12/22/14

Another long overdue blog comin at ya! How is it already Christmas time?! This month has somehow flown by, and in just a little less than 3 days it will be Christmas! I could not be more excited, and I will try to make this a quick summary of the last month!

November 10^th was K’s scheduled sedation and chemo day at the clinic. Chris and I got her there on time, and she was able to be one of the first to get sedated and chemo started, so that made things a bit easier. Once she woke up from sedation, she was eager to eat and drink. She wanted to cuddle with each of us as they de-accessed her port, which left quite a bruise on her little sensitive chest. She started her steroid week, and I tried to keep her as busy as possible with play dates to keep her emotional side minimal as she was not sleeping that well, which is usual for steroid week. The great news is that her counts all seemed good, so they did not have to up her chemo again! (Praise God!)

Before we knew it, it was almost Thanksgiving time! My mom and stepdad came into town from Florida and K was thrilled! My mom was able to accompany me to K’s labs day on Nov 25^th. My mom does not do well with blood at all, so it was humorous to see Kaylee not even shedding a tear while getting her blood taken, and my mom squeezing her eyes shut so she wouldn’t pass out. Have I mentioned that the Lord made my child a brave rock star? It is true. Kaylee loved Thanksgiving Day, and getting to see so many people that she loves. Every year, we travel to various family members’ homes to visit for Thanksgiving, and this year we came back to our house to make our own Thanksgiving dinner as well. This was also the night Kaylee decided she no longer likes turkey and refused to eat it, but she loved the sweet potato soufflé that my mom and I put a ton of marshmallows in. hahaha.

:> Kaylee had a ball picking out our Christmas tree with us and when she finally hugged the 15^th tree we looked at, we knew it would be our Christmas tree. She “helped us” decorate the tree, only shattering one ornament. Hearing her squeal when Chris put the star on the tree with an “ohhhh how pwetty!” made us both smile.

Kaylee had her chemo appt at the clinic again on December 4^th. K was not scheduled to be sedated, so I took her by myself and she was allowed to eat & drink beforehand which is always nice. I made Chris put her numbing cream on her port before we left the house, bc as soon as she sees the numbing cream out, the tears start and she knows where she is going.  Her appt was set later in the morning, so we didn’t have to fight any traffic, and got there ridiculously early.  A routine chemo day turned into quite an entertaining day. K is obsessed with Christmas trees, so as soon as the elevator doors opened to the AFLAC Cancer Center, there was a beautifully decorated tree that she went nuts over. She was in a great mood after that, and when we were called back for her labs, she was waving and saying hello to just about everyone (seriously so blessed that she is such a sweetheart.) She chattered away to the nurse even WHILE she was getting her finger pricked, threw off her shoes to me so she could jump on the scale to get weighed and skipped to the height chart. While we waited for the Dr, she got to play in the game area. The pet therapy dog was there and Kaylee loved all over her. As soon as we got to her chemo room, Nurse Mary walked in. Kaylee just about leapt off my lap as she yelled “Miss Mary!” and ran to wrap Mary in a hug. Once Nurse Mary had accessed K’s port, the Dr arrived with her blood count report. He is fairly new, and K did what she always does around men that attempt to talk to her, and hid behind me. She has developed a super shy side only around guys (unless she has seen them 3 or more times.) This Dr did a great job of getting K to laugh, and she lit up when he handed her the ear scope and asked her to search for squirrels in his ear. She thought he was hilarious and pretty soon she was no longer shy and was talking away to him. All of K’s counts were great (praise God, exactly where they need to be to have enough ANC cells to ward off infection, but not too high, so the chemo is still working.) Her liver numbers were good as well, so they started Kaylee on her Vincristine chemo (the one that has causes the neuropathy in her right leg.) De-accessing her port was the only hard part of the day b/c it is very painful on her sensitive skin. After her chemo, we had to run across the street to the hospital for paperwork to get filled out before the New Year. Kaylee was able to see the train she loved to see every day when we were in the hospital so many times last year. She also grabbed my hand and said “Mommy! I pose in front of Christmas tree! You take the picture!” This was very abnormal as K hates to get her picture taken lately. Must’ve been the beautiful tree the Children’s Hospital of Atlanta has up in their lobby.  She smiled so big next to that tree.

