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November
20
2020

November 20, 2020: Heaven in Color

Kiley's sweet daddy went to be with Jesus on Friday, November 6, 2020 in the early evening.  He left a big hole in our hearts.  On Saturday, I started dreaming...and I'm quite a last minute, impulsive type person with big dreams.  We started dreaming about going to the Grand Canyon.  It's somewhere Kiley requested to see early on in her diagnosis.  Because of Mike's illness we couldn't be impulsive anymore.  We couldn't just drop everything and go.  So...after his funeral, we came home.  I bought plane tickets at 1:30am Wednesday morning and we were on that plane by Wednesday afternoon.  We flew into Phoenix (the girls and I and my sister) rented a Suburban, drove aimlessly finding hotels along the way...at one point we thought we might be the inspiration for a Criminal Minds episode while trying to find a crazy Airbnb (got out of there quick!) In all seriousness, we enjoyed the Grand Canyon, Sedona, and Mesa...but for Kiley, she met God at the Grand Canyon.  

Emotions were running high throughout the day.  It was cold, girls were tired from the exhaustion of the last few weeks.  But I love how God meets us in the middle of our mess.  We stayed through sunset.  Some of the girls got cold (there was snow on the ground) and went back to the car.  I said I was going to stay with Kiley and let her soak in the last bit of light in the Canyon until she was ready.  I will never forget that moment with her. The most precious thing.  When we got back to the car later, I penned everything I remembered her saying. Picture her standing at the edge of this vast landscape and meeting with her Savior.

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The skies are not so blue at our house. —Kiley
It’s soooo awesome. (Quoting Mike)—Kiley 

It’s what heaven will be like. His mighty creation. That’s why I want to travel to see all God created...unless you can see it from Heaven. -Kiley

As we were watching the sunsetting over the Grand Canyon, Kiley and I had a few minutes alone. 
See the rainbow? (Referring to the way the sky and the Canyon had a beautiful array of hues.) It reminds me of God’s promise. 
What promise is that?
Well, to never flood the earth again. But it also reminds me of God’s other promises...like eternity. 
Do you see the purple, blues, yellow, orange and pink? And how you can see those colors on the rocks too?
It makes me think of eternity. If people accept Christ they can have this eternity. I wonder if dad sees what we see. He can see so vividly again since he couldn’t see so well before. Some people think of heaven in white. I think it’s in color. God paints his best pictures in color. And people. God paints people in color. And God makes us all beautiful. I think this is the most beautiful thing I’ve ever seen. ️—Kiley

Do you know what song has been in my head all day? 
So will I” by Hillsong United (and she starts singing it )
I had Goodness of God in my head all day (a song from Mike's funeral)

As the sun was going down, there was a lady that saw us trying to take a selfie. She kindly asked if she could take a photo for us. She snapped the pic and handed us back our phone. I kept feeling the Holy Spirit telling me to go thank her. To tell her that her random act of kindness was more than a simple gesture. To tell her that I would always treasure that captured moment. The girls started walking to the car and I listened to that voice. I watched as the same lady offered to take someone else’s photo. When she was done I walked up and shared...
I just wanted to thank you for taking our photo. That random act of kindness was so much bigger than you know. You see, my daughter has brain cancer and the Grand Canyon is something that she wanted to see. (Oh....let me take more!) I assured her that we had plenty and I truly just wanted to say thank you. Then Mike was on my heart and I shared that my husband had just died last Friday of the same kind of cancer. She well...used the Lord’s name in vain as she absorbed the magnitude of all I had just said. Then I said “actually He’s the only one holding me up right now.” She then put her hand over her mouth realizing she had said JC. “I agree, “she commented. “All of this is absolutely beautiful,” I added. “It sure is. “
I’m not sure what will come of that act of obedience on my part, but I listened and the conversation was quite simple but the impact could be huge. 
Thinking back to Kiley’s comment, I do wonder what the view is like up there. I think about all that Mike is experiencing.  

Kiley said:
I was mourning my future but my future is eternity. I think I’ve made that transition to think like dad was thinking. I don’t know why the Grand Canyon popped in my head when I was diagnosed but I think I’ve made that transition now. I don’t know if I’ll be like dad or I’ll be healed or worse. But I’ve made that transition and have been thinking about eternity and sharing Christ when I can. 

