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What have I told the kids?
July 29th, 2015
I leave for Chicago on Sunday
I’ll continue my story about how I got here a little later. For now, here are some details. This Saturday, August 1, Chris is going to drive halfway to Pennsylvania to deliver my kids to their Pop-pop and aunts. Chris’ll drive back that night, and the kids will go to State College for two weeks of soccer camp, ice cream, and family. Chris and I will leave for Chicago Sunday, August 2.
On August 3, I will be admitted to Northwestern Hospital overnight for one round of chemo. I will be discharged the next day, and Chris and I will stay at the Residence Inn on the Magnificent Mile. According to my sources, I will feel like shit. But then I will feel better, maybe even good enough to go to a ball game (at least, this is what Chris thinks, apropos of nothing besides a desire to see the Cubs.)
On August 8, I will start Neuprogen, which will mobilize my stem cells from my bones and make them ache. On August 13, they will harvest the stem cells. They may need to do it again on August 14, and we fly home that day.
I’ll be home, working and playing for 3 weeks. (I hope I feel good enough to work. I know I’ll feel good enough to play.) The kids will start school. I will go to PTA meetings and go climbing at the gym. Chris and I will lift weights and look sexy.
On September 7, I will return to Chicago for 3 weeks. My parents will come and watch the kids. I’ll be in a bubble in the hospital the whole time, and Chris will have a hotel room to himself (lucky). Five days of chemo, rest until levels equilibrate, then stem-cell infusion. These cells will form my new immune system, which will be like a baby’s. In a year, I’ll have to go get my immunizations. They say no flowers, no fresh fruit and vegetables, no touching soil, no cleaning up poop, etc, for six months. In other words, please don’t lick the walls or your friends.
People keep asking me what I’ve told my kids. I’ve said this: “You know how I have a MS and I can’t run or wear high heels?”
They nod. They want me to run so I can chase them. I know it. They are 9 and 11.
“Well, there’s a new treatment, and it might fix all that so I’m going to give it a try. One of the medicines is chemo, so I’ll go bald. It’s the same treatment as what they give to cancer patients, but I don’t have cancer.”
Zach says: “I don’t want you to come near me if you’re bald.”
I say: “I’m going to rub my head all over your arm, and you’re going to like it.” He laughs.
To Maddy, I say, “You know, I might wear high heels to your prom, and I will chase you, and catch you, just because I can.”
“They won’t let you in,” Maddy says.
“Yes they will. They let parents chaperone.”
She looks frightened. “Even the crazy ones?”
“Especially the crazy ones.”
“I’m going to hide under a desk.”
“You won’t be able to catch me,” Zach says.
“I will. I’ll be really fast,” I say.
“Yeah, but you’ll be wearing high heels. That’ll slow you down.”
So my kids are good. They know what’s up.
test Filed under Stem cell transplant for MS | Tags: Chicago, Dr. Burt, HSCT, MS | Comments (12)12 Responses to “What have I told the kids?”
Running = a big yes if you are being chased by purple polka-dotted monkeys, or robbers, or monsters. High heels? Well, that’s a personal choice but I support you! XOXO
ANd when I get to take care of your kids, I am going to tell them that they can help their mom the most by being happy and having a good time while she is gone. Then she won’t have to worry as much about you. I hope you give me lists of what they like to eat. And I am pretty good at doting.
Love, Mom
Your kids sound awesome. Hope to meet them someday soon when I bring your first book to your autograph signing.
May I come from Ann Arbor to visit you in your bubble? We can play Mad Libs! 😉
I’ll ask about visitors again when I go up up in August. I’d love to see you! And Melanie said she might want to visit too. But the nurse told me that that isn’t the time for visitors because I will feel like crap be be very vulnerable to infections. I’ll check with her, again. Ann Arbor is so much close to Chicago than it is to Raleigh. (Also, put this in your hat, I’ve been lightly scheming with Michael about a possible visit to Mexico next summer. We could coordinate.)
YES! They said yes to visitors. You can come this time or when I am in the bubble. I’d love to see you, cowgirl.
Smart kiddos, silly mama. Lovely.
Timeline and plan: Wow
Conversation with your kids: Priceless
I too was surprised that you play bridge. It’s so different from rock climbing.
And I can totally see Maddy and Zach saying that. They will receive many glorious head rubs.
You are bad-ass and will totally rock the bald look!
I wish I were a good enough knitter to make you a cap with tentacle hair. But hell, you’re a writer. IMAGINE that I made you a crazy hat with tentacles for hair.
I would really love that hat.