CALPEG Strikes Again

This last week has been a whirlwind. Michael had an appointment at Ann Arbor on Monday at 8:15. I had not wanted to get a hotel on the evening of Easter Sunday, so we left for Ann Abor at approximately 5:45 AM. Michael had been off chemo for the previous two weeks while we waited for blood counts, specifically his ANC to come up. We made it on time, got Michael’s port accessed and blood drawn without incident. At the doctor’s appointment, we were told that he had made numbers and that we would be starting the second half of his second course of chemo that day. We were honestly excited simply because we want to get this nasty course of chemo over with.

The chemo regimen for this week included Cytoxan and Cytarabine in infusion and then Mercaptopurine orally for the rest of the week. Additionally, I gave Michael a Cytarabine injection each day Tuesday through Thursday. This was not our first rodeo with these drugs, and when Michael had been on them previously, he had a pretty good week. As we started the second half of the course, we looked forward to what we thought would be two relatively easy weeks, and then one very difficult week, followed by an easier week to recover. That was not to be the case this time around.

Tuesday was an absolutely crazy day for me with work and personal commitments. Michael also had a physical therapy session that day to work on his core strength and to address the pain that he has been having in knees recently. In my preoccupation with other things, I forgot to keep track of Michael’s fluid intake on Tuesday. This would come back to bite us the next day. Michael is supposed to be drinking 2 to 2.5 liters of fluid a day to help flush the toxins from the chemo out of his system. Getting Michael to consume this large a quantity of fluids has been a real challenge, because we have to convince him to drink when he’s not thirsty. I don’t think he drank anywhere close the required amount on Tuesday.

Wednesday morning, Michael woke up not feeling well. He was experiencing all of the symptoms of low hemoglobin. This was surprising to me, because he had not struggled with low hemoglobin when he was on these particular drugs previously. I called the clinic at Mott, and they told me to bring him in. So off to Ann Arbor we went. When we got to infusion, they did his blood work and determined that his hemoglobin was actually up compared to Monday. It was determined that he was dehydrated. Consequently, he was given fluids and anti-nausea medicine and began feeling much better. We went home recommitted to making sure he got his proper fluid intake.

On Thursday, Michael and I were blessed with very generous gift from an incredible individual. Thank you so much for being such a blessing to us. You know who you are. We stayed on top of Michael’s fluids and had no issues with his health.

Friday was relatively uneventful for Michael. He kept pushing fluids and seemed to be doing well. My sister from Colorado had flown in the night before to spend some time with family. She and I went out for brunch on Friday, and spent some time catching up. My parents and siblings all seem to be going through difficult trials right now. And my sister just wanted to be with us for a few days. The plan was for her and my parents to join us for dinner on Saturday.

Saturday everything changed. Michael woke up complaining about pain in his back. I didn’t think much of it because he has been working on strengthening his core in physical therapy and I chalked it up to muscle soreness. Michael ate breakfast, and took his medication for the morning, and immediately began complaining about stomach pain. We had just given him anti-nausea medicine, so we waited a while for that to kick in. An hour later I found him curled up in the fetal position on his bed continuing to complain about stomach pain. We gave him a breakthrough anti-nausea med designed to help relieve his symptoms when his regular anti-nausea meds aren’t enough. An hour later nothing had changed, so I decided to call the clinic at Mott. I got ahold of the answering service and left a message for the doctor on call.

The doctor called me a few minutes later, and I crawled into bed with Michael and put him on speaker phone with the doctor. As Michael described the location and type of pain to the doctor, the doctor said it sounded like Michael’s pancreas was the culprit. He was a little surprised because the only drug that Michael has been on that is known to cause pancreatitis is CALPEG. I have come to hate that drug with a vengeance. The doctor told me to get Michael to a local emergency room. We settled on Covenant in Saginaw because they have a children’s hospital and would be more familiar with pediatric issues. The doctor told us that he would call ahead, let them know we were coming, and ask them to do blood work and get a CT scan of Michael’s pancreas.

When I got Michael to the Emergency Room, he requested a wheel chair. When I went to get the wheelchair the security guard at the front door told me that he would take Michael to the check-in desk while I parked my vehicle. I got Michael handed off to the security guard and parked. When I got back to the lobby area, Michael was GONE. As I approached the check-in desk a nurse must have seen the panic in my face and came up to me and asked if I was the dad of the boy in the wheelchair. To their credit, Covenant was expecting Michael and was ready for him. He was already back in a triage room within minutes of showing up at the door. We were reunited without further incident and very quickly taken to an exam room. After several hours of tests and waiting, it was determined that Michael did in fact have pancreatitis.

Michael and I were taken by ambulance to the emergency room at Mott Children's Hospital in Ann Arbor. He was evaluated and confirmed to have pancreatitis. Shortly after the nurse stepped out of the room, Michael informed me that he was feeling nauseated. As I opened the door to find the nurse, I heard Michael’s vomit hit the floor behind me. Over the course of the night, I lost track of the number of times that he threw up. At some time, the next morning, there was blood in his vomit. After thoroughly examining him, doctors believe it was due to irritation in his GI tract due to the excessive vomiting. We were finally able to get it under control with an acid blocker and anti-nausea meds sometime on Sunday morning.

Michael slept most of the day Sunday. He has been in almost constant pain since Saturday morning. As of Monday afternoon, the nausea comes and goes, but he has not been able to eat or drink since Saturday morning. He is incredibly weak and the sickest that I have ever seen him.

In my discussions with the doctors, it has come out that pancreatitis is a known side effect of CALPEG. This is the drug that had Michael passing out in my arms the first time he took it and caused three trips to Ann Arbor in a week the second time. It’s been almost a month since he has taken it, yet, according to the doctors it is not unusual for pancreatitis to flare up even a month after taking CALPEG. We are taking this week off of chemo. But Michael is scheduled to get CALPEG again a few weeks from now. We had been looking forward to getting that over with. Now we will be having serious conversations with Michael’s doctors before we continue with this drug. One of the doctors told me that CALPEG is known for being one of the best drugs for fighting leukemia and ensuring that it doesn’t come back. And herein lies the dilemma. Do we quit having Michael take this drug because of its side effects and risk having his leukemia come back? I am hoping that there is a way to get through the CALPEG while mitigating the risk of the horrible side effects. Pancreatitis is awful!

Michael’s illness is taking a toll on the rest of the family. My other kids’ lives have been repeatedly upended by Michael’s cancer. My youngest was in tears at school today, hurting for her older brother. It’s hard for them to understand everything that is going on. All they know is that at any time Michael could be taken to the hospital, and they will consequently be shuttled to a family member’s house for an undetermined amount of time. During that time, they won’t see much of either their mommy or their daddy, whichever one is with Michael. And I think that at times they fear the worst for Michael.

I was reminded this morning of some verses that have become my prayer today: “Hear my cry, O God, attend unto my prayer. From the end of the earth will I cry unto thee, when my heart is overwhelmed: lead me to the rock that is higher than I” – Psalm 61:1-2.