April 29th 2014
Duffy (mom) blogging
So the Delayed Intensification Phase is over! Over! Over! Over! Feels like a big milestone to us! Kaylee was supposed to start the Maintenance phase on Thursday April 24th. That didn’t happen. Let me explain our night before.
Kaylee has been more than a restless sleeper just about every night. (One of the reasons it has taken me a while to post an update) Wednesday the 23rd was just about the worst. K woke up at 2 am crying/screaming. When I went in there to comfort her and try to rock her she about threw a fit, pointed at the door to our room and said “go in there peeeease!” I just resigned to let her sleep with us, because I was far too tired to deal with a fit when I knew we had to get up at 6am to get her ready to leave for chemo. Sleep is what she didn’t do. She apparently thought she was at a trampoline park b/c she layed down for approximately 10 minutes snuggling into her daddy. I had already started drifting back to sleep when I felt the bed shaking by my head. I looked up to see our smiling toddler holding the headboard and jumping up and down on the pillows. (Don’t mess with me or Chris when we are sleeping, we are not nice.) I used the mom voice and said “Down! Now!” She immediately sat down; still smiling at me like it was playtime. I told her to lie down and go to sleep. She snuggled back into her daddy. She then decided to drill her razor nails into Chris’s neck and ear to wake him up. He wasn’t happy. I drifted back to sleep and woke up 20 minutes later to being repeatedly kicked in the stomach and seeing K’s head at the end of the bed. She was doing jogging exercises of some sort (nailing me in the process) and giggling. Me: “Kaylee! No ma’am! Up here by the pillow NOW!” she immediately scoots up to the pillow in between Chris and me. Me: “Lie down and GO TO SLEEP.” Chris: “Kaylee, go to bed. If you aren’t sleeping in a few minutes, you are going back to your own room.” (Empty threats.) No joke, 30 min later, I woke up to being head butted and K trying to snuggle with me with her forehead pressed into mine. I could go on…b/c things like this went on for every 30 min until 5 am! I looked at Chris and said “this is ridiculous. I’m canceling tmwr. We are not putting her in the car in an hour to take her to get sedated & receive chemo after not sleeping…nor do I feel safe driving after no sleep.”
So we canceled her appt and caught quite the flak from the nurses when I told them the issue. They said I still needed to take her to get blood labs done so they could see what her counts were. So I did, and Kaylee the no-sleep-crabby-crab was not happy. :< But, guess what I found out a day later when the nurses called me with her lab results? It wouldn’t have mattered if we had taken her to the chemo day anyway. Her ANC count was too low to do chemo. She needs to have a 750 or higher ANC count and she was in the 500’s. Thank God we didn’t get her up and dressed, with no food or water (she can’t eat or drink before a scheduled sedation), go through Atlanta traffic, get her finger pricked, and then wait for her counts to come back only to be sent home again. Needless to say she napped well that day! K is scheduled to get her blood labs done again this Wednesday (April 30th) and scheduled to start the maintenance phase on Friday May 2nd.
She had a great Easter day. We couldn’t go to church for the first time on Easter, so that was sad, but I attempted to explain the Easter story to her. She was thrilled to see that the Easter bunny left her “pwesents” and we were blessed to have family members visiting in and out of our house all day (which we really do love.) Chris hid plastic eggs for her Easter egg hunt (which was really cute, I need to upload those pictures.) Her great grandparents also brought her an Easter basket-bag full of goodies, so she loved that. She loved all the attention from so many different family members, and I was just happy we didn’t have to restrict any visitors!
Since then she has been a ball of energy, and had quite a few play dates. Her favorite thing to do now is build sandcastles. Our neighborhood playground is surrounded in sand, and Kaylee loves it! One hard part was during a play date last week. I guess I had convinced myself that none of the kids would know K was sick, and just thought she had slow hair growth or something. Man, am I clueless. This sweet little four year old came over to where my friend Courtney, Kaylee and I were building a sandcastle at the playground. She was showing us her Barbie’s and letting K play with a few of them (burying them in the sand.) When out of nowhere this sweet little girl pointed at Kaylee and said to me “Soooo…She has Cancer huh?!” I was pretty shocked, and said “Wait…How old are you?” She said “I am 4.” I said “Well, you are a very smart 4 yr old. Yes, she does have Cancer. She has medicine that is helping her get rid of it.” The little girl just nodded. Just saying that to her felt like taking a bullet, b/c I had no idea someone so young understood why K was bald and/or noticed she was different. It hurts my heart, but I am yet again reminded to be so thankful that K is so young & doesn’t know she is “sick.”
