Outpatient Chemo

Since coming home from the hospital, Michael and I have been making weekly trips to Mott Children's Hospital in Ann Arbor. A typical Monday for us will have us leaving by 7:00 AM and getting home anywhere between 6:00 PM and 8:00 PM. The trip takes anywhere from an hour and a half to two plus hours depending on traffic. The morning rush going into the hospital can slow traffic down to a crawl. We have learned that an 8:30 AM appointment means that we are leaving by 6:30 AM at the very latest.

Once we get to the hospital, we put numbing cream on Michael’s port in the parking garage. Then we head to check in on the 7th floor reception area. After a quick stop in the waiting room, we are taken to the infusion area where Michael’s port is accessed by a “central line” (think IV tube) and blood is drawn. This process usually takes ten to fifteen minutes. Then we head back to the waiting room for our doctor’s appointment.

Waiting for the doctor seems to take the longest. Our waits have been anywhere from thirty minutes to an hour and a half. The doctor’s appointment takes anywhere from twenty to forty-five minutes depending on what is going on and where we are in the treatment plan. The appointments tended to be longer earlier on as we had lots of questions and were learning all of the medical terminology. One of the things that we appreciate at Mott is the thoroughness of the staff and their patience with us and our many questions. We meet with our fellow, Dr. Delap first. A fellow is a board-certified doctor who is receiving more training in a specialty, in Dr. Delap’s case, pediatric hematology oncology (I think). Dr. Delap then steps out, and has a discussion with Dr. Walling, our attending physician (think team captain) to confirm the game plan for the day. Dr. Delap and Dr. Walling then return and discuss any further questions, go over Michael’s progress, and confirm the game plan for the day. Our discussions include things like blood cell counts (there are three of them that we watch very closely), blood transfusions, medications, energy levels, side effects to medications, mental health, biopsies, lumbar punctures (spinal taps) and even things like when would be a good time to schedule a vacation.

Following the doctor’s appointment, we will either go down to the surgery floor for a procedure (spinal tap, bone marrow biopsy etc.) or go to infusion, the area where Michael gets his chemo. If Michael has a procedure, it usually takes about an hour from the time he is taken to the operating room to the time I can go see him in the recovery room. From there, it usually takes 15 to 30 minutes before he is ready to go home, or back up to infusion.

Infusion is where we typically eat lunch. Michael is hooked up to an IV pole with his chemo that is run through his central line. Infusion in Michael’s first course of chemo took about an hour and a half. If he had to have a transfusion, it added another hour and a half. For his second course, infusion should take about the same amount of time. But then Michael has to be on fluids for two hours before they will release him. After infusion, we get to go home. There have been times when we have closed the infusion center down and left to go home after 5:00 PM. We typically arrive home somewhere between 6:00 PM and 7:00 PM.

One highlight of our trips back and forth to Ann Arbor has been our stops at Chick-fil-a in Flint. Michael shares my love for Chick-fi-la, and we try to stop either for breakfast or dinner or sometimes just a snack depending on our schedule. Michael downloaded the Chick-fi-la app on my phone and puts in our to-go order in advance. When we arrive, I go in and grab the order. Then we will either eat in the parking lot or on the road depending on how rushed we are. This has been one thing that we have looked forward to almost every time we make the trip.

One of the things that I have been praying about is how to use all the extra time that I have with Michael for good. Michael will be 16 and going into his junior year in high school by the time he is done with chemo. The next few years are a major time of transition as he moves from junior high to well into his high school years. I’ve been asking God to help me shepherd him through this time of transition while he deals with this life-altering disease.

One way that I have tried to spark conversations with him is by starting a tradition on our drive down of sharing three things that we are thankful for. Sometimes this sharing leads to further conversations, and sometimes it doesn’t. But I’ve been very impressed with the things that he has mentioned that he is thankful for. I’ll let those details stay between him and me, but I am watching him take a much more mature approach to this disease than I think I would have at his age.

We will be making weekly trips from our home in Essexville, to Ann Arbor until November. After that, the trips will become monthly. My heart’s desire is that God will use these trips for our good and His glory.