We get to….go home?!
Blog by Duffy:
Wow! What a change from my last blog (that we failed to upload on time!) Saturday morning we were shocked to meet with Dr Lew (love him) when he informed us that her counts weren’t SO low that we couldn’t try to go home again! I said, “But she gets chemo on Monday and Dr B said it would be silly to send us home, only to come back Tuesday with her having a fever.” He said “We don’t know that the fever was due to Chemo, we just know it wasn’t an infection. Her counts are going up and will continue to go up if all goes well, and I think you both would agree that Kaylee, and y’all would do much better being able to go home for a few days. So, with that I am discharging you. She will get her antibiotics through her port today and then you can head home.” Dr Lew is very respected at CHOA, he resides on the Board of Children’s Oncology, and he is super nice! Kaylee never cries when he comes around, so I know that must mean something too ;>
What an answer to prayer though! I was really starting to miss being home, and feeling kind of in a rut, and was so let down when we were told we’d have to stay in the hospital until Tuesday! Then just 24 hours later we end up getting to go home? Heck yeah! Praise God! We were blessed with my Mom and Ron to help us pack up the car with our hospital room stuff, and Chris’s Aunt and Uncle had dropped by to show us that the Pray4K shirts had come in (as well as to make K smile and laugh~ she loves them!)! I am so pleased with the results of the shirts, and as of TONIGHT we will be offering them for sale! The proceeds to these shirts will be going towards Kaylee’s ongoing treatment. Kaylee was sporting her shirt as we were about leave the hospital causing one of our favorite nurses to ask if she could buy one, so that was the first one we sold. J (Thank you to Brandy Brown Craig for the awesome design of the shirts, and to The Cannon family for getting the first batch of the shirts done for us!)
We had a much different reaction from K this time going home. Although at first she was clinging to me, she soon wiggled out of my arms to go play with her toys in her playroom. This was such a relief, and she continued happily playing out on the porch with Grandma and Grandpa so Chris and I could unpack and get somewhat organized at the house. Another prayer request was answered that night as well~ after her bath and story time, I let K doze off in my arms while slightly rocking her and she went to sleep in her crib! I didn’t have to get in the crib to get her to sleep! (After sharing a hospital bed with me every night, this was a huge prayer answered for her to be sleeping in her crib!)
Sunday was bittersweet. Kaylee slept in (she had cried and refused to go back to her crib at 12am, so she slept the rest of the night in our bed.) I was so happy for her to get the rest she needed, but we learned later that morning that my Mom and Ron needed to head back to Florida for business instead of staying until Tuesday as planned. My heart dropped because Kaylee is so happy around them, and they have been such a source of comfort and help to me! Mom and Ron prayed with us for Kaylee before leaving, and I didn’t realize that the day would be a flurry of friends and family visiting after they left, so that helped. Kaylee gave out a ton of smiles and high-fives before taking a short nap in her crib. After dinner, Chris and I gave K a bath and did story time and she again slept in her Crib (this time until 5am! Hey, its progress! Thank you, Lord!)
That brings us to today! Today was Chemo Monday! Kaylee had a good breakfast, seemed in good spirits and without wanting a nap, we headed to the Scottish Rite Clinic. She smiled at the other kids in the waiting room, which was cute. However, this is the section that breaks my heart -à. K is too young to realize what is going on, but she knows once we head into the Dr’s office looking room, that the nurse will take her vitals, and prick her finger to draw blood. So, as soon as we stepped in the office, her little bottom lip started to quiver and all I could do was try to cuddle her and show her videos of herself on my phone, which usually calms her. Hearing her cry out “All done? All done? All doneeeee?” in my lap as tears slid down her face after they pricked her finger made me wish yet again, it was me having to go thru this and not my little girl! Once we were “all done” with that, we were led to the bigger Dr’s office looking room where she gets her chemo. Again we tried to calm her tears, and the amazing nurse gave me a blanket from the heater to wrap around K and me, and she settled down. (Once they tap into her port she doesn’t feel the chemo going in, which is helpful.) Dr B came in to talk to us about her blood counts. (Check this out prayer warriorsà) He said her blood counts have gone up since our hospital stay! (HUGE prayer answered!) He is very happy with how well she is progressing! Her blood counts are still low enough to easily get an infection, so we still need to be very careful & guarded with choosing places to take her, but so far that is great news!
K took her chemo like the champ that she is, and around 3:45, we were done (she finally took her much needed nap on the way home in Atlanta traffic. (Sweet baby) I’m going to keep it real and tell y’all that it got a bit weird once we arrived home. She was happy for a while and then would all of a sudden be in a mess of tears for no apparent reason. She had a fit at one point when Chris asked her if she wanted some cheese (she usually smiles huge and nods eagerly, so this was confusing.) We tried to keep her distracted by taking her outside (her happy place) and she laughed when I gave her a few rides on her train, and loved running around the dogs in the backyard. Out of nowhere she would just kind of fall on her bottom to cry. Chris and I took turns scooping her up and comforting her. Bedtime was the most different. Usually getting ready for bed is a simply & easy task. Tonight, she cried about us putting her p.js on and then started laughing while crying (wha?) To get her to sit on my lap to do story time was as easy as bathing an angry cat, but as soon as I started reading her favorite book she calmed right down, snuggled in and randomly reached for Chris to hold her hand while I read.(That part was precious.) So I put her in her crib when she was drowsy and she has been asleep since (Praying she stays asleep!)
So, God has answered a Ton of prayers and we are beyond thankful &convinced it is thanks to all the amazing people praying for her so, THANK YOU! She still needs prayers for no fevers! She still needs prayers for healing! She needs prayers for chemo to not affect her (this can be done!) My mom and I are diligent on praying for no hair loss too (God says to come to Him with ALL of our concerns, so we can pray for no hair loss along with healing! Plus, the Dr’s said that is an impossible request, which makes me want it even more, and only makes me pray harder!!) I am thankful every day I see her smile and eagerly give me a hug and a kiss. She is our everything, our beautiful little girl…our FIGHTER!
Please pray for and with us! Help us help Kaylee Kick Cancer’s Butt!!!!!
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.”
PRAY4K!
**P.S (Chris has set up a pay pal account for the t-shirts for sale along with a picture of the shirt on the right hand side of this page if you are using a computer. If you read this on your phone, scroll to the bottom to find it) ** THANK YOU!!
I love reading your updates. I look forward to them. Then I always realize that this isn’t a story, its real life…. and to a beautiful family and child….. and someone I know. I pray but nothing but the best. I know it will all work out. God is on your side.
For some reason my last comment didnt post so I will try to remember it all:
I look forward to your updates. Makes me sad when I again realize these arent stories…. they are real life….. happening to a great family and a precious baby girl.
Know God is on your side and you all will get through this. We can help in any way possible.
– Melissa Plumlee and Justin Righter
K is a fighter ……she sounds like a normal 1/2 year old, the crying when you ask her about cheese or throwing herself on her bottom for no real reason. At the Goddard these things are daily experiences for all my two year olds. Maybe just not feeling that great so things that normally don’t make her blink an eye rub her the wrong way and create chaos in her mind. I would like to sell your shirts at our school, and of course buy one for myself. If you do Chemo on Monday we will all wear them Monday or whatever day. How can we set this up? 25 staff and 132 parents that can help.
K is not strong enough for my class and germs are strong but I welcome her to do some play dates with us when the time comes.
Please keep us posted and let me know about the shirts!
Jennifer Moody
Jennifer, that is an amazing idea! Chris and I will call you this week to try to set something up 🙂 thank you!!!