We started steroid week that night, and something amazing happened. Kaylee not only slept well, but she slept in every day of that week until 8:45/9am!! This HAS to be because of prayers. Everyone that has read our blog before knows what a struggle steroid week is, and even though she was as emotional as expected with steroids, sleep was not a problem and I could not have been more thankful. Kaylee ended up getting sick on me twice that week but always rebounded later that day, and never had a fever, so I always knew it was because of chemo.

December 5^th marked an exciting day for us! As of December 5^th we had 1 year left. December 5^th of next year is her scheduled end of treatment date for her Leukemia! It will mean that after more than 2 years of battling cancer, it will finally be over, and our next prayers will be heavy with “Please no relapse, please no relapse!” To be real, this is something that strikes my very core with fear.(remember a few blog entries ago when I said I needed to memorize scripture on fear? That has helped!) I catch myself in prayer quite a bit coming back to something along the lines of “Lord, I never knew I could handle the Leukemia battle K has had to deal with, watching my child go through something as terrible as this…. but I know…I KNOW I could not handle her having a relapse!” The begging plea to God starts around then…. And I am always reminded to be still and trust in what God has planned for her future. I know he has great things planned for her, I can feel it. The unknown is so hard to trust sometimes, and I cannot write this blog honestly without adding in things that burden my thoughts sometimes. However, I could not keep my excitement over the fact that THIS Christmas will be the last Christmas that K will have to deal with chemo poison going through her body every single day. All I could think about on December 5^th was next year we can shout from the rooftops that our daughter is cancer free, and what a day that will be!!! What a blessing and praise to God for setting her free that will be!  K’s Dr said something that stuck with me “Next winter, you will get to re-meet your daughter. She could be very different without constant medication; you will get to see her really be Kaylee for the first time in a long time, so get ready if you think she is already an energetic girl!”

Since her counts were ok, I took her to see Santa after a weeklong pep talk Chris and I had with her. Kaylee has had two very bad years with Santa as she has flipped out getting a picture with him, so I was sure we could get her to smile with him this year. Sure enough, K ran to Santa, sat on his lap and told him she would really like a pretty Cinderella dress and white gloves to match her pretty Cinderella heels she has at home. She gave him a quick hug, said thank you, and then ran back to me. It was sweet and precious and made into a fabulous picture that we have already framed in the house! Since then, we had our annual Christmas pictures taken, we have taken her to see a few Christmas light shows with friends, numerous Christmas shopping trips, play dates, and I keep trying to escape the flu that seems to have taken over the state of Georgia.

At this time last year, we were just getting discharged from the hospital and scrambling to get everything done before Christmas. Chris and I have both talked about what a blessing this year has been, that K has stayed healthy, and happy. Really, this whole month she has just been this little ball of energetic, excitement, and there is really nothing that could make me happier. This child’s joy becomes our joy and seeing Christmas through her eyes is remarkable. Her next scheduled chemo at the clinic is the first week of January, and I am sure I will update before then, so we will continue to pray for her to remain happy & healthy.

We are so thankful for your prayers and following our updates on K. It is because of your prayers she is doing so well! Please keep praying!  We are so so thankful for being able to write good updates on her! We want to wish you all a very Merry Christmas and thank you for being a part of our lives during this battle! Less than a year left!!!

xoxox

Duffy & Chris

#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.”

** To see picture updates on K, feel free to follow her on Instagram @Kayleesbattle.

November 8^th/ 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 11^th 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 13^th was her sedation and chemo day at the clinic. At her clinic visit 4 weeks before this (Sept 15^th)  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 28^th. 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 28^th 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 30^th, 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

#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.”

** To see picture updates on K, feel free to follow her on Instagram @Kayleesbattle.

*********************************************************

10/25/14
Duffy blogging

I promise we have not forgotten to post updates, but we are living through the terrible twos right now, and we are deep in survival mode without a date night out in sight.
We have had quite a few family members & friends asking us why we haven’t updated this blog… And we will. I am thinking of ways to try to make a 6 week recap in a short version.
So, thank you for checking for updates on how Kaylee is doing! If tmwr night is a better night on getting this little girl to bed, I’ll have a update! We love y’all! 🙂
***Until then, you can see her updated pictures on Instagram @Kayleesbattle.

