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First off, I wanted to answer a question I have gotten a lot lately ”How do I find the slideshow you posted about that your cousin put together? Answer~ Go to You Tube and type in Kaylee’s Story, and it should be the first one that pops up. It will not work from your phone b/c the song is copyrighted. Thank you to Jennifer Cannon who put that together when we returned from the hospital the last time. I still cry every time I watch it!
(After reading this- i should clarify, The first half was written 5 days ago & the Second half was written tonight so I apologize that the days sound confusing)
Ok! So, I realized it has been a while since our last blog, so I thought I needed to catch everyone up to speed on how life is lately. Last week (Sept 26th) was a very long day for all of us. Kaylee was sedated for a lumbar puncture, had all day chemo and a blood transfusion. My child continues to amaze me as I was able to capture another video of her smiling & dancing WHILE getting a blood transfusion! :> I was waiting for a lecture on not giving K one of the chemo injections we were told to give her (I’m sorry, but ONE of the nights we were supposed to give her that was terrible and she was screaming and crying and after the past few nights of injections, I just couldn’t bear it.) I looked at my flailing& crying baby girl and said “No! Chris, blame me. I’m not…I can’t… do this to her tonight! We gave her the other injections, and that will have to do! She’s had enough!” My heart was breaking for her. So, yeah, I got the lecture from the Dr, and a new approach on how to give her the chemo injection that would require less stress on all of us. Luckily we don’t have to do any more injections for 1 week, so that helps, but I got the talk to suck it up and do it.
After driving home in Friday Atlanta traffic at 5:00 (if you don’t live in ATL, do not try this, it takes eons to get home!) I was so tired, I couldn’t even think about putting together dinner, so I almost cried when a close family friend who lives in my neighborhood surprised me by saying before she let our dogs outside at our house, she stopped by Publix and picked us up dinner. (God bless you Sherry!)Before we left the clinic on Friday we told the Dr about our plans for the wknd and asked if K could do it all (would it be ok?) She said “Just try not to let anyone but close family hold her, don’t let her around kids that could be sick from daycare or school and just use good hand washing techniques to keep her healthy…but as long as she seems ok, try it.” YAY!!!
Our plans, which included hitting up the huge yearly yard sale in our neighborhood Saturday morning with K’s Godparents, lunch with friends at our house after, and a visit at another friend’s UGA football gathering. It turned out to be a fantastic day (and so refreshing to see our friends we haven’t seen in a while!) We reallllllllly wanted to take K to the Riverfest Festival Sunday morning, but wanted to see how she was feeling first. She woke up a happy girl, so we spent an amazing Sunday family day with her at Riverfest before naptime was calling. She smiled the whole time on a kids train ride with daddy, looking at homemade scarecrows with mom, checking out the food trucks, live performances on the stage and then checking out the kid’s game area. Chris won her a princess crown at one of the carnival looking games, and she seemed to really enjoy people watching as we checked out all the arts & crafts booths before heading home. She took a great nap, stalked her daddy in the front yard while he worked on the yard and played with me outside until it was dinner time.
K still has some sort of alarm clock in her that seems to go off every night at 3am. She wakes up and cries. Rocking her just makes her more awake, and I can’t possibly let her try to just cry it out, b/c she goes thru so much every week, I just think it is mean…. so we have literally just resigned to letting her sleep with us (at least we go to bed just the two of us?)
The rest of the week went well, and Kaylee seemed to be feeling fantastic until Wednesday. Kaylee had (what I consider a fever, but her Dr disagrees) of 99.2. (At this temperature I am usually near tears and wishing for my own mom, so I definitely catered to her.) We went against what the clinic advised and gave her Tylenol before bed, which helped her sleep (until the now-normal 3am.)
