November 8th/ 9th 2014
Duffy (K’s mom) blogging
Officially the longest update ever……
Well I checked, and the last actually blog update I did was back in September! Whoo, sorry about that! To be honest there were a few weeks there of the terrible twos that I literally didn’t even want to think about writing. (My mother said my brother and I were actually the worst at 2 ½ years old rather than 3 (which differs from every other mom I have talked to) so I am praying that maybe it’s a genetic thing and this is the worst it will get and K as a 3 year old will be easier on us? I know a few moms probably just muttered “heh! Good luck!” while reading that. Ignorance is bliss, right?! Ok~ time to catch up!
Kaylee has had three blood labs, and one sedation & chemo day since the last blog. I guess I will start by finishing up where we last left off~ We held the Childhood Cancer Awareness Event and (with a ton of volunteer help) we were able to raise $4,022 to donate to the non-profit CURE Childhood Cancer Organization!! This far surpassed what Chris and I thought we would raise, and for that we are so thankful! The Red Cross had set a goal of getting 32 pints of blood donated that day, and our fantastic supporters exceeding that as well! Red Cross reported they were able to get 39 pints of blood donated at our event, which they were thrilled about! Hooray!
October 11th was Chris and my 6 year Wedding Anniversary, and we spent that day celebrating 2 very special people getting married! Kaylee’s Godparents; Jennifer Cannon (Chris’s cousin, whom I adore) and Brandon Hampton were tying the knot in the small town of Trion, Georgia a little over an hour ½ away. Kaylee was a flower girl and I was one of the bridesmaids. I spent the morning with the Bride & bridesmaids, so by the time Chris arrived with K at the church at 2:00 for family pictures, he warned me that she had refused to nap the whole way there. Grrrreat. I was very nervous about how she would do as a 2 ½ yr old flower girl without a nap, but we hoped the ring bearer; our cousin Micah (who Kaylee LOVES) would help her be calm in front of so many people. Our little lightning bolt shocked me! She smiled for pictures with Jenn before the wedding (Which wasn’t all that hard considering she loves Jenn and Brandon.) She did a great job sprinkling rose petals down the aisle, and wanted to shake her little booty at the reception the whole time as well! I literally had to hold her back from running to Jenn and B during their first dance! (this was also the day she became obsessed with the Taylor Swift song ‘Shake it Off’ (which I have now had to play about as many times as I have been forced to watch the movie Frozen for her hahaha.) She surprisingly did not fall asleep on the hour ½ drive home that night either! She was ready for more food and dancing in her “pwetty pwetty dress” once we arrived home! She asked to Facetime Gaga and Papa to show them her dance moves, and despite the late hour for her, we couldn’t help but laugh. It was so darn cute.
October 13th was her sedation and chemo day at the clinic. At her clinic visit 4 weeks before this (Sept 15th) her counts were far too low, so the Dr decided it was time to tweak her daily chemo down a bit. We were anxious to hear how her counts would be since that adjustment. Well, her blood labs showed good news and bad news. Her ANC cells (white blood cells that fight off infection) count was very high…too high. This was good news bc she had been around so many people at the wedding, she was able to fight off any infection that could’ve come her way.(thank you Lord.) This was bad news, b/c with an ANC count so high, the chemo was not really killing anything either (a.k.a pointless.) The Dr decided that we needed to tweak the chemo up a bit, and get her labs checked on the 28th. K was sedated, while I tried not to cry for the millionth time, (basically b/c each time she gets sedated we have to sign a form that blatantly states “verify you are aware there are risks with any sedation including death.”)
We spent the following week keeping K too busy to let her steroids week get to her (although sleep that week was horrific.) We took her Halloween costume shopping, had play dates almost every day, and then pumpkin picking at Cagles Farm over the wknd (which she keeps asking “when we going back to farm? I wanna see da goats & cows again Mommy! They stink, but they so funny!” The rest of the month was filled with kid’s birthday parties, her first trunk or treat (last year she was too sick to be out in public much), and our first time to the Camp Sunshine Fall festival! I cannot say enough good things about the Camp Sunshine event! We met families that have been through what we are going through that were so encouraging! Everything was so sanitary yet fun for the kids of every age! Kaylee had so much fun and it was a pretty great family day!
October 28th was K’s blood labs. We called the lab first to make sure our fav lab tech Denise was there. Kaylee was given a cute little Wellstar nurse bear when we arrived, (which was so sweet) and Denise was clever enough to ask K to name the bear before pricking K’s finger to keep her mind off the pain. (Have you had your finger pricked lately? I had forgotten how much those finger prick needles actually hurt!) Kaylee cried for about 3 seconds and then decidedly named the bear “Nurse Kaylee!” (We’ll work on that imagination with her, as she now has over 40 stuffed animals she has named Kaylee. LOL!)
October 30th, we got a call from Nurse Mary with K’s blood labs and her counts were all great numbers (but we know are too high for the chemo to work effectively, which means they will need to up her chemo again soon.) We will have to wait and see how her counts are on her clinic day which is coming up this Monday Nov 10th!
