When the nurses are ready for Noah Ellsworth, his mom’s phone plays the Star Wars theme song. He knows what to do, heading straight for the triage appointment where a nurse records his height, weight, blood pressure and temperature.
He removes his shirt and puts on a surgical mask as the nurse uses a device called a J-tip to numb the area around the access port on his chest. The J-tip pops and fizzles like a soda can, but the startling noise doesn’t phase him.
Noah sits quietly in the corner, continuing to play Minecraft on his tablet as the nurse preps the space below his shoulder. Anticipating the needle’s bite, he squeezes his eyes shut. Through the access port, she draws blood for testing and scans his medical bracelet. Noah takes his mask off, puts his shirt back on and heads out, looping around hallways to get back to the waiting room.
“It’s a lot less traumatic for him than it was at the beginning,” said Tim, Noah’s dad and associate vice president for university communications. “Now we joke that we could drop Noah off in the morning, let him go to his appointments and pick him up a few hours later. He knows the routine that well.”
Just after his fifth birthday in December 2013, Noah got sick. He was diagnosed with acute lymphoblastic leukemia (ALL) the following month and referred to St. Jude Children’s Research Hospital right away, where the Ellsworth family stayed for inpatient care for several days.
Tim said the first few nights of inpatient care were difficult as his mind raced with scenarios, questions and fear.
“I remember texting Dr. Micah Watson [former associate professor of political science] and asking if he could recommend video games—not for Noah, but for me,” he said. “Anything to keep my mind off what was going on.”
The family stayed in Memphis for the next eight weeks as Noah received treatment there daily.
In March 2014, they came home and have been going back every Monday since. At 7 years old, Noah has attended more than 100 weekly clinic visits. By the time his treatment ends in August, he will have done 120.
Early on, the chemotherapy frequently made Noah sick—he didn’t have much of an appetite or the energy other kids his age had. Certain things made him nauseous to the point of vomiting several times a week.
“It was like walking on eggshells,” his mom Sarah said. “We never knew what was going to make him sick.”
About 10 months into Noah’s treatment process, his parents were discouraged, thinking the next 22 might be just as painful.
But things began to look up as Noah’s body got used to the treatment, though he still gets sick from time to time. In fact, after this particular Feb. 29 clinic visit, Noah threw up when he got home. Just moments later, he was outside playing basketball like any healthy boy his age.
“A lot of kids you see [at St. Jude] don’t have hair or have lost an eye to cancer or wear prosthetic limbs,” Tim said. “You wouldn’t know there’s anything wrong with Noah most of the time. He takes chemo every night, takes a lot of medicine every day, but he just does it. He doesn’t complain. It’s part of his life now.”
Like most kids, Noah enjoys riding bikes, spending time with his cats and dogs and playing basketball in the yard with his older siblings. Sarah said he’s reading a lot now, which is encouraging because many children suffer from learning problems when going through chemotherapy. She counts every blessing she can.
Patients with ALL have too many immature white blood cells in their bone marrow, making it more difficult for the body to fight infection. It’s the most common type of childhood cancer, with about 3,000 new diagnoses every year in the United States.
Early on during a long day of chemotherapy, hospital staff worked with Tim and Sarah to help explain Noah’s condition to him.
“We told him his blood is like a garden being invaded by weeds,” Sarah said. “He’s really taken it all so well. He knows he needs this to live. It’s not fun, but there’s an end in sight.”
Like clockwork every Monday morning, the Ellsworth kids take a break from their homeschool routine and pile into the family’s minivan at 8:30 a.m. to head 74 miles west for Noah’s three appointments. During the drive, they work on homework, play games and sing along to the radio.
Sarah reads the newspaper and texts other St. Jude families for updates, as she’ll continue to do throughout the day. The Ellsworths have befriended lots of other families going through the same thing over the last couple of years, and they visit in the waiting room between appointments.
“One of the things I said early on in the process was ‘I don’t know how people who don’t have any kind of support system do this,’” Tim said. “We see kids there who don’t have much family support, and I’ve got family that were there to help us all through the process, a church family and a work family, and all those things make it a lot easier. The Lord has been kind and blessed us tremendously with people who have cared for us and loved us through this.”
When Tim and Sarah walk into St. Jude, it’s nearly impossible to tell which of their three kids is receiving treatment there.
The front desk receptionist not only immediately recognizes the family by name, but she has Noah’s medical number memorized, which she enters into the computer to be printed on the bracelet that nurses will scan throughout his three appointments today.