Duffy & Chris

All our energy has been thrown into creating this Childhood Cancer Awareness Fundraiser Event benefitting The Cure Childhood Cancer Organization! This is happening TOMORROW!
There is a Red Cross blood drive, Be The Match cheek swabbing booth, The Amanda Riley Foundation booth, Whipping Childhood Cancer booth (donate money to nominate a friend to take a pie in the face!) We have a bounce house for kids, a face painter, a craft table for kids and a Dj playing music! We have PRAY4K shirts & goodie bags for kids. There will be a raffle drawing ($3 per raffle ticket) with 15 raffle items! We are super excited about our silent auction! Our silent auction features 2 iPads, an iPod touch, an iPod nano, a football signed by Mark Richt of the UGA football team, Beats Wireless Headphones, a Weber grill from Home Depot, and a PlayNation Play-set valued at $1200!!
Come out and support Childhood Cancer & donate blood for the kids at Children’s Hospital of Atlanta! Kaylee is excited to see everyone & so are we! Help us make this a winner of an event to raise money for CURE!
Where:
The Bridgemill Neighborhood pool parking lot @
1190 Bridgemill Ave
Canton, Ga 30114

Time:1-3:30 pm

We can’t wait to see you all!!

Duffy, Chris & Kaylee
(Update on how K has been doing will be posted nxt week!)

Everyone is invited!! Join us for an awesome way to support finding a cure to childhood cancer!! Fun things for kids and adults!
Come say hi to Kaylee too! We would love for you to join us!!

Sept 7^th 2014

Duffy (K’s mom) blogging

Whew, almost another 3 weeks have gone by without an update on how Kaylee is doing, so I will try to get caught up without another 4 page essay but you are warned~ my attention deficit is off the charts today, so I may be all over the place.

I last left off the night before K’s August sedation and chemo. Her chemo appt was on Aug 18^th. Chris and I managed to wake up to our early alarms despite being awake far too late the night before. We left 15 min earlier than we normally do, but somehow wound up in the world’s worst Atlanta traffic, and were almost 20 min late for K’s chemo appt, pushing her back to be the 4^th to be sedated for the morning. She was not thrilled and kept asking for food or water and it hurt my heart to have to keep saying “in just a little bit honey, you can eat.” I would rinse off her paci in hopes of quenching a bit of her thirst while we waited. Once we had her blood drawn, we learned that although her counts dropped a bit since her labs, they were all still good numbers. As always, the hardest part is seeing her once the propofol has drugged her and handing her over to the Dr and nurses. That’s my little girl in their hands, and each time I find myself fighting back tears having to walk away & wait to hear we can come back in to see her. About 10 minutes later, we were able to go back in. The Dr’s said everything went fine but the anesthesiologist had to give her a bit extra propofol to keep her sedated. (They try to keep her sedated long enough for the chemo they have inserted in her spine to stay in her spine. If she tried to sit up before then it can cause an extremely painful “chemo headache” for her.) After the nurse started K on her Vincristine chemo through her port, K woke up super drugged & slurring her words. We were able to sit her up and man, she was out of it. She was waving her hands in front her face and giggling as we were pulling the super sticky stickers off her that monitor her heart rate (and usually cause her to kick and scream while we do it.) The nurse was able to de-access K without her even being aware what was really going on. She would sternly look at the nurse and say “stoppppp dat….dat sticky”, and then laugh at her funny joke. Chris and I picked out her toy for her since she wanted to open and close the toy cabinet multiple times (thinking it was hilarious) instead of picking out a toy which is usually her favorite part of a chemo day. We got K’s monthly medication calendar from the Dr before heading home a bit before lunchtime, and K seemed back to normal by the time we got home.

