The Battle With Pancreatitis

On Monday, April 28th, Michael hit a significant milestone in that he was able to drink some water without gagging or throwing it up. This was the first time he held down anything since Saturday morning. It seemed like we were finally getting his nausea under control. Michael’s pain seemed to stabilize that evening but was consistently a 3 to 5 out of ten.

At approximately 2:00 AM on Tuesday, I was awakened by a commotion in the room and woke up to see four or five medical staff in the room with us. I was informed that Michael’s oxygen levels had been slowly dropping throughout the course of the night. It was believed that this was due to excess fluid finding its way to Michael’s lungs. As a precaution, Michael was put on oxygen, and had an x-ray done of his chest. I remember waking up around 4:00 AM (I never sleep well in the hospital) and seeing that Michael’s oxygen number was back up where it should be.

At 7:00 AM I was awakened by the nurse shift change. I looked up and was grateful to see the face of our favorite nurse from our prior hospital stay. Her name is Sara, and she is a fantastic nurse. However, she informed me that the results from the labs that were taken the previous night were showing some concerning things chief of which was Michael’s hemoglobin. His hemoglobin levels had gone from 12 to 7 in just two days. This was surprising to me because I thought that the last time that Michael was on his most recent chemo drugs, his hemoglobin had actually gone up. (I went back later and checked the test results in the online portal and realized that I was mistaken.) The other thing that could cause his hemoglobin to drop so quickly was internal bleeding.

I was also informed that an EKG that was taken at 2:00 AM showed that the voltage of Michael’s heart had gone down somewhat. It is believed that this was probably due to excess fluid that has settled around his heart.

When I met with the team on Tuesday, the decision was made to put him on Lasix every six hours around the clock to try to drain off the excess fluid from his body. I also was informed that he could be bleeding internally from his pancreas. It was decided to do an ultrasound of his pancreas to take a look at what was going on. An echo was scheduled for his heart to check its function as well. The decision was made to give Michael a blood transfusion to try to get his hemoglobin numbers back up. We also made a decision to switch Michael’s primary pain medication as the morphine was causing nausea.

The transfusion really perked Michael up for a while on Tuesday morning. He asked for more water, and for the first time since we had been at the hospital said he was hungry. He was able to eat part of a bagel and keep it down. He also talked more in about thirty minutes than he had the entire time we had been at the hospital up to that point. He even got on his tablet for a few minutes before deciding to go back to sleep. He also had both an ultrasound and echo on Tuesday morning.

Early Tuesday afternoon, our med student Ben stopped by for a visit. He informed us that the ultrasound had revealed fluid on Michael’s pancreas, but that it was not clear if the fluid was blood or excess fluid from what they had been pumping into him. I was informed that a CT scan of Michael’s pancreas had been scheduled for later that afternoon.

Later that afternoon, however, we met with two GI doctors, one of them whose specialty is the pancreas. He explained that the pancreas is kind of like a fluid-saturated sponge. Pancreatitis causes the sponge to be squeezed and leak out all of its fluids into the abdomen. Those fluids then inflame the surrounding organs including the small intestine and the colon. This inflammation is what caused all of Michael’s vomiting. The doctor told us that based on the ultrasound, Michael has a collection of fluids sitting on the left side of his abdomen. Over the course of the next several weeks, those fluids will either be reabsorbed by the body or have to be drained.

He did mention that there was a possibility that Michael’s pancreas was bleeding, but that the treatment for it was the same as it was for regular pancreatitis: lots of fluids over time while the body recovers. There were no obvious symptoms of internal bleeding other than Michael’s hemoglobin falling rapidly. Consequently, he did not see the need for a CT scan of Michael’s pancreas at the time but told me that he would be ordering an MRI on Michael’s pancreas and surrounding organs either at the end of the week, or, if we went home, sometime within the next few weeks via outpatient procedure. He seemed to indicate that we would be seeing him for appointments in the future. A few minutes after he and his partner left the room, Sarah got a phone call from Mott scheduling Michael’s first GI appointment.

That evening, Sarah arrived at the hospital to take my place. She brought dinner from Jimmy John’s, and we were able to spend a few hours together. She had come down for the day on Sunday but had been holding down the fort at home on Monday and Tuesday. Now she was relieving me of hospital my duties, so I could go home and get some church things done during the next few days. I left the hospital a little after 9:00 PM and arrived home around 11:00.

Wednesday morning I awoke to my phone ringing. “Did you know that Michael is having a tube put in to drain the fluid?” I could hear the concern in Sarah’s voice. In the team meeting the prior day a tube had been discussed as a possibility, but I had not heard that it was actually going to take place. The goal was for the Lasix to drain the fluid instead of having to put in a tube. But Michael had awakened that morning asking for breakfast only to be told that there were doctor’s orders that he was to have nothing to eat or drink by mouth. Those orders were in preparation for a drainage tube to be put in.

After a little more digging by Sarah, the orders were changed, and Michael was able to eat breakfast. Later that morning, Sarah met with the team. They were encouraged that Michael was wanting to eat and drink. They mentioned that the echo of his heart came back normal. There was still some fluid on his lungs, but the Lasix seemed to be working, as Michael was losing some of the water weight that he had gained and passed the same amount of fluid that they had pumped into him the previous day. His hemoglobin was still low, which led to his second transfusion to two days, but the doctors attributed the low hemoglobin to the large amount of fluids he was getting diluting his blood. Michael has not been in pain when he lays still for about a day now, and there were discussions about lowering his pain medication, as well as slightly lowering the amount of fluids that he was getting through the IV. At this point, it was just a waiting game while his body continued to recover.

