Hope is still on steroids and has been since the rejection beast was diagnosed back in January. Our team uses a long term taper after high dose steroids to gradually wean away in hopes of keeping the rejection at bay. Her prograf dose (antirejection medication) is increased to a high level in order to give more assurance of taming the beast. All seemed to be progressing nicely. Her labs were normal. We decided to plan a much needed road trip to our favorite place on the planet, to decompress and relax as a family after a long year. Our team gave us their blessing to go, as long as things remained stable...
Hope had a liver biopsy last week to further confirm that she is in rejection again. Her team was feeling confident that rejection is what we were looking at given her abnormal liver tests. They explained we would do another high dose steroids by IV in the hospital, and add a second medication to help fight along with the prograf, since Hope cannot continue to remain on steroids long term. Steroids are too dangerous. The team hoped we could do the steroids, add a second daily medication, and then be on our way for our road trip. Only now, she has been anemic. Her blood clot time is slightly elevated. And her Epstein Barr viral load (EBV) is not decreasing. Instead of getting a call for hospital admission the day following biopsy, our team called to say the results were still pending. Yesterday, they explained that yes, she does have mild rejection again, but they are also concerned that she has Epstein Barr hepatitis along with it. And the biopsy results for the hepatitis would not be ready until last night. This time, it is not a case of if she has EBV hepatitis, but how severe it is. Initially, they decided that a plan would be made today about treatment course. A few hours later, they called with a new plan. Because having both rejection and hepatitis is very complicated and delicate to treat, they decided that rather than have only two of Hope's doctors decide how to proceed they would rather have all of her doctors weigh in. That speaks volumes as the two doctors who would have made the decision include her head surgeon and one of the amazing liver doctors on our team.
Having both EBV hepatitis and rejection is a difficult place to be in. Treating EBV hepatitis includes lowering her dose of Prograf, giving antiviral, and IV immune boosters. Treating rejection includes further suppression of her immune system. These are completely opposite, incompatible treatment plans. Hope's team will decide which is more pressing to treat. By treating rejection, her EBV could ravage her body causing the dreaded PTLD (post transplant lymphoproliferative disorder which includes lymphoma). By treating EBV, her rejection could worsen and she could lose the very organ which has saved her life. It has become easy to fall into the slippery slope of constant worry.
Last night, as my BFF and I texted at 2:00 am, I realized that the worry was stealing my joy. Because I am allowing it to. The choice is mine. The reality is that there is no control over viruses which get into little bodies and replicate. There is nothing I can do to change the fact that Hope has these two battles going on inside her beautiful hero liver. Channeling my energy into something I cannot control is futile, and will suck me dry. My task, I think, is to put the worry aside. I know this is not easy. I am not a superhero or a saint. I am just an ordinary girl serving an extraordinary God. A God who continues to shower me with mercies and is patient with me as I learn and fail. So I will choose to try to put the worry aside. It is a choice I can make and put effort into. Instead of keeping my focus on the worry, I can keep my focus on the gift of today. The joy in today. The hope in today. And whether the time is short or long, I will treasure each and every moment I get with my sweet baby girl.
