“It’s so hard to believe she is sick,” wrote Tim Craig on his blog while his four-and-a-half year-old daughter Scarlet bounced around and played in the courtyard of Portland’s Doernbecher Children’s hospital, the white inpatient wristband and farm animal-themed hospital gown stark reminders of what she was about to face.
Scarlet had already had a blood transfusion, a bone marrow biopsy, been stuck with needles and tubes and seen the word “oncology” much sooner than anyone should ever have to. She had a tumor near her adrenal gland – the “mother tumor,” her new, unfamiliar doctors called it, and another in her right pelvic region. But still, Scarlet “ran around and played with her sister and her friend Eric, and has been her usual self despite all the tubes and constant interventions,” Tim wrote again, clutching those tiny moments close for when he’d need them the most.
After a few days in the hospital, the doctors gave Tim and Scarlet’s mom Elena the results of her tumor biopsy: Stage IV neuroblastoma, and it was in her bones too. Cancer burst into their family like a thunder, and while Tim and Elena’s world crumbled all around them, for Scarlet, the start of chemo was still a day away so she just got into her little black plastic police car and laughed.
Their lives, they learned soon after, would be suffused over the next 12 – 18 months with long hospital stays (70 in 2014 alone), chemotherapy, radiation, a bone marrow transplant using Scarlet’s own cells, cutting-edge antibody therapy, and over 30 blood transfusions. But Scarlet’s chances for a cure were good from the outset, and on that – as well as the strength and spunk Scarlet was born with – the little family from Eugene built their hope.
Scarlet’s tumors began shrinking almost immediately, and even with “red blood cell counts so low that the oxygen wouldn’t be able to get to her body anymore,” as Elena remembered, thanks to her treatment and local blood donors, Scarlet was getting stronger. But then, after six rounds of grueling chemo, a routine bone marrow biopsy found neuroblastoma cells in her blood-producing bone marrow. Scarlet’s disease was moving around, taking a final stand. What it didn’t know: it was messing with the wrong girl and there was no distance her parents would not go for their daughter. “Failure is not an option,” Tim wrote the day before they received this devastating news. And they went to the ends of North America to prove it.
On the doctors’ advice, Tim and Elena took Scarlet to Benioff Children’s Hospital in San Francisco for I-131 MIBG therapy, which combines a radioactive iodine (I-131) with a chemical compound (MIBG) to deliver radiation directly into cancerous cells. This promising treatment made Scarlet’s body radioactive, so for five days at just five years old, she lived alone in a lead-lined room, her parents only able to see her from behind a lead shield. Aside from brief times when they could go into the room to help care for her, Tim and Elena were spectators to their daughter’s seemingly-unending strength, devastated not to be with her to give her any of theirs, but awestruck by how much she found on her own.
Scarlet’s brief foray into radioactivity worked – after the 60-day waiting period when Scarlet was able to go home, on May 11th, 2015, Scarlet was declared “disease free.” In all-capital letters, Tim wrote “for now she is a healthy five-year-old” on his blog. But eight months of treatment still lay ahead to prevent relapse. Scarlet and her family would undergo one final round of chemotherapy, and then six trips to Sloan-Kettering Memorial Hospital in New York for antibody therapy.
In the photos of Scarlet from her trips to New York, she’s mostly seeing the sights, smiling, laughing, dancing, eating ice cream, and acting silly. She looks healthy and normal, all a cancer kid ever wants to be. Today, she’s 12 and still looks healthy and normal, but thanks to her treatment and blood donors, she’s no cancer kid anymore. She’s a kid, a sweet, bubbly, tap dancing, fierce, tenacious kid.
Today, Elena knows the difference a pint of blood can make, and she’s become a regular donor. “People are always asking in the pediatric cancer world,” she said. “People always want to do something. What can you do? You can donate blood. If you’re just not sure, this is my story. This is my kid who got so many transfusions, and I know plenty of other kids who need a little help too. It’s a very direct thing you can do, and it’s the best way to save someone’s life.”
One final thought – Scarlet is one of hundreds of pediatric cancer patients Bloodworks helps reach remission every year through transfusion medicine and research that accelerates new cancer therapies. They’re counting on us, and we’re counting on our donors. Please consider donating time, money, or blood to support our mission today.