The Blin Part 2

Over the course of the last week, the game plan for Michael’s treatment changed multiple times. The amount of time that Michael was going to be on the 1/3 dose of Blin went from 24, to 48 to 72 hours, and then finally to 7 days. After a couple of somewhat rough days on Monday and Tuesday, Michael seemed to turn a corner. He had a bone marrow biopsy on Wednesday that he tolerated well. Usually, he is sore for about 5 days after that procedure, but He has been in very little to no pain from Thursday on.

On Wednesday afternoon, Sarah’s two sisters came up to the hospital to relieve Sarah of her duties for about 24 hours. Our second child had some medical appointments on Thursday, so Sarah left Wednesday afternoon to pick that child up from her parents. They made it home just in time for Wednesday night Prayer Meeting. The three of us spent the night at our house (the only time in the past two weeks that more than one member of the family was home).

On Thursday, Sarah took our second child to her appointments, then dropped her back off and headed back down to the hospital. Since neither Sarah nor I could be physically present for the morning meeting with the medical team, we had one of Sarah’s sisters call me and put me on the phone with Dr. Walling. We had a good discussion about where things stood with Michael. Dr. Walling shared with me that she had spoken to a representative from the pharmaceutical company, and the rep’s recommendation was to keep Michael on the 1/3 dose of the Blin for seven days before bumping his dosage up. I asked her if she thought he would be home for the 4th of July, and she told me that she hoped so but couldn't guarantee anything. She also told me that Michael’s symptoms were unique. Most children either tolerate the Blin well or have severe side effects and have to be taken off it immediately. Michael’s side effects were somewhere in the middle which doesn’t happen often. She told me that the reason she ordered the biopsy was that she was concerned that Michael’s cancer may have come back which would explain why his body was responding to the Blin the way it had. This news obviously greatly concerned Sarah and me. Dr. Walling also shared with me that Blin is just one tool in the tool box to combat Michael’s leukemia. It is a newer drug that has only been approved for pediatric use for a few years. She assured me that while Blin has been proven to be incredibly effective against leukemia, there have been thousands of leukemia survivors who have never taken Blin. If we had to take Michael off the Blin, she was still very confident that his cancer could be addressed without it.

For the last several weeks, we have had a major project going on in our backyard. At the end of the summer last year, I purchased a used above ground pool for pennies on the dollar. About a month ago now, we had a landscaping company come in and level our back yard for the pool. I had been able to get the pool up a few weeks ago, but because of local laws requiring the pool to be fenced, I had not put any water in it. Earlier this past week, I found a used fence on Facebook marketplace about 30 minutes from our house. It was significantly less expensive than a brand new fence. I bought it on Monday evening and rented a U-Haul truck and transported to our house on Tuesday evening. Wednesday and Thursday evenings were committed to church activities, but I planned on working all day on Friday and Saturday to get the pool filled and the yard fenced. Working 14 to 15 hour days on both days, and with the much-needed help of my Dad, the pool was filled, and the fence was up by the end of the day on Saturday. My children’s entire world has been so upended that I just wanted them to have something that they could enjoy this summer.

On Friday evening, Dr. Walling stopped by Michael’s room and informed Michael and Sarah that the initial biopsy results were back, and no cancer was detected! She also said that she was going to be bumping Michael up to the full dose of Blin on Sunday afternoon, and that her goal was to have him home on or before July 3rd. Dad and I were busy working on the fence when Sarah called me with the good news. I broke down crying like a little boy when Sarah told me that no cancer had been detected in Michael’s biopsy. This journey with cancer has been such an emotional roller coaster ride. And over the course of the journey, I have sobbed both in sorrow and in joy.

Saturday was relatively uneventful for Michael and Sarah. Sarah could tell that Michael was feeling good because he started joking with the nurses. He was up and walked several laps around the floor that day.

On Sunday, our church had a picnic lunch in the church pavilion after the morning service. Following lunch, we went straight into an afternoon pavilion service. I got home a little after 2:00 PM and my parents arrived around 3:00 PM. We drove down to Ann Arbor together. My parents had not been able to visit Michael in the hospital during this hospitalization. Sarah and I had already made the decision that I would drive down on Sunday afternoon. Sarah would drive home that evening and pick the kids up the next day, so that they could enjoy the pool this week. I knew my mom especially wanted to visit Michael, but she and my dad had made the trip once before and weren’t comfortable with Ann Arbor traffic. We arranged for them to come down to the hospital with me and go back with Sarah so that they would have an opportunity to visit Michael. We all had a nice visit together Sunday evening, before Sarah, Mom, and Dad headed home.

At about 4:30 Sunday afternoon, Michael was bumped up to the full dose of Blin. Our experience with this drug is that Michael usually dose not start experiencing side effects until sometime during the night or in the morning. Michael was a little more tired than normal on Sunday night and unfortunately did not sleep well. He experienced hot flash symptoms that kept him awake. But this morning, he has perked up and seems to be doing quite well.

When the team examined him this morning, they noticed a slight tremor in his arms, but he is not experiencing any nausea, and his appetite and energy are good. He is also not experiencing any pain and has not had a fever. The medical team indicated if Michael stays the same or improves, he should be able to go home on Thursday. And that is our hope.