We are incredibly thankful that Steve was released from the hospital in time for Christmas Eve and Christmas Day at home with family.
We were dangerously close to spending another five days at St. Paul.
Apparently there was no way that he would be allowed to be released without the supervision of a home health agency, despite the solution the case manager and I settled on (me administering drugs on my own). We would have been there until Monday.
The case manager finally found an agency that was able to offer a nurse. My little impassioned speech apparently had moved the case manager, who in turn softened the heart of an agency's director, who in turn convinced one of her registered nurses to add an extra stop to her already-busy Christmas Eve schedule. (Either that or Dr. M raised her voice loud enough to move the case manager.)
About an hour after we arrived home Wednesday, a courier company dropped of a big bag of drugs and supplies.
A couple of hours later, our home health RN appeared. We reviewed policies, signed paperwork and then received infusion instructions.
The at-home process is much simpler than the hospital process. The antibiotic is premixed and in a fancy little bag that pushes out the drug without the use of an infusion pump. It doesn't even rely on gravity; Steve can just carry the plastic ball of Vancomycin in his pocket while it's connected to his PICC line.
My biggest challenge right now is releasing bubbles from the syringes of saline and Heparin. I hold the syringe up and push the plunger to push out the bubbles. So far, I push a little too far every time, and shoot clear liquid straight up to the ceiling. If I don't move out of the way, the liquid drips back down on my head a few minutes later.
Our friend and neighbor Tisa, who is a home health nurse manager for another company (that doesn't contract with our insurance), is my backup. She was here for the first training session, for the first time I removed the tubing, and again at 6:30 a.m. today to supervise Steve's morning infusion. We are comforted knowing we can call at any time for help if necessary.
Steve continues to express how blessed he is to be home. He's tired and running a slight fever (not high enough to report yet), but he's still happier this Christmas than any other.
Some of you may have already read a column I wrote for Briefing last week. I want to include it here today, as a reminder of everyday miracles on this very special day.
Miracle's size has little to do with its impact
How do you define a miracle?
Do you need a big production – oil that lasts longer than logically possible, burning bush not consumed, thousands fed with just a handful of fish and two loaves of bread?
Or do you see little signs of a higher power and count them as miracles?
For a year, I have been praying for a big miracle: that my husband Steve be cured of brain cancer, that every last one of the tumor cells die and that there be no recurrence.
It's a bold request.
I have also been collecting miracle stories: the aunt who should have died of a brain aneurysm but still hasn't; the child whose cancer is inexplicably in remission; the mom who was given six months to live but is active a decade later.
As we wait for Steve's big miracle, I am working on being mindful of the less flashy miracles.
Our minister spoke of them this week, quoting the United Methodist belief: "The gift of miracles does not focus on the extraordinary, but sees the miraculous in the mundane and normal. Living in the spirit of the miraculous, people see God in nature, in relationships, in kind acts, and in the power of love."
Just after Thanksgiving, we learned that Steve's tumor, which had been dormant for a few months, had started growing again. That diagnosis required a quick response; within 48 hours he started a new chemotherapy regimen.
As we sat together in the infusion room and I watched clear liquids drip into a port in Steve's chest, I marveled that such a small quantity of fluid contained the power to extend his life. And as days passed and we watched for adverse reactions that never came and instead saw rapid improvement of his motor skills, I was incredibly thankful.
Surely there were miracles involved in that process – in the research that allowed the drugs to be developed, in his weak body's ability to not only endure the toxins but also triumph with increased strength and mobility.
The improvements came just in time.
We were able to attend the Neiman Marcus Adolphus Children's parade as a family, cementing a tradition started last year.
And on Sunday, Steve was able to watch friends, family members and even some strangers cross the Dallas White Rock Marathon finish line in his honor.
It was a beautiful day. He was surrounded by overlapping circles of loved ones, all wearing identical bright yellow shirts. He watched with pride as people performed athletic tasks that were once easy for him but are now impossible.
He smiled so big and so often that his face hurt.
Surely there were miracles involved in that day – in gathering that many people from across the state safely, in the training that each runner endured, in the ideal conditions and logistics that allowed Steve to navigate Victory Park and comfortably sit outside in mid-December.
Early that evening, we walked outside our front door to a crowd of about 50 friends singing Christmas carols for our family. It was the perfect end to a perfect weekend.
Later that night, Steve, who has an inoperable brain tumor and has battled courageously for 12 grueling months, declared the day "miraculous" and himself "the luckiest man on Earth."
It's not the big, bold miracle I pray for all day, every day.
It is the best miracle I've never asked for.
Tyra Damm is a Briefing columnist. E-mail her at firstname.lastname@example.org.
Merry Christmas, dear friends!