St. Jude patient, Billy

Patient Story - A day with Billy Dorn

7:58 a.m. – A Different Kind of Breakfast

It is a little before 8 a.m. and 6-year-old Billy Dorn is slipping on his shoes, getting ready to catch the bus. He has just finished his breakfast, so his father disconnects the feeding tube protruding from Billy’s chest.

Billy’s breakfast doesn’t come in a bowl or on a plate. It is in a clear plastic bag that hangs from an IV pole. It is the only way Billy can get the nourishment he needs while receiving chemotherapy, which makes him too ill to eat.

Sheila Dorn plunges a needle into a plastic bottle of medicine, pulling out just the right amount. She brings it to her son, who helps her attach the now needle-less syringe to the same tubing that had helped him “eat” his morning meal. Mom attaches the syringe. Billy places his hand on the plunger and pushes the medicine into his veins.

So begins the day of Billy, a brain tumor patient at St. Jude Children’s Research Hospital.

It is not a morning filled with cereal, last-minute homework or frantic scrambles not to be late for work or school. It is a carefully prepared plan—the best his parents can do—to make sure that Billy will have an uneventful day as he heads to St. Jude for his day’s treatment.

He finishes his medicine, pulls on a blue coat and he and his family walk downstairs from their two-bedroom apartment in Target House to wait for the bus that will take them to St. Jude.

When doctors told Sheila and her husband Bill that their son had a brain tumor called medulloblastoma, the news was crushing. Billy’s younger brother, Jacob, had died from a heart defect just 11 days after being born. Doctors gave Billy a 30 percent chance of beating the cancer.


8:45 a.m. – Finding Hope

“That wasn’t good enough for us,” Sheila says. “We weren’t going to lose another child.”

At St. Jude, Sheila says, the family found the hope they were looking for. St. Jude, which has pioneered treatment for childhood catastrophic diseases for 40 years, gave Billy a 60 percent chance of beating the disease. He would have to undergo aggressive treatments including high-dose chemotherapy and high-dose radiation. The family moved into Target House, a temporary home for patient families staying in Memphis for more than 90 days.

“Hi Billy!” the bus driver says as he steps off the bus to greet the Dorns. He holds his hand up and Billy slaps a high five and smiles.

The bus takes the Dorns the four miles from Target House to the hospital, dropping them off at the Patient Care Center where they are greeted by a statue of St. Jude Thaddeus that hospital founder Danny Thomas unveiled at the hospital’s opening in 1962.

Billy’s first appointment of the day is to test his pulmonary function. Patients receiving chemotherapy at St. Jude must undergo the test on a monthly basis to make sure lung capacity has not diminished.

“You’re going to take four little breaths then one great big breath,” the technician tells Billy.

“Pretend you are blowing out birthday candles,” Sheila says.

After a little bit of practice mimicking the technician’s breathing, Billy breathes into the mouthpiece of the measurement device. Four little breaths and then Billy inhales as deeply as he can, straining to get the air in. He then pushes all of the air in his lungs back out, his cheeks reddening. He does this several more times before the testing concludes.

“You did a great job,” the technician says. “Better than last time.” Billy’s mom and dad look on proudly. Billy gives a smile.

“Now you can go through my toy box,” he says as he points Billy to the large clear box on a desk, filled with coloring books and racing cars and toys of all kinds. Billy gleefully digs through the box, finds a purple ball and claims it.

“Thank you,” Billy says in a frail little voice as he and his parents head to a waiting area until the next appointment


9:32 a.m. – Billy’s Strength

“Between appointments we usually hang out in the clinics,” Sheila says. Some days, the St. Jude Child Life department will have activities for the children, ranging from crafts to games. This day, Billy entertains himself by playing with his new purple ball, tossing it back and forth to his mother as they await the next appointment.

“Billy Dorn, please come to Assessment Triage,” the nurse’s voice rings through the hospital public address system. “Billy Dorn, please come to Assessment Triage.”

Billy takes his mother’s hand as he walks down a hallway to a square, silver plate in the floor that is the hospital scale. The process is done daily so Billy’s doctor can monitor his weight. Blood work is also taken so that Billy’s chemistry can be evaluated, from his absolute neutrophil count (ANC), which measures the body’s ability to fight infections, to the amount of oxygen in his blood.

Thankfully, the blood can be drawn from Billy’s line—the same line that gave him breakfast—meaning that he doesn’t have to be poked with a needle every day. He watches intently as the nurse pulls the plunger back on the syringe and his crimson blood flows into the container.

“Billy is a strong individual,” Sheila says. “He continues to fight because he thinks about going home and playing with his dog … getting back to his normal life. I’ve learned that he’s stronger than I think I give him credit for.”

Billy’s pulmonary function has been checked and he has had his weight recorded and blood taken. It is approaching 11 a.m. and more tests are scheduled. One of them Billy is dreading.


11 a.m. – Medical Play

Billy spent his morning bravely going through a pulmonary test and having his weights and measurements taken. More tests loom, but right now it is time to play.

