Hear Axel's story,
as featured on KS95 For Kids.
Background
Axel Zirbes is 5 years old and was diagnosed with Acute Lymphoblastic Leukemia in fall, 2010. In July, he marked the halfway point of 3+ years of treatment.
Axel's Story
On the eve of Halloween, 2010, the Zirbes family had their lives changed in an instant. Their son Axel, then 3 years old, was diagnosed with Standard Risk B Cell Acute Lymphoblastic Leukemia (ALL) on October 30, 2010. Mom Justine says it was possibly the worst day of their lives. Words cannot convey the depth of despair they experienced that day.
Prior to his diagnosis, Axel had mild symptoms of fatigue, lack of energy and complaints of tummy aches. Initially brushing it off to a virus, his mom brought him to a pediatrician to check his iron levels because he also appeared a bit pale. His iron was dangerously low - level 3 (normal iron level is 12-16), and his blood counts were so low that they were told to go directly to Children's Hospital because Axel may have a type of tumor or leukemia.
At that point - Justine said she lost it, unable to read the map to the hospital they had given her or catch her breath long enough to speak coherently to her husband, Brian.
That following day, Axel had his bone marrow tested. Meanwhile, Justine was seven months pregnant with twins. The stress of the situation caused pre-term labor, for which she successfully avoided early delivery thanks to the efforts of nurses at next door Abbott Hospital. Justine remembers praying and begging for a miracle all night, but the next morning's bone marrow draw confirmed their fear, Axel did in fact have leukemia.
The good news for the Zirbes is that ALL is the most common form of childhood cancer - and also the most curable - thanks to many decades of research funding. The cure rate for Axel's leukemia is 92 percent on the current protocol. But the road ahead is long and tough for Axel & his family. Luckily, most of his treatments are on an outpatient basis-he now has monthly visits to get IV chemo, have procedures and draw labs, and he takes oral chemotherapy drugs at home every night. For a busy family of six (Axel's twin sisters, Ruby and Hazel, were born Dec. 6, 2010), they are making the best of the hand they've been dealt.
Axel's mom looks at her life this way - life before cancer (BC), and after cancer (AC). No matter where their journey takes them, she'll never feel the BC life again. Life now is lived by numbers. Blood counts, months of treatment, statistics. Even after Axel is cured, every bruise, every fever, everytime he has to have his finger poked will send waves of fear through her heart. She doesn't like to think too much about the future. Worrying doesn't accomplish anything. Cancer has stolen her peace of mind.
Axel and his family are not sitting on the sidelines of this battle, instead choosing to be at the front lines. Axel's older brother Carter participates in a triathlon to raise funding for a local organization dedicated to supporting families affected by childhood cancer. Last fall, Justine participated in a 33 mile, 15 hour hike along the Superior Hiking Trail to raise funding and awareness about pediatric cancer research. During that hike, she realized that what she & so many other moms needed was a support group made up of other moms whose children had cancer.
With a friend & fellow "cancer mom", Justine founded the Minnesota Momcologists group on Facebook. In its first nine hours they had 50 members, and today they have 112. Leukemia is "rare?" Relapse is "uncommon?" Not to them. There are far too many mothers feeling the same emotions Justine feels every day. Pangs of panic, never-ending questions into causes, cures, chemo. She says it is heartwarming, and heartbreaking to be part of such an exclusive club. As her co-founder Kim once said, "I truly believe that MOTHERS will be the ones to push a CURE through the finish line...because the stakes simply aren't higher for anyone else."