Halloween was a great day for K! She had been talking so much about trick or treating and her “pwetty costume” that before her bath & bedtime routine the night before Halloween, she fell apart, crying hysterically. It took us a minute to figure out what was wrong. She thought that it was Halloween and we just didn’t take her trick or treating! We had to explain a few times that Halloween was the next day and we wouldn’t dream of letting her miss trick or treating! It was sad, comical, and precious all at the same time! Chris was able to leave work early on Halloween, and “Unca Z” (my brother) came for our early dinner and to pass out candy while we took K trick or treating. Kaylee (a.k.a Tinkerbell) had so much fun seeing how magical the phrase “Trick or Treat” was and cheered as people would put candy in her little Halloween bucket! She would gasp every time she would see a little girl dressed as Elsa and say “Mommy, Daddy! Look! It is Queen Elsa! I go say hi!” The older little girls did not seem amused that K thought they were actually Queen Elsa, but it made us smile. The night was great until the sky opened up and we half ran back to the house 2 streets down in the rain to get inside. Chris had K covered under an umbrella as we ran and her little happy laugh once we got home recalling her fun trick or treating adventure to “Unca Z” was priceless. 🙂
Lately, I have tried to keep her (and me) happily busy with play dates (which has been a bit difficult b/c so many kids are back in school now.) while we know her counts are high. My favorite memory of last week was on Election Day. I had a talk with K in the car about how we needed to be super quiet inside “just like we are when daddy is on a work phone call..remember K? Shhhh, we need to be quiet.” She took this very seriously…until we walked in the door and she pretty much shouted to anyone that could hear “We here to vote!!!” I swallowed from laughing & I quietly reminded her “this is a quiet place,” so she calmed down a bit and then loudly whispered to the poll ladies “We going to vote!” They all cracked up, and once we were shown to a computer to vote, I thought we were in the clear. Nope. A few people came in the clubhouse asking questions somewhat loud and my toddler pipes up just as loud “SHHH! We Voting!” I tried to quiet her down and vote without looking at anyone to avoid the embarrassment, but even the guy at the computer next to me started laughing. K was thrilled that once I was done, we both got a ‘Georgia Voter’ sticker.
The hardest parts of the day are when Chris leaves for work and K acts like she will never see him again and clings to him crying (yet she is fine 5 min after he leaves.) Changing her diaper was a horrific feat this week, and bath/bedtime routine has become a begging plea to God for it to go smoothly no matter what time we try to start it. Glow sticks and ‘Elmo bath color changer tablets’ have helped the bath part of it but getting her dressed for bed, stories read, and actually getting her in bed are another story. I am able to write this blog because tonight was a good night. J
OK! So now we are pretty much caught up! Most of you know that this blog is not only to keep family and friends updated on how she is doing, but has also taken place of K’s baby book, so we try to keep up with things for her to keep. So here are a few things just for K (when she reads this later in life):
Kaylee, you know how to spell your name now, names of all the colors, and animals. You know each family member’s ring tone when my phone rings and you ask to call daddy about 10 times a day to say” hi daddy!” and then you say “mommy, I done.. talk to daddy.” Minnie Mouse is still ok, but Tinkerbell is apparently the coolest ever. You love to wear dresses, and you love shoes. You love to layer tutus over whatever you are wearing. You rarely smile for pictures on cue now and duck photographers at events. You insist on giving yourself your chemo meds on your own each night. Your Dr diagnosed you with neuropathy in your right leg due to Vincristine chemo, which will hopefully go away when your treatment is all over. Your fast growing hair is awesome! My heart breaks each time we get in the car and you ask if we are going to the clinic or to the Dr and you visibly relax when I say no. Lastly, you are the greatest gift God has ever given us and we thank Him daily for you! Every day we love you more than we did the day before no matter how hard on us you have been lately.
Prayer Requests~ Of course we would be so thankful if you keep Kaylee in your daily prayers and especially for this Monday while she has sedation and chemo in the morning….but I also want to focus on 2 other people that drastically need prayers!
The Terrell Family. Grant Terrell is a 3 year old cancer fighter who we were blessed to have met on our very first day of outpatient chemo & quite a bit while we were inpatient at the hospital. His family is amazing. You can find his story on Facebook under ‘Pray For Grant Terrell.’ He is a WARRIOR…but he so badly needs your prayers! Grant was diagnosed with Stage 4 Rhabdomyosarcoma a little over a year ago and he has been through & overcome so much…yet a week before his End of Treatment Party to celebrate all that he has overcome, Grant had a relapse. So as of last week they had to move forward with a whole new chemo regime while asking God to be glorified through it all. They amaze me and are heavy on my heart each night, so I ask you to PLEASE join us in praying for God to show his miracles in little Grant!
A very dear friend of mine is Jenny Gould. Her brother is Chris Pearson. Without going in to the whole story, Chris is in ICU right now after being hit by a car while he was trying to help a stranded motorist. He is so badly hurt; the Dr basically told his family “We are not sure how he lived.” Chris will be getting his right leg amputated on Monday. This is obviously very hard for 26 year old Chris to deal with, but his family as well. The family is asking for prayer for feeling to come back to his left leg, quick healing and that he will be calm through this process as he is obviously heavily medicated while trying to process all that is going on and what changes all of this will bring. Please keep him and his family in your thoughts and prayers!
As always we want to thank you for keeping up with our updates on Kaylee and for your prayers! We have her steroid week coming up, so I am praying for it to be a good week, especially if they have to up her chemo again. 😦 Most of all, we daily thank God for taking care of our little girl and showing us how to fully lean on Him through this cancer battle.
Find a way, in each and every day to be thankful for something!
Xoxo, Duffy, Chris & Kaylee
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.”
** To see picture updates on K, feel free to follow her on Instagram @Kayleesbattle.