, a group often referred to as Adolescents and Young Adults (AYA). Being able to serve this age group helps to align NNCCF with other national organizations, brings NNCCF to a whole new level of care and allows help to extend to a greater number of people. Previously NNCCF was only able to help those diagnosed before their 18th birthday.
In addition to the program expansion, Nevada has passed the Oral Chemotherapy Parity Law. NNCCF is relieved to see the shift in legislation now allowing families to receive oral chemotherapy without the burden of extremely high co-pays. According to the International Myeloma Foundation, traditionally, IV chemotherapy treatments are covered under a health plan’s medical benefit where the patient is required to pay an office visit copay, usually between $20 and $30. Conversely, oral anticancer medications are covered under a health plan’s prescription benefit and, many times, patients are responsible for extremely high and unmanageable copays, creating an enormous barrier for patients to access orally administered drugs. According to a recent study published in the Journal of Oncology Practice and American Journal of Managed Care, 10% of cancer patients failed to fill their initial prescriptions for oral anticancer medications due to high out-of-pocket costs.
Legislative Solution
In an effort to remove barriers to accessing life-saving treatments for cancer patients, Nevada implemented legislation for health policies issued or renewed on or after January 1, 2015. This law requires health policies that provide coverage for the treatment of cancer through chemotherapy must not require a co-payment, co-insurance or deductible of more than $100 per prescription for orally administered anticancer treatment. Additionally, plans may not increase the out-of-pocket cost to patients to achieve compliance.
What Does This Mean for Patients?
If a patient is privately insured (the law does not apply to Medicare or Medicare supplemental plans), and their plan covers chemotherapy, an FDA-approved, orally administered drug should have a maximum of $100 co-payment per prescription.
Along with all of these positive changes, the Nevada Cancer Coalition is currently in the process of re-writing the strategic plan for the state. Moving forward, NNCCF will have a voice in this plan and the NNCCF team is excited to see what Childhood Cancer Action Days will bring at the end of June.
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
Emma Johnson, a sophomore on the Reed girls varsity basketball team, has a tumor on her brain and spine. (Photo: Provided by Lindsey Johnson) via the Reno Gazette Journal
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 Johnson, a sophomore on the Reed girls varsity basketball team, has a tumor on her brain and spine. (Photo: Provided by Lindsey Johnson) via the Reno Gazette Journal
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.
Emma and Taylor Johnson (Photo: Provided by Lindsey Johnson) via the Reno Gazette Journal
“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.
At two-years-old, Kyla was active, healthy, and rarely sick. Her parents and 5-month-old little sister knew that life was extremely precious, but they were unaware that they would soon cherish each day even more. A few days after Thanksgiving in 2015, Kyla experienced typical cold symptoms, but after a week her symptoms worsened. “I knew something was wrong the second the pediatrician walked back into the check-up room after completing the hemoglobin test,” said Shelby, Kyla’s mother, “The pediatrician informed me that she was very concerned that Kyla might have leukemia.”
After 6 days of tests, Kyla was officially diagnosed with cancer. “Kyla’s diagnosis turned our world upside down,” said Shelby. Kyla and her family all slept in the hospital for her first two weeks and continued to stay near the hospital for the following two months. They were unable to return home to Incline, Nevada, until February 2016. “We could not have emotionally gotten through those first 2 months without the love and support of our family, friends, NNCCF, and our community back home,” said Shelby.
Kyla received two and a half years of chemotherapy infusions, and for the first ten months, their family spent most of their time at home or in the hospital. “We worried about her blood counts, we worried about her catching a cold or getting an infection, we worried about how the chemo would negatively affect her health in the future, we worried about everything,” said Shelby. They kept visitors to a minimum and stayed out of public places until Kyla’s immune system was less compromised.
Kyla’s family settled into their “new normal” and made the best of their situation. They found a lifestyle that fit their needs and focused on keeping Kyla healthy through treatment. “We have put all our hearts and efforts into making sure Kyla thrives through her cancer treatments and continues to thrive through life,” said Shelby, “Overall, Kyla’s cancer diagnosis has empowered us to be the best and healthiest versions of ourselves.”
On February 27, 2018, Kyla entered NNCCF ready for her special day. Kyla came in to ring NNCCF’s “No More Chemo Bell.” Streamers and panda balloons decorated the office, while family and staff waited to witness her ring the shiny silver bell. As everyone cheered, Kyla quietly walked up and rang the bell, then wrapped her arms around her mom for a hug. “Making it to the end of treatment and watching her ring the bell was a very emotional time for our family,” said Shelby. “We are so blessed and grateful, and we are so excited for Kyla’s future.”
Kyla’s family is thankful for the support from NNCCF and the community, “I could not imagine fighting this fight without them by our sides.” NNCCF was able to support them financially, as well as connect them with other local families facing childhood cancer. “NNCCF made it possible for us to focus all of our energy on taking care of our daughter and making sure she thrives,” said Shelby.
Kyla is flourishing and loves playing dress-up with her little sister. She has been practicing writing her name in preparation for kindergarten next year, and is currently learning to ski.
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NNCCF Custom Ink swag fundraiser happening now until April 23rd, 2018!
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