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Luke G - Journal

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Posted 2017-06-30T03:34:58Z

Day 311...

It's been a while since I put a day number on a post. Hard to believe we're past 300. 

Today's menu:
a protein drink, three poached eggs, two noodles, a piece of broccoli, a strawberry, some Cheerios and a little vanilla ice cream. I think that's a bit more than he had yesterday. He's looking skinnier to me already. He hasn't thrown up, but he feels really nauseous and nothing tastes good.[...]

Posted 2017-06-28T04:13:54Z

Back at it...

What a difference a day makes -- from beaches, pools, amusement parks and volleyball to nurses, doctors, IVs and chemo. I’m so thankful that Luke and I were able to have a fun getaway, but it was a little rough getting back to reality on Monday morning.[...]

Posted 2017-06-25T02:44:07Z

Still here...

We're still having a great time in Florida! Luke hasn't gotten around to writing another post, so I thought I'd check in.

His stamina and appetite have been really amazing, and he seems to be pretty good luck for Kate's volleyball team. They've been fun to watch![...]

Posted 2017-06-22T02:28:46Z

Florida (part 1)...

Hello there. It's Luke with an update from Florida.

When my mom woke up at 4:25 yesterday for our 6:30 flight, she had a notification that our flight was delayed until 9:30. The birds woke me up right around the same time, and when I went into her room, she told me I could go back to sleep because our flight was delayed 3 hours.[...]

Posted 2017-06-19T19:48:39Z

Quick update...

Brain MRI was clear, CT was clear! We’re still waiting for the foot MRI report. They like to have the same radiologist read those from one scan to the next, so they’re thinking that’s the cause of the delay. There’s no reason to believe it won’t look good since the PET showed no activity, but it will be interesting to see what’s still inside there after all of the chemo and radiation.[...]

Posted 2017-06-19T04:14:00Z

Happy Father's Day...

Happy Father’s Day to the dads who are reading this and to the wonderful dad (and husband) in our house! Love you, Paul!

Luke has been feeling great the last few days. For lunch on Thursday, he and I went to River Valley Farmer’s Table restaurant in Chicago. We’ve bought many mushrooms from River Valley at farmers markets, and a friend had recommended the restaurant as well as the River Valley Ranch farm in Wisconsin. Luke is a huge mushroom lover, so we’ll have to hit the farm sometime too. Lunch was really good. We started with the assorted pickled veggies (green beans, asparagus, beets, mushrooms, cucumber, cabbage). It was between that and the fried mushroom, fried pickle, fried cheese curd combo. No surprise that Luke picked the healthier option. Luke ordered the buckwheat and blue corn pancakes, and I had the portobello benedict.[...]

Posted 2017-06-15T03:48:46Z


PET scan this morning was clear! Last time, left foot still was lighting up a little, but nothing lit up today.

PET can't really evaluate head, and CT apparently is best for the lungs, so he'll still need the CT of chest and abdomen and the MRIs of the head and the foot (always MRI for primary site) on Friday. Today's PET news points toward good results on Friday too. Rhabdo is a beast, but it's so great to be able to put aside our fears for now and be thankful for the good news.[...]

Posted 2017-06-13T14:20:42Z

Feeling better (from Luke)...

Written last night but mom was sleeping when he finished writing...

Hello, it's Luke.
I just wanted to do a quick update to let everyone know how I'm doing. I'm feeling a lot better than I have been since Friday. No weak feeling, no aches, no chills or elevated temperature, more energy, and just generally feeling happier.[...]

Posted 2017-06-12T14:29:09Z

Just ok...

I've heard there was a glitch with last night's post, so I'm trying again...

Luke's fever has stayed away, but he's still not feeling great -- better, but not great. His ear feels pretty good, but he feels chilled, weak and his head has been throbbing. He's due to have his counts checked again on Wednesday, but we're thinking we might ask to have them checked tomorrow since those are symptoms of low hemoglobin. Of course, they could just be symptoms of whatever sickness or infection he is fighting. This week is scan week with no chemo, so we've been looking forward to him feeling well and being able to have some fun. I sure hope that works out! He's having a PET scan on Wednesday and 2 MRIs and a CT on Friday. I'm hoping that having Friday afternoon tests doesn't mean having to wait until Monday for results.[...]

Posted 2017-06-10T03:52:00Z

Impressive boy...

Luke has been doing pretty well since graduation.

Tuesday morning, he took Penny to the dog party and then spent some time playing at the park his 15 month old little buddy. They’re so cute together! After his vincristine at clinic, we had a nice outdoor lunch at Whole Foods and then he picked some healthy foods to cook and eat.[...]