Maintenance Phase Month Two

6/10/14

Duffy (Kaylee’s mommy) blogging

Finally! I have attempted to update this a few times lately, and have gotten distracted each time. (Shocking to my friends that know me, right? Lol.) The last time I updated this was a little over 3 weeks ago, so now I will try to play catch up!

A few days after I wrote the last blog, we received a package in the mail. Kaylee and I walked into the house from the mailbox with an excited Kaylee saying over and over “oooh! pwesent, mommy!” I was confused because the package felt like it was a heavy bunch of magazines of some sort. So I opened the package, and read a super sweet note taped to the gift, which was a very large bound book. I saw the cover of the book and immediately started tearing up which turned into the ugly cry after flipping through the gift. Dottie Livingston sent us the Kaylee’s Battle Blog Book. Every single blog we have written, every comment from each blog, every picture we have posted so far, all printed out, all bound into a book, complete with an “About the Authors page” and a table of contents! There are no words to adequately thank Dottie for this amazing, priceless gift to us! This is exactly what I have talked about doing and was going to do when this cancer battle was all over and am so humbled & thankful ‘Volume 1’ is already done for us! If you are following KayleesBattle on Instagram, you will see a picture of the Kaylee’s battle book that Dottie sent us. Thank you so so much, Dottie!

My mom and stepdad Ron flew in to Atlanta on May 22nd. I had called my mom when I knew they were almost to my exit, to let them know I was not home yet and was finishing up grocery shopping with Kaylee. When we were walking out of the grocery store, I immediately saw my mom walking toward us, and with 0 hesitation Kaylee happily yelled “GaGA! GaGa! Up!” and lunged to be in my mom’s arms (melt my heart.) My mom gave her a giant bear hug, brought K over to see Ron where he had just parked, and I could hear her saying “Papa get out of there!” (So she could hug him.) It is clear this little girl loves her grandparents! K had such a great time during their visit. We took her to Tanglewood farms (a miniature petting farm) and Kaylee loved it. I called her Snow White b/c at one point we sat her on a bench near one of the animals, and a group of 7 animals crowded around her to let her pet them…it was precious, and she couldn’t stop laughing. We took Kaylee to her first creamery, and Ron (aka Pa-Pa) introduced Kaylee to her first strawberry milkshake (which she completely devoured and now asks for quite often.) I had set up an overnight date as an early Birthday gift for Chris on the 24th, and knew K would have fun with Mom and Ron. Chris and I had not gone anywhere without Kaylee since last June, so this was a nice, short getaway to Chris’s ideal birthday playground; Harrahs Cherokee Casino in Cherokee North Carolina. Mom was awesome at sending me picture updates on how K was doing (which apparently was making them sit through the movie Frozen 2 times before it was even bedtime hahaha.) She had a great time going on walks in her umbrella stroller with them, and with the exception of refusing to let Ga-Ga rock her or go to sleep at a reasonable hour, she did great for them! She talked Papa into watching Pocahontas with her Sunday morning & they kept her happily busy afterward in downtown Woodstock until we arrived home. Thank you again, mom and Ron for watching her to let us escape for a night!

May 28th, we received a wonderful surprise. My Uncle Steve (My Dad’s brother) and my Aunt Kathy were passing through our area of town on their way back up North and wanted to visit. My dad was also driving over to my house for the visit too. K got to meet her Great Uncle (who she kept calling Grandpa ha-ha) who I have not seen in over a decade. Such a nice visit and am so thankful they had a chance to meet! After my Aunt and Uncle’s visit (and a much needed nap) Kaylee helped me make Happy Birthday signs for Chris to put up all over the house and pick up his Birthday gifts. We also sent him a pretty darn cute video of K saying “We go Birtday shopping for Daddy… It his Birtday.. We sing and eat cake!” hahaha  Oh how I love that little girl!

