Out of Options

November 16, 2019 Update:

Friends and family, thank you for continuing to care for us, and lift up our family in prayer.

The results of Asher’s MRI this week are mixed. The good news is that there was a further reduction in the necrotic tissue, and the cyst as a result of his last infusion. However, there is concern about changes in the diffuse portion of the tumor in the pons, as it appears to be growing. The term “diffuse” is used to describe bad tumor tissue mixed with good brain tissue, like sand being sprinkled in the grass. That is why this type of tumor is inoperable, because it’s simply impossible to remove the bad cells surgically without damaging good tissue.

Having seen the clonus in his right leg a couple of weeks earlier in NYC, the results of the MRI were not a surprise to me, but it was a gut punch for Leah. She didn’t have her eyes closed to neurological changes, but, because we had such a wonderful late summer and early fall, she simply thought we had more time until growth would resume. We both knew though, that once growth resumed, it was anybody’s guess, with survival ranges averaging anywhere from one to four months.

Months earlier, Asher made us promise him that we would always be honest with him about test results, treatments, or lack thereof. So, we decided to honor that request by telling him exactly what the MRI results were. He was in the playroom watching TV, when Leah and I walked in, closed the door, and turned off the TV. I began by reminding him of his request to know test results no matter if they were good or bad, and I asked him if that was still the case, and he confirmed. So, we told him the tumor had begun to grow again. He knew what it meant, and in that moment, the three of us became united in our open, grieving helplessness. We had no action plans. No potential medical treatments to look forward to slowing things down. There weren’t any words, just tears and prayers that cried out to God for help. It had been ten months to the day since his first MRI, and Asher was always full of hope, but now, for the first time, he understood that the likelihood of this tumor taking his life was very high.

That being said, please continue to pray for his healing. Pray that our faith would remain firm.
While we have no more cancer treatment options that wouldn’t reduce his quality of life, we still have time together. Thank God for answering the prayer for more time as I requested at the beginning of this journey. Pray that we can make the best use of the time as God still grants it to us.

Pray for Asher’s heart. He has known for a long time that the tumor is potentially life-threatening. We sat down with him today and explained that the tumor had resumed growth. He took the news pretty hard, as he is aware of where this could lead, and our lack of options. We grieved and prayed together. Honestly, there are no words to describe it. We’re a family of broken hearts.

Pray that his family, and church family would be able to demonstrate love and care to him directly in a way that is bigger than his grief, and that love would cast out fear. Pray that he becomes overwhelmed with love in our community. Pray that he never feels alone. Pray that his heart and imagination would be stirred to the eternal. Pray that he can laugh at death, because through the finish work of Christ, it has no power over him. Pray that God would speak his love, kindness, and gentleness to him.

Pray for Leah and I as we prepare for what’s ahead.