Nurse Karli to the rescue!
Nurse Karli came into Emily’s room with a pad of paper and some markers and pulled a chair up next to Emily’s bed. She handed some of the markers to Emily and asked her to help her draw a colorful garden. When they’d filled the page with bright flowers, Nurse Karli began the story.
“In a healthy garden there were lots of flowers and not very many weeds. In the bone marrow garden, the good cells that make the blood are the flowers and the bad cells are the weeds.”
Nurse Karli drew some frowning plants and some angry ones, the evil weeds.
“Sometimes when there are too many weeds in the garden, we have to spray it with chemo to kill off the weeds that are trying to take over the garden,” she said. Nurse Karli drew a spray bottle blasting out a cone of lines over the weedy garden.
“When the weed spray is not enough, when there are still too many weeds, we have to pull up the whole garden and get new soil and replant it with new seeds. That’s what the bone marrow transplant is. The doctors are replanting the garden with new soil to grow big, bright flowers again.”
“Will it make me as sick as before?” Emily asked.
“When the garden is starting to grow again, germs can make you sick,” Nurse Karli said. “The good news is that while the garden is starting to grow again, Mom and Dad will stay with you and play games and watch television to keep you safe and happy. You get anything you need while the garden gets thick with flowers. I will be there, too, if you have any questions, or if your tummy starts to hurt. I’ve got something to help with that.”
This was such a hard time for us, and it really helped to feel the support of so many competent and compassionate people like Nurse Karli, who described the care and support Emily would receive so that the whole thing wouldn’t seem so scary. We were feeling that support, too—in the hospital, and coming from the thousands of people reading Kari’s blog.
What was different during this hospital stay was that our community from the blog had grown so much larger. We had thousands of people following Kari’s writing every day, and, when Emily relapsed, there were many more. Kari posted our room number on the blog and we started receiving dozens of cards daily from her followers, mostly for Halloween, and they sent candy and decorations, too. One of the nurses paused for a few minutes to take a look at the dozens of cards and letters we had pinned to the walls, over the bed, all around, a riot of autumn colors. Intermixed with all those good wishes for Emily’s recovery were pictures of Lucy scampering around at home. The people who followed Emily’s story were in love with the photos of Lucy, too. One of them paid for an artist in California to make an exact stuffed-animal replica of Lucy so Emily could snuggle with her dog even though they were separated. Emily loved the way Kari had decorated the walls, but we couldn’t help comparing this Halloween to the last one.
Instead of being able to style her hair with those butterfly clips, we shaved Emily’s head again because the nurses said she would lose her hair quickly this time. Kari had to take the elastic out of Emily’s butterfly costume because it was too tight on her chest port, so it sagged. Kari hadn’t brought the fancy makeup. Emily had to wear a green mask to protect her from germs in the hospital air, so no one could really see her face anyway. Nurse Karli tried to boost Emily’s spirits by giving her a bottle of glitter to sprinkle on her forehead and her hands. Emily thanked her but she didn’t smile or laugh as she handed it back to Kari.
We pushed Emily in a wagon down the hall, her IV pole trailing behind her, extending a candy bag to everyone who walked by and going in and out of the department offices where the staff had bags of miniature candy bars for the kids. She was getting a lot of candy, but it felt like a chore. Kari’s mood matched Emily’s. Last year Kari wrote on the blog about how great the staff was to make such an effort for these kids. This year, because Emily’s odds had changed so dramatically, Kari felt as though people in the hallway were staring at us. Many passersby had kindly eyes, but others stared with pity. Emily’s mood improved when we got back to the room and she poured her mountain of candy on the bed to sort through all she’d acquired. Also, when we got back, she received a dose of steroids. That plus the candy had her talking a mile a minute.
While I’ve been writing this Emily has been talking to me nonstop and asking all kinds of random questions, such as “How old is SpongeBob?” and “How exactly does my letter to Santa get to his house? Is there really a post office at the North Pole?” We never know what her mood will be like when she is on steroids. Earlier she would not say a word to anyone and now she’s chatting away with everyone who walks into the room. Except for the doctors—she completely ignores them. She won’t even look at them when they come in the room. They ask her a question and she just pretends they aren’t there. Occasionally she will say “Meep!” which is her code word for “Leave me alone. It doesn’t matter how long you stand here and try talking to me. I will just totally pretend you are not there.”
—Kari’s journal
October 31, 2011
Kari was determined that we needed to
