Axel Zirbes's Journal
Reminder: No Mo' Chemo Celebration!
Written Feb 4, 2014 10:13amFor those of you who live close and would like to celebrate Axel's victory over leukemia (VL day!), here are the details. Really truly, this is a huge milestone for our whole family. I can't stress enough how much it will mean to us to have the people who love him most present to wrap up this chapter in our lives. It is a really, really big deal, maybe more to me than to him!
Saturday, Feb 8, 6-9 pm
Crystal Community Center
4800 Douglas Drive, Crystal
Face painter 6-7:30
Bounce houses and ball games in the gym from 7-9
We'll have heavy hors deurves, beverages and cake of course!
Please wear gold or camouflage to honor my childhood cancer warrior! If you know you are coming, leave a message on the guest book!
Just like that
Written Jan 29, 2014 1:24pm
It’s over. It’s surreal to write that. Well, the active treatment part, the endless appointments, pokes, and pills, are done at least. Axel celebrated his last pill on Friday, Jan 24 with a “Suck It Cancer” dance. If you’re my friend on facebook, you may have seen it. On Saturday he had ice cream for a bed time snack-- Because he can. His pill was to be taken on an empty stomach, no dairy, so he hasn’t had ice cream (or yogurt or milk) past 7 pm in more than 2 years. That was a treat. Now we move on to the “off treatment” part of our lives. A new chapter, a new beginning. I have learned so much about myself, my abilities as a mother, and gained some lifelong friends in this world. I know we’ll never really be done with it. I will always be fighting for our kids in some way. I have to pay our blessings forward. Here’s a great story:
Friday night, before Axel’s last pill, we went out as a family to a local bar and grill we’d never been to before—“Outtakes.” I told the kids they could have what they wanted, we even ordered appetizers and no one had to share anything. The kids were allowed to play the arcade games, Brian and I played pool and had beer, and I mentioned to the waitress we were celebrating. When she asked why I told her it was Axel’s last chemo night. She was touched and said that certainly is something to celebrate. She brought us 2 desserts on the house, which was so nice, and later came back and said our whole meal was on the house. Of course I started in with the water works. I didn’t tell her about Axel to get a free meal, I just couldn’t contain my pride and excitement. She wouldn’t even allow us a tip, we had to sneak it under a plate, to be sure she got it. So now I’m waiting for my unexpected opportunity, to do something similar for a family who could use a blessing. I’m sure I won’t have to wait long. It’s all around us, if you keep your eyes open.
On Monday we celebrated at clinic. Dr. Schultz gave Axel a trophy for bravery,and Carter and the girls got medals for strength. Ruby is still wearing hers, 2 days later. It wasn’t all fun and games though. We had the first non-port blood draw… and man was that tough. Axel hasn’t had a finger poke in years, but he remembered that it hurt. We tried the lidocain lotion on his arm, but it made his skin too red, and they couldn’t find a vein. We tried talking to him for 45 minutes to calm him down and convince him the finger poke isn’t so bad. He was just not having it, so Brian had to hold his arms and I held his hand open for the finger access. He was so mad, so scared. He kicked and screamed and I’m sure terrified any other kids who were in the building, he was so loud. And I’m sure he felt we betrayed him. Moms and Dads are supposed to keep you safe and happy, not hold you down so some guy can make you bleed. It took a long time to calm him down after that. It was one of those horrible parent moments, when everything you worked for seems to have been in vain. I mean seriously, he has had chemo coursing through his blood for 3 years, 2 months, and 25 days. It’s just a finger poke. But to him it was absolute torture. We had a long calm discussion about it at home later. This is what has to happen and this is what we have to do at clinic now. We can try the arm again, but a finger poke is always possible. Just the way it is bud, can’t get around it. At least we’ll only be doing it every 2 months instead of every month. The protocol has changed, so now off treatment appointments will be bi-monthly. Oh my gosh, we haven’t gone more than a month without seeing a medical professional forever… what will I do with myself?
So that’s it. Active treatment complete… now we hope and pray and have faith in God that Axel, and all our kids live normal, healthy lives from this day forward. That side effects won’t show up or are at least manageable. That we can be one of the success stories that people go to, when they hear of another child diagnosed with this horrible disease. I’m not signing off completely… no, I’ll still write here from time to time. But until the next time, I hope everyone who has followed us and prayed for us has a peaceful heart as they read these lines. Because I certainly do.
Love to all,
Written Jan 3, 2014 9:19amOn Monday, Dec. 30, Axel was officially de-ported! His incision is healing well, and the procedure went perfectly. His only complaint was that they threw it away before he got to see it. (They took a picture of it, but that wasn't good enough). Mom was pretty irritated about that too. It's been in his chest 3 years, at least let us take a look at it. He also was not keen on the IV in his hand. We got that out as quick as we could after he woke up. But he had a few surprises waiting for him, including an iPad mini, and a box full of great army guy stuff sent by a generous co-worker's family. That was a big hit.
His regular nurse and primary oncologist came to clinic specially before his surgery to make sure they were the ones to access his port for the last time and do his exam and final chemo through the port. That was really special. After next month he moves to the survivor part of the clinic, and will be seeing one of only 3 doctors who do follow up care. He'll have his labs drawn through his arm by a lab tech, not a regular nurse from now on, so there's no guarantees he will see his usual team. His next appointment will be on Jan 27, where he'll have a little End of Treatment Celebration at clinic. He takes his last 6MP pill on January 24, which is his official last day of treatment. Tonight, he will take last steroid pill, hallelujah! I really can't believe it's here. We are so blessed.
I'm typing this from my sister's house in Wisconsin. The kids and I came back yesterday, to visit my dad in the hospital. He had surgery on Monday as well, to repair an Abdominal Aortic Aneurysm. It is a pretty major surgery, and yesterday his heart was racing, and beating out of rhythm, so he was moved to the cardiac floor. The treatment for that is usually electric shock to get it back to a normal rhythm, then blood thinners, but that's not an option while he's recovering from his surgery, so he's on an IV med to keep his heart from beating too fast. Despite this setback, his pain is well controlled, so we're all grateful for that. If you could say a prayer for healing for him, it's appreciated.
We had a great Christmas with both sides of the family, lots of laughs and memories made. Our new year celebration was especially meaningful, as we have been looking forward to 2014 since 2010. It's going to be a great year, I can feel it.