First 10 days
Lucas just finished the first 10 days of treatment here at Dell Childrens. Erin and I are going 24 on and 24 off, really holding this whole thing together with prayer. The handoff meeting is crucial when you are going through AML treatment, because its a marathon, and you can’t leave. You feel guilty for going to the bathroom when you are the parent of a child undergoing chemotherapy. When your shift is over and you do the switch off , your adrenaline is going so much, you have to breathe, pray just to feel like its ok for you to leave, and that Lucas is safe. You still text the spouse, checking in, monitoring the phone like its a 911 emergency. Every call I am always immediately in deal mode, so is Erin. We try not to bug each other too much, but when you are in a war that doesn’t really come into play.
Lucas is amazing. He has lost 7% of his body weight, and I watch him play Legos and watch hoops, knowing in the back of his head that hes got this. Hes a bad ass. Someone asked me what Lucas is like during this, I said he was like a 12th Century Mongolian warrior. Quiet mouth, blinking eyes, results oriented. Doesn’t complain a lot about how he feels. Pensive. Pointed. Deliberate. Funny. Dry. But deep down he needs his mommy. I wish that I could provide the healing warm support and loving hands that Erin has, but not sure that’s my core skill set.
So…I have become fully invested in tracking the data. Building systems to monitor his labs, his numbers, his symptoms, his moods, his weight. All of the things we call in the tech world KPIs. Dell uses a system internally at the provider level called Compass, and if you want your labs they have to print them out. There are other systems out there, it would really be amazing if I could get daily CSVs or data dumps of my kids labs. Who knows, there are probably days that I know his mood is say a 5, or his fatigue level is an 8, maybe the labs are an indicator of that. Maybe there are some trends. I have worked w data a lot and you never know what can come of independent analysis of numbers.
The website has been useful, we have received 70 Google Forms with all kinds of ways people can help. We did add a new “way to help” called the HandyMan. Since we are going to be gone basically the next 3-4 months or quarantined when Lucas’ immunity is low, we wont be able to fix stuff around the house.
Prayers:
low complications
reduced pain in his bowels, he has had Typhlitis the past few days
reduction of fever that is popping up the past 12 hours, probably due to chemo
Gratefulness:
Caregiver Missy watching Jack and Dylan this week
All of the gifts and resources people are sharing and continue to share
Whomever made the brisket a couple of nights ago
Sending out our love. Believing in the power of prayer and positive intention.
Love,
Team Lucas #lucasstrong
The Window at Sunset, Big Bend National Park
