And What Else?
September 2026 Update
Coalt Robinson
9/30/20265 min read
“Humble yourselves, therefore, under the mighty hand of God so that at the proper time he may exalt you, casting all your anxieties on him, because he cares for you.” ~ 1 Peter 5:7
We got back to the Ronald McDonald House in Rochester after a good 10-hour day of tests, appointments, and consultations with doctors. I am writing this on Wednesday, not sure when it will get posted. I meant to write before we left, since several people were asking and this is the only place they keep up with Gage. Sorry about that. I started this blog because people wanted updates, but also because it gives me a place to process thoughts and emotions that have been, and continue to be, a jumbled mess. The fact that I haven’t written for a while doesn't mean my thoughts and emotions are sorted for the time being. It might be the opposite: I don’t know where to start, so let me begin with Gage's bedtime routine.
I’ll start here: When Gage goes to bed, he always wants me to tell him a story. Sometimes the story is about school, and other times it's Paw Patrol or Huggy Wuggy. Lately, I sit on the side of his bed and make him get “cozy” and close his eyes before the story begins. I tell the story, and more often than not, he falls asleep during it. I don’t take this as a commentary on my storytelling; he is a preschooler now, so he is just extra tired. Whether he falls asleep or not, I go right from the story to praying out loud for Gage. I ask the Lord to heal him, and I have also been praying that the Lord would be with these appointments and that his doctor would approach his case with great wisdom. His doctor has always amazed us with how she thinks about Gage’s well-being. She thinks not only about what to do now, but also about how what we do now will impact him two or four steps down the road. That said, I haven't been able to shake the feeling that things seem a bit stagnant, or at least might be heading that way.
When we met with Gage’s doctor, after she told us his MRI looked good and everything was stable, she said she had been doing some thinking about Gage. She asked if we had any initial questions, and I asked about his medication dosing. She said she wasn’t going to answer, but that we would come back to the question of his medicine. At that point, Gage interrupted and asked her what her baby’s name was (last time we were at Mayo, she was on maternity leave). He got a “pass” for interrupting because he was being so sweet, which prompted the doctor to show him pictures of the baby. Then the doctor explained that she had been feeling like we were sort of in a car that was safely parked. She said we weren't in a bad place; his medicine was controlling the disease, and he was feeling well. The issue, according to the doctor, is: what if we stay “safely parked” and we miss something by not looking into other things? Around this time, she received a page she had to get. She called someone from the room phone and talked with them for a few moments. We could tell the issue was serious, as she told the people on the other end that she or her nursing staff would be in touch right away. The doctor hung up, excused herself, and left for a few moments. She came back and apologized, but she didn’t need to. A doctor who treats cancer in children and makes such crucial decisions that can save lives and ease pain and suffering has my blessing to take a call during our consultation at any time. When she returned, she picked up right where she left off and started walking us through some of the things she'd been thinking about. There were several things that I do not want to get into, but some had to do with changing his medication, and even a more “traditional chemo” was on the table. We didn’t have to decide anything in that moment. One of the things she told us was that she wanted to go back and revisit pathology, and perhaps get some other thoughts. This is a complex issue, but I'll say it: ever since I heard from some of the most respected pathologists in the study of ECD at the conference we attended in Seattle last year, I have been praying that one of them would look at Gage’s case. Obviously, we trust Mayo and are so grateful for all the help we have received. Still, we're even more thankful for a doctor who puts her patients' well-being above her own ego and is willing to look beyond the number-one-ranked hospital in the United States to others on the leading edge of ECD research.
I know I am being a little vague about all of these “thoughts” Gage’s doctor had, but don’t miss the point. The point is that all of this was an answer to prayer. Her parked-car analogy put a finer point on what I had been feeling. I want to be doing something. While things are good and stable and we are “safely parked,” it seems like there are things we can do, or at least talk about options, going forward. She gave us a lot to think about, and it was a bit overwhelming, and she asked if we had any questions. We both had a few, and after each answer, she would say, “And what else?” She would wait. We would ask something; she would answer and say, “And what else?” Here is a lady who left in the middle of our time because she had to deal with something very serious that wasn’t over and had obviously impacted her, and she took the time to make sure that she was present with us and wanted us to be heard and our questions asked and answered. That same spirit of care is what I keep thinking about as I reflect on the appointment.
I left that doctor’s office feeling heard and cared for by Gage’s doctor and also our heavenly Father. I was amazed that He not only heard my prayers but also clarified some of that jumbled mess that I was talking about earlier. I wonder what would happen if we thought of our heavenly Father, who loves us and cares for us, as saying, “And what else?” after every request made of Him? I am not saying that we should strive to think of things to ask of God, but to think of God as caring so much for you that He wants you to pour your heart out to Him. For me, this includes both making requests and talking to God about that jumbled mess of thoughts and fears that feels all-consuming so often. This is all part of trusting God in the next steps that we cannot see. Even that uncertainty becomes part of prayer.
One fun part of our trip was that Silas got to come with us. Gage really wanted to show Silas the Ronald McDonald House. On Wednesday, after all our appointments were finished, we had a couple of hours before supper, and Desirae wanted to go to the exercise room. There is a big gym/play room right there where the kids can play while someone is doing a little exercise. Long story short, Desirae didn’t get to do her exercise and ended up in another play room with the boys. At that point, a mom and her son came in, and Desirae started visiting with her. Everyone has a story at the Ronald McDonald House. This mom’s story was that her son had been diagnosed with a rare brain tumor and was not given long to live. This mom had been spending her weeks in Rochester for radiation in order to give him some more time. Desirae got a chance to pray with her, and we would ask you to pray for this family. Pray for a miracle for this little boy. Pray for strength and courage for this mom and dad as they walk through this very difficult time. Pray that, through it all, they would trust the hope of eternal life that only Christ can give.