We woke up on Thursday (October 3rd) at 6am (sedation procedure, and quick Chemo day) and left the house ready to get to the clinic a few minutes early so we were sure she would be first to get her lumbar puncture and chemo (they schedule a few kids at the same 8:00 appt time, so it is kind of whoever shows up first, goes first.) Since she cannot drink or eat until after her procedure, we definitely don’t want her to have to wait. Well that was the plan anyway… Chris and I were super grumpy, and after sitting in Atlanta traffic for 2 hours, because of an overturned tractor trailer on I75, we obviously were not early…but very late to the clinic. So we waited. Finally at 11AM K was sedated and did well during her lumbar puncture. We met with one of K’s Oncologist (the one who called K’s bone marrow stupid) (it’s in a post from when we were at the hospital) I really do like this Dr and trust his opinion, so when he gave us the copy of K’s blood counts and called her and the blood results EXCEPTIONAL, I was ecstatic. He said “Her ANC count (the white blood cells that fight off infection) look great at 650, I would think they would be much lower, but that is also why her 99 degree temp yesterday didn’t rise to over 100 degrees. The ANC cells helped her with that. You know, she is a very happy child, her other blood counts look good and her color makes me very pleased as well. She is doing quite well and the chemo seems to be working quite well.” She was given 2 chemo treatments, (for those that wanted to know what Chemo she had this week it was: Vincristine and Methotrexate) and even though taking the tape off and removing the port was pure torture to hear K scream so loud, I was just happy that it was a short day. We were home by 1:00.
All day Saturday Kaylee had a constant low grade fever and got very pale. She didn’t want to play, and it was clear to us she didn’t feel well at all. An old friend of mine came to visit us with her very cute dog, which seemed to really cheer K up for a few hours. Sunday she seemed about the same, so we canceled our family day plans, and just hung out and snuggled our little girl. This entire week has been a mixture of trying to get to feel better, and she started having cold symptoms. I was positive she was going to need a blood transfusion soon, (based on her color and lethargic personality) so I was eager to get her blood work results back. (FYI, the nurses at the Woodstock Wellstar Lab are amazing and I sincerely thank Denise for staying a few minutes late to ensure K wouldn’t have to wait in the waiting room, and helped me to try to calm K down during her blood draw!) I felt so bad for K afterwards, that when she excitedly yelled “Side, Mama!” (Her word for slide), I immediately made a quick stop at the neighborhood playground for her to go down a few slides and swing on the swings for a bit (anything to get a smile!) We got her surprising blood results back the next day (Wednesday). The nurse told me that her ANC count was still high, and was high to the point it showed K was fighting off a virus, which was probably the cold. The rest of her counts were still good enough not to need a transfusion, (wow) and chemo was still set for Friday morning (Oct 11th.) October 11th is a special day for us, because it is Chris and my wedding Anniversary. This year, we will spend our 5th wedding Anniversary at the chemo clinic. My, how things have changed, but how blessed are we, that we don’t have to spend it at the hospital!
Today, we were so happy to have my best friend Jenny and her daughter Taylor visit us for a home play date. K has had weekly play dates with “Tay-tor” since she born, so she lit up as soon as she saw her! Although K clearly didn’t feel well, the visit seemed to really cheer her up, and that was a blessing!
So, tomorrow is chemo day. She will get 3 pretty potent types of chemo (Cyclophosphamide, Cytarabine and Mercaptopurine) Luckily, K does not have to be sedated (she can eat and drink at her leisure! Thank you Lord!) She does have all day chemo that starts at 10am. I am praying my heart out that the chemo will not affect her! (side note; Kaylee has learned to say the word “Amen” after I pray with her before bed every night, which is quite possibly the most heart-melting thing ever.) Ok, before I let my attention go all over the place~ here are our prayers for the week: We are profusely thanking God in advance for completely healing Kaylee, thanking Him for stalling her complete hair loss, and thanking Him for our good days and our bad days (which make us really treasure the better days.) We are praying for K to be calm as she can be during her port access tmwr (well through all of tomorrow, really.)We are praying for a better weekend, and week ahead. Above all else, we are thanking God for giving us the honor and privilege to be Kaylee’s parents! I look back at the slideshow of our life since August 1st and can’t wrap my brain around how she has been so amazing through all that has happened to her! I know I say it quite a bit, but WHAT a trooper she is! I tell her what a strong fighter she is every day, and thank God for that. All the prayers that y’all have been saying for her, and our family have most definitely been heard, and we are so thankful! Please continue those prayers for K. The Dr’s have said it will be a miracle if we can make it through October without having to go to the hospital, which makes me want K to be that miracle! We CAN do ALL things through Christ who strengthen us!! Let us not forget that!
Jeremiah 29:11~ “For I know the plans I have for you” says the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”