PETERSON AIR FORCE BASE, Colo. --
Hearing news they least expected of their 3-year-old son, Tom, came as a complete shock to the Echelmeyers.
While stationed at Royal Air Force Alconbury, United Kingdom, in 2014, Sofia Echelmeyer and her husband Master Sgt. Thomas Echelmeyer, 21st Aerospace Medicine Squadron Bioenvironmental Engineering noncommissioned officer in charge, took their son to the emergency room when he started experiencing abdominal pain.
After doing several tests on Tom, the doctors found his blood platelet count was low and diagnosed him with acute lymphoblastic leukemia.
“You hear those words and the air gets sucked out of the room,” said Thomas. “You’ve got a team of people telling you this, including the doctor, and Tom was just oblivious to the words that were being said.”
Words coming out of the doctor’s mouth started to sound muffled, Sofia said.
“You know the scenes in movies where they keep the camera on the person and they zoom in? It felt like that,” Sofia said. “I basically went into shock.”
As soon as Tom was diagnosed, he was admitted to the hospital for nine days.
“Acute lymphoblastic leukemia grows really fast,” Sofia said. “They started treatment immediately.”
Tom had to go through the first four phases of his treatment in England. The four phases include induction, consolidation, interim maintenance and delayed intensification.
“When he was ready for long term maintenance treatment, they transferred us to Peterson Air Force Base,” Sofia said. “He started long term maintenance treatment at the Children’s Hospital [in Colorado Springs] and completed it there.”
Tom completed his treatments by November 2016, but it came with additional complications.
During his treatment Tom had to be on steroids, which had intense side effects, Sofia said.
“He was on steroids for 30 days,” she said. “The side effects are cumulative, so he had crazy intense mood swings, he was eating all the time and gained a lot of weight.
“It also caused him a lot of pain, and he stopped walking, so he wasn’t walking for 30 days. We had to carry him around. Then he was on these antibiotics that would give him diarrhea.”
Because Tom’s sickness was unpredictable, Thomas and Sofia said they had to cancel a lot of plans.
“Tom had this device called a Hickman line. It’s a tube that goes into his chest, where they could pull out blood and push in medication.
Because of that device, there were infection risks, so if he had a temperature of over 100.2 degrees, we had to bring him to the hospital and they would check his blood tests. If his white blood cells were below a certain amount, he had to be admitted and get antibiotics, and that could happen by him getting a cold.”
Whenever Tom’s temperature reached that number, his parents had to cancel events, holidays, parties and meetings.
“We couldn’t even have a birthday party for him when he turned 4 because we couldn’t predict anything,” Sofia said. “We spent every major holiday in the hospital. We had to cancel out on so many birthday parties.”
Now, at 8 years old, Tom is no longer undergoing treatments. During his treatment phase, however, his liver was damaged, so he continues to see a specialist at the Children’s Hospital in Denver who monitors his liver.
In addition to this, Sofia takes Tom to the hospital in Colorado Springs each month.
“He has lower antibodies, so he’s been getting intravenous immunoglobulin infusions every month, but he doesn’t take anymore chemotherapy,” Sofia said. “He also has to get his blood test every month to make sure he hasn’t relapsed.”
Throughout Tom’s treatment phase in England and in the U.S., the Air Force was and continues to be supportive, the Echelmeyers said.
“We arrived in Colorado Springs on a Thursday, and my office already had stuff for us in lodging, including food, toys, blankets and a humidifier,” Thomas said. “Because he had an appointment the day after we arrived, they provided us with the car, it was amazing.
“Even overseas, families provided food and things of that nature. Just the idea of the close-knit, military family coming together helped us out.”
Thomas was also able to take time off from work to help Sofia take care of Tom, and their second son, Luke, who was born when they moved to Colorado Springs.
After hearing the Echelmeyers’ story, the Children’s Hospital Foundation selected Tom as a child ambassador for their annual event in Colorado Springs. This event raises funds for the Children’s Hospital that will be built in Colorado Springs in 2019.
Thomas and Sofia said the best advice they can give to other families who are going through a similar situation is to know that you can get help and that there are resources available.
“There are people out there willing to help you,” Sofia said. “Communicate with those people, because you will have needs.”