Kaylee started steroids that evening, and we once again had a week of very little sleep. She doesn’t sleep well when she takes steroids (this also includes napping) so emotional outbursts are many, and the girl could eat around the clock if I let her. The steroid week was quite possibly the longest week of my life b/c Chris’s company was moving warehouses, so he worked until 10 pm or later every night, and through the weekend. We follow Kaylee’s medication calendar religiously, and Chris usually handles her nighttime chemo meds, but since he was working late that week, I was putting them together. I just happened to read the bottle of her Methotrexate that said in bold “DO NOT TAKE ON WEEK OF SPINAL TAP. I looked back at the calendar that had her scheduled to take Methotrexate that night. She had her spinal tap on Monday. This was Friday. I left a msg for the Dr on call at the clinic, withheld the Methotrexate, and only gave K the meds I knew we always give her before her bath time. The Dr on call called me back after pulling up K’s file. He said ‘hmmm, I see here that it does in fact say on your calendar to give that Methotrexate to her, but you didn’t right?” I said “No way, the bottle of the medication clearly states not to.” The Dr said “yeah, do Not give that to her!  Giving her Methotrexate chemo this soon after Methotrexate was inserted in her spine would not be ok. It could make her very sick. She is not supposed to be given that medication until next week. I will make a note to call the Leukemia team tmwr to make them aware of this error, and will be notifying your daughter’s oncologist tonight.” I thanked the Dr, but was fuming mad. Not at him, at the Dr that made out the calendar. After putting K to bed, I just became more angry thinking about it.

The next morning, the same Dr on call, called to let me know that everyone was made aware of the mistake, and that I did the right thing by calling. (He was so nice.) In my anger (that I still stand behind) I told him “please note in her chart, that Dr **** (name withheld) is no longer allowed to be present in the room for any clinic treatment Kaylee has. That if that Dr is assigned to Kaylee at any point, she will be asked to leave and to send another Dr in. This was not just any medication error; it was a chemo error that could’ve landed my 2 year old in the hospital. I know she is a relatively new Dr, and because of that she should be even more careful. Everyone makes mistakes, but Kaylee will not be at the tail end of one of those mistakes again. (Mama Bear mode.)

Kaylee was doing great. We had play dates planned almost every morning and friends visiting quite a bit & she loved it. One thing that stuck with her though, is the afternoon we went to visit her great grandparent’s house to film Pop-Pop’s Ice bucket challenge video for ALS awareness. She thought it was hilarious, and she wanted to see every video on my phone of people doing ice bucket challenges after that. Pretty soon she would play at her water table on the deck and she would smile and yell “Ice Bucket Challenge Mommy!” and pour a cup of water over herself and laugh! The first time it happened was when my brother was over for his Birthday, and we all cracked up! Now, I have to remind her everyday not to do it (unless of course it is right before bath time, bc then it is fine. Lol)

K has had 2 rough days the past few weeks. Both involved her getting sick on me and herself, but she always rebounded by that afternoon or the next day, and she has not had a fever, praise God, so I know it’s the constant poison going in her little body every day.

This brings us to lab day which was on Sept 4^th. Although K cried getting ready to get her finger pricked, she quickly smiled for a picture bc her favorite lab tech Denise was doing K’s tests. When I take to get her labs done, we always wind up waiting 2 days to hear results, so imagine our surprise when the Dr called both Chris’s and my phone that night while we were doing K’s bath/bedtime routine, so neither of us picked up the call from the unknown number. After Chris kissed K goodnight and left the room, and I was doing my nightly prayer with her, he returned less than a minute later looking alarmed. He re-played his voicemail on speaker and I heard the Dr saying we needed to call her back as soon as possible to discuss K’s labs they had received. First of all, we have never gotten a call at night from a Dr unless it was bad news. Second of all, what could possibly be so bad that we would need to call back so quickly? Well, naturally I went into semi-panic, don’t let Kaylee see mode, and told Chris I would be downstairs soon, so we could call together. I prayed with Kaylee filled with fear about what the Dr could possibly say.I studied K’s face and said “honey, are you ok? “ Kaylee so preciously said “mommy, I fine. I take an all night nap!” (Love that child!)

