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Posted 2016-10-25T03:28:28Z

Day 64...

Luke had a good day yesterday. It was another beautiful fall day, and he and Penny made the most of it -- dog party in the morning plus two nice walks with friends later in the day.. His little body was exhausted by evening. He ran out of steam while making his apple cinnamon cardamom bread (inspired by Chef Kendra). He really wanted to do it "all own self" as he used to say, but asked me to take over near the end. I think something went wrong in the exchange. The texture wasn't quite right. He had planned to bring it to the hospital, but decided to leave it at home.

Some friends came over with a great care package for him after dinner, and then he gave in and went to bed early. He slept through the dog party this morning. I peeked in his room at 8 and decided to take Penny on my own. When we got home, I peeked in again. He was still asleep so I ran out to get a few things that he wanted for the hospital. Remember the days when the kids were babies and you'd want so badly for them to sleep in a little, but when they did, you'd worry that something was wrong? That's what I felt like this morning. I was really uncomfortable while I was out and checked on him as soon as I got home. He was fine -- just kind of grouchy about having missed the dog party.

Speaking of the dog party, it was a dog party friend who made the #lukestrong cookies in the picture. Aren't they great? 

We had an 11:00 appointment in clinic this morning to get his port accessed and get fluids started. We can do all of that at the hospital, but he really likes and trusts the clinic nurses. Once we were settled in the hospital room, I picked up some Japanese food for the two of us for lunch.

Two of his favorite teachers from elementary school came to see him this afternoon. He was really happy to see them, and they're planning to get together again soon. I can't believe I didn't get a picture!

He's getting two new drugs this week -- Etoposide and Ifosfamide. Ifosfamide requires a couple of liters of prehydration, a minimum volume of urine output and a certain specific gravity of the urine before they can start, so the first drug didn't start going on board until 7 pm. Luke fell asleep about an hour after they started and is still asleep. The second drug is going in now.

I'm sitting in my bed hoping and praying that he sleeps well and that the side effects are mild. I'm missing Kate, Teddy (and Timo). Paul was here for a few hours so I'm not really missing him yet. Luke had a tough time saying goodbye to Penny this morning. That was hard to see. Boy does it stinks that he has to go through this.

Thank you all again for everything.



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Comments (8)

  • Kerry Hamill
    Kerry Hamill

    It stinks that you all have to go through this!!😠. You are doing an incredible job Amanda, and I'm so impressed at how Luke is handling everything. You guys stay strong! Kerry

    4 years ago · Reply
  • maddie murokh
    maddie murokh

    stay strong! you guys are doing amazing and i hope that all is well

    4 years ago · Reply
  • Beth engels
    Beth engels

    Lukestrong=OLPHstrong! Had mass with Pastor Boland this morning and a prayer service with ArchBishop Cupich this evening. Prayers 🙏🙏🙏 abound!

    4 years ago · Reply
  • Adams Family
    Adams Family

    Happy to hear Luke could enjoy the beautiful fall day yesterday! The cookies look amazing, I'd purchase those from a bake sale for sure! Although we haven't met we think of all of you daily and keep you in our prayers:) My oldest son (9) wears the gold laces in his soccer shoes to show his support. Sending positive thoughts and a good night sleep for Luke...and you:) The Adams

    4 years ago · Reply
  • Beatrice Yavenue
    Beatrice Yavenue

    Yes, it all does stink that he has to go through this. But thank the Lord he has this incredible fortitude & attitude. How you write & keep us updated combined with your strength & loving care really touch our hearts. Hope his night was good. I continue to keep Luke & the Gregory's in my prayers.

    4 years ago · Reply
  • Shirley Gebien
    Shirley Gebien

    Hoping all goes well for Luke this week. You are a great mom Amanda. Stay strong and we are keeping Luke and family in our thoughts and prayers.

    4 years ago · Reply
  • Josie Bordignon
    Josie Bordignon

    I am so sorry Luke is having to endure all of this! No child should. Luke's attitude is amazing to us. I pray Luke had a good night. All our prayers.

    4 years ago · Reply
  • Cindy Weickert
    Cindy Weickert

    Hope you both slept well last night. Sending prayers and happy thoughts.

    4 years ago · Reply