This week was a harder week due to K not sleeping much throughout the night, meaning we didn’t sleep much any night this week. She also barely ate anything all week but “Cho” (her word for cheese) at every meal. By Friday, I was maybe running on 20 hours of sleep total, and stressed out with her barely eating, and couldn’t even blog an update or prayer request. We were flat out worn out! I had two small breakdowns this week, both of which were due to brushing her hair in the morning and clumps of her hair coming off of the brush. I am relentless in prayer about this, but am not ignorant to the fact that chemo will cause this. It just kills me, and is still one of the things I have a really hard time seeing.
I was reading all of the information the Cancer Clinic had given us on Thursday evening and couldn’t get over the side effects page. Kaylee had a procedure scheduled for Friday morning. If you read our last blog post, you would know that getting up early isn’t our strong suit. By the grace of God, we woke up to our alarms (after 4 hours of sleep) at 6am, and quickly got ready to go to the clinic. Sweet Kaylee seemed quite confused, but was a great little passenger. We arrived on time and immediately were taken back to the vitals room. K again screamed bloody murder while I held her and tried to keep her calm when they pricked her finger. Once that was over we were taken to the sedation room to wait for K’s oncologist to go over her blood results, tap into her port, and to sign paperwork before her procedure. Because K only got a shot of chemo in her spine last week, it gave her a week for her blood cells to become quite stable. It was such a blessing to hear that her ANC count (white blood cells that fight off infection) was 800! That is a HUGE improvement (remember when we were in the hospital and It was 3?) Her platelet count was… well all her counts were awesome! If I had known this during the week, I so would have done more play dates, or gone out more with K. At this point one of the nurses (knowing K’s obsession with Elmo) gave us an amazing gift from CURE. She said “After this next phase of chemo, she won’t be able to use this, so this weekend is the only safe time she can use this gift.” We opened the envelope to find tickets to Sesame Street Live at Phillips Arena! With wide eyes, I said “She… can be… around crowds? She‘ll be ok to go there? Oh my gosh this is amazing!” The nurse said “Her blood counts are fantastic, but this next phase of chemo will crush those down, so take this weekend to get her out and about before she can’t again.” We told K she would be able to see Elmo and she smiled and said “Emmo!”
We again were able to hold K while she was being sedated and then laid her on the table, kissed her cheek, and went to the waiting area. For some reason, this sedation seemed to take so much longer, and I could hear every second tick off the clock above my head. They let us come back in after they were done with her lumbar puncture, to wait for her to wake up from sedation and told us they were able to get a good, clean sample. She woke up crying, and I immediately handed her apple juice which she chugged down instantly and smiled (sweet baby.) She was happily snacking on crackers and drinking more juice when we were taken to her chemo room for the day. For those that don’t know, Phase 2 started this week and she would be given 4 new chemo treatments, and would take almost all day to get thru them. This is why God just amazes me. —à Once our daughter finished her first chemo treatment (and lunch in the room with us) she was ready to go play in the kid’s playroom! There she was, hooked up to her second chemo treatment of the day and dancing to an Itsy Bitsy Spider game the nurse showed her, and happily playing with a kid kitchen! The crud she had streaming into her body was supposed to make her tired and feel like crap….and there she was, having a ball with all sorts of ‘new toys’ and laughing! Amazing! God is awesome!
While K was still happily playing, our nurse came over to us to tell us to make sure we got our lesson on her daily chemo injection we would need to give Kaylee this week. (Say what?!!) I said “Wait, her what? I can’t do that, won’t do that to her…You want me to give her a shot every day?? What is our other option?” The nurse said “Driving to the clinic every day to get her injection.”(Crap!) Chris knows I hate needles, and said he’d do the shots and I would be the one holding her. So we went through this shot lesson a few times with the nurse before Chris felt comfortable. We also went over all the new meds that would need to be crushed, dissolved and given to Kaylee at home every day, so we learned quite a bit. By the time K was done with her four chemo treatments, it was almost 4:00. She was worn out by the treatments and napped the whole way home.
When K’s bedtime rolled around, we gave her a bath, and before story time, I came up with an idea. I bribed my child. (don’t judge, I was sleep deprived!) I am one of those annoying moms who truly believe my toddler understands me when I have a talk with her. Me: Kaylee, guess what? You can meet Elmo tomorrow! Kaylee: (looking excited) Emmo?! Me: Yes, Elmo! Butttttt, in order to see Elmo tomorrow you have to sleep all night in your crib, and not wake mommy or daddy up tonight. If you wake mommy or daddy up tonight, we can’t go see Elmo because we will be too tired. Kaylee (looking down and quietly says “Emmo…” Me: So tonight you get a good night’s sleep in your crib, and when you wake up in the morning, we will go see Elmo! Remember though, no waking up crying tonight.” Kaylee: (face lit up now) “Emmo!” and she hugs me. (See? She totally understood me! LOL) Kaylee slept in her crib until 9:45am (!!!) and didn’t wake up once throughout the night! We finally got a good night of sleep!! Praise God! I was ecstatic when I woke up and told her what an awesome job she did, and that we would see Elmo today.