After I put her down in her crib, Chris and I called the Dr together. We both breathed a huge sigh of relief that the Dr was only calling so that she would catch us before we gave K her chemo that night. K is apparently Neutropenic again (Severely low ANC cells, making her really susceptible to getting sick) and she is back on fever watch. Ugh. We had already given Kaylee her meds that night, so the Dr said they were suspending her chemo until her next clinic appt to give her body a chance to recharge. The Dr also would like K to get labs done again this week to see if being on chemo-suspension has helped her counts bc her clinic appt is set for Monday the 15^th. Keeping it real, I totally got choked up after hanging up the phone because I had let my mind wander into worst case scenario ideas while the call humbled me at the same time. I am reminded so often that none of this is in our control. This is all God, He….HAS…..GOT….THIS. He Made Kaylee, every inch of her, and we know He will heal her, we believe He will heal her, but in that few minutes of not knowing what her labs could have revealed, I let fear take control. Random fact, did you know the phrases “have no fear, fear not, or do not worry” are in the Bible over 300 times? True story. So, operation memorize some of those scriptures are going on my to do list!

So, as this blog is getting longer than usual, I will tell you our prayer requests for the time being. We are praying for K’s white blood cells to make a triumphant return, that she will not get any virus or sickness while those white cells are building. We are praying for a great week ahead, so that she can enjoy the short time she has being off chemo. We are praying for safe travels as my mom and stepdad make their way up here to visit (super excited about that by the way.) We are thankful that she has only felt crummy a few days so far. We are thankful that she has such a happy, energetic spirit while going through this battle. We are thankful that this terrible medication is in fact doing its job,and that this battle will be won soon (she is half way there!) Above all, we are thankful that God chose us to be her parents!

This month of September is Childhood Cancer Awareness. Although we are always “aware,” we are thankful she is still here with us, and still fighting each and every day. I read a story this past week about a child who was the same age as K with the same diagnosis and she passed away last year. It took my breath away & the strength and courage this family continues to have after losing their daughter is inspiring. ALL Leukemia does have a 83-85% chance success rate, but I never think about the 15% that do not make it. So, we are reminded everyday to be so incredibly thankful that she is doing so well!

If you have a moment this week, please visit the CURE organization website (www.curechildhoodcancer.org) Kaylee is one the ’CURE’s Kids Conquer Cancer.’ Scroll until you see her picture by the date of September 25^th. You can see her story as well. Each family of each child is attempting to raise $1000 or more for CURE all going specifically to childhood cancer research. Research is the only way we can find a cure!! If you feel inclined to donate, please specify it is honor of Kaylee C.  What better way to give meaning to Childhood Cancer Awareness Month! CURE is one of the best organizations to donate to if you are looking for a legit charity.

I will also be updating this week with details of what we will DO for Childhood Cancer Awareness Month. We have a big event planned that will be going on September 28^th and I cannot wait to share the details & the flyer!

Until then, thank you for reading about our life and keeping up with how Kaylee is doing! Your prayers mean the world to us!

#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.”

Kaylee doing her ‘ice bucket challenge at her water table.

It’s childhood cancer awareness month! Go gold for Kaylee (new update coming soon!!)

8/17/14

Duffy (mom) blogging

Wow, it has been 3 weeks since the last time I updated the blog! Sorry to the family and friends that have reminded us to keep them updated. Time has flown since her last sedation and chemo and I will do my best to catch up.

After her sedation and chemo day at the clinic on the 24^th, Kaylee started her steroid week (or as I termed it ‘the 6 days that no one slept much and I was a total grump.) To say Kaylee was emotional is an understatement, but on the bright side, she feels very grown up now, because she insists of giving herself her meds orally instead of us giving it to her. She was up pretty much every night around 2am, refused to go back in her crib, and usually stayed awake until 5 or 6am.So she came to our bed quite a bit. I felt worse for Chris, b/c she likes to cuddle up to him which almost always involves her pointing out everything on his face while poking him “Daddy Eye” (jab to Chris’s eye while he was sleeping.) “Daddy Ear!” (Her little finger in his ear…)
I would say “yes, that’s right, but daddy is sleeping and it’s time for you to be sleeping…NOW.” Once she would get bored with that, she would move on to me & try to “brush mommy’s hair” with her fingers or make squealing noises and then laugh at the noise she would make. That is when Chris or I would use the ‘I mean it voice’ and she would slowly fall back asleep. Then she would pop up ready for the day as soon as Chris would leave for work, and have small meltdowns during or after play dates.

She did have some fun though! We did donut tasting one morning (since steroids make her hungry constantly) and she loved each bite. We took her to the pool, did arts and crafts (which she loves) and had a different play date with friends each day.

