Axel Zirbes's Journal
Thankful, hopeful, and optimistic
Written Dec 9, 2013 3:50pmA week ago, Axel received his second-to-last IV chemo at clinic. Friday he finished up this steroid pulse, which was pretty painless as far as steroids go. He totally rocked his port access, which has been hit or miss the past few visits. Best one in recent memory. We annoyed the staff by racing the halls in sit-scooters. We were just laughing, joking, and being silly. Axel even sent 2 soldiers to the lab after his blood, because he was feeling so generous. And for the first time, in a long time, I feel some relief from this beast that has been on us the past 3 years. I feel like it is only hanging on by a thread now--not clawing it's way up my back to get a better perch on my shoulders. Soon, that last tie will be severed and treatment will be behind us.
After my last post, we saw an outpouring of love and support from the people closest to us. A generous donation means that Axel's deductible is no longer a worry. A change in our childcare/Brian's work schedule means our weekly financial obligations are much more manageable for the time being. We have had friends rally around us, and we are just beyond grateful. I look forward to a time in the future, when we can repay the kindness we have been shown. In short, our whole family is less stressed and optimistic again. Brian and I have the luxury of focusing on Carter's wrestling, Axel's tutoring, and Ruby and Hazel's antics, instead of the grocery or utility bill. I won't name names, but you know who you are. And you can't know the impact you've made on our whole family this Christmas. Thank you. Sincerely.
We are in the beginning stages of organizing a "No Mo' Chemo" celebration, set for Feb 8. Nothing fancy.. just renting the gym at our local community center and ordering up some cold cuts from Costco. But we want to mark the end of treatment in a tangible way, and say thank you to all of you who have prayed for us, or shown kindness the past 3 years. So mark your calendars. Details will come.
Until next time... which I hope will be a photo of Axel holding his port in a plastic baggie with all of us piled on his hospital bed.
Much love, gratitude and blessings to anyone reading this Christmas.
3 years and counting: triumphs and challenges
Written 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.
Hand me downs
Written Oct 7, 2013 4:54pm
Beginning of October, our cancerversary month. It’s so hard to believe 3 years have passed since Axel’s leukemia diagnosis. Well,kind of. It’s like the days are long.. but the years are short. It was a rainy and cold weekend here… and my mother was visiting, so I had a chance to put away summer clothes, and weed out too-small items… and dig out Carter’s hand-me-downs for Axel. As soon as I opened that Rubbermaid tote labeled “Size 7/8 cold wx” I was transported back 3 years. These were the clothes Carter was wearing when Axel got sick. I recognized the first day of school shirt, the track pants that were given as a Christmas gift. I just remembered all those things he was wearing while I was huge and pregnant and sitting on the couch while Axel got bigger and bigger during induction. I remember looking at Carter, with his toothless smile (both front teeth were gone) and thinking, “in 3 years, Axel will be wearing those clothes and all this will be almost over.” And it’s here. I remember thinking that the babies who were still moving inside me would be almost as big as Axel was then. These faceless beings would be mini people running and jumping and playing before it’s done. Now it’s here. Axel has the toothless grin. Axel is not a little kid anymore. He’s ginormous.
We were at clinic today for his 4th-to-last Vincristine in his port. 4th-to-last port access. 4th-to-last steroid pulse begins today. His port removal surgery is scheduled for December 30, at 11 am. That was the final piece in the puzzle for me,you know. I’ve always known he will swallow his last pill on January 24, 2014. But that surgery to remove the medical device from my child’s chest wall has always been a question mark. I was insistent it be done before the first of the year, when the insurance deductible starts over. I am a little nervous to have it so close to the end of the year. What if there’s a blizzard or major emergency and his surgery is bumped? Not a lot of wiggle room there. But scheduling it early would mean cutting Christmas travel short. I’m going to have faith in God that it will work out the way it’s supposed to.
A nasty little virus has gripped my house the past month. Started with Carter, then moved to Brian, on to Axel and now the twins are suffering. Ruby gave me the cancer mom scare—complaining her back (hips) hurt, looking pale, sleeping a lot, not eating well. I took both of them in for a checkup,and the pediatrician humored me with a CBC for her, which of course, was fine. Hazel’s cough was awful enough to warrant a z-pack rx, which of course, made her break out in hives, on a Saturday, when Ready Care is closed. That’s the second antibiotic she’s allergic to. Both seem to be feeling somewhat better today. Just in time for the sun to come out. They have decided to be a kitty and a mouse for Halloween. Works for me!
Carter’s football season is almost over. Last game is Saturday, they guys have a 4-3 record, which Brian is pretty proud about. There’s a month off before wrestling starts,and I have decided to let Axel wrestle this year. Probably no tournaments, but still, he wants to learn some moves, and you know what, when he and Carter are in High School, Axel might have size on his side. Carter is fast and strong, but borderline skinny. Axel is definitely not skinny. :)
Gotta go, have to pick up the week’s Ramen rations since it’s steroid week.
Please keep my dad in your prayers, he underwent a significant surgery this morning and faces a 2 week recovery.