EoE Treatment Update: Hope in the Midst of Tough Decisions
Updated to add: Yesterday morning I was in the PICU waiting room cleaning up from the breakfast we had served when my phone started ringing. I pulled my phone out to silence it and saw that it was Audra's doctor's office. I took the call in the hallway and was surprised that Audra's pathology results were already back from her procedure last week. Our hope was that her eosinophil count would be in the normal range (0-15). Her doctor, who was so kind to take the time to call me personally, delivered the news that her numbers were back up in the 50's. For context, her numbers were in the 160's when she was first diagnosed, so this wasn't an alarming count, but it was certainly disappointing. As much as we tried not to, we did have our hopes up that she may have experienced full resolution of this disease.
So how do we move forward? We are talking through the treatment options given to us by her doctor, but in the mean time, we are also evaluating where our hearts are with this news. We are disappointed. It breaks my mama heart to see our daughter walk through pain and have to deal with endoscopies. It's hard to see her disappointment over not being able to eat certain foods. And it feels helpless to know that I can't fix it. Yet, we are hopeful. In the midst of the hard, we are also keenly aware of all that we do have to be thankful for. In terms of EoE, Audra's list of food allergies is fairly short, and she has an amazing quality of life. She is overall quite healthy and strong, and we do not take that for granted!
Throughout our journey with EoE, we have also seen such beautiful gifts straight from the heart of the Lord. Last week as we prepared Audra for the endoscopy, one of our biggest prayers was that the Lord would give her His peace and presence. God answered that prayer with a nurse named Sherri. I told Andrew later that I really believe that nurses have the ability to act as angels in their patient's lives. Sherri was able to put Audra at ease in a way I've never seen a nurse do before, and we loved her immediately for that. After the procedure, as Audra came out of anesthesia, Sherri stood over her rubbing her arms gently and saying over and over, "You're so brave, you're so brave, you're so brave. I bet you didn't know how brave you are. You're so brave." Her care for Audra's needs, both physical and emotional, were just what we had been praying for. It was a little reminder from the Lord that He is holding Audra in His arms, even when we can't, and that He is whispering truth over her heart. We are continuing to rest in His perfect love for her and the peace and hope He brings.
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As a parent, one of the most challenging parts of walking your children through medical difficulty is the decisions that need to be made. We’ve been in the thick of it for a few months regarding a decision we had to face with Audra’s eosinophilic esophagitis (EoE) treatment and have been asking ourselves these questions: How do you make a choice between multiple options that will have an unknown impact on your child? How do you make wise decisions without doubting or second-guessing yourself down the road? How do you deal with the sometimes crippling fear of not making the “right” decision?
We are so thankful to say that Audra’s EoE has been stable for the last couple of years. We have been able to manage the disease with minimal medicine and no recent endoscopies. But we were thrown for a curve ball last fall when her doctor—noting how well she was doing—proposed that we take her completely off the medicine for a three month trial period to see how she did. If Audra could make it through the trial period without symptom relapse, he would need to do an endoscopy to check her eosinophil counts.
We thought about, prayed about, and agonized over the decision for months. There were times that if felt impossible to make a decision. What would be better, keeping her on the medicine and avoiding the trauma of an “optional” endoscopy, or enduring the endoscopy to see if we could take her off the medicine completely? In the end we decided to take her off the medicine to see how she would handle it.
Today, we’re about three months into the no-medicine-test, and Audra hasn’t experienced the vomiting issues that we were dealing with prior to the diagnosis and prior to the medicine’s success. This Thursday she’ll have the endoscopy to check on her eosinophil count.
Finding Hope
When it’s your kiddo, the weight of a decision seems heavier. It would be one thing to decide on a treatment plan for myself, but this is our little girl. We asked the Lord for wisdom and peace in making our decision, and now, a few days away from the endoscopy, we need a fresh dose of His peace, comfort, and faith.
So what does hope look like for us at a time like this? I think a big part of it is resting in the confidence that whether Audra’s eosinophil numbers are high and she has to go back on the medicine, or we are celebrating healing, that God’s presence has been with us through every decision and moment. That through it all He’s still good. It gives me hope to think that God can equally use high numbers and living with the condition or healing as a testimony of His grace and love in our family life.
There’s a lot about hope in the Bible, but Paul’s conclusion on the effect of facing difficulties stands out:
“...and hope does not disappoint, because the love of God has been poured out within our hearts through the Holy Spirit who was given to us.” - Romans 5:5 (NASB)
Whatever you’re facing, be encouraged that hope in God, hope in His presence, and hope in His purposes for us does not disappoint. Our prayer is that the Spirit will continue to lead and guide us and you as we face the decisions ahead.
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