I don’t know how anyone can see the Grand Canyon and not believe in God. - Kiley 

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I recently shared with a friend that my relationship with my daughter reminds me of the story of Abraham and Isaac in the Bible.  God asks Abraham to sacrifice his son, Isaac.  Abraham obeys God and begins to make the trek to the alter with his son.  As Abraham is about to sacrifice his precious son, a ram is provided in the thicket.  Abraham's obedience to his God, his whole heart, was what God was really asking for.  I feel like Abraham... except God is not asking me to take my child off the alter.  My heart.  I'm still obeying. I promise you I am. 
What's even more precious is that Kiley is willing to lay on the alter.  She has an eternal perspective and I'm so thankful that we had that moment...that mountain top experience to meet with our Lord as Kiley had a heart check.  
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Little did we know God was preparing us in that moment for our week ahead.  We returned from our trip late Sunday evening.  Monday morning Kiley had a tele-health appointment with Dr. Salacz (who is moving and will no longer be our doctor).  Tuesday Kiley had an MRI.  Thursday, we were at Children's Mercy with Dr. Ginn as he shared the results of that imaging. 
The gut punch is that our Kiley may be joining her daddy, but more importantly her Savior, sooner than we anticipated.  Her tumor progression looks like it tripled in size.  There's a small ounce of Earthly hope that some of what we see is pseudo-progression (fake progression, more radiation effect)...but really?!? I'm a dreamer, but also know when to have a reality check.  The pressure in Kiley's brain is causing bulging into the opposite hemisphere.  She's experiencing headaches and some fatigue (like keeping up at the airport).  She also complains of some memory loss such as not remembering her favorite Starbucks drink (and she worked at Starbucks for two years). Overall, you wouldn't know she's sick unless she takes off her hat to reveal her scarred scalp and the precious hair starting to grow back in.  But...the doctor says..."in another month...she may have a few more months."  
I inquired about another trip close to Christmas. Wondering if Kiley would keep her endurance for another adventure. He said, "I hope so."

Kiley has peace that surpasses all understanding.  Me? We buried Mike today.  I've had several chats with God.  I really want a ram in the thicket to show up! 

Much love to you all,

Staci, Samantha, Kiley, Avery, Addison & Mackenna

PS: At the moment, we can't think of anything we need.  Our fridge is full and are hearts are heavy.  We covet your continued prayers at this time.   (On the photos, the image on the left is the MRI from this week.  The image on the right was from a month ago.)

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October
29
2020

October 28, 2020: update

No clot. Going home. Hopefully shortness of breath was a side effect of the med she had to take over the weekend (its a listed side effect so she will stop taking it.)

Answered prayers for sure. 
Much love to you all 

October
28
2020

October 28, 2020: Prayer request

We love that Caring Bridge is a tool to share our prayer requests among friends and family. We are all “family” in the body of Christ and feel so blessed to be connected to all of you. 

This afternoon Kiley had an appointment with Dr. Salacz at the University of Kansas Health Systems. We were seeking a second opinion or other options for treatment. We love the care we’ve had a Children’s Mercy...but also good to explore options since she’s no longer a candidate for the trial she was on.  Kiley has been short of breath over the weekend. This is a possible side effect of a med she was on so we weren’t overly concerned. However it had gotten worse. She’s out of breath going up or down one flight of stairs or even talking too much. She’s also been extremely tired after completing her 5 days of Temodar on Friday. 

Long story short... Dr. Salacz ordered a blood test ( D-dimer) to check her levels to rule out a blood clot. This test came back highly elevated. We were already home by that point so they told us to head back to the ER. We are at KU downtown. I’m able to be with her 🙌. We are currently waiting for them to order tests to confirm a possible blood clot  in her lung. 
She’s just chilling and watching a movie while we wait. 

As far as cancer treatment with Dr. Salacz, we haven’t made any big decisions. We need to wait 3 weeks for the Temodar to clear her system before starting different and/or new dosings on meds. Will also have an MRI sometime to monitor changes. 
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The resident physician was just in and they ordered a battery of tests. We will update when we know something. 