Emmalee, 9, heads straight to the craft table in the lobby, and Tim and Daniel, 12, go downstairs to retrieve the mail that arrives weekly for Noah. As they settle into the corner of a colorful waiting room, Noah sits on his mom’s lap to read letters of encouragement from relatives and church members. One woman from Cornerstone Community Church sends $3 every week so the kids can buy snacks.
The kids know it will be a long day because they’ve done this routine before—94 times before, to be precise.
Noah’s first appointment, where his port will be accessed, doesn’t start until 10:30, so the family has plenty of time to settle in. The kids unload their backpacks with books, crayons and Kindle Fires—generous gifts from friends at their church.
Sunlight pours in, providing a pleasant relief from the chilly room. The accents of those around reveal most are clearly not from the Memphis area. Vehicles in the parking lot bear license plates from across the country: Tennessee, Missouri, California, Arkansas, Georgia, Louisiana, Mississippi, North Carolina and Pennsylvania, among others.
When the hospital opened in 1962, the cure rate for ALL was just 4 percent. Now it’s up to 94 percent, thanks to the research the hospital does. St. Jude follows its patients for 10 years or more after active treatment ends, not only to make sure the cancer doesn’t come back, but many of those patients are case studies that benefit future patients.
“I really think if St. Jude thought the moon would make Noah feel better, they would do whatever it took to get him the moon,” Sarah said.
Families never receive a bill from St. Jude for treatment, travel, housing or food. The average cost of treating ALL over the two to three year plan is more than $485,000.
Last December, Tim participated in the St. Jude half-marathon for the first time. He ran alongside 21,000 people who collectively raised $8 million for the children’s hospital.
“St. Jude is a special place that saved my son’s life,” Tim said. “Getting to be a part of their biggest fundraising event of the year, being out there with thousands of people running through the St. Jude campus was especially meaningful.”
Thirteen family members, coworkers and church friends ran for Team Noah that day. Noah, Daniel and Emmalee held signs cheering people on and high-fiving them
as they ran by.
Running was not a consistent part of Tim’s routine until he started training for the race, but he was able to meet his goal of running the entire way. He admitted there were times when he got tired and wanted to walk, but his son’s persistence motivated him to finish strong.
“I knew I couldn’t quit because my son hasn’t quit,” he said. “He can’t quit—if he quits, he dies. If he can push through and know there’s an end in sight, I can too. It will be something for the rest of his life he’ll be able to say ‘I had leukemia.’”
The Ellsworths are planning a big celebration when Noah’s treatment wraps up in August. Make-A-Wish will send the Star Wars fan to meet Darth Vader at Walt Disney World.
Celebrating milestones like diagnosis anniversaries makes the process easier, Sarah said. At the beginning of his clinic visits, she made 120 tags that hung in the family dining room. Every week they take one more down. When they’re all gone in August, Noah will return to checkups every four months, then every six months, then just once a year.
“St. Jude is such a hopeful place, and it’ll be bittersweet for us when this is all over,” Sarah said. “We will kind of miss it, but Noah won’t.”
Noah avoids going near the hospital cafeteria as the excess aromas makes him nauseous, so the family eats lunch in shifts. After eating salads and burgers and pasta alongside doctors and other families, they wait a while before Sarah’s cell phone rings for the second appointment.
In the clinic room, Sarah and Tim learn what Noah’s absolute neutrophil count (ANC) looks like today. This measure of white blood cells will determine his health routine for the rest of the week. The doctor reports a low count of 500, which means Noah will be scheduled on a low bacteria diet, wear a mask in public and travel will be limited.
Because of his low counts, Noah will only get a half dose of chemotherapy at his third appointment in the med room this afternoon. His nurse gives him the medicine through the same port that was accessed earlier.
Last week the doctor increased Noah’s chemotherapy dose, which could be a reason for the low counts this week. Sometimes the counts don’t make a difference in how he’s feeling, but other times it can affect his appetite and energy levels.
“There is no rhyme or reason,” Sarah said. “Every time I try to predict his counts, I’m usually wrong.”
Back in the waiting room, Noah sits in his mom’s lap and dozes off for a while.
When this is all over, she won’t have to worry about her son’s blood cell count when he wants to go swimming with his friends on a hot summer day. He’ll go back to his normal pediatrician in Jackson and not have to be rushed to the emergency room when fever hits. He can jump to his heart’s content on trampolines, which his access port has kept him from doing for nearly three years. She’ll watch her son grow up to pursue his dreams of becoming a baseball player (or a policeman, or a firefighter…), leukemia just a memory.
At the one-year anniversary of his diagnosis, Sarah remembers asking her son if he ever wondered why this had to happen to him. To her surprise, he simply responded, “No.”
“I don’t know why either, but I know it’s for God’s glory and ultimately for his good and for our good,” she said.