August 1^st marked one year! One year since her diagnosis of her ALL Leukemia. This girl has been through Hell and back this past year and watching her overcome every obstacle, every bump in the road, and still somehow doing amazingly well with smiles, makes us so incredibly proud of what a strong little girl we have! We know prayer has a ton to do with it and we are so thankful for that! We wanted to take her to a special dinner  to celebrate all that she has overcome in a year, but first we needed to stop by Sean’s 10^th Bday party. Sean is a son of one of my best friend’s Jessica, and although we only planned to stop by for 20 minutes, she was having so much fun, I couldn’t leave. The boys at the party were all a bit older and let Kaylee “push them” in the pool and then they would be overly dramatic about falling in the pool causing Kaylee to squeal with laughter (and her laughter is totally contagious.) She smiled or laughed the entire time and I felt like she was happier there than at any dinner we could’ve taken her to. 🙂 The cutest part was when we arrived home, Chris had stopped and picked up Kaylee flowers on his way home from work, and when he got down to her level to give them to her, her smile was so big, I had to share the picture on my Instagram page! It was absolutely precious how excited she was that her daddy gave her flowers. She pointed out “Those my fwowers!  They soooooo pwetty!!”

August 7^th was blood labs, and although K ran to give our favorite lab tech, Denise a hug, she was not being her usual self. She cried through the labs and seemed kind of out of it to the point where Denise even noticed. I figured her blood counts must have been down. She even seemed down when we joined friends for lunch after her labs, but she perked up after her afternoon nap. The following day, she didn’t seem to feel well either, so I was happily surprised when her labs came in. Nurse Karen called to tell me that her counts were great! Prayer answered with a high ANC count of 1344! Her liver function labs came back normal as well, so that was all good news to hear for sure! Over the wknd Kaylee’s God parents; Jenn & Brandon came in town and were able to stop by and visit Kaylee. Although she seemed shy at first (this is her new thing, faking shy) she quickly warmed up and giggled and loved all the attention!

Chris and I took K to see a small exhibit of giant trucks in Cartersville. Princesses and trucks are her favorite things right now, so she LOVED seeing these huge trucks. We also stopped by Chris’s grandparent’s house for a visit, and as usual she loved seeing them. Kaylee seems to light up around them, and they always get huge smiles out of her.

The following week, we had play dates each day and even a special breakfast with my mom’s good friend /next door neighbor, who was in town from Naples to visit her daughter! (Kathy, Kaylee adores you, and talked about you the rest of the day!)

August 14^th, started out pretty odd. Kaylee slept until 9:30 (which I was so incredibly thankful for – this never happens, so I went to peek in on her to make sure she was alright before she woke up. Once she woke up, I went in to get her to change her diaper per usual. As I was putting her pj pants back on after changing her diaper, K made a gagging noise and I as I picked her up, she got sick all over me and herself. Poor thing kept saying “I not feel well mommy.”  She got sick again as soon as I got her to her bathroom and I tried to calm her down bc she was soaked. I stripped her down and got her all cleaned up and put a different outfit on her (and me), while noting that she didn’t feel feverish at all. I brushed her teeth once she said “I feel much betta” I kept a close eye on her and canceled our plans for the day. It was now a cuddle day with mommy! We had some cheerios, face timed with my mom and stepdad, and I kept a towel under her while we watched Princess and The Frog in bed. She seemed much better after lunchtime, and obviously didn’t want to nap from sleeping in, so we didn’t too much, b/c I was still stumped on why she randomly got sick, but guess it was just a side effect from chemo. She was tired from not napping and fell asleep by 8:15, which is early for her.

It was a great weekend and Chris’s mom and stepdad came over for dinner before giving us a date night out on Saturday. Kaylee laughed the entire time with her grandpa while they played and when Grandma Debbie attacked her with kisses. She smiled the whole night before we put her down for bed, and we were so thankful to have a night out!

