The Blin

In May, Michael finally finished his second course of chemo. He was given the week of Memorial Day completely off from chemo to allow his body to recover from the cocktail of drugs he had been given over the previous weeks. On Monday, June 2nd, Michael and I left early to get down to Ann Arbor by 7:30 AM. Michael was scheduled to get a spinal tap and have a PICC line put in that morning and then go up to infusion to get hooked up to a backpack that contained a medication pump (probably not the correct term, but you get the idea). This pump would give Michael a small dose of a new drug called Blinatumomab (Blin) through his PICC line at intervals around the clock for the next 28 days. Michael would be admitted to the hospital that afternoon for a few days to monitor how his body responded to the Blin. We got to the hospital on time, got Michael’s port accessed and labs drawn as usual, and then met briefly with a nurse practitioner, before heading down to pre-op on the fourth floor.

In pre-op, we went through all the normal procedures and answered all the normal questions about medications, allergies etc. As the medical staff was getting ready to wheel Michael out to the operating room, the nurse practitioner appeared and informed us that Michael’s ANC and ALC (still trying to figure out exactly what that is) were not high enough for Michael to have the procedures and move forward with the Blin that day. We made it back to our house around noon, and with the afternoon now free, Michael and I went and played nine holes of golf at one of our local courses.

The next Monday, June 9th Sarah took Michael down to Ann Arbor, only to be told the same thing once again: Michael’s ANC and ALC were still too low to move forward. This time Sarah and Michael met with both our fellow Dr. Delap and our attending physician Dr. Walling. Sarah called me during that appointment and put me on speaker phone to discuss how to move forward. The debate was whether to come back on that Thursday the 11th or the next Monday the 16th. I wanted to put things off until today Monday, the 23rd.

My reasoning for putting it off for two more weeks was that we were expecting for Michael to be on the Blin by now. And we had been told by the doctors that the month on Blin is usually a pretty good month for the patient, because Blin works with the body’s immune system to fight the cancer instead of killing everything. Most patients on Blin feel pretty good that month. Consequently, Sarah and I had booked two vacations during the month of June. The first was the family vacation that we were not able to take during spring break. We had scheduled it for June 11th-13th. Sarah and I had also planned to go away for our anniversary June 19th-21st. I didn’t want to have to cancel either trip. For various reasons, the doctors did not want to push the start date past the 16th. We finally decided to go on our family vacation, and have Michael start the Blin on the 16th. The doctors told us that most patients get out of the hospital either the Wednesday or Thursday of the week that they go on the Blin. If Michael got out of the hospital on either of those days, it would still allow us to go on our anniversary trip. So, my hope was to get Michael on the Blin and still go on both trips.

That Thursday, we left for the Dayton Ohio area and arrived at our Airbnb that evening. One of the decisions that we made on this trip is that we would not to eat at any restaurants that we could also enjoy at home. I did some online searching, and that evening we went to a restaurant called Ford’s Garage. The restaurant has several antique cars from the early 1900’s parked in front of and inside of the restaurant, including one suspended from the ceiling. It has a cool atmosphere and the food was excellent. After eating we headed back to the Airbnb and enjoyed playing ping pong, foosball and Packman in the game room.

We spent the following day at the National Airforce Museum in Dayton. The place is absolutely massive. They have military aircraft from the time of the Wright flyers up to present day, including some of the most iconic ones (P 51 Mustang, the Bockscar – the plane that dropped the Fat Man Atomic Bomb on Nagasaki, a Huey from Vietnam, an SR-71 Blackbird, a B-2 Bomber, and an F-22 Raptor, to name a few) and hundreds more. They also had several former Airforce 1’s at the museum, including the one that flew JFK’s body back to Washington DC from Texas. Sarah and I hadn’t clearly communicated before we got there on how long we would be spending at the museum, and the history/aviation geek in the family (yours truly) kept us there a few hours longer than the rest of the family would have preferred…but it was awesome! That night we gave our kids their first experience at a Cheesecake Factory. The restaurant was short staffed, so the service was incredibly slow, but the food was fantastic, especially desert!

On Saturday, we spent several hours at Scene 75 in Dayton, an indoor amusement park. We enjoyed go carts, mini bowling, black light put-put golf, laser tag, bumper cars, arcade games, an indoor roller coaster, and a pizza lunch. We left mid afternoon and headed home, stopping at Shorty’s Smokehouse in Toledo for dinner. The service was fast, and the food was excellent. We arrived safely home later that evening. It was such a blessing to get away for a few days, unplug from ministry responsibilities, not think about cancer, and spend some quality time making memories with our family.

