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Luke G - Journal

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Posted 2018-02-20T18:32:00Z

Doing well...

All is well here.We ended up postponing the birthday week’s chemo so Luke could appropriately enjoy food over the weekend. His ANC was 2500 before chemo on Thursday, the highest it’s been without help from Neupogen injections in a long time. We’re hoping that the higher starting point, combined with dosage reductions on two of the chemo drugs will allow him to avoid neutropenia with this cycle. He was feeling normal after chemo that evening. He felt a little worse the next couple of days, but has felt better than he felt after any of the infusions last month.

Luke got a little unlucky with his drivers permit timing last week. The Secretary of State’s offices took a snow day last Friday, then there were Lincoln’s birthday closures on Saturday and Monday. I guess that’s what happens when you live in the land of Lincoln. Growing up in Indiana, I was always a little jealous that the Illinois kids didn’t have school on my (Lincoln’s) birthday. They do now, but didn't back then.[...]

Posted 2018-02-09T04:56:41Z

15...

My baby boy turned 15 today! We're so grateful that he's here and that he's doing so well.

Luke has been trying to pick a restaurant for his birthday dinner and a day/time that will work for all of us (including the very busy sister). He's always loved that his and my birthdays fall during Chicago restaurant week. The last few years, his choice was the delicious but now defunct Green Zebra. That was a no brainer for him. This year, he's had to broaden his horizons, and he's had a hard time making a choice. Chicago has so many good options! I think he's decided on Big Jones this Saturday or tomorrow (weather permitting).[...]

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

Home...

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.[...]

Posted 2017-12-18T02:55:00Z

Doing well...

The boy has been feeling really well!

In my ADNED post, I mentioned that the radiation oncologist was going to be looking at the recent scans. He texted me at 10:00 the next night to say that he was happy with the images and that he did NOT see any progression of disease. It was so nice of him to get in touch on a Friday night! The doctors are in agreement that Luke is NED. We're leaning toward trying the maintenance chemo, starting just after the first of the year. [...]

Posted 2017-12-01T03:00:00Z

ADNED?...

What a week it’s been, and it’s not even Friday! The last 24 hours have been quite a roller coaster ride, but I can now say that Luke is pretty likely NED or in Luke’s words ADNED (almost definitely No Evidence of Disease).[...]