Update

After her transplant we were told the five-year mark would be a crucial milestone for Annaka, and this spring she reached it. A biopsy of Nancy’s gift was taken in February and studied by both teams – St. Louis and Pittsburgh. While most of her recent lab draws have indicated a well-functioning liver, the biopsy was still a major benchmark in the post-transplant protocol and we couldn’t help but feel a little anxious as we waited for the results. Fortunately, everything looked healthy. While she does have some scarring on her liver, it’s considered in the normal range for someone who has undergone a transplant. 

A few weeks ago we sat down for a teleconference with members of her Pittsburgh team who told us news we were hoping to hear - she may be able to decrease the amount of antirejection medicine she ingests each day, or, if that’s not possible, at least decrease the amount of lab draws from once a month to four times a year. Her next biopsy won’t be for another five years, but even this is tentative, (as all things are, I suppose.) As the Pittsburgh doctors continue to stay up to date on research, there is a growing consensus that biopsies themselves might not be necessary if lab numbers stay where they need to be. 

This is all good news.

The bad news is, her life continues to be more dangerous than we’d like.

Just a few days after the meeting Annaka had a very serious allergic reaction while playing at the park. Her nose started running and she complained that her throat felt “scratchy and tight.” JaLana quickly gave her one Epipen injection and headed to the hospital. Because she was still struggling to breathe while waiting to get admitted into the E.R., JaLana injected her again. A third injection administered by hospital staff, along with an hour-long breathing treatment, finally got her back to where she needed to be. She recovered fast, and a couple hours later she was home playing, albeit with a five-day prescription for oral steroids to help flush out whatever caused the problem in the first place. Regardless, the experience itself was very concerning because we don’t actually know what she reacted to.

This isn’t the first time she’s had to get the injection, but this is the first time it took three entire doses to get her back where she needed to be, and it’s also the first time she’s reacted to a “mystery allergen.” Prior to this, we’ve always known what caused the response, whether she accidently ingested a cookie made out of real butter or been stung by a jellyfish.

 It’s possible she had a contact reaction to one of her food allergens while playing at the park. She’s very sensitive to dairy, so if someone had just enjoyed a bag of Doritos before pushing the merry-go-round before she touched it, for example, and then she wiped her nose or eyes, she could have reacted. If that’s the case, however, it would suggest her reaction to a dairy contact is now much more intense than what it once was.

Or, even more unsettling, she might have had a new reaction to an environmental stimulus, like pollen. Either way, we have to find out, which will require uncomfortable pin prick tests up and down her back, and even these are not always conclusive. In the meantime, we’ve been instructed to give her a prophylactic dose of Zyrtec each day, and now we’re even more cautious about letting her play outside.

She has thrived this year in Kindergarten, however, thanks to her wonderful teacher and staff at Unit 40’s Early Learning Center, and she’s made many new friends. Unlike her siblings, who were often willing to sit back and watch things happen, Annaka is, by her own definition, often “the boss” at playtime. 

“Things just get done faster,” she explains. “When I’m telling people what to do.”

Please continue to keep us in your prayers.