Connor's count continue to trend up. They've stopped the neupegen that helps him make WBC'S because he seems to be managing it on his own. He had two more nosebleeds last night, so they transfused another unit of platelets early this morning. Connor said he didn't sleep well because of the nosebleeds. He's tired, and still grumpy. PT came and got him walking again. He went down the hall, sat and rested, and then back. Then he sat in a chair for a while. Hry still won't eat. And won't drink much more than water or an apple juice. He says the pain is better, but he's still pressing the Dilaudid button pretty often, and not talking or eating. So he stays on the TPN and other IV supplements. They are starting treatment again Monday. He's already a week late. But they are going to skip methotrexate, and wait another 10 days for that one. He'll just get the Vincristine. Hopefully he'll eat something tomorrow so the chemo doesn't make him too n...
Connor's 12hr MTX is 52, so lower than last two times. His creatinine dropped to 0.67 which is excellent! Kidneys are working well. Next blood draw is at noon, and I'll update when I know anything. They will check his hemoglobin again, but anticipate giving him blood before he is discharged, but continuing to hold off as long as he remains asymptomatic. He's feeling pretty nauseous today, so he's added Ativan to the zofran and the ear patch. We got a bit of a rundown on the next phase. (Still have one more admission in the phase we're on). It adds back the Prednisone, but only every other week. PEG asperagenase (so Connor will get the alternative again) and several more spinal taps. It's a two month phase, but this is where ANC numbers drop and patients have the most transfusions, so it can stretch out longer as they wait for his body to recover. Hopefully no admissions, but lots of clinic visits. Long couple of months ahead. The clinic is working with the hos...
I first noticed the growth on Saturday night Sept 19, 2020. Connor had put on some weight during COVID and I think I thought he just had more of a double chin.... but looking back now - I see the lump on the right side of his face. This is Connor on the first day of school, two weeks earlier. I asked him about it, and he said - "yeah, it's been there for a while - I told Dad". I've been through a range of emotions on this but blame doesn't belong here - so I've moved on. No point in looking back. I felt the lump and it was hard to the touch, but it didn't hurt him. He had no fever, no pain, no other symptoms at all. Sept. 20 - Sunday morning we called the clinic and did a video call with the doctor. She said he needed to be seen right away, so we were there at noon when they opened. That doctor questioned why were at an urgent care clinic when it seemed chronic (because it began 3 weeks ago). I explained about the earlier call,...
Hope the day is restful and uneventful!
ReplyDeleteHopefully the last night. This one has been a haul.
ReplyDeleteSo close!! Fingers crossed for tomorrow. 🤞💕K/C/M/L
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