Day 29 of Cycle 3 of long-term maintenance… but who’s counting?? Cheeky started up chemo today which includes IV meds at clinic, intrathecal (spinal) meds during his LP, and a bunch of oral meds at home. This LP is actually a “make-up” LP that should have taken place on Day 1, but someone was still hanging out in the hospital on Day 1 getting oxygen. And then, you know, pneumonia. He did a great job, with a few bumps coughing and extra oxygen during sedation.
Preparation is the key to success on LP days. It occurred to us that we’ve never shared what that preparation is like, so rev up your visualization skills and take a walk with us:
Part One: The Home Part
Three Days Before the LP:
Wonder if he is even going to make counts and if all of this preparation is futile. (Wondering is also futile.) Check through the med basket to be sure there are enough meds to get started with chemo. This usually involves refilling at least one med and feeling super organized and pompous, only to realize on the day of the LP you forgot one.
The Day Before LP:
Pack Ye Olde Clinic Bag. Toys, blankies, diapers, drinks, lunches, clinic notebook, changes of clothes, etc. The clinic bag is a BREEZE compared to when he was first diagnosed and much more a “baby.” He needed bedding for the clinic pack n play, a noise machine, milk… Most things the clinic staff can help you locate if you have forgotten (i.e. diapers) but the lunch of highly-specific, ever-evolving food preferences is a must. The med bag is a tricky one.
Pack the meds. Since he will be fasting 12 hours prior to the LP, he can’t take his morning meds. We pack them to take as soon as he can eat and drink again, as most meds are twice per day. For example, if he doesn’t take his Ursodiol (liver med) until 1:00 pm, then second dose must be at 9:00 pm, at least eight hours apart. See why he needs the meds in ASAP? He usually goes to bed around 7:30 or 8:00 and it is no picnic waking him later for meds. We pack liquid meds, some which require a cooler bag, and also pills and the pill crusher. We also pack syringes and a “mixer” juice for the pill meds that are crushed up.
Before bedtime, we desperately try to get Naaman to eat. This means Nadine also gets to gorge on snacks by association. Naaman won’t be able to eat 12 hours before the procedure, and can do clear liquids until 2 hours prior. Waking in the middle of the night? Yup, we offer him a snack or drink! (Note: in case you hadn’t heard, the dude doesn’t sleep more than an hour or two at a time, and this has been his pattern for months. We are working on it!)
The Morning of the LP:
It can go one of two ways, and you never know which it will be. Either Naaman wakes early and is a raging beast that you just have to let scream while you get ready. Or you get the calm but persistently, sadly requesting food Naaman that breaks your heart. It’s almost always the former and not the latter. Whatever the case, sorry, doctors, we blame it on you: “You can eat when the doctor says so.”
If he is fasting, you can imagine that means food has to be out of sight. Lunch has to be packed the night before and smuggled into the car without him seeing. Neil and Nadine can’t eat breakfast until Naaman and I leave, and I usually eat the quietest Belvita breakfast bar ever while driving there. Cheeky even flips out if I make coffee, so I typically load him in the car first and run back inside to make a cup. When he is particularly in beast mode, I just leave really early, There’s no point in keeping him in the house where he just continuously wanders into the kitchen demanding food. We go to Smilow early and walk around the healing garden to kill time.
GAH! Just like I forgot to write it here, I usually forget his lidocaine cream on his port! He needs a numbing cream to help ease the pain of the needle when they access his port. So I squirt some lidocaine cream on a Tegaderm patch and attack. Basically that means take his shirt off, sit on him to pin his arms down, and aim well for the port site. If Neil’s home, I have a wingman.
Sometimes I have to leave before Nadine’s bus, but after Neil has to take off for work. We have a solution! Deanie gets to go have breakfast and hang with her BFF down the street, Adri. (Thanks, Tammy.)
Now for the drive. New Haven is maybe 25 minutes from Meriden; however I have to leave about an hour ahead for appointments. Traffic, navigating the parking garage, and the schlep from car to clinic on the seventh floor. It’s an hour. Cheeky is pretty good in the car, but on his terms. Some days that means I have listened to “Lost in the Woods” from Frozen II on repeat seven or eight times on the way to clinic.
To Be Continued...
If you have managed to read this far, congratulations! You deserve a reward. Go have that third second cup of coffee. Or a cupcake. I’m exhausted writing this, so you must be exhausted reading this. We hope it gives a little glimpse in to the preparation for clinic days, and sheds some humor. Stay tuned for Part Two: The Clinic Part.
2 thoughts on “Breakdown of an LP Day”
Wow!! That’s incredible!! You guys are awesome parents!!
Thank you for letting us into your life and getting a better understanding of what occurs. The only thing I can think and say is you are REMARKABLE and we all are cheering on Naaman and his terrific family! ❤️