Holding hope for Aspen Deke

After hearing that his daughter was diagnosed with a rare and very aggressive form of cancer, Eric Deke said he felt as if he had been punched in the stomach.

 Nineteen months ago, 5-year-old Aspen Deke from Buckner was diagnosed with Philadelphia-positive acute lymphocytic leukemia, but thanks to an aggressive treatment regimen, she has been in remission for nearly one month.

“Amanda (Aspen’s mother) and I talked about it after the doctor told us what was wrong with Aspen and it feels like you’re being punched in the gut. It takes your breath away,” he said.

Normally, ALL has an 85 percent cure rate. However, Philadelphia chromosome-positive ALL is an abnormality in which chromosme 22 contains part of chromosome 9 and causes the cure rate to decrease to only 25 percent.

Aspen’s symptoms became noticeable on Thanksgiving Day when she and her family were spending time at Eric’s aunt’s house. Eric said Aspen is an active little girl and is always up playing. However, on this day, Aspen didn’t even feel like getting up out of bed.

“She was laying in bed at my aunt’s house and she just wanted Amanda by her side,” Eric said. “Her ankle hurt but she hadn’t twisted it. She was lethargic but talking normally. She just didn’t want to do anything.”

As the day wore on, Aspen got to the point of limping and even crawling because she couldn’t put pressure on her ankle.

Once the pediatrician had a chance to examine Aspen and review the symptoms, he figured the most likely explanation was lead poisoning from some of Aspen’s toys. He ordered some blood tests and sent her home.

The following day the pediatrician called and recommended having more blood tests to rule out anything life-threatening.

When he wanted to see the family after the results, Eric and Amanda grew concerned.

“We drove out to Children’s Mercy and he told us something looked funny with the tests,” Eric said. “He said he was thinking this may be leukemia. We sat in limbo until the next day when they did a bone marrow test to make sure. When it came across as leukemia, I was in shock.”

Aspen and her family returned home to do some research of their own. Eric said once they understood what they were dealing with, they began to feel a little bit better about the odds.

But their optimism was tested the following week when the pediatrician again invited them in to discuss another finding.

This time, he told the family they were dealing with a much more aggressive form of ALL.

“When he took us into the conference room he explained the Philadelphia chromosome and the difference it makes,” Eric said.

“But it’s like getting diagnosed again. You never get to the ‘OK’ point even though we weren’t quite there yet anyway. It was like getting sucker punched again.”

Eric said Aspen is aware of what’s going on inside her body, but not to the full extent. Eric and Amanda told Aspen that she had a bad bug and it would take a long time to get rid of it. Eric said Aspen is very bright and even knows the names of the medications she is given. She’s more aware, he said, than a 5-year-old should be and more than he would want her to be.

The family and Aspen’s pediatrician came up with a course of action to fight Aspen’s “bad bug” that includes chemotherapy for three years. Every third week, Aspen spends between five and 10 days in the hospital for her chemo and one day each week she has a check-up to see how the treatment is progressing.

The only problem with the chemotherapy, Eric said, is that it causes Aspen’s immune system to wear down, and leaves her more vulnerable to sicknesses such as the common cold or flu, illnesses that are easy for a healthy individual to fight off but nearly impossible for Aspen’s body to deal with. She has had three different strains of the flu, several blood infections, “’roid rage” from a steroid and most recently two bouts of typhlitis, a bowel infection that has the potential to cause her bowels to rupture if there is too much of a bacteria overgrowth in her intestines.

“When Aspen got the infection for the second time, doctors said it was considerably worse and it was time to be very concerned. They mean it when they say it, that’s not a word they throw around,” Eric said.