Written on 3/12/15, 4/1/15 and 4/8/15 😉
Duffy (k’s mom blogging)
A long overdue update!
Warning: longest update ever.
Say wha? How is it possible I haven’t written an actually update since January 29th?! Clearly, there is way too much to remember, so I will try to simplify as much as possible…but if you have read the updates before, I tend to get a bit wordy…
On February 8th, Kaylee seemed to be having a good day and was playing fine, but said quite a few times how she wasn’t feeling well. She is not a big complainer, so a little before lunch Chris decided to take her temp because she started to feel a little warm. Little one had a fever. With Leukemia, if a fever lasts longer than 30 min, you need to go immediately to the ER. We called the on call Dr after she had a consistent fever for over an hour, and he called the ER to let them know we were coming (this is so cancer kids can bypass the waiting room so they aren’t around all those germs.) Poor K had to have her port accessed, so the nurses could do a blood draw, and once they realized her fever was only getting higher they finally gave her Tylenol. It was clear she felt terrible but the nurses seemed to fall in love with K when she would say “thank you for helping me.” (Such a sweet little one.) After many hours at the ER, we got the news that we did not have to be admitted b/c Kaylee had a high enough ANC count to be sent home with antibiotics! Hooray!
Only 3 days later, we were on our way back to Scottish Rite for Kaylee’s scheduled clinic sedation & chemo day despite her recent ER visit. This was an eye opening visit, because things changed. Not in a bad way, not in a good way… (Her sedation and chemo that day went fine.) One of our favorite Leukemia Dr’s was Kaylee’s Dr for the day. He is one of the head researchers for Leukemia, and when he talks, everyone listens. He said it would be a good idea to start Kaylee on an antibody IV for now on during her monthly chemo visits. Her blood levels have been such an ongoing rollercoaster, that he ran a blood test on her antibody level that came back low. I know I will mess up explaining this, but this new infusion she will be getting is called an IVIG (also called IGG) infusion. It replaces antibodies her body should be making (but isn’t) to keep her healthy and her blood levels consistent. Her immune system cannot make more on her own, so she would need to get this IV monthly (at least until the flu season is over.) Her Dr also wanted to change her preventative antibiotic she usually gets every wknd to a monthly IV type called Pentamidine. So, the new IGG infusion plus the new antibiotic will now tack on 4-6 hours each month she has her clinic chemo visit. We’ll do anything to help her, but these new additions make for a very long day for her (and me.)
A few days before Valentines Day much to my surprise, I got a facebook message from an old friend of mine who said that she had spotted K on a CURE billboard in Cumming Ga. We knew nothing about Kaylee’s face being used for a billboard, but knew CURE would be using photos from a photo shoot she attended for their marketing material. We planned on driving out to a petting zoo on Valentine’s Day which was rather close to Cumming, so we decided to stop by and see the billboard (and take a million pictures of it.) Once we arrived at a place we could park and see the billboard, we got K out of the car and pointed to the billboard when she said “Mommy! Daddy! That’s Kaylee! Wow! I so big!” with a big smile. We loved it, and can only hope our baby girl’s face can raise more awareness about childhood cancer! Pretty soon, I was getting multiple txts and facebook msgs from friends passing different billboards around Atlanta for Cure with Kaylee’s face on it! It was and still is so fun hearing where each billboard is spotted!
Feb 16th Kaylee and I made our way back to Scottish Rite cancer clinic to start her first IVIG infusion and IV antibiotic the Dr suggested. Poor thing had to get her port accessed for the third time in a little under two weeks, (which I know was probably sore) yet she was just a sweetheart the whole day. I was able to set up a meeting with The Rally Foundation while we were at the clinic, and I hope to get Kaylee involved with them pretty soon. Like Cure, The Rally Foundation not only raises awareness on Childhood cancer, but funds research for new cancer treatments for childhood cancer, and that is so so so important! Luckily, the infusions didn’t seem to have any bad side effects on K, so we were able to head home around 3:30 that day.
THE BIG 3!
