ALL Day-to-Day
Since I got to maintenance, I haven't discussed chemo much, and I usually describe it as 'low-level' chemo. It's so much easier than induction chemo and the chemo you need for solid tumors that I don't want to talk about it much. People see Zane running around and discuss the Leukemia as a thing of the past.
We have finished three of the twelve twelve-week cycles. This is what goes on during those cycles:
Zane takes all these meds as pills that are covered in strawberry syrup, crushed (usually in that order because otherwise you might inhale these, and they're eseentially low-level poison) mixed with a little water and sucked up into an oral syringe. Lately, I only administer half the mercaptipurine and two or three of the dex shots. avatra does everything else except IV and surgery.
Mercaptipurine One pill a night. No food for two hours before or one hour after taking the medicine. That's practically very tough. We used to do the pill just before bed, but if Zane doesn't eat pretty soon after he gets home, we have to put him to bed without dinner, which is harsh. Lately we prefer to give him mercaptipur right after we pick him up from day care and then feed him after an hour has passed.
Since you can't eat in front of a hungry child you're not permitting to eat, sometimes we dash into another room and stuff a slice of bread or a granola bar into our mouth before Zane catches up.
Methotrexate (oral) Six tiny pills once a week.
Sulfatrim Liquid, twice a day, three times a week.
Dexamethasone One pill, twice a day for five days in a row, every four weeks. It tastes terrible, makes sleep very spotty (we discovered last time that Zane sleeps a little better if he gets the Dex early), causes ravenous hunger, weakness and mood swings. It's way, way better than it was during induction, though.
Vincristine Administered by IV every four weeks. Causes muscle weakness and nerve problems in the limbs.
Methotrexate (spinal) Administered by spinal tap every twelve weeks. Causes dry skin, muscle weakness, constipation, loss of manual dexterity and possibly learning disabilities.
Physical Therapy Once a week Zane goes into physical therapy for an hour. Zane has shown remarkable improvement, but the physical therapist fears that he's not going to catch up during chemo. The vincristine and methotrexate have ongoing effects. This is bad news because our insurance covers about half a year's sessions.
Clinic Visit Once every two weeks, Zane goes in for a checkup. They draw blood and look him over. Every other visit, they give him vincristine. Every six visits, they give him a methotrexate spinal tap as mentioned above. These can be short (if there's nothing to be done and the medical gods are with us) or long (if they're administering chemo or they make us wait).
Biopsy Every six months, they take a bone marrow sample from Zane's hip to see if there's any leukemia cells. Usually, there isn't. That doesn't mean that Zane's clear, just that there are too few cancer cells to show up on that biopsy.
We have finished three of the twelve twelve-week cycles. This is what goes on during those cycles:
Zane takes all these meds as pills that are covered in strawberry syrup, crushed (usually in that order because otherwise you might inhale these, and they're eseentially low-level poison) mixed with a little water and sucked up into an oral syringe. Lately, I only administer half the mercaptipurine and two or three of the dex shots. avatra does everything else except IV and surgery.
Mercaptipurine One pill a night. No food for two hours before or one hour after taking the medicine. That's practically very tough. We used to do the pill just before bed, but if Zane doesn't eat pretty soon after he gets home, we have to put him to bed without dinner, which is harsh. Lately we prefer to give him mercaptipur right after we pick him up from day care and then feed him after an hour has passed.
Since you can't eat in front of a hungry child you're not permitting to eat, sometimes we dash into another room and stuff a slice of bread or a granola bar into our mouth before Zane catches up.
Methotrexate (oral) Six tiny pills once a week.
Sulfatrim Liquid, twice a day, three times a week.
Dexamethasone One pill, twice a day for five days in a row, every four weeks. It tastes terrible, makes sleep very spotty (we discovered last time that Zane sleeps a little better if he gets the Dex early), causes ravenous hunger, weakness and mood swings. It's way, way better than it was during induction, though.
Vincristine Administered by IV every four weeks. Causes muscle weakness and nerve problems in the limbs.
Methotrexate (spinal) Administered by spinal tap every twelve weeks. Causes dry skin, muscle weakness, constipation, loss of manual dexterity and possibly learning disabilities.
Physical Therapy Once a week Zane goes into physical therapy for an hour. Zane has shown remarkable improvement, but the physical therapist fears that he's not going to catch up during chemo. The vincristine and methotrexate have ongoing effects. This is bad news because our insurance covers about half a year's sessions.
Clinic Visit Once every two weeks, Zane goes in for a checkup. They draw blood and look him over. Every other visit, they give him vincristine. Every six visits, they give him a methotrexate spinal tap as mentioned above. These can be short (if there's nothing to be done and the medical gods are with us) or long (if they're administering chemo or they make us wait).
Biopsy Every six months, they take a bone marrow sample from Zane's hip to see if there's any leukemia cells. Usually, there isn't. That doesn't mean that Zane's clear, just that there are too few cancer cells to show up on that biopsy.