On the last clinic visit, after two weeks at 150% of both Methotrexate and 6MP, Nico’s neutrophil count was over 3,000. This is within the normal range, and not what we expected (or want) for a kid at these doses of chemotherapy. We were fairly surprised. Jeff had balked at the idea of increasing his doses based on his last blood counts, and we were very worried that his counts would tank again. Not only did his counts not drop, they were higher. So the plan was to then wait for the results of Nico’s latest metabolite test, and we were pretty certain that his results would be skewed to the liver toxic, non-therapeutic metabolite based on his rising liver function tests and symptoms.
The metabolite results seemed to take forever. This was due, in part, to a computer glitch. While we waited, Jeff and I decided that we want Nico to pull out of his current clinical trial in favor of using Allopurinol in an effort to shunt his metabolism to the desired pathway. It was not an easy decision to reach, but we were both very nervous with his last set of numbers.
While the wait continued, Nico started to develop mouth sores. At first they looked like the chronic sores that he gets at least once a month. But the sores started to look more like blisters, and I became worried. I sent a picture of his mouth to his doctors and stressed that we were anxious about his metabolite levels. I also explained Nico’s pattern of developing hypoglycemia at these doses. Nico was waking up two times per night to request milk and acting like he had low blood sugar. We were all exhausted.
The metabolite results finally appeared on the same day as these blisters became an obvious issue. Our primary oncologist called me and told me to take Nico off all of his medications. We discussed the direction that we wanted to go, and everyone agreed that Nico’s counts were just too high. Jeff and I felt an urgent need to suppress his counts. So the plan was to let Nico’s liver recover for a week, clear some of these bad metabolites out of his body, and then restart the chemo at a lower dose and in conjunction with this new medication. As we got off the phone, our oncologist said something like: and we’ll just hope he does not get a virus before then.
Three days later was Thanksgiving. I thought that Nico was unusually well behaved at dinner, and patted myself on the back. In fact, he was just seriously dehydrated, anemic and neutropenic. His fever was 103 by the time we reached the ER. He needed a blood transfusion, and once again we find ourselves isolated in a hospital room while we wait for his bone marrow to recover.
This is our third day in the hospital. Nico seems to feel a lot better since he received blood. But his lips are ripped up. He looks very, very similar to how he looked the last time we tried these doses and then developed hand-foot-and-mouth disease. I am not convinced these symptoms are from viruses anymore. I will not agree to increase his doses to 150% again. I am not sure how we will navigate the road back. We obviously cannot start chemo again until his counts recover. Nico’s neutrophil count is 40 (with one zero). I will update the journal when we know.
I guess we knew that after almost three years now, we would be limping to the finish line. These last few months have been rough. At some point Nico decided he was just not going to speak to any of us anymore. He stopped speaking to us, to nurses, to doctors, to anyone. He ignored everything anyone said to him. He has never reacted like this, so I became concerned and mentioned it to my mother. Her explanation made sense to me. “It’s okay. Helps him cope. I don’t blame him. If he knew how, he would flip a bird.”
Signing off with the middle finger salute to leukemia.
The metabolite results seemed to take forever. This was due, in part, to a computer glitch. While we waited, Jeff and I decided that we want Nico to pull out of his current clinical trial in favor of using Allopurinol in an effort to shunt his metabolism to the desired pathway. It was not an easy decision to reach, but we were both very nervous with his last set of numbers.
While the wait continued, Nico started to develop mouth sores. At first they looked like the chronic sores that he gets at least once a month. But the sores started to look more like blisters, and I became worried. I sent a picture of his mouth to his doctors and stressed that we were anxious about his metabolite levels. I also explained Nico’s pattern of developing hypoglycemia at these doses. Nico was waking up two times per night to request milk and acting like he had low blood sugar. We were all exhausted.
The metabolite results finally appeared on the same day as these blisters became an obvious issue. Our primary oncologist called me and told me to take Nico off all of his medications. We discussed the direction that we wanted to go, and everyone agreed that Nico’s counts were just too high. Jeff and I felt an urgent need to suppress his counts. So the plan was to let Nico’s liver recover for a week, clear some of these bad metabolites out of his body, and then restart the chemo at a lower dose and in conjunction with this new medication. As we got off the phone, our oncologist said something like: and we’ll just hope he does not get a virus before then.
Three days later was Thanksgiving. I thought that Nico was unusually well behaved at dinner, and patted myself on the back. In fact, he was just seriously dehydrated, anemic and neutropenic. His fever was 103 by the time we reached the ER. He needed a blood transfusion, and once again we find ourselves isolated in a hospital room while we wait for his bone marrow to recover.
This is our third day in the hospital. Nico seems to feel a lot better since he received blood. But his lips are ripped up. He looks very, very similar to how he looked the last time we tried these doses and then developed hand-foot-and-mouth disease. I am not convinced these symptoms are from viruses anymore. I will not agree to increase his doses to 150% again. I am not sure how we will navigate the road back. We obviously cannot start chemo again until his counts recover. Nico’s neutrophil count is 40 (with one zero). I will update the journal when we know.
I guess we knew that after almost three years now, we would be limping to the finish line. These last few months have been rough. At some point Nico decided he was just not going to speak to any of us anymore. He stopped speaking to us, to nurses, to doctors, to anyone. He ignored everything anyone said to him. He has never reacted like this, so I became concerned and mentioned it to my mother. Her explanation made sense to me. “It’s okay. Helps him cope. I don’t blame him. If he knew how, he would flip a bird.”
Signing off with the middle finger salute to leukemia.
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