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Axel’s Story

Welcome to Axel's CaringBridge website.  Axel is 6 years old and was diagnosed with Acute Lymphoblastic Leukemia on October 30, 2010.  He completed his 3.3 years of treatment on January 24, 2014.  You can read about his diagnosis below.

"Every day is a gift, that's why they call it the present."

First of all I'd like to thank everyone for the outpouring love and support you've shown our family.  I can't tell you how much it means to us to have such caring people in our lives.

Axel was diagnosed with Standard Risk B Cell Acute Lymphoblastic Leukemia (ALL) on October 30, 2010.  It was possibly the worst day of our lives.  Words cannot convey the depth of despair we experienced that day.

Axel was sick about a week before I took him in.  We were visiting a friend's house and he unexpectedly said he felt sick and threw up.  He also was acting tired, not wanting to climb stairs and walking slowly.  He didn't have a fever, so I chalked it up to a stomach bug.  But the fatigue persisted, and he started to complain of tummy aches.  Then I started reflecting on how often he seemed tired.  When his day care provider mentioned he looked very pale compared to the other children, I took him to the pediatrician.  I thought his iron might be low.

His iron was dangerously low at 3.  A normal iron level is 12-16.  But the pediatrician said what concerned her even more than that was his blood counts.  Platelets and white blood cells were also far too low for normal.  When she said I needed to take him immediately to Children's Hospital and this could be a tumor or leukemia, I lost it.  I could not read the map they had given me to the hospital or catch my breath long enough to speak coherently on the phone to explain to Brian what was happening.  It was all I could do to remain calm enough to drive to the house, where a neighbor took Carter so Brian and I could take Axel to the ER.  

After looking at his blood under a microscope, the ER physician said he found abnormal cells and that we needed to admit Axel to the Hematoma/Oncology Unit to have his bone marrow tested.  7 months pregnant with twins, the stress of the situation made me go into labor, but the nurses at Abbot's labor and delivery unit were able to stop the contractions.  I cried and prayed and begged for a miracle all night, but the morning's bone marrow draw confirmed our fear, Axel did in fact have leukemia.

The good news is that ALL is the most common form of childhood cancer. As his doctor said, "It's the kind of cancer you want to have if you have to have cancer."  The cure rate for Axel's leukemia is 92% on the current protocol.  But the road ahead is long and tough.  Axel will be on chemotherapy for at least 3 1/3 years.  A portacath was surgically implanted into his chest to administer the intravenous drugs and draw blood.  Most of his treatment will be on an outpatient basis-- he will have weekly clinic visits to get his meds, have procedures and draw labs, and will also take oral chemo at home.  There is nothing that caused this.   Basically one white blood cell mutated and started cloning itself, got out of control, and crowded out all the healthy cells. 

Our mission now is to get Axel healthy. With God's help we'll make it through this a stronger family.  Please keep Axel and all of us in your prayers.  I can only have faith that God gave us this challenge for a reason, even if we don't know what it is yet. 

I'll keep this site updated as often as possible.  Thank you for taking the time to read Axel's story and make sure you hug your kids extra tight tonight.  I know I will be from now on and forever.

Love, Justine   

UPDATE:  Ruby and Hazel were born Dec 6, 2010, at 34 weeks gestation and spent 11 days in the NICU.  They are home and thriving. 

A trust fund has been set up to help offset Axel's medical expenses.  Donations can be made at any Wells Fargo or Wachovia Branch, or by mail at the address below.

Axel Zirbes Health Fund Trust
Wells Fargo New Hope Branch
8320 42nd Ave
New Hope, MN 55427