Thankful Mike’s brother is here helping care for Mike during times like these although it sure was hard to say goodbye to Mike this afternoon as Kiley and I headed to the hospital. (Kiley would say it was hard to say goodbye to Cole.💕)

We appreciate your prayers. 
Much love,
Mike, Staci, Samantha, Kiley, Avery, Addison & Mackenna 

PS: Friends, rather than blowing up Kileys cell while she’s trying to watch a movie, email instead if you’d like to reach out at fightforkiley@gmail.com

October
16
2020

October 15, 2020: Update

"A picture is worth a thousand words." This phrase makes more sense to me today. Kiley had an MRI at 8am.  By the time she was done it was 9:30ish and we had a 10am appointment with her neuro-onchologist to go over the results.  



I'll start with the gut punch- Kiley is no longer a candidate for the trial she was on.  Since there was a "change" since her last MRI on July 3 (measurements were 50% or more of a "change"), then she no longer qualifies for the trial.



Follow me for a second.  Radiation can leave what experts call "radiation effects" which leaves the brain matter on MRI imaging to look rather hazy.  Kiley's radiation effect was rather large and although the doctor suspects that the hazy imaging is "radiation effects" it's something that we just have to watch and monitor in future MRI scans to confirm.  It's a bit frustrating that they were quick to eliminate her from the trial and measure what could be radiation effects and count that against her as "change." Her next MRI is in 6 weeks. Our prayer is that her next MRI looks much better as the "radiation effect" subsides.



Furthermore, it looks as if there was residual tumor as part of her initial surgical resection.  It was deep and the surgeon needed to be careful near important motor functioning areas.  Today's MRI shows what they believe to be deadening of tissue on the residual tumor.  (Remember when we had to "pray for a donut" during one of Mike's MRI's? Kiley's doesn't look like a donut yet.) 



Truthfully, we are frustrated and a bit numb.  We wanted there to be nothing! Rather, there's hazy brain matter and a tumor looking thing in the surgical field.  I'm not questioning the surgeon...I think he did a great job with Kiley's care.  I just hate cancer.  



So moving forward, Kiley will begin Temozolimide (Temodar), a chemo med, on Monday. She will be on a 5 day cycle with the rest of the month off.  Then the dosing starts all over the next month.  There are no trials that she qualifies for at CMH unless she has "recurring glioblastoma multiforme" which she doesn't because there are no tumors in other spots in her brain.  We may consider looking into other treatment options (trials) in other places, but Kiley really would like to remain local. We have such a great local support of family and friends that make this journey a bit easier as they walk it with us.



--"The Lord is my strength and my shield; in Him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to Him." Psalm 28:7

September
26
2020

September 26, 2020: Redefining Strong

This past week has brought about several changes. First of all, let’s celebrate.  I’m sure you'd appreciate a pick-me-up within these emotional posts!  Drum roll...KILEY IS DONE WITH RADIATION!! It’s already been 6 weeks.  She rang the bell last Tuesday, Sept. 15, symbolizing the end of radiation (some people thought that meant you’re in remission...we wish!) The ringing of the bell is the celebratory sound that radiation is completed! No more driving downtown each morning, although the doctors, nurses, radiation techs, front desk staff and the parking attendants were wonderful.  I think the parking attendants liked Kiley’s keychain that read: “God is within her. She will not fall.” 

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On Monday, a sweet friend came to our house and gave haircuts to Mike, Kiley and Samantha too. When Kiley was out on the deck getting her hair trimmed off the back of her neck, Mike was sitting in his wheelchair watching through the glass sliding doors. He looked up at me and gently asked, "Is she going to be okay?" (Insert my gut punch...when Mike watches from the side lines seeing his sweet daughter's scar across her head, her hat off, and her exposing her reality to the hairdresser, he was really seeing her. In all seriousness...he was sincere with his question...he didn't remember.) Using my quiet, sensitive voice, "Ummm, Mike, she has the same diagnosis that you do." "Oh (sad voice), did we know that?" "Yeah. But she's okay today. She's feeling really good." That statement gave him a bit of relief in the midst of Dad heartache.