Feb 20th, my mom and stepdad came into town for Kaylee’s 3rd Birthday party! (Her Birthday is actually Feb 24th but we scheduled her party for the wknd before) Chris and I decided this year to really only invite family for her birthday. My mom was a huge help getting my Pinterest ideas for Kaylee’s Princess themed birthday party set up the night before. We of course let K choose the theme this year. The day of K’s birthday party, she woke up happy and excited because she knew she would see so many of her favorite people. She was talking a mile a minute about how this year she wouldn’t cry when people sang Happy Birthday to her, and she was going to tell everyone she was 3!She was so excited, it was precious! She kept listing literally every family member that was coming to the party, which is kind of amazing, because Chris has a rather large family. She took a good nap and woke up just a few minutes before her party started. Kaylee had a great time! She really got into opening presents this year and running to hug everyone. We were so incredibly thankful she was healthy and happy for the special day for her!
Feb 23rd was blood labs day, so I took K to Wellstar labs so she could attack her favorite Lab tech; Denise with a running hug (which she did.) This marked the first day Kaylee insisted she was a big girl and didn’t need to sit on mommy’s lap for her labs! Say Wha? She then proceeded to smile and talk to Denise during the finger prick and her blood lab! Who is this amazing brave big girl?! It baffles me how much she has grown up!
Feb 24th was Kaylee’s 3rd birthday and it snowed! What a fun surprise for the birthday girl! After a huge pancake breakfast for the birthday girl, we broke out the sleds, met the neighbors outside and took turns sledding down the huge hill in our yard. She tried her first cup of hot cocoa, roasted marshmallows with mommy, and smiled for pictures out in the snow. Once Chris came home from work, we made a big fuss over it being her 3rd birthday, and completed the day with a giant cupcake for her.
Skipping ahead to other great news, Kaylee was cleared to start Dance classes! So, on March 10th I enrolled her in a 3 year old dance class which is both precious and hilarious to watch. Little tiny 3 year olds in pink tutus attempting to do what the teacher says ~ what is not to love?! My daughter spends most of her time in class doing whatever dance moves she wants, getting a lot of redirection from the very patient teacher, and checking herself out in the long ballet studio mirror, LOL. As long as she loves going to dance class, she can go… (Although I have had to have a few discussions with her on actually doing what the teacher tells her to do.)
March 11th, it was back to the clinic for K’s chemo & infusions day. Our brave girl did not cry when she got her blood labs done, and barely cried when they accessed her port! We were there for 5 hours, so I was thankful that the therapy dog came to visit, and there were a few kids for her to play with in the toy area. That night K started her monthly steroid week, which Chris and I have now termed “Hell week.” Sorry if that offends you, but that’s what we call it. I can try to sugar coat our experience but I am better at just telling it like it is. She wakes up in pain quite a bit, she’s an emotional rollercoaster (crying throughout the day and not knowing why) and she usually winds up in our bed after waking up all hours through the night. Steroid Week usually means no one in this house is getting much rest, and everyone is a bit grumpy.
The following week was filled with playdates, family fun at the zoo, and a run in with the Easter bunny while running errands at the outlet mall. (If you follow Kayleesbattle on Instagram, you will see the picture of her literally running to hug him.)
March 26th, my heart just about exploded when Kaylee asked me to try to give her pigtails and it worked! Her hair is long enough for the cutest little pigtails ever, and I took over a dozen photos of it before she took the rubber bands out. Thanks to an app on my phone, I was able to see that last year at this time she was bald, so being able to put Kaylee’s hair in pigtails made me totally tear up with thankfulness.
K attempted and loved her very first gymnastics class on March 27th! What a joy it is to be able to let her try things like dance and gymnastics. I have so looked forward to doing normal things like this with her and just Thank God over and over for keeping her healthy enough to allow her to do this!
She loved being able to attend the Annual Easter egg hunt in our neighborhood. She ran to hug the Easter bunny, and thought filling her basket with pretty plastic eggs was so cool! Chris and I cracked up when she opened up a plastic egg after the hunt and gasped. “Mommy! Daddy! There is a pwesent in this egg! Oh my goodness! Its candy! This is so much fun! Do you think all da eggs have pwesents?!” She sat down right there in the grass to open up all her eggs she had collected to check out the “pwesants.” Lol. The smallest things give her such joy and it totally melts my heart.
