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Luke G - Journal

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Posted 2017-11-14T03:35:21Z

Doing well...

Luke did not end up having late side effects from his last 5 day chemo. He had 6 weeks of irinotecan throughout the protocol, and this was by far the best he’s ever done! On Thursday and Friday after school, he and a friend went out to “paper” a neighborhood with flyers for the GBS canned food drive. On Saturday, they went around picking up the donations. Saturday night, he and Paul went to the Northwestern football game (and didn’t take even one picture). Yesterday, he was out picking up other donations with a bigger group of student council kids.[...]

Posted 2017-11-04T03:57:57Z

Day 441...

Monday was Luke's first day of his last scheduled 5 day chemo treatment. Today was his last day of his last scheduled 5 day chemo treatment. The protocol isn’t officially over until after the end of treatment scans in a few weeks, but after a quick vincristine treatment on Monday, he’ll be done with his scheduled chemo.[...]

Posted 2017-10-25T17:11:24Z

Day 430...

Luke is doing well. He had a great time at homecoming! His stomach wasn’t feeling great as he was getting ready, but he said it was fine as soon as he got to pictures (normal nerves, maybe?). He and I both figured he might end his night early -- I guess he did compared to a lot of kids, but I was pretty impressed that he stayed out until midnight.[...]

Posted 2017-10-20T19:52:00Z

Day 425...

Just a quick update since it’s been a while.

Luke’s chemo went pretty well last week. The home nurse didn’t have any after-school appointments, so he had to miss a couple of hours of school each day for his infusions. He had some nausea, but was able to manage it with medication. On Friday afternoon, he said, “I’m feeling a lot better than I expected to be at this point.” The previous times he had irinotecan, the later side effects had kicked in by Friday. When they hadn’t kicked in by Sunday night, we cautiously thought maybe they had passed him by this time. No such luck. Some symptoms started Monday morning, and Tuesday was kind of rough for him. The rest of the mornings this week have been a little rocky, but fortunately, he’s felt much better after a couple of hours. [...]

Posted 2017-10-10T23:49:00Z

Day 415...

After a beautiful weekend and a nice 3 week break from chemo, it was back to business yesterday. Luke’s on week 47 on the protocol, which calls for one dose of vincristine on Monday and 5 doses of irinotecan (Monday-Friday). Luke had these drugs during weeks 1, 4, 20 and 23, and he'll also have them during week 50. Week 23 was back in February during radiation. Before we went to clinic yesterday, Luke made homemade applesauce from farmers market apples. Good thing, since it ended up being the only thing he ate after chemo. He had a weird reaction during one of his pre-chemo anti-nausea drug infusions, so they stopped the infusion quickly and didn't allow him to have that drug. It’s a pretty effective drug, so that’s a bit of a bummer. He really wasn’t feeling great last night, but he was remarkably chipper anyway.[...]

Posted 2017-10-07T00:10:00Z

Day 411....

Luke has been doing really well. With all of the sadness in the world lately, I’ve just had a hard time writing about our little goings on.

He’s been going to school, farmers markets and volleyball games, running, walking Penny and eating well. He’s looking forward to Homecoming in two weeks. Last Saturday, he ran in a cross country meet, went to the farmers market, worked at Abt and then had a great time at the fundraiser/party at Play and Spin. When we left for the party, he said, “we’re going to stay for about an hour, right?” He ended up having a great time with friends and adults and staying there for about 5 hours. In the cross country meet, he beat his previous time by a minute and a half![...]

Posted 2017-09-25T03:07:00Z

Doing well...

Aside from having to leave school early on Wednesday because of a bloody nose which earned him a platelet transfusion, Luke has been doing really well. We’ve been fortunate to be able to have lots of pool time on these hot fall days.[...]

Posted 2017-09-19T22:39:06Z

Day 394...

Luke wasn’t feeling great in the days after Thursday's chemo, but he powered through anyway. He was nauseous and tired, but he ate better than he did the other three times he had these drugs. He said he wasn’t feeling like eating, but that he was giving it a shot. I don’t think eating really helped him feel any better, but it didn’t seem to make him feel any worse either. It must be better for his strength and weight though![...]