How amazing it is to be home! Yes we are home, and not in the hospital as planned for K’s chemo drip this week. I’ll tell y’all about that, but first I need to catch up!
We were able to be discharged from the hospital last week after Kaylee was fever free for 48 hours and sent home with meds to encourage her appetite and an antibiotic. My mom and step-dad, Ron came in from Florida to visit, which was a total blessing! They took her for a daily stroller walk (which she loved, and it gave me a few minutes to myself every day, which was so nice.) The first few days were a bit of trial and error on getting K to eat, but my mom and Ron were ready to try everything! If you have not been reading the blog, Kaylee is underweight since chemo makes her not want to eat anything, and to avoid a feeding tube being put down her itty bitty nose, we need her to gain weight. Every day this week, her eating has gotten a bit better (thank you Lord) and we are praying for her appetite to continue to increase. Kaylee enjoyed her grandparent’s visit so much, and she even started sleeping better once my mom suggested we try putting her in warmer pajamas. I thought K would be sweating because her room is the warmest room in the house, but apparently not. (Go mom!)
I was dreading taking her to the Wellstar lab on Tuesday morning to get her blood counts. Her counts would inevitably decide for us if we would go back to the hospital this week or next week for a 3-4 day stay for a chemo drip. Our little warrior doesn’t even tear up walking in that building anymore, and in fact, she is so used to the same two sweet woman who always do her labs, that even her finger prick didn’t make her cry this time! She sat there calmly only asking “All done?” a few times, as she seemed a bit impatient that it took longer than usual to get her blood going. (That means a strong platelet count, so that is a prayer answered for me!)
I was anxious to hear what her counts were. We knew ahead of time that last week she had a count of 2 (just 2) ANC cells (white blood cells that fight off infection) when we were discharged from the hospital, and she needed to have a count of 750 to be considered stable enough for the chemo drip. (I secretly prayed she wouldn’t have that high enough of a count yet, so we could delay the hospital trip and have one more week with Kaylee Chemo-free.) When the nurse at the Scottish Rite AFLAC Clinic called to share K’s counts with me, I may or may not have started jumping up and down smiling. ;-> Her ANC count was 108. Good enough to have some fight back in her, but not good enough yet to go to the hospital. Nurse Mary said that Kaylee should be up to 750 next week, but I need to take her to get blood labs done next week again to be sure. If her counts are indeed high enough next week, I learned that Thursday (Nov 21st) K will be sedated for a lumbar puncture & chemo will be injected into her spine before they even begin the 24 hours of fluids she will need before the 24 hour Methotrexate drip. She will have been chemo-free for 3 weeks at that point and they need to know how many leukemia cells may be around (praying for none!)
I always feel a bit uneasy knowing she will be sedated again, but we will be praying for her Dr’s and nurses. We are also praying for a calm Kaylee while they access her port, and that they sedate her long enough not to wake up WHILE they are doing the spinal tap, but short enough not to flip out when she wakes up. I am also nervous (yes, I keep repeating Philippians 4:6) about the Methotrexate they will be giving her. This chemo is not easy to say it nicely. We have been told to be ready for: vomiting, diarrhea, more hair loss, fatigue, mouth sores, muscle weakness, and bone & joint pain. (Now imagine all of this happening to your 20 month old child! Sigh.) So, I am just praying against every single side effect that could occur, reminding myself that Gods got this!
Needless to say, I am fully enjoying spending time with my little girl while she is chemo-free (and a total daddy’s girl now. She asks for Chris randomly throughout the day when he is at work. It is heart melting to watch her run to hug him when he gets home at night.) She is talking up a storm and loves to ‘read’ her books to me, which is really cute. She says a very southern sounding “Hiiii” to just about anyone that walks past her and loves ‘helping’ me with household tasks. Some days are a bit trying, as the ‘terrible two’s’ seem to have come early.(For example: She threw herself on the floor today, crying hysterically and kicking the ground when I asked her to stop throwing her pieces of cheese to the dogs. Sounds humorous to people without kids, I am sure. To the people reading this that have kids; I know you know what I am talking about to some extent…. (right?)
Speaking of cheese, I forgot to mention how her eating is going! It has been a huge prayer request and I meant to tell y’all how every day is getting better! (Thank you Lord!) Now, this may be b/c she hasn’t had any chemo in two weeks, and things may taste better, but I prefer to think that God is answering our prayers! :> She is no longer just eating the beloved Doritos (although we have a bag on standby just in case ha-ha) but a variety of food! She even started liking orange juice & fruit pouches again which makes me so happy b/c she so badly needs fruits and veggies in her diet to help her fight this battle (not to mention Vitamin C is huge in fighting cancer!)
So, now y’all know the things we are really praising God for, and a few of the things we are praying for, while next week is fast approaching. Every night before bed, I pray with Kaylee and first and foremost I am always asking God for complete healing, so I am asking y’all as K’s prayer warriors to continue praying for that, as well as the things we as a family have yet to face.
We will continue to keep y’all updated, and are continuously thankful for y’all! OOH! Also, I am working on an idea for next Thursday that I will share later this week with you all, which will include all of the people that have ordered the PRAY 4K shirts so be on the lookout for the next blog post!
Chris wanted me to remind everyone, that if you want an update sent to your email that we have updated the blog, click ‘follow’ on the bottom of this page. Also, please feel free to check out KayleesBattle on Instagram for the latest pictures of Kaylee (or scroll to the bottom of this page and a few of the latest pictures should show up as well.)
As always, thank you for reading, praying for our family, and sharing K’s story! We love y’all!
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.”