The Land of a Thousand Decisions
April 26, 2019
Thanks for your prayers for us while we were away last week. On Wednesday, Asher had an MRI, and the results are mixed. The inflammation due to radiation seems to have dissipated, however, the cyst that formed at the biopsy site appears a little bit larger. This brings us, and our doctors back around to examining whether or not there should be an attempt to drain the cyst. There are significant risks for anyone in his condition, particularly when it comes to breathing, especially the ability to be put on a ventilator for surgery, and taken back off when the procedure is complete. Pray for us and our doctors as they assess him, and pray that all of us would have wisdom, and that Leah and I would make the best decisions with the information we have.
From the beginning of my son’s diagnosis, a friend of mine, who is also a nurse, did his best to balance his relationship with me and my family with his years of experience working in a hospital. I could tell at times there were things he thought he might need to tell me, but wasn’t sure, and chose to err on the side of caution. One of the first things he told me was that I would be “in the land of a thousand decisions” regarding my son’s care at some point. Now was that time. There was polite disagreement amongst some of the doctors regarding the results of the previous MRI, and now there
Under the care of doctors and nurses, we have started another attempt to decrease his steroid dosage. In the past, when his steroid dose has been reduced significantly, he’s ended up in the hospital. Pray that he can wean successfully this time, as it could have a positive affect on his quality of life.
Caring for Asher can feel a lot like caring for an infant, and we kind of walk around in that same kind of fog these days. Leah, Asher, and I don’t really sleep very well, and it takes a toll. Pray for increased, and consistent rest for everyone. As folks are constantly looking for ways to help us, pray that we would see clearly any ways that we can unleash that tidal wave of care to be effective at helping us.
Continue to pray for our hearts, especially for Asher’s heart. Not a day goes by where he doesn’t grieve the loss of all that’s been taken from him. In varying degrees of severity, he’s lost movement, sight, speech, hearing, and simply independence. You can imagine how hard that is on anyone, but for an 8-year-old boy to lose those things in less than four months is devastating, to say the least. Pray for Leah and I as we speak truth to him in kindness and love. Pray for us as we search for activities that we can enjoy together.
Thank you for loving us and our family.