A couple of weeks ago I received a bill from Lucille Packard Children’s Hospital that itemized most of the expenses from our time in California. It nicely did the math of all the bills we’d paid and what insurance covered and the total cost of everything. Overall it was almost 2.5 MILLION DOLLARS!!! And that’s not even including the life flight bill that cost more than our first house. The amazing news is that insurance paid almost all of that. I feel so unbelievably grateful for that, and very humbled and concerned for the people who don’t have insurance like we do. Getting that bill so many months later was like this giant chapter closing and I felt like it was so far removed that we were able to easily look back on that time in the past, be grateful for it and that we were beyond that time. And then we got a bit of a reality check. Two weeks ago we got a routine blood draw that showed Delia’s liver enzyme levels to be triple what they ought to be. We immediately got thrown into a couple of weeks of us trying not to panic, a lot of waiting and, unfortunately for Delia, some pokes. We spent a day at Doernbecher’s to get a liver biopsy and the result was that Delia was in moderate rejection. The good news is that it was moderate, not a result of an autoimmune flare and very normal for people who have had a transplant. She spent a few days on high levels of steroids that we have already been able to wean off of and her enzymes are coming back to normal levels. Pretty anti-climactic for our first rejection and we’ll take it! I wish there was a different word than “rejection” because it sounds so scary and severe and permanent. It’s been really more like a “mild disagreement” and even in more severe cases, I’ve been assured that it’s pretty normal and treatable. That is obviously very reassuring to us. It’s also been a bit confronting to remember that this is a life long thing for us and for her. This has also made me even more grateful to COTA and all of you lovely people that have donated to COTA for Team Delia. We have great insurance now and despite the monthly expenses of her medications now we are not struggling to pay for her care, BUT she will not always be under our insurance and we won’t always have this insurance. I love that COTA grows with her and that COTA funds will be available for her in the future. Hopefully this is the only time she’ll go into rejection but one of her medications is 2,000 dollars a month before insurance and I am so thankful that she’ll have COTA to fall back on if she needs it and if we need it. Delia is not officially out of rejection yet and her being back to even more immunocompromised is scary in pandemic, flu season, but we are overall doing very well. Her last blood draw was great and we’re hoping that she’ll be able to go back to more spaced out blood draws here soon. (once a week is too many!)

In other news, Delia grew another inch since July. This is her dressed as Psych’s Detective Juliet O’Hara for Halloween.