Billy and his family make their way to one of the waiting areas in the Patient Care Center where the St. Jude Child Life department is having Medical Play.

Medical Play is one of the tools the St. Jude staff uses to help patients understand some of what is happening to them. During Medical Play patients choose a doll and, using actual medical supplies, “operate” to put in a port. When the operation is done, the doll will usually have the same port as the child.

Billy works to give his doll a port right in the middle of its chest … just like his.

“It helps them understand a little more of what they are actually going through,” Sheila says.

With play time over, Billy and his family head to Audiology for Billy’s hearing test. The audiologist greets them and gets Billy set up in a sound-proof booth.

Chemotherapy can sometimes harm a patient’s hearing. Some patients receive a medicine called amifostine before each round of chemotherapy to reduce hearing loss. But Billy reacted to the drug with very low blood pressure and was unable to continue it. Now his doctors are worried about his hearing.

Billy performs hearing activities, including repeating words and phrases that he hears in the headphones and throwing small blocks into buckets when he hears a particular sound. The testing doesn’t take too long, but Billy is getting tired. Finally, the audiologist tells Billy to come out of the booth.

The news is not good. The chemotherapy has damaged Billy’s hearing to the point that he will need to be fitted for hearing aids. The Dorns and the audiologist briefly discuss the next step but are interrupted when Billy is paged overhead. It is time to go to EKG.


11:30 a.m – ‘I HATE THIS PART!’

Just as chemotherapy can harm a patient’s hearing, it could can also affect the heart. Patients undergo regular EKG testing to make sure everything is working properly. To do that, Billy will need to have a number of probes connected to his chest, including near his hickman lines.

Billy is lying down, shirtless, on a bed. The square white bandage that protects his lines covers most of his chest. Sheila explains to Billy what exactly is going to happen. Billy is scared. He knows it is going to hurt.

“He doesn’t like the idea of having the device on his chest because he is very sensitive of his hickman lines,” Sheila says.

“Sit on the bed with me,” Billy tells his mom. She complies, crawling up beside her son and lying down to his right.

The small round stickers that will hold the probes are placed around Billy’s chest. Finally, it is time to affix the one near his lines. Sheila helps to comfort Billy and pull his bandages down. Billy begins to cry. He closes his eyes as tight as he can, tears streaming out of the sides. “AHHH. I HATE THIS PART!” he screams as loud as he can.

But then, the part he dreads most is over. He slows his breathing, and the technician gets all the information she needs. Billy’s heart looks good. Billy himself peels the last of the stickers from his chest. He even gives an energetic smile. But when he gets up, Billy looks exhausted.


1:45 p.m. – The Final Test

After lunch, Billy rides a tricycle through the hallways of St. Jude. Trikes, along with wagons, are the preferred mode of transportation for St. Jude patients. He rides his trike all the way to the procedure room for his last appointment of the day: an ABR (auditory brainstem response) test. Whereas the earlier hearing test determined the loss of hearing, the ABR test will look at the actual damage that has been caused to the cranial nerve that controls auditory function.

For this test, Billy will be sedated. He must lie perfectly still, a task that would be difficult for any 6-year-old without the added challenge of having a medical test performed. “Sleep medicine,” as Billy calls it, is pumped into his hickman line. Seconds later he is asleep, and the doctor begins the test.

Sheila and Bill go out to the waiting area. Almost an hour-and-a-half later, Billy’s test is completed. He slowly awakens to see his mom and dad there with him.

“How’d you do, Tiger?” his dad asks. Billy groans. Already tired from the day’s activities, Billy doesn’t really want to wake up. A cold drink helps clear away some of the cobwebs. And then good news: the day is over. As the time nears 4 p.m., Billy and his mother and father climb back aboard the same bus from the morning and head back to their temporary home at Target House.

“We have gone with the attitude of being positive, knowing we needed to be strong for Billy,” Sheila says. “If he saw us get down or second guess, he would not want to fight.”


One Month Later – Coming Off Chemo

Billy has reached a milestone: his final chemotherapy treatment. In celebration of this major milestone, Billy gets to place his hand print on the fourth-floor wall of the Patient Care Center. Billy places his red- and orange-painted hands flat on the wall, joining the other multi-color handprints that adorn it.

Beneath his hands, Sheila writes in black marker Billy’s name, birth date, his diagnosis and when the cancer was discovered. Beneath that, she then writes, “Thank God for every day we have!”

Then, Billy heads to the medicine room for his final session. The nurses all gather around Billy’s chair and sing the Coming-Off-Chemotherapy song, a tradition at St. Jude, sung to the tune of the famous Oscar Meyer bologna song.

Our patients have the cutest S-M-I-L-Es.
Our patients have the sweetest H-E-A-R-Ts.
Oh, we love to see them every day.
But now's the time we get to say
Pack up your bags, get out the door, you don't get chemo anymore.

After the last stanza, the nurses cover Billy in confetti and silly string. Billy picks some of the string off of his bald head and throws it back playfully at some of the nurses. He clasps his mother’s hand. And then Billy Dorn smiles.

 

Last update: July 2003