Hospital Life

We’re coming up on 10 months since Adeline’s diagnosis (on the 17th). If I’ve counted correctly, she’s spent 44 days in the hospital (and is currently on day 9 of a stay). We never like being in the hospital, but we know that sometimes it’s the best place for her to be. She’s had admits for diagnosis, fever/neutropenia, neuropathy, and now malnourishment and blood sugar issues.

Somehow the hospital feels isolating, yet comforting at the same time. There’s so much routine and schedule, but every day comes with its own unknowns. And it’s so loud, I have to cast a small net to catch only the sounds within our four walls. Otherwise, the beeps, babies crying, toddlers yelling, and chatter from the nurses station gets to be too much. A white noise machine, diffuser, and my yoga mat help us maintain zen in our room. 

Of course, the staff is amazing. They go out of their way to make sure we have everything we could need and are as comfortable as possible, despite being at the hospital. By now, we have a routine and rhythm that we have created to make our days easier. We keep a hospital “go bag” with two nights of necessities packed and ready to go. My hospital blanket, egg-crate mattress topper, and travel pillow are always in the back of the car. 

I have to leave our room several times a day, and I try to take the time in the elevator as a minute to breathe. When the elevator doors close, I let all the hospital sounds and worries leave me for just a minute. Drop my shoulders, unclench my teeth, close my eyes. And then I count the beeps to the fifth floor. Beep- breathe in. Beep- breathe out. Beep- breathe in. Beep- breathe out. Then the doors open and it’s back to reality of hospital life. One thing about hospital life that I love the most- she always wants to snuggle with me as she falls asleep 🧡

Update on decisions since my last post- we settled on option two and were preparing to start Interim Maintenance 2. Unfortunately, Adeline dealt with severe neutropenia and spent two weeks in the hospital before she could begin. During that time, three bone lesions were discovered after a CT scan. The biggest spot was biopsied and we spent a nerve wracking 5 days waiting on results. Thankfully, they came back showing no cancer cells present. After her counts finally recovered, she was discharged and scheduled to begin IM2. When she went into the clinic for day 1, she was severely malnourished and dehydrated- too much for chemo. So that’s how we ended up back here!