A Case of the Mondays

Just let me look that up for you, mommy.

This was how I spent the monday after Halloween weekend last year.  We had just been released from the hospital, on sunday afternoon, as in the day before.  Josh had decided to cook up a cocktail of H1N1, along with a relapse flare-up of C. diff, and gotten diagnosed with VRE in his intestines.  When we party, we par-tay.  Honestly it was one of the most miserably sick times I have ever seen him go through.  It also began our 8.5 months of contact isolation, to keep his VRE contaminated poo away from all the other immuo-compromised kids.  Which makes this picture above the first of Josh in what he came to refer to as "Josh's room," or the isolation room to the left back in our clinic infusion room.

It had been a fun weekend.  The nurses and staff had worn costumes to work so it had been an amusing admission to say the least.  I had made several "illegal" adventures up to the oncology unit from our overflow room on the neurology ward, those neuro people just don't have the red popsicle stash they have up on J5.

But Monday was still Monday, and very little to nothing stops the oncology train.  Mondays were hospital days.  Either admissions or clinic visits or scans.  Mondays were a certainty, Josh and I started our week at Nationwide Children's Hospital, 8am sharp, every Monday.  It was our routine.  My last normal Monday was in June.  It's now November.  I still wake up every Monday and think I need to be somewhere, like there is something I have forgotten to do. 

For weeks Josh would wake up to me kissing him awake and ask if we were going to the clinic or day hospital that Monday.  It's what we did.  Now we just don't anymore, and it feels so very strange. It feels a bit listless.  It's amazing how that metronome that you dreaded, that resonating toll that so often felt like a never ending dirge, can turn into a comforting routine, a consistency of annoyance.   Cancer treatment is chaotic, routine is your friend.

My friend ran away.  She was an annoying needy friend, so I am learning to be ok with her decision.

We majored in routine.  I got Josh ready to leave in the exact same process, we took our hospital bag of toys that went with the intended destination, clinic toys for the clinic, day hospital toys for the dayho.  We parked on the top floor of the parking garage, because it is number 5, Josh's favorite number, and the sign is red, Josh's favorite color.  No one parks on the roof at 7:40 am, in snow, but we did.  Because it's what we did.  It was our routine, it gave him control when he really had none.  I always asked where to park, and we always parked in the exact same spot on the 5th floor.  The path to each destination had it's routines, the same signs we would read, buttons we would push, volunteers to get stickers from.  He went to his same little isolation room in clinic after a stop at the vending machine for the candy in slot #54, yes it's been several months and I still remember the position number.  After months he stopped eating the chewy sweetarts, but we still bought them, every clinic Monday, and most Thursdays.

We'd say hello to the crayon signs, and ultrasound, and the ER, and radiology, and fluoroscopy, to the volunteer, and to the security guards, and then to our elevator.  We'd roll up on the floor, the fifth floor, for chemo and we would say good morning to the nurses' station and then head straight to the kitchenette to obtain frozen confectioneries.  Reading the signs loudly, we'd turn into the Day Hospital, where the nurses always assigned him Room #55, the dayho rooms just happened to run through the 50's, and the oncology unit was also on the fifth floor.  We were awash in Josh's favorite number.  The nurses even once made a fake #55 sign to hang over room #51 when we made an unexpected visit.  But it was his home away from home, he liked it in his little hole.  I knew just how to angle the tv, and the chair, and we had stocked the room cupboard with VHS all to his liking.  I was the only one who could see or reach the top shelf in the cabinet, so I kept extra diapers and wipes and supplies up there so I wouldn't have to tote them back and forth.  He never once complained about going there, it was what we did, it was where we went, it was the routine.  You can't fight the routine, it is going to happen with or without your happiness.

Josh could learn to tolerate any procedure as long as there was a routine that could be repeated in meticulous detail.  Don't you ever forget to put the "seatbelt" on his port needle, or there will be wailing till you take off the dressing and fix your egregious error, because, no, you can't just put the "seatbelt" on top of the dressing, it goes on first, then the dressing.  For every procedure we had our routine, and the nurses knew them all.  He even memorized the flow rates and run times for his chemotherapy treatments and would tell the nurses what values to enter, and what button to push to reach the correct sub-menu on the IV pump.  He was even allowed to push "OK" and "Enter" here and there.  He knew exactly where to stand for each scale to get the fastest weight reading, the spot on the floor for each measuring stick.  Routine.

If possible at your local health care facility, enact as many routines as possible.  Pick a day of the week and stick to it.  Always.  Even if it makes you hate that day of the week.  Always buy your parking token first, or on the way to the car, but make it the same, every time.  Even if your child is screeching through a procedure and there is biting and wailing, do it exactly the same way.  Restrain the same way, do things in the exact same order, announce them as they are happening.  "Ok Josh, the tubey is in, we are just checking for the red worm, then the seatbelt, your big sticker, and then you can put your train stickers on top."  Little ones need that routine, to assure themselves how much more is to come, that the unpleasantness will stop.  After about 5 months of port access hell, and developing and trademarking the "Josh Position" for port accessing restraint, he just decided to stop fighting and sit there quietly, all by himself in the infusion room chair, only 2 years old, and hold the vials for them while they got him accessed.  While he announced each step in the routine.

Our local Costco employees had to get the domain to our family blog.  They are in withdrawal.   Mondays always meant Josh would be in for his post-hospital smoothie.  Without fail.  Every Monday.  They miss the metronome too, but they like the hair, and lack of mask a touch more.

Find your routines.  Be it a special band-aid to herald de-accessing, or that you break into Hammer-time every time you pass the door for ultrasound, make them together and settle into their comforting powers.  Knowing the purple Blues Clues tape is the one we put in when they hang your last chemo of the day can have amazing power, especially when the next stop is smoothies.  Have your steps in each process, your landmarks, your celebrations.  Oh and the roof of the parking lot at 7:40 am is a great vacant place to run around and play follow the leader, and jump, and shout before a week of sitting in a little room and getting poisoned and carrying your IV pump home every night.  All the cool kids park on the roof.

Mondays aren't "big heart hospital" (their logo is the nationwide insurance logo with a heart in it) days anymore, but ask Josh about the weekend and he will tell anyone "On Saturdays and Sundays I take my Bactrim, one times in the morning and one times before I got to bed."  Dare I say it, a day will come, when we will miss the Bactrim metronome too.