Nico made counts today and we will be admitted tomorrow morning for his next round of high dose Methotrexate. He does not need a lumbar puncture this time around, so that is a bonus.
It is a strange to feel “relieved” that your child is going to get pumped full of chemo, but delays are more stressful than chemo (at least for us). So, we feel some weight lifted off of our shoulders.
I try not to freak out in this journal, or at least I try to minimize it when I am freaking out, but a slow responding neutrophil count can suggest relapse. So even though we had a normal bone marrow aspiration just weeks prior, I felt the weight of the world on my shoulders the last few days. Luckily, I am on an ALL listserv (that I so frequently mention) and I can freak out on there. I did so, and I got some really great information and reassurance. First, several parents warned me that the antibiotic (Septra) that almost all the leukemia kids take twice a week can lower neutrophil counts. Some kids are especially sensitive to it, and these parents told me to “get him off that!” I emailed our oncologist, who has some reservations about switching to another antibiotic, but he was comfortable allowing me to skip this week’s dose. Well, lo and behold, Nico’s neutrophil count went from 400 to 1200 in three days. It might just be a coincidence, but maybe it’s not. Our oncologist suggested that we discuss the pros and cons in person. So I will update the conclusion later.
One woman, whose child, like Nico, also had delays and reductions in chemo, pinpointed exactly where my anxieties lay. She wrote: I know you know this intellectually, but just wanted you to hear that many children have been in the same position before -- when chemo must be reduced due to sensitivities -- and have maintained long term remissions. I was really grateful for the listserv, the other parents and the Internet! I cannot imagine what it would be like to go through this without communicating with other parents who have walked in these shoes.
With much gratitude,
Shannon
PS – Please keep us in your hearts and thoughts these next few days.
It is a strange to feel “relieved” that your child is going to get pumped full of chemo, but delays are more stressful than chemo (at least for us). So, we feel some weight lifted off of our shoulders.
I try not to freak out in this journal, or at least I try to minimize it when I am freaking out, but a slow responding neutrophil count can suggest relapse. So even though we had a normal bone marrow aspiration just weeks prior, I felt the weight of the world on my shoulders the last few days. Luckily, I am on an ALL listserv (that I so frequently mention) and I can freak out on there. I did so, and I got some really great information and reassurance. First, several parents warned me that the antibiotic (Septra) that almost all the leukemia kids take twice a week can lower neutrophil counts. Some kids are especially sensitive to it, and these parents told me to “get him off that!” I emailed our oncologist, who has some reservations about switching to another antibiotic, but he was comfortable allowing me to skip this week’s dose. Well, lo and behold, Nico’s neutrophil count went from 400 to 1200 in three days. It might just be a coincidence, but maybe it’s not. Our oncologist suggested that we discuss the pros and cons in person. So I will update the conclusion later.
One woman, whose child, like Nico, also had delays and reductions in chemo, pinpointed exactly where my anxieties lay. She wrote: I know you know this intellectually, but just wanted you to hear that many children have been in the same position before -- when chemo must be reduced due to sensitivities -- and have maintained long term remissions. I was really grateful for the listserv, the other parents and the Internet! I cannot imagine what it would be like to go through this without communicating with other parents who have walked in these shoes.
With much gratitude,
Shannon
PS – Please keep us in your hearts and thoughts these next few days.
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