Pivoting to Quality of Life
Caring Bridge - July 8, 2019:
As of today (Monday), Asher is still in inpatient care here at St. Jude’s in Memphis. Thankfully, the symptoms for which he was originally admitted have been resolved. Unfortunately, new issues have surfaced—fever, vomiting, diarrhea—and are the reason he is still being kept inpatient. Please pray with us that Asher will be stable enough (no more fevers, vomiting, or diarrhea) to be released as soon as possible (as early as tomorrow). Also, please join us in thanking God for the blessing of inpatient care—our doctors, nurses, and other staff at St. Jude have been excellent during this tense and tough bout. As taxing and uncomfortable as it can be, we are thankful that we didn’t have to battle the constant barrage of issues that came up this week by ourselves.
With a diagnosis like Asher’s, our primary focus is symptom relief and management, and it seems up to this point the clinical trial medication has only added more symptoms. So where do we go from here?
After a few conversations with Asher’s doctors, we’ve settled on a new treatment plan. First, we will cease the clinical trial. We’re thankful that everyone in charge of his care was in agreement that it was not serving him well. The symptoms, however, (some effects of radiation) are still in play: from cyst, tumor, necrotic tissue, and inflammation. We want to relieve inflammation but avoid steroids. Asher’s oncologist, thankfully, offered a solution. It’s not a trial drug, and it just might do the trick.
Of course, any medication used to help fight cancer is strong and comes with risks and side effects. This medication will be given via infusion every two weeks. So, the catch for us is that we will need to stay an extra couple of weeks (roughly from today) for observation while he starts the medication, just to be safe. We’re encouraged by the possibilities, and we’ve agreed to move forward with this plan. Please pray for successful symptom relief.
As always, we thank you for praying for Asher and for our family, as we wait for the Lord with patience for what He has in store for us.
I have to say that while we weren’t out of the woods, we were completely onboard with the proposed change in direction. The medication of choice, Avastin, had a proven track record in targeting and reducing some of the non-tumor sources of inflammation in his brain such as necrotic tissue. This change would set us up for some of the best weeks and months of the remainder of his life.