BLURRED REALITY + CYCLE 1

I feel like I am existing in two realities and maybe that's how people feel when they are going through something like this. On one hand there is the hospital, appointments, treatments - a life that is very real when you are walking the halls of the hospital. Half of my current identity is so tied into living in the hospital for a period of days, anticipating Eli's needs, assisting with simple tasks to get him up and to the bathroom connected to all of these tubes, reminding him to brush his teeth when he is up, monitoring how much he is eating and drinking, forcing him to drink Sunny D (the jury is out whether this helps clear methotrexate faster).

Then we go home and it's mostly back to our regularly scheduled life - where this last week Eli seemed like a normal teenager. I look at him and besides his new hair-do, he is my Eli, just as he's always been. Outwardly, he seems healthy, inwardly he has a tumor that has aggressively weakened his bone. It's a good reminder that we never know what is going on behind the scenes. We are mostly clueless to what someone is struggling with on the inside, beneath this sack of skin that holds everything together. This life looks like running errands, making breakfast, lunch & dinner, working at my desk in my office, listening to Eli sing in the shower, feeding the animals, doing laundry, sanitizing, endless household tasks. 

And then another reality shift on Friday back into treatment mode and adjusting to the next hospital stay. This is the truly exhausting part. The switch up. 

As a mom, I've worn lots of different hats throughout the years. I've been a caregiver, chauffeur, chef, cheerleader, teacher, nurse, counselor, maid, janitor, builder, butcher, baker, candlestick maker.

We went to clinic again on Friday to check counts, which had gone up quite a bit. Eli's neutrophils were at 2000, compared to 140 just two weeks before. His bone marrow decided to crank it up. His platelets had also rebounded from 55 to 179. So we got some food and headed to our deluxe apartment in the sky. As we were headed to the car, an older man asked Eli, "what happened to you?" People always think that he has had a sports injury because of the crutches. Eli explained that he had cancer and the man pointed at him and said "you're gonna win!"

Checking into clinic.

 Treatment started and I got Eli some dinner while Richard and I traded shifts for a few hours. 

Home away from home

Saturday was gloomy tunes and I kept myself busy with some knitting and cranking out some episodes of Only Murders in the Building. Eli slept most of the morning. Richard brought him some lunch while we traded places. Labs were drawn mid-day and his MTX level at hour 24 was 3.5, which was pretty good. Then we got started on the Leucovorin again for every 6 hours. Riley came to hangout and she and Eli watched the Mike Tyson / Jake Paul "fight", if that's what we are calling it. Eli had some nausea and a headache so he got another nausea med and I brought him some dinner on the way back to the hospital.

While I was home I assembled his new gaming desk. 

Sunday's weather was on gray repeat and Eli slept all morning and into the afternoon, finally waking at about 3pm. His head was hurting a little more so he got some meds for that. Dad brought him his requested Subway for a late lunch and they watched some football while I went home for a break. His 48 hour MTX level was .25 (last weekend this time it was .24).

He was encouraged to get out of the room and go for a walk so we wheeled his pole friend down the hallway and went for a late night stroll. He hasn't given his poll a name yet. We've been encouraged to decorate it, but I'm not sure what kind of drip that we can add to the drip. I don't think Eli really cares to make it his friend, but it is always by his side, like a soldier fighting this battle with him.

The hospital is a breathing, living organism in its own right and it is such a different atmosphere on the weekends compared to weekdays. Weekdays are business, people are coming and going, the gift shop is open and the pulse is quicker. The weekends are slow, the hallways less crowded, the elevators vacant, the floors emptier and post-9pm, there is hardly anyone here after visiting hours have ended, other than patients and parents of kids.

The gloom subsided Monday morning to reveal hidden blue skies with a side of powdered sugar on the mountains, but the gloom isn't ready to let go quite yet and the gray still has us in a chokehold. The construction outside my window has resumed, heavy machinery beeping outside in harmony with the machines beeping on the inside. 

Eli started having some chest tightness in addition to the headache Monday afternoon after lunch. I told the dayshift nurse and we went for another walk and he said that helped, but by late evening he was complaining that it felt harder to get a deep breath and he was feeling a sharp pain in the middle of his sternum. All of his vitals seemed good and his oxygen levels and lungs sounded fine. The nurse gave him some pain meds and we went on another walk, which improved his symptoms.

I taught Eli how to play the card game of "War" and it went on for a long time while he a) accused me of cheating because I had all of the aces and b) asked if this game ever ends. 

We redrew labs at 10:30pm and waited patiently for results to see if we needed to pack up and go. This time we were committed to leaving no matter how late it was, but his MTX level was exactly 1.0 so we stayed another night.

The night was uneventful. I really loved the night nurse that we had. We've had a ton of great nurses and we are now starting to see some of our caregivers for a second time. There is something different about night nurses though. They are there with you as you are switching from your daytime routine and settling in for the night. They see you when you take off your make up and get into your pajamas. They are there when you are at your most vulnerable and intimate and doing one of the most basic human functions, which is sleeping. They are there when you wake up and are fresh-faced first thing in the morning or groggily helping your kid. This experience has been made so much better by the people that we have been surrounded by and those that have lifted us up when we are at our weakest and most vulnerable. 

Cycle 1 is done!

We head to clinic again on Friday to start the second cycle. It's been a long 5 weeks, but we are 1/6 through treatment and we will just keep counting down.