**So, tmwr (Monday Aug 18^th) is chemo and sedation day. I need to speak to the nurse as soon as we arrive at 8am b/c these sedation days are supposed to be 4 weeks apart. It hasn’t been 4 weeks yet, and I don’t feel ok with her getting all of this stuff early. So we will see. If they decide to do it anyway, she will get her blood drawn to check her counts, her port accessed, sedated to get chemo inserted in her spine, then Vincristine chemo through her port and she’ll start on steroids again (God help us, and poor Kaylee.)

We are praying for a calm Kaylee if the Dr does decide to go ahead with the chemo early, that we will get there early, so she is first to get sedated (so she doesn’t have to wait long without food or water.) We are praying that she does great during & after sedation and is calm during the de-access of her port (port access, feeling the sedation meds kick in, and port de-access are the hardest on her and many tears & kicking is sometimes involved.) We are thanking God for all the good days we’ve had this month, and helping her rebound quickly from the bad days. We are so thankful that we know the chemo is doing its job and killing those cancer cells. We are thankful she seems to have endless energy, contagious laughter, somehow finds a way to smile every day. Could you do that on chemo every single day? I couldn’t! God continues to amaze us with his blessings and mercy.

We will try to update how she does tomorrow, but are definitely asking for prayer. Every day is different, and we are reminded how much each day is still a precious blessing that we have with her. We’ve seen how much fight this little girl has, she is a firecracker, and she will beat this cancer, but she still does and will continue to need your prayers!

1 year down, less than a year & ½ to go! Go Kaylee!!

Have a fantastic week and thank you for reading, and sharing her story.

#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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When Chris told me last night that he was not able to come with me to Kaylee’s chemo appointment today I was very disappointed but understood. We’ve been very fortunate that he’s been able to go to so many as it is.
Naturally, I slept through my alarm clock at 6am. I jolted up in bed when I heard Chris say “Oh no! Duffy! It’s 6:50! You need to be leaving now for the clinic with K!” While Chris got K up, I somehow managed to get out the door with K in 15 minutes. Spilling coffee all over my shirt with Kaylee crying about “Da-da not coming” In the back of he car while we sat in traffic on 75 wasn’t fun, but we arrived at the clinic only 15 min late.
She did have to wait a bit longer to get sedated but she was as sweet as can be only asking for a banana once. 🙂

The sedation to insert chemo in her spine went well, and her counts came in. This little girls ANC spiked to 850!!! That’s great news!! That’s a huge answer to prayer! Although The Dr’s want that count higher for us to be able to go to places like church or the aquarium, it’s high enough to not have to be on house arrest!! Thank you, Lord!!
While k was still sedated, the nurses were able to give K her Vincristine chemo through her port AND de-access her too! That was a huge relief bc it’s so hard on her to get de-accessed when she’s awake.
She was thrilled she got to pick out a hair accessory toy from the toy chest when she woke up, and told everyone how brave she was 😊. (Love her!)
She happily snacked on things I threw in a cooler for her and we arrived home by lunchtime!

She is back on daily chemo & steroids start tonight for the Nxt 5 days 😦
(We’ll need prayer for that. Steroids cause her to be a hot mess of emotions!)

Thank you for all the prayers for today, for our family, and especially for her counts to rise!! God is so good & obviously heard all those prayers!
Kaylee is just now waking up from her nap, and her grandma & cousins are coming to visit! She is going to be so excited! Yay!
Have a great wknd & thank you for being a blessing in our lives by praying & thinking of our little girl!

#PRAY4K
Jeremiah 29:11
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When a pediatric orthopedic Dr is surprised a fracture can be healed in 3 weeks, you know it is simply the power of prayer at work!! Ecstatic is the word I would use of how we felt when he showed us the X-ray of her “100% healed elbow in record time!” (the Dr visit was tough for K with sawing off the cast & then doing X-rays but the end result is happiness! )
It hit me when we were driving home that this was such a huge answered prayer that I might have teared up a little.
The cast is off and although she’s sore and there are scratches from the padding sticking to her arm, she said multiple times today “my arm so pretty mommy!” That alone and the many smiles on her face during bath time tonight, splashing in the tub makes this mommy’s heart SO happy!

Thank you thank you thank you for all the prayers today y’all!!

Now let’s get those counts up Kaylee, and make the rest of this summer a fantastic one with better memories!
Thank you Lord for answered prayers!

#PRAY4K
Jeremiah 29:11
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