Leukemia Relapse! – How it happened

On Wednesday, June 11, we went up to the mountains for a family retreat. Thursday, all was normal. Derek played freeze tag and was active and energetic. Mid day on Thursday, I learned via text message that the son of a friend of mine had relapsed his leukemia. I was shocked and saddened, imagining what it must be like to face such news. 

Friday morning, June 13, Derek woke up saying his neck hurt a lot. I thought perhaps he had slept wrong in the motor home or was sore from playing tag the evening before. It hurt badly enough that he wanted Tylenol, which I gave him after breakfast. It did not seem to help much and the pain continued throughout the day. After lunch I gave him more Tylenol and again it didn’t seem to do much. He was not interested in playing tag and sat with me on the sidelines. I massaged it gently, but it didn’t seem to help.

During the Friday evening meeting, Derek felt a little warm, and by the end of the meeting, it was quite obvious he was running a fever.  We went to the motor home and took his temperature. It was 101.2. We were concerned it could be viral meningitis, and I called Derek’s doctor. She said to bring him in right away. So I collected our things and
Derek and I headed down the mountain for the hospital. We arrived around 11 p.m. and were taken right away to a private room in the emergency department. They drew labs and debated about whether to do a lumbar puncture which is the only way to conclusively diagnose meningitis. They did a CT of his neck and we waited. About 3:30 a.m. the next morning, the ER doctor came in and informed me that there were 10% blasts on the smear, and he believed that Derek’s leukemia had relapsed. I couldn’t believe it! First my friend, and now Derek, relapsing only two days apart! The CT showed a mass in his neck like an abscess. Derek’s oncologist told me it could be an infection, but that it also could be a mass of leukemic cells in his neck which would indicate relapse. She said she didn’t usually hope for an infection in her patients, but this time she did, because the alternative was worse.  The oncology team decided to do a bone marrow aspiration and LP the afternoon of the 14th. Derek went into the procedures and we waited. When he was finished, the nurse practitioner told us that perhaps it was just an infection. But neither of us felt it was an infection, and by morning, the bone marrow had confirmed our fears. Derek’s leukemia had relapsed. Once again, he had gone from seemingly normal one day to fighting for his life the next.

So we have begun a new phase of Derek’s leukemia treatment. They tried a new-to-Derek regimen of chemotherapy drugs that made him critically ill. He developed severe typhlitis, sepsis, and lung problems. Fortunately they prevented septic shock, and he recovered. The goal was to get him back into remission so they could perform a stem cell transplant.  However, his minimal residual disease (MRD) was still relatively high, so they tried another round of different chemotherapies which brought his MRD down further, but didn’t eradicate it.  His leukemia is very aggressive.  After a third round of still different chemotherapy drugs, his MRD is low enough they will attempt a stem cell transplant on September 9.  A matched (9/10) unrelated donor has been found and Derek has gone through grueling days of testing and preparation for the transplant. We remain hopeful and trust God for the future.