We met eight-year old Paxton at the 2016 Speak Now for kids Family Advocacy Day. Just three years ago, he was diagnosed with stage 4 Burkitt’s lymphoma leukemia at the age of 5. Now cancer-free, Paxton has continued to thrive in all things basketball (he’s a fan of Ohio’s own LeBron James). As we come to the end of Pediatric Cancer Awareness Month, Paxton’s mother, Jamie, shares the journey her family has taken to make sure Paxton received the all-around health care – both physical and mental, needed to successfully fight this diagnosis.
Today, Jamie shares how important it is to be an advocate for your child’s health care on both the local and national level.
September 9, 2014, Paxton finished treatment and the waiting game began. Now we wait to see if he is one of the 70% of survivors that get a secondary cancer or life-threatening side effect. In his case, he will most likely get Acute Myeloid Leukemia from toxicity from the etoposide and cyclophosphamide. Or heart failure. Or other major organ failure….maybe his kidneys from being overworked processing the toxic chemicals.
I wonder if I will live long enough to see if he will be able to have children of his own. I wonder if he will ever get to experience the joy of being a father and see his children’s eyes sparkle on Christmas morning. I wonder if I will have to tell him he can’t have children because of the cancer he had at the age of 5.
Three years ago, Paxton was diagnosed with a form of stage 4 pediatric cancer. At age 8, he is now cancer-free. Paxton’s mother, Jamie, shares the journey her family has taken to make sure he received the all-around health care – both physical and mental, needed to successfully fight this diagnosis.
September is Childhood Cancer Awareness month, and I am thankful for it and hate it all at the same time. This month, our social media is flooded with pictures of bald children with no eyebrows, startling and horrible (and true) statistics, and images of empty porches where little girls should have stood on their first day of school.
I love the awareness that this month brings, but all the images and info. bring the possibility of losing Paxton too close to home. Seeing the images throw me into a panic attack – a very real PTSD. But something draws me in to the stories. Because once you are a cancer mom, once you’ve seen your child fight the most awful type of evil in this world, once you’ve heard the screams of dying children being held down by mothers lying to their children that things are gonna be all right….you can’t “un-know” that.
Taniah represented Lurie Children’s on Captiol Hill as part of Children’s Hospital Association’s initiative Speak Now For Kids. This year she participated in the Speak Now for Kids Family Advocacy Day to advocate for children’s health and urge members of Congress to pass the ACE Kids Act, a proposal to improve how care is delivered to children with complex medical conditions on Medicaid.
My name is Taniah Smith and I’m 8 years old but I’m one month away from being 9. I’m a 3rd grader who loves to have playdates with my friends. We like to sing and dance together and make music videos.
This originally appeared in a recent issue of Children's Hospitals Today
This teen advisory council provides a viewpoint on hospital life from older patients.
By Kaitie Marolf
The parents at 2016 Speak Now for Kids Family Advocacy Day (FAD) were curious about the group of teenagers who had come to the event without parents. A 6-year-old and her mother approached 17-year-old Capri Reese from Levine Children’s Hospital in Charlotte, North Carolina. The girl’s mom explained that, like Reese, her daughter had sickle cell anemia and wanted to meet her because of her evident happiness and successes despite her medical challenges. “To know I have that kind of impact on someone was inspiring,” Reese says. “I never viewed myself that way. I thought I was just another person dealing with something. To see that little girl thought it was so much more made the moment stand out to me.”
Reese and three other members of the Levine Children’s Hospital Teen Advisory Council attended FAD with Heather Silva, the child life and creative arts manager at Levine, and Mike Daly, Levine’s family centered care coordinator. The council members were among the oldest patient attendees. Daly and Silva say watching the council members share their stories with their legislators on Capitol Hill, interact with younger children and talk with parents confirmed the success of their two and a half year venture with the council. Silva also says that attending the visits independently impacted how the teens spoke to the legislators. “They were able to be honest whereas teens sometimes don’t want to talk in front of their parents. They don’t want to upset them or hurt their feelings,” she says. “These teens could speak from their hearts.”
September is Sepsis Awareness Month. In a recent issue of Children’s Hospitals Today, Megan McDonnell Busenbark discusses sepsis and the steps being taken to recognize, and treat, pediatric sepsis.
Sepsis is highly elusive in its early stages. To combat it, hospitals must adopt tools, team-based approaches and change culture.
By Megan McDonnell Busenbark
#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Kelsey, who represented Dayton Children’s Hospital at the 2015 Speak Now for Kids Family Advocacy Day.
So, Kelsey…what’s up?
To recognize National Immunization Awareness Month (NIAM), the American Academy of Pediatrics is promoting its #WhyIVax campaign on social media, sharing resources from HealthyChildren.org, YouTube videos by Wendy Sue Swanson, MD, MBE on vaccines, AAP Voices blogs about the power of vaccines by authors that include Ari Brown, MD, and an interactive infographic on the history of vaccines displaying the long and impressive history of vaccines.
After twenty years in private practice pediatrics, I have had some pretty rewarding and memorable moments. I've convinced kids to drink more water, eat more vegetables, exercise regularly, and clean their rooms. My white coat is my super power!
These tiny victories remind me of why I love my job—I can make a positive difference in my patients' lives. I also feel this way when I vaccinate my patients.
#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Leanne, the 16-year-old founder of Positive Impact for Kids, a non-profit which raises funds to help hospital staff better meet the emotional and physical needs of their pediatric patients.
So, Leanne…what’s up?
#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Kate, a 2015 Speak Now for Kids Family Advocacy Day Hero. When she was 4 years old, Kate was diagnosed with Spinal Muscular Atrophy (SMA), a genetic, progressive, degenerative disease, that causes muscle weakness and other neurological, respiratory and orthopedic issues. With her Boston Children's Hospital team by her side, Kate knows that the possibilities for her future are limitless.
So, Kate.....what's up?
#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Anna-Maria, a recent Speak Now for Kids Family Advocacy Day Hero. Anna-Maria was diagnosed eight years ago with a low-grade brain tumor of the hypothalamus and optic pathways that caused hydrocephalus. Currently in treatment, and followed closely by multiple highly specialized physicians at Kosair Children's Hospital, Anna-Maria attends high school and is actively involved with her swim team and youth group.
So Anna-Maria…what’s up?