Friday April 3rd, it was back to the cancer clinic for sedation, chemo and 4-5 hours of infusions. We were actually a few minutes early to her appt due to it being spring break week for a few counties, making traffic less chaotic. I was thankful Chris was able to join us for the sedation part of the day, because my nerves are always a bit rattled during sedation….but Kaylee? Kaylee whipped off her shirt for them to access her port and through tears, she said “I so brave!” We had a great anesthesiologist who allowed K to “help her” push the propofol through her IV line of her port to sedate her. Everything went fine with sedation. I met with her Dr after her sedation who said all her blood counts were terrific. (Thank you Lord.) I showed him Kaylee’s fingers and toes which looked like they were peeling from sunburn. Did you know that chemo not only kills cancer cells, but the good and bad bacteria in your body? Yeah, so K has these peeling fingers (that apparently are turning painful for her) and it is because of chemo. They prescribed her a cream to put on her fingers and toes each night, because she now has a non-contagious skin infection that we are hoping will get better very soon. (Gross, right? Poor girl.) Kaylee was happily surprised when she received a super sweet Easter basket once we were in our Infusion room. An anonymous family donates over 100 Easter baskets for the kids at the clinic every year, and Kaylee loved it. She was done with everything around 3ish, and we headed home.
It was Easter wknd, and I was so sad not to be able to attend church for Easter as it such an important day to recognize as well as a personally important day for our family, but we have tried to attend church while Kaylee is on steroids numerous times. It is just a bad idea overall, so Chris and I watched Andy Stanley’s message on TV. We had an Easter basket for Kaylee to discover and Chris set up an egg hunt for her. She seemed to be in pretty happy spirits all day despite it being 2 days post major chemo. It was around dinner time that she complained of tummy pain. We gave her the zantac that is supposed to help during steroid week and trucked along with the bath, bedtime stories, prayers and bed routine. Kaylee woke up just about every 45 min. At midnight, Chris heard her make a choking sound and looked at the monitor to see her leaning over her bed to throw up. I went to get the Zofran while Chris ran to get K. By the time I got upstairs she was crying about having vomit on her pajamas and apologizing for throwing up, poor girl. We kept telling her it wasn’t her fault and everything would be fine. I got her cleaned up and changed while Chris stripped her bed. Once we had her bed re-made, she had her Zofran, and quite a bit of cuddles from us, we put her back to bed after I prayed with her. Little one showed up not 30 min later at our bedroom door, holding her sippy cup of water and her 2 favorite stuffed animals with tears in her eyes and said “I sleep with you guys? I don’t feel well.” Who could possibly say no to that sweet face, especially after she threw up earlier?? Not us. Needless to say she slept with us that night. It is steroid week, so just about every night this week, she has either snuck into our room late at night when I am too tired to argue (or get out of bed to take her back to her room) or she has screamed bloody murder (which jolts us out of mid-sleep into panic mode thinking something is wrong) and she complains that she is hurting, and somehow winds up in bed with us. So, I am actually writing this after a full day with Kaylee on very little sleep from last night feeling thankful that tomorrow is the last day she’s on steroids for this month. Granted, she gets chemo orally every single day and 2 chemo meds on Fridays…but somehow the steroids are the worst.
I would say overall, we have nothing to complain about, even though I just did…lol. Really, there were so many good days that outweigh the bad, and she is finally able to do a few normal things kids her age get to do! Our daughter is a mixture of sweetness and sass, laughter and tears with an unbreakable strength that baffles me. On a daily basis she can drive me crazy as well as make me want to cuddle her as much as she will let me. I would let a train run over me for that little girl, and my momma- bear instinct over her is something fierce. I find myself so thankful that the Lord entrusted me to be her mom! What a precious blessing it has been to watch her grow up so far! I always say I know the Lord has big plans for her and this is only the beginning of her story, and it is true. Just the other night she almost brought me to tears when after I prayed with her before bed she looked up at me and said “Jesus loves me, and youuuuuu and daddy…and He’ll make me feel betta, right mommy?” I got choked up a bit b/c I was not expecting that, and I said “That’s right honey; Jesus loves you more than you can imagine and He will make you feel better. He is healing you, and we thank Him every day for giving us you.”
Kaylee has a little less than 8 months left of this battle (God willing) and I ask you to join us in prayer for her to finish this battle strong, and healthy! We thank you all so much for following her journey so far, and continuing to uplift our family in prayer. We are so thankful for each of you!
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.”
**For more pictures of how K is doing, you can follow KayleesBattle on Instagram