Hope and the beast

The.Beast.
That is what rejection was referred to yesterday by a friend of mine as we chatted about life, and I shared my fears about the cause of Hope's recent rising liver values.
The beast.

Last night I learned that Hope's team is also sharing the same concerns about her rising liver values. As soon as I heard our NP's voice, her concern and disappointment was palpable. The values were high. Again. A biopsy of her liver will be scheduled. Because rejection is serious. Serious enough that when her numbers came back high on Tuesday they wanted her back for labs again on Thursday. Serious enough that our NP said they hope to have the biopsy scheduled later today for next Tuesday.

Hope's little body is doing what it has been designed to do. It recognizes something as foreign, and begins a fight against it. Now there is a battle being waged. She has had three different medications to help prevent the rejection beast. She takes her tacrolimus/prograf twice daily without fail. She loves this medication, and loses absolutely none. This week, her labs showed her tacrolimus level was high. Her liver numbers should be lower. Not rising. And so, the process was explained to me by our NP. Biopsy to confirm rejection. Admit to the hospital for high dose IV steroids to hopefully stop the rejection. Discharge home with oral steroids. All while continuing the twice a day tacrolimus. Her immune system will be depleted. Again. We will be under strict precautions for isolation. Again. And to top it all off there was a study published yesterday in the Journal of the American Medical Association discussing the increased incidence of cancer deaths among patients (especially pediatric patients) with solid organ transplants, likely impacted due to immune suppression.

Needless to say, this news was not what I wanted to hear. As I drove home from transfusion day with Hope snuggled happily in her car seat and her two older sisters now looking pink sitting behind her, I wanted to get away. I wanted to sit with my daughters on a warm beach, feeling the soft sand and listening to their giggles as they splashed around in water. Without a care in the world. THAT is where I wanted to be. Not prepping for yet another anesthesia procedure and inpatient stay. Not preparing for the horrible personality changes, albeit temporary, that occurs with a child on steroids. I wanted my happy place. This was just too hard to face the reality that my baby girl is going through. She has already been through the unimaginable in her short 21 months of life. Rejection impacts about 20% of all liver transplant recipients. Of that 20%, there are 5% for whom the IV steroids will not work. The BEAST.

And this morning I woke up with the weight of all of this. And, as I drank my morning tea and did some reading I realized I completely forgot. I just forgot. I forgot about the mercies.

My morning devotional reading was about the story of Moses. Moses is obedient to God's plan, and goes to Egypt to deliver the Israelites. When things get harder instead of easier, Moses begins to question God. The line "If I just follow God's plan, everything should go smoothly, right", struck me. In no way was this ever promised. Being obedient to God and following His plan does not bring easy. That was never part of the deal. As I continued to read, I was reminded to draw close to God in confidence, so I could find MERCY and favor. There it was. My reminder. To look for the mercies.

I forgot. But I was reminded by a good, good God.

We may be facing the beast, but our God is with us. And He will send mercies. Like our amazing, amazing medical team. The team who clearly love my girl. This was so evident in the NP's voice as she delivered the news of the probable rejection. We have a team who will be with us and they will use their knowledge to do the best they can for Hope. We have the nurses on 10 South. Oh, those nurses. We have experienced some of our hardest days under their care, and they are gifts. The thought of seeing some of our favorites again makes the news of rejection easier to take. We will have the clinical assistants, like T, who always manages to bring a smile to Hope's face. Perhaps it is because he accidentally got some of her ascites fluid in his mouth. Yep, in his mouth, as he was emptying her drain. He never even reacted in other than a laugh. T is a gem. We will get to see him again. Our community is already rallying. Encouragement has been pouring in. And one of the biggest mercies of all is that the probable rejection beast was caught early and my baby girl is alive to fight the beast. She is ALIVE. I now have online friends in the liver world who would likely do anything to have their children still living, even if it means fighting rejection. Hope is here. And we will face this.