Day 50!!

April 16th
Mom blogging

We are home! Home! Home! Home! Home! Home! (I am practically singing this!) the Dr told us on Monday morning that k’s ANC count (illness fighting white blood cells) dropped again and said we would need to spend another night in the hospital. We sadly said okay and then processed the news when she left the room. We thought; why in the world do we need to stay in the hospital when all her tests came back negative.. she will actually eat at home, be in a cleaner environment, be free of port lines that were hooked up to fluids, and most definitely get more rest at home?!
We called the nurse to ask the dr to come back in to our room when she could because we would like to discharge ourselves out of the hospital. The Dr came right back in and listened (actually listened to me) and my various reasons on why K would do better at home than at the hospital. Then shockingly said “ok, I can see your points are valid. I will discharge y’all & trust that y’all will call us if Kaylee gets a fever, that you’ll continue giving her the antibiotics every 12 hours, and limit visitors to only family.. But no going anywhere, no playground, no grocery shopping etc with her. It is too risky with her ANC count being below 100.” We eagerly agreed and packed up our stuff! Kaylee hated getting her port de-accessed bc they have to peel off the tape around the port that clearly hurts after being stuck there for a few days. However, once we were in the car pulling out of the CHOA parking deck, she said “I go home! I so excited!” which obviously made us realize we made the right decision! Thank you Lord!
Well I can happily say that K is doing great at home! She’s eating again (for some reason she eats just enough to stay alive in the hospital.) She’s dancing to songs from the movie ‘Frozen’ again, she’s coloring, singing the ABC’s, putting stickers on the dogs (and cuddling them every morning! K LOVES her dogs!) She has her normal bedtime again (bedtime at the hospital takes hours to get her to fall asleep) AND I’m not waking up every 90 min to change her diaper! Hallelujah!
Although we don’t know her current ANC count, I have to imagine they must have risen by now. So, it’s “house arrest” until her chemo appt on Friday. It is getting a bit tricky trying to be creative on things we can do inside all day, every day, but I will happily take this over being in the hospital (as nice as the AFLAC Cancer & Blood Disorder wing of the hospital is.)

The Dr set Kaylee’s chemo appt for 8am this friday (Good Friday, April 18th) because Kaylee will most likely need another blood transfusion after her chemo. Transfusions make it a much longer day. But guess what?! Today is Day 50 out of this 56 day phase!! I can see the light at the end of this terrible phase and cannot wait to say “Sayonara Delayed Intensification Phase!! We will not miss you, or what you put our daughter through!”

I must say that going through this phase made it so much easier being able to talk it out with a new friend, another mom, a giant beacon of light for me, who is dealing with the exact same thing. Sweet Brady Hall’s son Shephard was diagnosed with ALL Leukemia in August as well. “Shep” is exactly one week ahead of Kaylee in this cancer battle. Brady was able to tell me what was about to come, things Shep was going through, and encouraged me when I was worrying myself sick over this phase. Shephard is an amazing fighter,and was just admitted to the hospital for a blood infection this week. They are praying that no bacteria has infected his port. I would love it if y’all would like to join with me in my daily prayers for him & his family of 5. His Facebook page is Warrior Shephard if you’d like to follow his story. Thank you, Brady for continually being a light for me when I’ve wanted to throw a pity party!

We are praying for the rest of the week to go well & to continue seeing a smile on our little girl’s face! We are praying for the day to go by quick on Friday & the nurses to be well rested & thorough. We will pray that all her counts are up & she will be calm for her port access & de-access. We are praying for 0 side effects from chemo so that she can enjoy Easter (and the small Easter egg hunt I have planned in the backyard 😉.)
Overall, we are soooo thankful to be home, to see how much better she is doing, and that is all due to your prayers!!! We cannot thank you enough for keeping K a constant in your thoughts & prayers!
We are almost through the hardest phase she will ever go through in this battle and the countdown has begun!!

#pray4K
Jeremiah 29:11
“For I know the plans I have for you,” declares The Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”

**********

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6 thoughts on “Day 50!!

  1. So cool to read your blog, my three year old son in also in the delayed intensification phase, he has three weeks left. We are going to go play putt putt golf when he is done to celebrate. We are all looking forward for the phase to finish, congrats on being so close! You’re almost there!

  2. I started my day off right reading your blog, the sun is already shining brighter. She is surely doing better at home, being happy is always a plus in healing. I miss the Easter egg hunts with my now grown children, we had them inside due to living next to a church (Easter morning services) where we also went. I will continue to keep Ya’ll in my prayers as strongley as ever.

  3. I am so glad she got to come home. I am sure it is better for her and the dogs! Plus she gets to eat and sleep better. Has to be tough finding things to do w/o going out. I am sure she’ll love egg hunt. Happy Easter to all.
    Love and prayers

  4. So glad Kaylee gets to go home to celebrate Easter with family. Continued prayers that Kaylee gets through this phase of her treatment without any further ill side effects. Happy & Blessed Easter to all of the family there in Georgis.

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