When her son first became ill in December 2021, Amy Nicholas never would have imagined that Ru’s journey would one day involve weekly trips to the hospital for blood or platelet transfusions.
They didn’t even know where the closest hospital was.
The Nicholas family had recently moved to a new home near Waco, Texas, and were still familiarizing themselves with the community when they noticed something wasn’t right with their then-3-year-old.
“I was in shock because I’ve never seen a kid’s eyes as bright yellow as his,” Amy recalled. “I was like ‘OK, we have to hurry up and get to the hospital.’”
The family quickly searched for the closest emergency room, only to discover it was approximately 30 minutes away. With no time to waste, they hit the road.
“All I could think was ‘Oh my God, is my kid going to be OK?’” Amy remembered asking herself. “Are we going to make it in time to make sure he doesn’t get worse?”
And so began a 14-month (and counting) journey that involved visits to four different hospitals, a move to southwest Missouri and two diagnoses that both shocked the family and gave them a new perspective on the importance of giving blood to help people in similar situations.
“Without those donors, I really don’t know what this kid would be doing,” Amy said.
‘HE WAS MISERABLE’
Ru, whose full name is Reuben, arrived at his first hospital on the morning of December 28, 2021.
Doctors performed some tests and determined that his liver enzyme levels – which are typically well below 100 – were closer to 3,000. With no immediate explanation apparent, Ru was transferred to a children’s hospital 40 minutes down the road in Temple, Texas, to receive more specialized care.
“As his body was slowly shutting down, you could just see he kept getting more yellow,” Amy said. “He just wasn’t OK. He just wanted to sleep the pain away. He was miserable and it was really heartbreaking to see your healthy child go from being happy and everything to having no energy and just miserable.”
After a three- or four-day stay in in Temple, Ru was transported by emergency flight to a hospital in Dallas — about two hours by car from the family’s home — to meet with a liver specialist.
“After 20 days in total, the only thing they could tell us was he had hepatitis,” Amy recalled.
‘HIS LIVER WAS FAILING’
Ru took steroids for seven months to help his liver recover.
About halfway through his treatment, the family relocated to McDonald County, Missouri, in April 2022.
That September, the family got the news they’d been waiting nine months to hear. Shortly after his fourth birthday, Ru’s liver had completely healed.
“On our way home I’m thinking he’s finally better,” Amy said. “No more medicine or anything.”
Then the phone rang.
Doctors saw Ru’s blood counts were abnormally low, and he needed to return to Arkansas Children’s Northwest in Springdale – the closest children’s hospital to their new home — for a transfusion within the next few days.
“Since then, he’s had to have platelets weekly and blood transfusions every three to four weeks,” Amy said. “But it all started because his liver was failing from hepatitis.”
‘HIS BODY IS TRICKING HIM’
Ru was subsequently diagnosed with aplastic anemia, a rare and serious blood disorder. Doctors believe is connected to his initial battle with hepatitis.
“His body is tricking him into attacking his own bone marrow,” Amy explained.
As a result, Ru’s own body isn’t producing an appropriate amount of blood cells. The condition leaves him tired and more prone to uncontrolled bleeding, as he doesn’t have enough platelets to form clots.
“There are some times when his platelets are so low I can’t even brush his teeth because his gums and his tongue will start bleeding from just brushing his teeth,” Amy said.
Ru received at least 15 transfusions of platelets and red blood cells between September 2022 and January 2023, and will likely need recurring transfusions for the foreseeable future.
Ru depends on volunteer donors to help him get better, as blood and platelets can’t be manufactured. And each of those transfusions have had a significant impact on his overall health and demeanor.
“He’s definitely a different kid, especially when he gets blood,” Amy said. “In the beginning of it, he’s really, really exhausted and tired. He’s just not in the mood and then by the time we’re out of there, he is like full-on energy.”
‘JUST REALLY THANKFUL’
Ru has begun a treatment process that could ultimately reduce or eliminate his dependency on transfusions, but it’s still too early to determine how effective that could be.
In the meantime, blood donors will continue to play a key role in preserving and enhancing his life.
Community Blood Center of the Ozarks is the exclusive provider of blood and blood products to 40-plus hospitals in southwest Missouri, southeast Kansas and northwest Arkansas, including Arkansas Children’s Northwest. That means when Ru needs a transfusion, it comes from a CBCO blood donor.
“It’s crazy that someone so random was going out of their way to help him,” Amy said. “They don’t even realize that they’re helping a 4-year-old.”
While most blood donations typically take less than an hour – about 10 minutes of which are actually spent giving blood – platelet donations are a longer process because they involve a specialized machine that separates the platelets from the rest of the components that make up a person’s blood.
And because platelets can only be stored for seven days — compared to 42 days for whole blood — the local supply must be constantly replenished to ensure the shelves are always stocked. The dedication and generosity of these donors isn’t lost on Amy, who struggled to find the words to describe their gifts.
“If I could tell each one of them I appreciate them actually saving my child’s life and taking the time to do something so – I don’t even know the proper word,” Amy said. “I’m honestly just really thankful.”
Donating blood with the Community Blood Center of the Ozarks allows more than 40 local hospitals to continue to provide lifesaving treatment to friends, neighbors and loved ones here in our communities. There is no other organization that supplies blood and blood products to these hospitals, who rely exclusively on CBCO donors to help patients like Ru. What kind of stories will your donation inspire? Click here to find a drive near you.