Sunday, December 28, 2008

Don't sweat the small stuff

Emma has had three Christmases so far. The first one she spent in the hospital, newly released from the Pediatric Intensive Care Unit, wearing a Santa hat while getting chemo in her hospital baby bed. Her second Christmas she got to be home, with her leukemia in remission (we thought), and she had a great time. Now, a year later, she spent her third Christmas in a hospital room. It wasn't the Christmas we had planned, but nobody's complaining. She is more than 100 days post-transplant, and her new bone marrow is chugging right along, with all her test results showing only the donor cells and no leukemia lurking in her spinal fluid. She can go out in public as long as she wears a surgical mask, which she doesn't mind doing. The only problem she's been having are intermittent mysterious fevers, which require intravenous antibiotics through her chest port.

Her oncologist suspected the culprit might be bacteria hiding in her chest port, which was implanted more than a year ago, but removing it would mean every time she needed an IV they'd have to stick her, and nobody wants to stick a 2-1/2-year-old if they don't have to. However, a sudden fever spike (and pneumonia) just before Christmas settled the question, and on Christmas Eve the port was removed. Sure enough, the surgeon told Emma's mom that they found "a lump of gunk" growing on the end of the port (she made them bring it out so she could see for herself). Emma bounced right back and came home the day after Christmas with a PICC line in her arm, so she can still get IV meds without having to be stuck. She is still surprised when she pulls up her shirt, saying "My lines are gone!" because she had those IV lines coming out of her chest for as long as she could remember. Now she just has one line in her arm, and she helps her mom and dad put her medicine in three times a day for 30 minutes, carrying the pump around by herself when she wants to go somewhere while she's getting her medicine.

Christmas Day might have been spent in the hospital, but it wasn't a bad day. The nurses spoil her rotten, and she's known some of them her whole life. She spent the morning opening presents with Mom & Dad like any other kid, and she got to show everything to her new baby brother. She didn't care that the nurses were there too. The next day she came home and opened more presents, and the only thing she was unhappy about was the fact that she wasn't allowed to turn somersaults while her medicine pump was hooked up. She's eating well and filling out, and while her hair is still pretty short, there's plenty of it now!

Nope, no complaints.


Sunday, December 07, 2008

Emma & Cameron meet Santa

Emma's met Santa before, and in her head she knows that underneath that beard is PawPaw Tim, but it's still just weird when you're 2! She was happy to talk to Santa and tell him she would like to have a new baby doll, but she absolutely refused to sit on his lap. When Grandma Chris asked her where Pawpaw Tim was, Emma pointed to Santa and whispered, "He's right there." She knew that was her grandpa...but at the same time it wasn't.

Emma's newbabybrotherorsister has arrived!

Cameron Lukas Hill arrived safe and sound on November 11th. Emma was thrilled, as you can see. She still thinks he's pretty cool, now a month later. She has figured out that his name is Cameron, not newbabybrotherorsister, as she kept calling him at first. After all, that's what everyone had been calling him for weeks! She also calls him "my nay-nay," which is what she calls her baby dolls.

Emma is now more than 100 days post-transplant, so she can go anywhere she wants, as long as she wears her surgical mask, which she is pretty cooperative about.

Here's the video of Emma meeting Cameron at the hospital: