Day 20

We tried to spend as little time at CHOP as we could. The doctors and nurses were amazing at helping us do this.
Shane was on your typical rhabdomyosarcoma maintenance protocol (yes, it’s only a “maintenance” one that exists for this type of cancer).
One week required a 5 day stay at the hospital because he would be receiving chemo for 5 consecutive days. Instead of staying, we would drive back and forth everyday. There was one chemo that we had to stay overnight for. He needed to receive a Neulasta shot 24 hrs after it. This chemo was also the harshest. Aren’t they all really??? I can’t believe I even wrote that.
Shane was so nosy. He wanted to see the nurses, the patients, check out the art room, get toys, play with toys, go to music class, go for a snack….and REPEAT.
He never napped. I guess he wanted to just live life.
I often think of this. Especially when I’m dog tired and wishing for Will to take a nap. I remember those moments I got to spend with Shane. I was so tired then, but I never FELT it. I just embraced it. No regrets. Ever.
These were Shane’s favorite monkeys. We visited them on our laps on the good floor….”south.”
Yes, he dressed himself too.

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