Another Day of Ups and Downs

Special prayer tonight: that God would miraculously give Lucy an appetite.  If she does not starting eating and drinking she will have to go on special food given by IV or a feeding button.  I really don't want that, but I also don't want to spend the next 6 months fighting with her everyday. 

After a day off of hospital duty, Erik was back with me today for weekly doctor appointments.  We met with Dr. K, our Radiologist, and I really wanted him to be there with me.  It was a very sobering visit and I was so glad I did not have to do it alone.  He showed us Lucy's MRIs.  It was the first time we really got to see what we are dealing with.  We knew there were tumors left, but seeing really is believing.  I think somewhere deep within I wanted to convince myself they weren't really there.  But they are and her fight has just begun.  Day 4 of RT went well.  She is so good with the doctors.  Today she just sat up on the table and watched Scooby Doo while they did her Anesthesiology workup and then handed over her DS without any fuss when it was time to go to sleep.  She gave Erik and I a kiss and then she was out.  It is getting easier to stomach this whole process but I still leave with knots each time. 

So, we left our appointment with Dr. K feeling as if we had been kicked in the gut and I was crying (which is fairly normal for me these days).  We headed over to Dr. W's, our oncologist, for our 2-3 times a week check up.  She took Lucy off of two of her medicines--high fives all around.  Then she told us about the Magic Pump.  Basically we will not have to wake up all night to give her meds.  Another round of high-fives.  Literally.  We had the nurses and Dr. W laughing.  Listen, it's the little things in life right now that bring so much pleasure.  The pump is only good during the week, so this weekend we will be back on night duty, but we will take the three night break and be very grateful.  And just like that we were back on the happy track again.  Seriously.  These emotional rollercoasters are hard on a Mommy. 

(Waiting for RT to begin)

(school work with teacher Mommy)

Once we got home we played in the floor with Jack and spent time with Ella. Lucy played with Hyatt while Amanda and I went to visitation for my friend Sarah's dad.  Tonight felt so...normal.  It was great.  Erik's parents ate with us and then left for their apartment. 

We actually had a night with just us 5.  It was amazing.  Erik took care of Lucy--she was exhausted by 8:00.  Radiation just makes her so tired.  I bathed Jack and rocked him to sleep then I helped Ella shower and got her ready for bed.  Just a normal night at the Krull house.  I have been praying for a night like this for a long time.  Thank you God for answering this prayer. 

Something really special happened at our house tonight.  It deserves its own post.  I'll write about it tomorrow morning. 

Right now I am going to bed.  I've got baby duty all alone tonight.  Grandpa has been a God-send, but grandparents aren't great at listening to babies cry.  I've got some pretty nasty habits to undo!  Love you Grandpa!!!

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  1. Continuing to cover you all in prayer.


  2. Hugs to you and your family. Glad you had a good night. Keep the faith.

  3. Kate, you don't know me, but I heard of your story from Shannon, the wonderful gal who made the birthday cake for Lucy's b'day party. I attend Highpoint Church with Shannon. I would really like to talk with you about an event coming up at our church that I deeply believe you should attend. Please email me at vollmer.elizabeth@gmail.com and I will give you the details. You are such a strong woman and a great example of what a godly woman who trusts in the Lord's providence in every situation.

  4. Oh, it sounds like this special Grandpa is such a "normal" blessing... we have to undo those nasty ol' habits, too. :) It's just normal for them to want to rock our babies. So proud to hear that Lucy is doing so well at her appointments. She is so brave and strong. And then your other kiddos... thanks be to God for little Jack's "go-with-the-flow-age", and Miss Ella's sweet, sweet heart... God is good. And as to you and Eric - you're doing an awesome job. Just keep on keepin' on... and when you think that you can't keep on, just remember what He tells us... "Be still and know that I am God." He is. And He ALWAYS will be. Forever. Don't forget to take care of YOU. Have a good night and sleep tight. Praying for Lucy-girl and each of you, too.

  5. Wow!! What an incredible day! High fives and sweet Ella! How wonderful that you and Erik were able to share that with her. What an incredible work God has done -and continues to do- thru the two of you as parents, and as Christians. Our babies live by our examples. I'm happy the roller coaster is at least a little easier to predict, at least somewhat. Maybe the ups and downs will level out soon and it will be a little smoother. I hope that today brings more smiles and high fives and family time. Don't you just want to hug the person who invented the 'Magic Pump'? But, from what I've read thru the course of your journey, you will still wake up and check on your Lucy...just to make sure the pump is working. :o) That's just what mommies do....and you are an incredible one. Lucy inspires me every day, but so do you. As a wife and a mother...your faith, your strength and your honesty remind me that I could be (or anyone else could be) walking in your shoes and staring the enemy in the face...at any given time. I can only hope that if I ever have to walk down a path such as the one you are on right now, that I would have someone like you standing by my side. Praying for Lucy today, but I'm praying for you specifically today. I hope it is a wonderful day for you - filled with high fives, smiles and lots and lots of little girl hugs and slobbery baby Jack kisses! Laura

  6. I'm so glad ya'll had a night as a family!

  7. Praying for sweet Lucy and your entire family. I have been following you for a while and never post.I was in church last night and you immediately came to my mind. I pray God renews your strength daily and COMPLETE healing in Lucy's body with no side effects or reoccurence whatsoever, In Jesus name!
    Great news about Ella! What a precious moment in time. I can't wait for that day to come with my son.
    God Bless and know people you don't know are going to the throne for your family!

  8. Prayed last night and this morning for God to give you & your family ENDURANCE! You are keeping the faith, seems you just need a shot of God's energy & endurance to fight this fight! Will continue to do so in the days & weeks to come!
    Much love!
    Angie Davis

  9. Glad to hear you got a wonderful night at home just the five of you! I hope there are many more in the near future!