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 24th, 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 1st 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 10th 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 7th 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 14th, 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 18th) 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.
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.”