May 30th was K’s scheduled sedation and chemo day. She currently gets oral chemo daily, but she gets Methotrexate chemo inserted in her spine & Vincristine chemo through her port every 4 weeks. Kaylee woke me up at 4am crying in her crib, and I put her in bed with us, which she loves. We were able to get to the cancer clinic early ensuring K would be the first to be sedated and given chemo, so she wouldn’t have to wait too long without food or water. The Dr reminded us that now she is fully in the Maintenance Phase and her body has reacted well to the chemo. We are now able to take her out of the semi-bubble we have been told to keep her in, and can start treating her like a normal child. I said “Soooo, she can go to the kid’s church group now? On rainy days, she can go to the bounce houses with other kids? She can join Mommy’s morning out when that starts back up again? The Dr said “Yes, Yes, and Yes. Of course use your best judgment with her b/c it is still dangerous if she gets sick, but yes you can start letting her do things she hasn’t been able to do during the harder phases of chemo.” (Thank you Lord!)  Other than us having to keep K from batting away the new Anesthesiologist when he was administering propofol to her for her sedation, she did great! Those sedations never get easier to see or wait through for me and Chris.  The anesthesiologist said he had given K a bit extra Fentanyl for pain, so when she woke up, we greeted a seemingly confused, very drunk toddler. She wasn’t making much sense when she slurred/ talked, and kept missing the straw to her iced Gatorade I was holding out for her, so we made sure with the nurse and the Doctor she was okay before getting her port de-accessed. We picked out the toy for her out of the toy chest (b/c the drugged Kaylee thought the ceiling was more fascinating (and hysterical) to look at than the toy chest at this point.) It was a quick chemo morning and we were home before lunch. She seemed back to normal once we were home, just excessively tired. After a good nap, I made it a play at home day.

June 1st marked exactly 10 months since Kaylee’s diagnosis and a flood of the August 1st memories of taking her to the pediatrician bc I thought K had an ear infection or “something” b/c she hadn’t seemed like herself lately…. so unaware of the telltale signs of Leukemia Kaylee had.. when our amazing pediatrician (and Dr Hill is amazing) thought to do a quick blood test…finding out K was anemic, and had a suspiciously severe high number of white blood cells… and then being sent to the Children’s hospital and hearing the news only two hours later “I’m so sorry to tell you this, but your daughter has cancer, and she is considered high risk.” haunted me all day. It sucks that this diagnosis has stolen so many months of her life, and I hate that she has had to be so sheltered. However, Kaylee has come so far since then, and has been such a fighter, such a trooper, such a light at dark times. I cannot put into words how incredibly proud I am to be her mommy!

June 1st, she was also in the middle of Day 2 of her steroids for the month. We had made sure the Dr put Zantac on her med list this time to protect her tummy, and she seemed to be doing great so we took her to the neighborhood pool for the first time. This girl LOVES the pool and the only time she was unhappy was when we took her out of the pool for adult swim. On our way home, K had a huge smile on her face and said “Pool is fun! We go back soon!” I made sure the entire time K was on steroids, she had play dates set up every day to keep her happy and distracted, so it was nice to do something different each day and see how she interacts differently with each child. I am so happy to be able to get back into the swing of being able to do more play dates with her.  

We kept her busy all wknd with friends and we were thrilled to attempt our first church service as a family in a year on Sunday! A huge shout out to Suzanne Hartzler & Angie Cain for going out of their way to make sure our first service at Revolution Church went well! Suzanne even sent me a txt a few minutes into the service to ease my mind by letting me know K had made a buddy at Rev Kids and was having fun in the kids group!  Everyone was so sweet and we had a great first experience!