We had a busy morning, and Kaylee took a nap on our way to Phillips Arena. We had time to get her an Elmo shirt and some lunch before the show started (she refused lunch. :<) I have never seen K so excited before! This girl was dancing to the music, pointing out Sesame Street characters to Chris and me and clapping. She loved it and I am forever grateful to Cure for those tickets! By the time we left, we heard there was a Disney Junior tour going on down the street at Centennial Park, so we walked over to check it out. Apparently kids could get pictures with Doc McStuffins, and there was a line a mile long. We bypassed the line and took K to see the Fountain of Rings instead, where a ton of kids were happily playing in the water fountains in this warm Atlanta weather. She loved holding on to Chris, getting close enough to touch the water and giggled when the fountains would shut off and magically come back on unexpectedly. Again, a huge praise to God that she felt so good all day, and that we were able to have such a happy family memory! I didn’t even stress out that all she wanted for dinner was cheese. I was just so happy about what a great day she had! I knew we would have to do the chemo injection tonight and I tried to put it off as long as possible. I tried to have a talk with her about what we had to do after her bath time.
After her bath, Chris got her shot ready and I held her in my lap trying to distract her with videos of herself on my phone. There are no words… this was AWFUL. Here she had this great day, and then we had to stick a needle of chemo in her outer thigh. We were not allowed to numb it either. She screamed, cried, and kicked while I tried to hold her still. As soon as we got her band aid on, she was still screaming and crying and clinging to my neck. We both felt horrible for her. We got her ready for bed, and she finally calmed down for story time, and is (for now) fast asleep in her crib.
Next Friday, the 21st, she will be sedated again to get another lumbar puncture (to check for any leukemia cells creeping back in) and all day chemo treatments. Please keep her in your thoughts and prayers this week. We will need to do these horrible injections daily too (poor baby girl!)
We are thanking God for an incredible day and showing us how he can heal our little fighter! We are so thankful that her test results proved that the chemo was working and few leukemia cells were evident in her blood sample last week. We are praying for a better appetite, for chemo not to affect her, and for her to fearlessly fight on! We are so thankful that people are still buying the PRAY4K shirts, and taking pictures wearing them! (We love seeing those!) We are thankful that so many people are fighting with and praying for K & us on a daily basis. It is evident in her behavior and test results that God is listening to your prayers! We are standing firm on the thought that Kaylee WILL beat this! There is no other option that we will allow in our brain! Thank you for sharing K’s story and spreading the word to your churches, bible studies and friends! We need every single one of those prayers! THANK YOU!! We continue to remind ourselves, Gods got this!!
Have a great week!
Note: to see our updated pictures, you can look for Kaylees battle on Instagram :>
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.”
5 thoughts on “Phase II begins…”
This is Sharon Bryan with CURE. We met at the hospital last month when I was there for the Open Arms dinner on a Thursday evening. I remember that we have an “East Cobb connection”…my kids went to Lassiter and, if I am remembering correctly, you and your husband went to Walton and Pope. 🙂
I’ve been following your blog and just wanted to let you know that you and your family are in my thoughts and prayers. I know this is tough. My son was 14 when he went through treatment and it was hard then, too, but I can’t even imagine having to put my baby through it. I’m just thrilled that you got the Sesame Street Live tickets!! Am so glad that you are able to go and have a fun day.
Take care and I hope to see you soon. I’m at the clinic on Wednesday mornings so if you are ever there that day, be sure to look for me. I’m usually back in the infusion area.
Hi Sharon! What a good memory you have! We do have the East Cobb connection! 🙂
The Sesame Street tickets were so appreciated! She had such a good day! Last night was terrifying. I was on the phone with the on call Dr a few times and we are so thankful the Zofran worked!
We are schedule at the clinic for Fridays now, so we won’t get to see you. Thank you so much for your prayers!! We have to do another injection tonight & know to give her Zofran ahead of time & will pray she sleeps ok.
Praying for a good night’s sleep for ALL of you. I know it is exhausting. Take care.
Praying for your sweet baby. She has been through so much in her young life. Praying for strength and a good nights sleep for all of you. Funny connections. I live in East Cobb as well and know Sharon Bryan. We worked at a preschool together and she taught my daughter.
Thank you y’all for your prayers! The injections are something no child should ever have to get! It’s so hard to try to get her understand that we don’t want to have to give her a shot, causing her pain but it is something we have to do to make her healthy again 😥