On Monday, June 16th, Michael and Sarah headed back down to Ann Arbor. Sarah is a teacher, so during the school year, I was the one to take Michael on our weekly Monday treks to the hospital. But since school has been out, Sarah has been the one to take him. In theory, this arrangement allows me to take my day off on Friday and get things done around the house/spend time with family.

They got down to the hospital and had Michael’s labs drawn. At their appointment with Dr. Walling, she informed them that all of Michael’s numbers were good, and that he could move forward with the Blin. Later that morning, Michael had a spinal tap and the PICC line placed in his left arm. Everything went smoothly and he was hooked up to the Blin and admitted to the hospital that afternoon. When I talked to Sarah that evening, things were going great, and we were looking forward to him getting out of the hospital on Wednesday or Thursday and then enjoying our anniversary trip.

Things took a turn on Tuesday morning. Michael woke up very lethargic and complaining of pain in his legs. Later that morning he spiked a fever that fluctuated up and down over the course of the next two days. The doctors informed us that Michael’s symptoms were not unusual and that it would take a few days for his body to adjust to the Blin.

On Wednesday, Michael was worse. His fever was higher and he would stare off into space for extended periods of time. When he did move, his limbs were very shaky to the point that he could barely walk. Sarah and I decided to cancel our anniversary trip. I called the bed and breakfast where we were planning on staying and explained our situation. They graciously agreed to give us a credit toward a future stay. I had already planned on taking Thursday-Saturday off and had someone filling the pulpit on Sunday. So, I decided to head to the hospital the next morning. Late Wednesday evening, Michael began hallucinating. He started talking to a person who wasn’t in the room. Apparently, he thought he was facetiming the person on his tablet, but his tablet was sitting five feet away from him on a table.

I was up at 5:00 AM on Thursday and backing out of the driveway at 5:59 AM. I arrived at Michael’s hospital room at approximately 8:00 AM. He was sleeping but his condition was continuing to get worse. He was dealing with nausea and had refused to eat or drink anything since Tuesday evening. The medical team arrived and the doctors came in to examine Michael. He could not raise his arms or his legs without them shaking uncontrollably. The doctors asked him to stick out his tongue and when he did, it danced around without him realizing it. The doctors had told us that most patients turn a corner between the 48 and 72 hour mark. But Michael was approximately 65 hours into the treatment and only getting worse. The team made the decision to take Michael off the Blin and give him a steroid to help eliminate the side effects. It took all of Thursday, Friday and Saturday for the side effects to subside. On Friday we enjoyed a visit from one of our deacons and hearing about his recent trip to Israel. (He left the day before Israel bombed Iran).

On Sunday, the decision was made to start Michael back on the Blin but at 1/3 of the normal dose. The plan was to leave him at that dosage for 24 hours before trying to bump him up to a 2/3 dose for another 24 hours. The goal would be to eventually get up to a full dose but ease him into it. If at any time Michael started shaking or hallucinating, the Blin would be discontinued permanently, and he would be put back on a steroid until his symptoms subsided. That afternoon, Michael was also given an anti-seizure medication and a steroid to help prevent side effects. Later in the day, Michael was put back on the Blin at 1/3 the normal dose. We enjoyed a visit from Michael’s Nana and Papa, Aunt Rebekah and siblings. But I noticed Michael becoming more subdued as the visit went on. Our visitors left, and Sarah and I sat on the loveseat in his room and talked for about an hour before I headed home. Michael had wanted to stay up and watch Game 7 of the NBA Finals. He was watching it when I left, but he fell asleep before the game was over.

Today Michael woke up feeling lethargic and complained once again of pain in his legs. However, the doctors are checking on him every four hours, and thus far he has not run a fever, experienced any shaking or had any hallucinations. We were excited to find out yesterday that this week is our primary attending physician’s week to be on the inpatient side of things. Dr. Walling and her team will be meeting with Michael and Sarah every morning this week while Michael is in the hospital. When Michael and Sarah met with her this morning, they made the decision to keep Michael at the 1/3 dose of Blin for 48 hours instead of 24 hours. This will extend his hospital stay but give His body more time to adjust. She also ordered a bone marrow biopsy on Wednesday to check the toxicity levels of Michael’s bone marrow. Michael will likely be in the hospital for most of the week. We are hoping and praying that he can get past the stage of feeling blah and enjoy this next month.

PS. Literally seconds after I published this post, Sarah called me to inform me that Dr. Walling wants to keep Michael at the 1/3 dosage through Wednesday. At the pace that we are going, he will likely not be home from the hospital until sometime next week.