Later that day, we attempted another pool day. Things were going great until she did exactly what we often have to tell her not to do in the bathtub; she took a big gulp of water…the chlorine, and then started to choke. So much so, that I lifted her out of the pool to sit on the side while Chris and I tried to coach her through breathing again. Poor little thing looked so scared and was trying to figure out how to breathe in between her coughing fit. When she finally seemed to calm down a bit, she looked at Chris and me and said “I go home now.” We hadn’t even been at the pool an hour, so I looked at K & said “are you sure honey? You want to leave the pool and go home?” K looked upset and said “I go home now!” (Well, alright.) We said goodbye to some neighbors, packed up our towels and left the pool. Nothing seemed abnormal, K asked for a few spoonfuls of peanut butter once I got her into dry clothes, and I reminded her we needed to run a few errands soon. So, after a half hour of Minnie Mouse and a ton of spoonfuls of peanut butter that she wanted, (which is also somewhat normal) we left for Target. (I don’t know if I will ever go back to this Target store I am about to discuss ever again, and before I continue, if you are a bit squeamish about bodily fluids, stop reading now!) Kaylee was sitting in the target cart as Chris and I were shopping for a few items and she just didn’t look like she felt well. She reached forward to cuddle me a few times while I pushed the cart and she looked so sad at one point I just let her get out of the cart and run down an aisle to find daddy. She handed Chris a bottle Pepto-Bismol she randomly picked up, and as I walked up to the two of them, Kaylee stepped to the side and projectile vomited all over the aisle! I was shocked at what just happened; worried for her, and a bit freaking out b/c I didn’t even have more than a random tissue in my purse to clean her up. (Let alone the aisle.) Chris ran to grab some paper towels or napkins while I tried to calm Kaylee down and luckily ran into a target worker mopping. I explained what happened to him, and ran the 5 feet back to Kaylee (this is worst part, sorry ya’ll.) I got down to Kaylee’s level to try to clean her up as best as I could just as Kaylee had round #2 of chlorine vomit on me and herself and the aisle of tums again! I now have random strangers asking me if they can help, the Target worker assuring me this happens a lot, Kaylee crying, and Chris returning with napkins. I cleaned up what I could of K not even thinking what I looked like, picked her up and half ran to the ladies room. Kaylee is now shrieking that she is wet (the girl hates being messy)  while I’m attempting to clean her up with wet tissues, praying she doesn’t get sick again…so we wait…in the ladies room for a few minutes until K finally looks at me and says “ I feel betta mommy!” I’ve never been so thankful that I carry a change of clothes for Kaylee in her diaper bag, so once we got to the car, I changed her out of her wet clothes and I sat on a towel (bc I was still gross)in the backseat with her to make sure she was ok on the way home. We immediately gave her Zofran and a bubble bath when we got home (yes, I finally got to change too, lol). She refused dinner, and wanted to go to bed early. Poor thing.

I didn’t know if she threw up from the chlorine intake or a virus, so I was pleasantly surprised when she woke up Monday energized and yelling “Bagel and milk pwease!” The last two days have been a prayer for my sanity as Kaylee is being a 2 year old.. She is testing every boundary she can, saying No to everything I ask, and throwing tantrums over minor things. Motherhood is so glamorous, right ladies? J  Luckily, we have a few play dates scheduled this week and she will get to spend some quality time with her grandma (Chris’s mom) while I take Chris to get sedated for his Endoscopy.

 Like I mentioned before, Kaylee still receives daily chemo and on Fridays it is 2 types of chemo. Her next appointment at the clinic is June 27th. So I am thankful we have so much time in between each appointment. The most exciting thing I have seen so far is how fast (even while on chemo) Kaylee’s hair is growing! It is mostly fuzz, but I am taking weekly pictures to note the change. So far, the front of her hair is ash blonde, and the back of her hair is jet black, so we will have to wait and see how different it will be from her pre-diagnosis hair :> I am thankful we are able to get her out doing things more often, and that she has the energy to do so! She continues to amaze me with the things she says, what she picks up from conversations and how truly sweet she is to others. She has a tender heart with a stubborn side for sure. We continue to thank God in advance for healing her, and that she is doing so well. We continue to cheer on Kaylee to win this battle and to continue fighting. She is the bravest little girl I know & I love her with every ounce of my being. We are so truly blessed! Gods got this. 

Have a fantastic week, thanks for reading, and huge hugs from our family to yours!

 

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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4 thoughts on “Maintenance Phase Month Two

  1. Reading your words made me laugh & cry & say another prayer for you all!! You are such a Blessing to everyone who knows you & everyone who’s lives you touch! Give that sweet, strong Kaylee a big hug from me 😉

  2. Once again I smiled and teared up reading your Blog. Kaylee is an amazing little girl. You should be proud. I can see where she gets it from Duffy, your strenght and faith are an inspiration to Mom’s everywhere. I thank you for sharing your journey and continue to pary for Kaylee.

  3. I am so glad you loved my moms gift. She worked hard on t and wanted it perfect for you! We enjoy getting updated of kaylees and continue to pray for you all!

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