Since this blog will ultimately be put into a book for Kaylee to read when she is older, I feel like we need to put in a few things that are baby book type updates. Minnie Mouse is still very cool to her, but no longer her favorite. I showed her the movie Tangled, and she is obsessed with Repunzel and the horse Maximus from the movie. Mac and Cheese is no longer her favorite. Any deli meat is now her favorite, as well as pretzels. She loves to take bubble baths, say “God bless you!” when anyone in hearing range sneezes, give kisses, and act suddenly shy when she meets someone new. She loves to point out trucks that are passing by when we are in the car, thinks the sunroof in the car is the coolest thing ever, and still loves to dance to the music from Frozen or the song ‘Happy’ “Happy song on, mommy! I dance!” I never think it is possible, but I love her more and more every… single… day! True, some days are much harder than others, but she is the greatest blessing God has ever given me.
There are a few rumors that have been brought to my attention that I want to go ahead and address to avoid any further confusion. Kaylee is in a 2.5 year battle of A.L.L Leukemia with an 83% chance to beat this cancer. For us, those are great odds. She is not dying nor does she have 2 months to live (?? where that started, I have no idea.) So far, her body is reacting to chemo exactly the way we have hoped & prayed for. We have 0 doubts that God will ultimately heal her, and our faith has not wavered about this at any moment. We are realistic that if we do hear the word remission, we know that it does NOT mean cured, it just means non-active.
So, Wednesday is blood labs, and Friday is the beginning of the maintenance phase with a sedation and chemo day. As soon as I get the updated calendar on this phase, I will post about what we are expecting. I am just glad the hardest phase is over! God has been so good and we are so thankful! We could not do without your sweet comments, msgs and prayers! We are thankful for K’s energy, napping, and eating well. We are soooo thankful that soon we will be able to attend church as a family too! There is still a long journey to pray about ahead of us, and with every prayer, she is beating cancer one day at a time!!
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.”
**If you would like to keep up with pictures of how Kaylee is doing, check out kayleesbattle on Instagram**
14 thoughts on “On hold…”
Great update! Go Kaylee! Just keep jumping right on through this trampoline park life – clap along if you feel like a room without a roof! Lol!! Duffy, you have such a talent for writing – I know your stories will mean so much to Kaylee when she’s older. I am intrigued by the little 4 year old angel at the park. It makes me wonder if she has had someone in her life with the same battle… who knows. This entire post reminds me of the saying, “in every moment something sacred is at stake”. Stay strong, happy, hopeful, and spontaneous! You are inspiring so many (for generations to come)…
Still praying for K – Hugs!!
What sweet comments Melanie! I think the little girl must have had cancer in the family to seem to know why K was bald. Thank you for your kind words!!
Love a good update. We keep you all in our daily prayers. Kaylee has a God story and when she’s beat this ugly C word she’ll be an inspiration and hope to so many.
Thank you for your prayers Elizabeth!!
I was laughing at the playtime during night time…Todd and I have had that happened to use on more than once 🙂
So glad the hardest phase is over! I think of you all often and are keeping you in our prayers.
Thanks Lauren. Had to put the non-sleeping story in there so when she is able to read her “story” she’ll understand what a rowdy child she was (and perhaps why mommy has so many gray hairs lol.)
Your nighttime battles are all to familiar. I know that the medicine that you can Kaylee is very limited but have you asked the dr.s about melatonin? It’s all natural. They actually gave it to my dad because all of the different chemos made sleep difficult. It helped and we use it for our 7 year old and it has made all the difference in the world. Sill praying for you guys daily.
Heather! Thank you for your prayers. I know about melatonin, and that is a good suggestion. I will ask her Dr if she would recommend us trying that.
Sounded like it was a wild night in bed. Glad you didn’t go for treatment.
What a great child you have even though I am sure a night you and Chris aren’t always happy campers.
Love and prayers Kay
Kay, thank you. Yes, sleep is needed but we are thankful she’s feeling good enough to be so rowdy. 🙂
Yes being rowdy is good even if you don’t get to sleep. I hope someday I can meet your angel.
Love and prayers Kay
Your little angel tugs at so many heartstrings. She is in our prayers daily, as are you and Chris.
She sounds like she is doing great. Glad I never ran into a 4 year old like that my little girl was bald as a cue ball till she was 21/2. Kids can be blunt. Your baby girl looks beautiful with or without hair.
That cracked me up Sheila! Thank you!