On Wednesday afternoon, Michael spiked a fever that would eventually climb to 102.6. This sparked a flurry of blood tests, precautions and eventually both an MRI and a CT Scan of Michael’s abdomen. The primary concern was that Michael had developed a secondary infection. Michael’s temperature slowly dropped to normal levels later that evening and the precautions were lifted.

That night as I was putting him to bed, my youngest son asked me when we were all going to be sleeping at home again. That sparked a fifteen minute conversation about what was going on with Michael. I ultimately told him that the answer to his question depended on when Michael came home from the hospital. As we talked my heart broke again over how much my younger kid’s lives had been upended. It dawned on me that from the time I left for the emergency room early Saturday afternoon, I had not seen any of my other three kids in person until Wednesday afternoon. Our family was spread across three cities, and it was taking a toll on all of us.

Thursday morning I got the younger three kids to school, and then headed to the office for a few hours to take care of some church things. I left the office late morning and spent the next few hours running errands and getting ready to head back to the hospital.

That morning, the team told Sarah that they wanted to get a chest x-ray of Michael standing up. They were hoping to get a clearer picture of what was going on with his lungs. Following the chest x-ray, Sarah met with an infectious disease specialist who told her that he had reviewed all of the data and concluded that Michael’s fever the previous day was related to his pancreatitis and not a secondary infection. What a relief!

When the results of the chest x-ray came back, Sarah was informed that the fluid in Michael’s lungs had increased. Doctors estimated that he had a liter of fluid on his lungs and two liters in his abdomen. The decision was made to schedule a procedure for the following day to surgically insert a tube into Michael’s chest to drain the fluid off his lungs. Sarah was told that it would take 1 to 3 days to drain the fluid from Michael’s chest.

Later that afternoon I arrived at the hospital and spent a few minutes with Sarah, Michael, and Sarah’s dad who arrived a little before I did. Sarah eventually headed back to Midland to attend my oldest daughter’s spring concert. My father-in-law hung out for a while longer before heading home. A little later, Dr. Walling, Michael’s attending physician, (think team captain) stopped by for a visit.

She told us that she was confident that Michael’s pancreatitis was caused by the drug Calpeg. Calpeg and drugs within the same family have been used for decades to destroy leukemia. And it is known for being incredibly effective at doing so. However, the particular formulation of Calpeg that Michael had been give was a new “improved” version that was proving to be much more potent than previous formulations. Dr. Walling told us that a number of children who had been recently treated with this form of Calpeg had developed pancreatitis including a patient a few doors down from us. She also told us that the type that Michael had been given was the only type available from the pharmaceutical company at present. She told us that she was very strongly leaning towards taking Michael off Calpeg altogether. (He is currently scheduled to get several more doses of it over the next several months.) I told her that I couldn’t consent to giving Michael another dose of it. We both agreed that we could not keep doing something that was doing so much damage to Michael’s pancreas.

Dr. Walling told us that she expected Michael to go home on Sunday at the very earliest, and we began to discuss what the next week would look like. We made the decision to hold off on chemo for another week. We also discussed the possibility of skipping forward to the next course which is a much easier one than the one Michael is currently enduring. The thinking is that the recovery from pancreatitis lasts several weeks to a few months. During that time, Michael might benefit from drugs that take less of a toll on his body. However, we would still have to circle back and complete the second course at some point. Sarah and I were torn over what to do. We would prefer to get the nastiest drugs behind us, but don’t want to prolong Michael’s recovery.

On Friday, Michael began to turn a corner. His pain was down to a 2-3 and only when he moved around or took a deep breath. A chest x-ray showed that the Lasix were effective at draining the fluid off his lungs, and a drainage tube was not needed. Michael’s appetite also started to improve.

Over the course of the next few days, Michael continued to make progress in his recovery. The fluid on his chest continued to go down, and Michael’s appetite and energy slowly grew. He was able to completely come off the oxygen and the fluids over the weekend. Sarah was able to join us on Saturday and Sunday. It was a blessing to get 24 hours with her, even if it was in the hospital.

On Sunday, the team informed us that we could probably go home that day, but that they wanted us to come back and meet with Dr. Walling the following day. It didn’t make sense to us to drive all the way home that evening, only to turn around and come back the next morning. So, we made the decision to spend one more night at the hospital. Sarah drove home Sunday evening, and Michael and I watched the Pistons lose to the Knicks in a heartbreaker.

Monday morning, we were able to meet with Dr. Walling. She informed us that she had made the decision to take Michael off Calpeg completely. It was such a relief to know that he would not have to take that nasty drug again! Dr. Walling told us that based on all of Michael’s data and the way his cancer has responded so positively to the chemo, she was confident that we could continue his treatment without Calpeg and still rid him of his cancer. She also informed us that he was doing so well, that he could resume the chemo in his current course that day. However, he would be taking a temporary break from the Mercaptopurine as it is known to potentially make pancreatitis worse. We were released from the hospital that afternoon and made it home in time for dinner. It was such a blessing to sleep in our own beds again!

We were back in Ann Arbor on Thursday for a checkup, and all of Michael’s blood counts came back well. On Friday, Michael was able to come off his pain killers completely. Over the weekend his energy has increased significantly. We are so grateful for the many people who have been praying for him and the direct answers to prayer as Michael recovers.