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 10th 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 25th. 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 15th 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 4th. 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 5th marked an exciting day for us! As of December 5th we had 1 year left. December 5th 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 5th 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!!!
Duffy & Chris
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.