It’s a parents worst nightmare.
A nightmare that affects an estimated 16,000 children in the United States each year.
“It’s the most horrifying thing you could ever imagine.”
In an instant, a childhood cancer diagnosis can turn a family’s world upside down.
Treatment becomes the new norm, hospitals become their new homes, and with that comes immense challenges.
“We went from an 80 percent survival chance to 20 or less.”
According to the National Cancer Institute, 1 in 285 children in the United States will be diagnosed with cancer before their 20th birthday.
A statistic Joellyn Alexander of Hudson came to learn all too well.
“Sam was an amazing child. He loved everybody and everybody loved him. I was a stay at home mom. My husband works very, very hard so that I could be home and raise Sam with all of his special needs and therapies and all the things that we did. Sam was my entire life.”
Joellyn’s son Sam was 13 years old when he was diagnosed with Osteosarcoma, a cancer that typically affects the bones.
The diagnosis was devastating.
“Mentally, you’re exhausted. You don’t sleep, you’re constantly worrying, you just don’t know what’s going to happen next. We were in the hospital more than we were out. The first six months I remember asking Doctor Allen at one point, should I just change my address to 489 State Street.”
For many families, getting their child the treatment they need to survive involves long hours of travel, if not relocation, to be closer to the hospital.
“We live a two hour ride from here. I work at the Sherman Thriftway, so I had to change my days off so that I could come or my husband could come.”
Charleen stubbs of Sherman is the grandmother of Dylan, a 9 year old currently undergoing treatment for cancer in his heart.
“My mom is a little camera shy. That’s why we brought Nana.”
The last thing a family wants to think about is how they’re going to get their child to the hospital, often a difficult task.
“Just making sure that he gets to his appointments. She’s a single mom. We just kind of keep the family together to help”
“Seeing little kids to teenagers to young adults initially diagnosed with cancer, it’s a huge life changing event.”
With that comes stress, fear and uncertainty.
“If you don’t tell a child they’re wondering am I going to die.”
“I know what it’s like to be there at midnight and your kid is not well and you feel like you’re alone, you know, it’s not fun.”
While struggling to handle the emotional strain, many families must meet the needs of their sick child, while keeping the family afloat financially.
Child life specialists at EMMC try to help families deal with these issues.
“What if that was my child? What if that was my husband? What if that was my niece or nephew? And for a minute, it kind of gets you, but it’s helping them see the path one day at a time.”
That path is different for everyone.
“We really help support them through that process.”
From mounting medical bills and co-pays, the struggle to remain employed, increased rates of foreclosure, and the strain on marriages.
Many hospitals and agencies have changed the way they look at childhood cancer, focusing on the diagnosis affecting more than just the child, but the entire family.