March 25th 2014
Duffy (Mom) blogging
Note~ I originally wrote a semi decent update, but my computer froze and ate it all, despite my saving efforts. So, I am trying to remember what I said before, and type it quickly on Chris’s computer. I am also too tired to revise it before publishing, so here goes….
It has been about 10 days since I have updated on how Kaylee is doing. If you normally read our updates, you might be curious as to why we never updated about her big day of chemo that was scheduled last week. I took Kaylee to get her labs done, and they came back too low for her to receive chemo, so she was given a week off for her blood counts to restore. Thankfully, she still has not needed any transfusions or a hospital stay!
The week off is honestly what she needed. Our fighter needed a break. This phase is no joke, and I wish I could say she dealt with it the way some kids do by sleeping through it, but K has never been known to be an excellent sleeper. 😉
That last round of chemo gave K a diaper rash from hell that took 2 weeks to heal, a rash on her face that slowly went away, mouth sores, and almost total hair loss. (She still has fuzz in the front and about three thick strands covering the back of her head.) Pictures from a distance gives the illusion that she still has hair, but seeing her in person it is obvious that I am desperately trying to give her the Donald Trump comb over with those three strands of hair desperately clinging to her head.
It took K a few days to feel 100% but she has been on the move! This girl has been rowdy, fun and her sassy self. I have been calling her the K5 tornado. Everything in her path is turned upside down, so we have had a few lessons on putting our toys away when we are done before moving on. She has had her first “time-out” which went quite well, and one almost emergency room visit from falling head first into the dresser from trying to stand in the glider just as I reached out to scoop her up. She has had only a few play dates b/c although it was great to get a week off; her counts were really low, which increased her potential for getting sick quick. I wanted to be as careful as possible.
Yesterday morning when K woke up and I went in to get her broke my heart.
She pointed to her pillow and look concerned saying “Uh Oh! Mommy, Uh Oh!” I looked to see what she was pointing at and realized a large amount of hair was covering her pillowcase and she kept touching her head. I swallowed the lump in my throat and casually said “Good morning beautiful! Did you have a good night’s sleep? How bout we get you out of that wet diaper, and get you some breakfast?” She repeated “Brea-fast” and got distracted by telling me a few things that sounded yummy to her for breakfast. Later, while she was playing with her books, I switched out her pillowcase so it wouldn’t be an issue at naptime.
I took her to get labs done after breakfast (and sang the alphabet to Kaylee about 20 times in different accents that she found hysterical on the way there, including one I called “the Opera voice” which will never be heard in public.) Kaylee ran to hug our favorite lab tech Denise and asked for chikfila chicken as soon as we were done. (She can have whatever she wants on lab day or chemo days as far as I’m concerned.) Nurse Karen called today to tell me Kaylee’s counts. Her ANC count (which has to be 750 or more to do chemo) was 825 (crazy b/c last week it was in the 100’s! What a jump!) Her hemoglobin is stable, and her platelet count was in the 100’s (has to be over 75 to do chemo.) So she is good to go tomorrow. Tomorrow we start Day 29 of this 56 day Delayed Intensification Phase. We will be up at 6am to get to her 8am appt. She will get her port accessed, then she will be sedated to get Methotrexate chemo inserted into her spine, fluids before starting the Cyclophosphamide Chemo, fluids after, the Cytarabine chemo injection AND starting the new drug Thioguanine. It’s a heavy hitter day and it is all….day…long. The long list of side effects is our number 1 prayer request! We have quite a few prayer requests actually:
We are asking prayer warriors to pray away any and all side effects from all of this poison going into her teeny little body. We are praying that the day goes by fast and smoothly. We will be praying for the Dr’s and nurses to be rested and thorough. We pray for K to be calm for the numbing cream that we put on her for her port access, for her to be calm during port access and de-access. We are asking for prayer that the clinic pharmacy mixes chemo accurately and quickly. Lastly, we are praying for a quick sedation so she doesn’t have to be without food or water for too long. Whew! A ton of prayer requests this week, but honestly we couldn’t do without it. The people that have shared K’s story and are praying for her and us are what is helping us get through this!
I hope one day everyone that has prayed for our little one will get to meet her. I may be biased but I think she is pretty darn special! She just learned how to recite the alphabet out loud, (caught that on video today) learned how to count to 20 (with help) and LOVES to dance. She loves to Face time friends and family from the IPhone, give fantastic hugs, knock down blocks or sandcastles at the playground (our neighborhood playground is surrounded in sand,) and eat Macaroni and Cheese all day long (if I would let her.) She will not leave the house without at least one Minnie mouse doll with her, and new ice in her sippy cup of water (high maintenance?) At any rate, this age of hers has been the most trying so far, but my most favorite! I am incredibly grateful we are blessed enough to try to fight this battle with her and be there for her without hesitation. She WILL beat this! God is lighting the way for an amazing story! Trudging through this phase will hopefully be over soon, and one day be a way to encourage others to FIGHT LIKE A GIRL!
We love y’all, and thank you so much for reading and following Kaylee’s story!
K’s battle scripture:
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.”