Cycle 2, Day 5 - Cancer Is the New Black
A bit of a surreal experience: Evie is having so much fun, she doesn't want to go home.
She's played at the playroom everyday, even with her line hooked up. Previously she didn't want to even see the tubes, let alone walk down to the playroom with an IV going.
On Thursday night, we went to a pizza party on the 12 floor, with live music. Later, U of M athletes stopped by and she just was as cute and perky as ever, laughing and chatting, and charming them all! Saturday, she got to go to a puzzle party with Daddy. And, on Sunday, a giant panda stopped by her room and they danced together. Not to mention there were visits from Aunt Neddy and Nana and Grumps.
She's going home with a bunch of new stuff: an activity book, an autographed baseball cap, a 3D Hello Kitty puzzle, a brand new American Girl doll (complete with feeding bottles and a pack of preemie diapers that the nurse grabbed from the supply room), a huge bunch of helium balloons, and, of course, several new stickers.
She's been so energetic, chatty, and charming, doctors and nurses have stopped by just to play with her. She even wanted to help push her own chemo on Saturday, which of course, required a small audience of laughing nurses. On rounds one day, I think we had a record-breaking seven doctors crammed in here, and Evie had them all laughing. "Is she always like this?"--something we've heard a lot. And the truth is, she really is.
Friday was her only off day and she was very moody and upset in the afternoon. Though we're figuring out that a particular chemo that she gets the day before, probably in combination with the steroids, makes her quite unhappy and uncomfortable. Fortunately there's Ativan for that.
And, while we can't be more thankful that, so far, this hasn't been the traumatic experience we all feared, we are still surrounded by reality. On Saturday afternoon, just two rooms down from us, there was a code: a young child went in to some sort of critical failure. There was yelling and commotion, and literally dozens of medical staff came rushing from every direction. The hall was blocked with rescue teams and equipment for over an hour. The parents and sibling sat together on a bench down the hall, staring blankly. We believe the situation stabilized, as we watched medical teams and equipment slowly file away and the patient was never rushed out. Later that evening, it was the child's extended family that filled one of the sitting rooms, obviously waiting and hoping for some sort of news.
It feels like a cruel numbers game. Statistically, not every child here will live. It's not possible. I'm hoping like crazy for the best for Evie--does that mean that I'm somehow wishing the worst on someone else? It feels almost selfish to hope.
We've met a few other parents since starting treatments. A father of a adolescent boy receiving bone marrow transplants after poor results from over a year of chemo received elsewhere. They were from Ohio. A mother of a young girl from the Detroit area. Her daughter was treated for months for migraines, even though the mother had begged for an MRI. It was until her daughter fell that they finally found the tumor in her brain that took 15 hours to remove. She was just starting six months of chemo. A mother of a boy, also from the Detroit area. They'd already been here for 17 days straight for chemo and still had another month of inpatient to go for this cycle. He is literally facing years of treatment for his type of cancer.
Every time Steve and I share one of these stories, we can barely look at each other. How can you even begin to utter the words, "I'm glad that's not us?" There is no emotion that our bodies can conjure up for this situation. We are just numb.
So we turn to Evie, who is always ready to smile. And we hold her like hell. And we laugh and we play. Because we can right now.
She's played at the playroom everyday, even with her line hooked up. Previously she didn't want to even see the tubes, let alone walk down to the playroom with an IV going.
On Thursday night, we went to a pizza party on the 12 floor, with live music. Later, U of M athletes stopped by and she just was as cute and perky as ever, laughing and chatting, and charming them all! Saturday, she got to go to a puzzle party with Daddy. And, on Sunday, a giant panda stopped by her room and they danced together. Not to mention there were visits from Aunt Neddy and Nana and Grumps.
She's going home with a bunch of new stuff: an activity book, an autographed baseball cap, a 3D Hello Kitty puzzle, a brand new American Girl doll (complete with feeding bottles and a pack of preemie diapers that the nurse grabbed from the supply room), a huge bunch of helium balloons, and, of course, several new stickers.
She's been so energetic, chatty, and charming, doctors and nurses have stopped by just to play with her. She even wanted to help push her own chemo on Saturday, which of course, required a small audience of laughing nurses. On rounds one day, I think we had a record-breaking seven doctors crammed in here, and Evie had them all laughing. "Is she always like this?"--something we've heard a lot. And the truth is, she really is.
Friday was her only off day and she was very moody and upset in the afternoon. Though we're figuring out that a particular chemo that she gets the day before, probably in combination with the steroids, makes her quite unhappy and uncomfortable. Fortunately there's Ativan for that.
And, while we can't be more thankful that, so far, this hasn't been the traumatic experience we all feared, we are still surrounded by reality. On Saturday afternoon, just two rooms down from us, there was a code: a young child went in to some sort of critical failure. There was yelling and commotion, and literally dozens of medical staff came rushing from every direction. The hall was blocked with rescue teams and equipment for over an hour. The parents and sibling sat together on a bench down the hall, staring blankly. We believe the situation stabilized, as we watched medical teams and equipment slowly file away and the patient was never rushed out. Later that evening, it was the child's extended family that filled one of the sitting rooms, obviously waiting and hoping for some sort of news.
It feels like a cruel numbers game. Statistically, not every child here will live. It's not possible. I'm hoping like crazy for the best for Evie--does that mean that I'm somehow wishing the worst on someone else? It feels almost selfish to hope.
We've met a few other parents since starting treatments. A father of a adolescent boy receiving bone marrow transplants after poor results from over a year of chemo received elsewhere. They were from Ohio. A mother of a young girl from the Detroit area. Her daughter was treated for months for migraines, even though the mother had begged for an MRI. It was until her daughter fell that they finally found the tumor in her brain that took 15 hours to remove. She was just starting six months of chemo. A mother of a boy, also from the Detroit area. They'd already been here for 17 days straight for chemo and still had another month of inpatient to go for this cycle. He is literally facing years of treatment for his type of cancer.
Every time Steve and I share one of these stories, we can barely look at each other. How can you even begin to utter the words, "I'm glad that's not us?" There is no emotion that our bodies can conjure up for this situation. We are just numb.
So we turn to Evie, who is always ready to smile. And we hold her like hell. And we laugh and we play. Because we can right now.