Welcome to Axel's CaringBridge website. Axel is 6 years old and was diagnosed with Acute Lymphoblastic Leukemia on October 30, 2010. He is in the third year of 3.3 years of treatment. You can read about his diagnosis in the introduction, My Story.
"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.
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
3 years and counting: triumphs and challenges
Oct 30, 2013 4:46pm
So 3 years ago, today, I was sitting in a playroom on the 8th floor of children’s hospital, watching a 3 year old Axel play with the foosball table, while an oncologist stood next to me and said, “It’s pretty much what we thought it was.”
“So he has leukemia?”
She nodded, sadly, and softly said, “Yes.”
I’ll never forget that look in her eye, or the relief I had,days later… knowing someday this would all be a distant memory. After we were told how long we would be on this childhood cancer journey… I just kept focusing on the 3 year part. I kept saying to myself, “In 3 years, Axel will be fine. In 3 years I won’t feel this anxiety and despair. In 3 years, things will be back to normal. In 3 years everything will be better.” And is some ways, the most important ways, things are better. Axel is healthy and loves first grade. He is rounding the corner to stopping chemo. Ruby and Hazel, which could have been born that night, weren’t, and now they are healthy, active, beautiful, smart little girls (with bad haircuts). Carter has matured into a fantastic young man who excels in academics and sports, and is dedicated to helping families like ours. We have made it this far. We have a lot to be thankful for, and proud of.
But there are ongoing challenges and hardships. I’m going to write a bit today, about something that many cancer families are ashamed of, myself included. It’s a subject most cancer parents don’t like to discuss and keep hidden away. Money. This is so uncomfortable for me to put out there, but I feel like I have to. I know I’m not alone, and the point of this page was always to communicate our journey, both the victories and the struggles. We put on a brave face, and people think everything is hunky-dory, when behind the scenes, things are falling apart. I feel like a duck on water. On the surface all you see is graceful gliding, but if you look under water, you realize those ducky feet are paddling like hell.
A source of income that we had, which accounted for about 10% of our budget, has been lost. Axel’s health care trust, from the amazing bowling fundraiser our friends had for us back in 2011, is nearly gone. At the time enough money was raised to pay for 2 years of our deductible and out of pocket expenses. Through careful planning, we stretched it an extra year. But now that account is exhausted. A medical grant that assisted with expenses that insurance didn’t cover, from United Healthcare Children’s Foundation, will also hit the lifetime max, likely by the end of January. And thanks to the “Affordable” Healthcare Act,(which I naively thought would help people in situations like ours) our insurance premiums will MORE THAN DOUBLE January 1. Co-pays will cease. We will have to pay co-insurance on everything, including prescriptions, and a $5000 deductible must be met before insurance will cover ANYTHING. No, MNsure is not an option. The premiums there, for just me and the kids,would be double what I will pay through my employee plan.--8x what i pay now. So this means less money in my paycheck as well, on top of the increased medical bills—because even though Axel will stop chemo, he still must go to clinic every month, for labs and doctors exams--for the next year. After that, it will be every other month for another year. In short, we have to adjust our budget for 2014 by about $20K.
It is so frustrating, for both Brian and I to be responsible, intelligent, professional people with college degrees, and good jobs, and STILL not be able to make ends meet. I garden and can food; I cut coupons, cancel cable and eating out. Our kids wear hand-me-downs, I sell everything they outgrow. Our only expenses are necessary ones: mortgage,childcare, car payment, student loans, utilities, gas, and food. And of course,our Children’s bills. We might have been able to absorb the medical bills, with sacrifices if we hadn’t lost income and been forced into more expensive insurance. Please don't take this as complaining. I am so so grateful we got this far. I just thought, 3 years ago, we would be in a different place, we'd be able to handle it on our own. And I keep reminding myself, this is all temporary. In 3 years the twins will be in school full time and Axel’s bills will be much less. But that doesn’t help me worrying about going bankrupt in the meantime. It’s terrifying.
So what I ask for today, is continued prayers. Pray for us to be wise in our decisions and for pray for peace from the anxiety that keeps us awake at night. The last 3 years weren’t a cakewalk by any means… but still, the road is about to get a lot rougher in many ways than it has been.
Thanks for thinking of us.
Love to everyone reading, and have a safe and fun Halloween. Axel is going to be a vampire-soldier. Not just a soldier. A vampire solider. I don't think he understands that it doesn't really work to put vampire in front of everything, the way you put zombie in front of anything. Carter is going as a zombie football player, Ruby is Super Girl and Hazel is "Kitty Girl." Not a kitty cat. Kitty girl. She's very specific. She runs around with Ruby yelling "Kitty girl to the rescue!" It's so stinking cute.
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