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Luke G - Journal

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Posted 2018-01-30T03:40:34Z


We're home!

The doctor said this morning that if Luke was fever free though the afternoon, we could be home in time for dinner. He was true to his word. We were discharged at 5:00, and Luke was reunited with Penny and Kallie before 5:30. We're looking forward to some good sleep in our own beds tonight. I'm pretty sure I'll be up to feel his head, but I bet it'll still be better than hospital sleep.[...]

Posted 2018-01-28T18:23:00Z

Day 526...

I hadn’t looked at the number of days for a while. I think it’s been 526 days since Luke started chemo.

It had been 8 ½ month since his last inpatient hospital stay, but that streak ended Friday. He called from the school nurse’s office with a temp of 100.3, headache, aches and a sore throat on Thursday afternoon and asked me to call the doctor to see if he could finish the school day. We had an appointment scheduled after school for counts, but the nurse said we should head over right away. They drew a bunch of blood for counts and cultures, did a strep test and a full respiratory panel (which includes flu). His ANC came back at zero. Since his temp didn’t hit the go straight to the hospital level of 100.4 or above while we were there, they let us go home with instructions to monitor and call if the temp went above 100.3.[...]

Posted 2018-01-16T21:07:00Z

Doing pretty well...

Luke is doing pretty well. He’s reaching another milestone as I write this -- taking his first set of high school finals!

He has two sets of maintenance chemo infusions on board. He didn’t love the way he felt for about 48 hours after both of the infusions. We’re hoping his body will adjust and that they’ll get easier. At least there’s one week each month with no infusions. I’m thankful that Luke is willing to give it a shot, but I feel bad that he’s already questioning whether it’s worth it. Feeling unwell for a couple of days sounds manageable until you realize it adds up to 6 days a month or 20% of the time. We’re also wishing it didn’t affect his counts/immune system. He likely won’t get extremely neutropenic from the maintenance chemo, but his ANC will still be much lower than normal. Having to worry about germs (especially during this year’s flu season) isn’t much fun. We’ll just keep weighing and balancing the different concerns - chemo side effects, germs, cancer...[...]

Posted 2018-01-05T18:00:02Z

Happy New Year!

Our trip was amazing, and we're so grateful to have been able to go! More on that soon.

Luke got his first doses of maintenance chemo yesterday. He has been feeling very, very well lately, so I was feeling a little sick about putting more poisons into his body. I feel like it might be a little easier if there were a clear, “if you do this, Luke’s odds will improve dramatically.” Luke, of course, has read the same research as we have. He agrees that it makes sense to give it a shot, but we've told him that he can stop if he doesn't feel as well as he'd hope.[...]