It's been 100 days since Luke started treatment. Sometimes it feels like it was yesterday and sometimes like it was 500 days ago. I still sometimes feel like I'm going to wake up from a dream.[...]
Luke G - Journal
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I can't believe I just typed day 99...
One of the hardest things about these hospital stays for Luke is saying goodbye to Penny and Kallie when we leave. He got clearance today for another Penny visit and is looking forward to that! He's thinking she should come right in the middle of the stay so he won't have to miss her for too long on either side of her visit.[...]
Luke has been feeling pretty well this week. The wake and the funeral were tiring for him, but he handled them very well.
This week's 5 day inpatient chemo was postponed a couple of weeks ago to allow us to enjoy the holiday. We just had a quick clinic visit yesterday. His blood counts were good, allowing us to relax about risk of illness and infection a little bit. The doctor also gave us the ok to stop the nightly Neupogen injections for now. That always makes Luke and Mom very happy.[...]
My little boy is such a trouper. It's about 11:00 and I just gave him his Neupogen shot and tucked him in.
We got to the hospital at 8 this morning for his transfusion. The smoothie fairy came by with some smoothies and stayed for a nice visit. As the nurse was about to connect the blood, she told Luke (and us) that she needed to stand next to him to monitor his blood pressure and to watch him for the first 15 minutes. She said he needed to let her know if he was feeling weird in any way. Luke asked, "weird how?" She said, "well, like itchy or if you feel like your throat is closing up." Yikes. When she said that, I could see a little panic dancing around in his head, but he calmed when she said that was very rare. Shortly after the blood started going in, he started shaking and feeling nauseous (not uncommon apparently). The nurse assured him that he'd feel better very soon, and he did.[...]
We're hanging in there. Luke has been feeling pretty well so far this week. He's been tired but hasn't wanted to say no to anything. We went shopping for clothes and to Whole Foods on Tuesday. We went to visit Grandma and Auntie Kristen and out for lunch yesterday. He went with Paul to Costco this morning. He also has been to the dog party in the mornings and has been taking Penny for late afternoon walks. This afternoon, he was looking paler, feeling more tired and "feeling my heart pumping in my head."[...]
Thank you for the thoughts, prayers, comments and messages after my post last night. We're missing Grandpa, but we're hanging in there.
Luke had an outpatient chemo dose today. He has such a great relationship with his nurses and doctors, so it's almost nice to go to clinic.[...]
My dad, Luke's Grandpa Dave, passed away unexpectedly yesterday afternoon.
We got a call from my mom saying that she had found him slumped over and that he had been taken by ambulance to the hospital. We got ready and jumped in the car to head to Northwest Indiana. I was worried about Luke's stamina and the ER germs, but it seemed right for him to come. About ten minutes into our drive, my sister called to say that he had not survived the trip to the hospital. We still rushed to the hospital to grieve together and to see Grandpa one more time.[...]
We got home around 2:00 this afternoon!
Luke wasn't feeling great today, but he's felt far worse, so we'll take it. After his reunion with Penny and Kallie, he had a little lunch, played some video games and then took Penny for a walk. After his walk, he fell asleep on the couch from about 5-7, woke up for a little election coverage, fell back asleep until 9, watched a little more election coverage and then went to bed for the night. His little body is beat. As I tucked him in, he said, "I can't believe I'm not going to be awake when we find out who the president is." I remember going to bed hugely pregnant in 2000 thinking the same thing, and we still didn't have a result when Kate came out a couple of weeks later.[...]
Welcome to the Luke G support family! This site is for family and friends, old and new, to organize our efforts to support this extraordinary person. This page will serve as your home base for rallying the troops, receiving updates to support Luke G. Here's the plan:
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