Do you have Final Arrangements?
April 5, 2019 Update:
Since we arrived back home, Asher has shown increasing and alarming symptoms. An MRI revealed evidence of tumor progression as well as a cyst that has formed near the site of his biopsy. He is very weak right now, and Leah and I are faced with a number of very difficult decisions about treatment. We beg you to pray alongside us for healing, wisdom, and mercy.
There was genuine debate between very intelligent medical professionals as to whether or not there was real tumor progression happening. Regardless, the cyst was real. It formed as a result of radiation treatment that had been very effective, as there was a lot of dead tumor tissue. It’s hard to be happy about an effective treatment that precipitates additional crowding in an already crowded space in your child’s skull. But we really had no idea what was going on. All we saw was a massive onslaught of symptoms and struggles. The primary treatment was an increase in the steroid dosage to attempt to calm down any swelling that was present.
The kinds of symptoms he was displaying were not unlike end-stage symptoms: an increased respiratory rate, fatigue, headaches. I had the hospice nurse level with me around this time, and she said “This looks like what I normally see as nearing the end.” The social worker that usually accompanied the hospice nurse who had been taking care of Asher since we returned home was gentle, but very direct with me around this time, asking me if we had made final arrangements yet. I wasn’t offended, but I was certainly taken off guard. I had what I thought was a healthy boy not four months ago, and this is where we are? We were told to expect nine to twelve months, and we get four?
So I began to work in pursuit of nailing those things down. I called my pastors, and we had conversations about the logistics and desires that would surround my son’s future passing. If you can take the state of denial that we often describe as “surreal” and couple that with an exhausting amount of emotional pain, that might begin to describe what it was like.
Pray for the doctors and nurses who care for our son. Thank God for them. Ask God to grant them wisdom and knowledge. Asher’s current state is not what they (or any of us) were expecting right now.
Pray that Asher’s heart would remain strong and faithful. He has demonstrated incredible courage and faith over the last few days, even as his body is failing him.
Pray for Annelise, who has asked me repeatedly to explain to her what it means to trust God. Pray that God would speak to her in a way that she understands, even through her dad.
Pray for our family. We’re all kind of shocked at how Asher’s condition has taken a turn.
Pray for Leah and I. The last few days have been filled with deep joys and sorrows. At the end of each day, we find our cups empty, pleading with God for anything he might graciously give us - to heal our son, to grant us wisdom to make decisions, to comfort our hearts, or to give us what we need to simply make it through another day.
We are hurting, and it causes our hearts to sink a bit when it looks like there is more deep sorrow to come. I write this, not knowing if my heart can take another day, but I am told in 1 John 3:20 that “He is greater than our hearts” and in Psalm 73:26 “My flesh and my heart may fail, but God is the strength of my heart and my portion forever”