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Recently Kiley bought a shirt from EtchLife that reads: Redefining Strong. This pretty much sums up Kiley at this point. Kiley's strength isn't how the world defines strong. It's the power of God working through her that allows her frail body to redefine strong and become a vessel for something much greater than herself. Does it make her journey any easier? No. However, God's power is made perfect in Kiley's weakness and we are anticipating God's perfect craftsmanship as we watch His plan unfold through her life. In 2 Corinthians 12:8-10, Paul pleads to God to take away his suffering."Three times I pleaded with the Lord to take it away from me. But he said to me, "My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me. That is why, for the sake of Christ, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.…"

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Kiley now has a month break.  She’s grateful for a break from the chemo pills and anti-nausea meds.  She has her next MRI on October 15 and then the chemo regimen starts back up again.  We appreciate your prayers...our prayers for Mike have always been slower progression and more time.  I’d like to be bold, for Kiley, and pray for NO TUMORS! As one friend says, "pray for a stable scan." Pray for God’s peace to blanket Kiley...a peace that surpasses all understanding.  Pray that Kiley will continue to be bold with her faith as she shares her story, when given the opportunity.  She’s open to sharing Jesus without fear. Pray for hearts to be open as she shares.

Next week, Kiley is looking forward to a short get-away which we highly encouraged.  She’s taking off for Orlando to visit her Aunt Ashley & family.  Kiley had a Southwest voucher to use that would expire, so off she goes!  If you know Kiley well, you know she’s always liked Mickey Mouse.  I suspect that she’ll be posting some photos with Mickey at “the most magical place on Earth.” We are excited for her to experience some smiles and distractions (and yes, pray that Covid stays away...it’s not welcome at the Daniels’ house!) Pray for Kiley as she travels on Wednesday, Sept. 30 and returns Saturday, Oct. 3. Pray for her to be able to leave the heaviness of home and enjoy some much needed fun in the sun.

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          On the EtchLife website, there's a description of the shirt  "Redefining Strong."  I pray that it encourages your heart:

"In the midst of the daily grind, life can become overwhelming and leave us feeling like we just don’t have the strength.  It’s here that God invites us to depend on a strength that does not come from trusting in and depending on ourselves, but instead one that comes from Him and the power of His might.  Let’s be a generation that allows God to redefine strong for us; because if we do, we’ll find true peace and rest as He shows us that His grace is truly sufficient."

Much love,

One humbly proud mom

September
2
2020

Hills and Valleys

Hills and Valleys by Tauren Wells


I've walked among the shadows


You wiped my tears away


And I've felt the pain of heartbreak


And I've seen the brighter days


And I've prayed prayers to heaven from my lowest place


And I have held the blessings


God, you give and take away


No matter what I have, Your grace is enough


No matter where I am, I'm standing in Your love


On the mountains, I will bow my life


To the one who set me there


In the valley, I will lift my eyes to the one who sees me there


When I'm standing on the mountain aft, didn't get there on my own


When I'm walking through the valley end, no I am not alone!


You're God of the hills and valleys!


Father, you give and take away


Every joy and every pain


Through it all you will remain


Over it all!


 


These are only some of the lyrics, but this song is how I’ve felt the past few weeks. Radiation has really taken a toll on my body. Anxiety, tiredness, nauseousness, and hair loss are all things I am still getting used to. I mean it is still hard for me to even describe these things and the feelings that come with. I remember last week when I went to get my head shaved I was just filled with so much anxiety (something I never had experienced before my diagnosis). I asked all the “what if” questions, which I find myself doing a lot now. Something I’ve really had to learn is what is on the outside doesn’t define me. It is not the part that makes me, me. I am still the same woman I was before my head got shaved, before I was diagnosed with cancer, before my life dramatically changed. Right now I feel like I am still in the valley, but I have hope. I know I am not alone and God will help me get to the mountains. God has opened my eyes and has blessed me with so many opportunities to share our story. 


 


Earlier I had the opportunity to share mine and God’s story on Whitney Putnam’s podcast called A Big, Happy Life. It was such an incredible experience! I also have 2 more interviews lined up and I’m very very excited about it. One of the interviews is for 41 Action News!! I would not be able to have these opportunities without God and this story He has blessed me with. I truly feel that I am standing in God’s love and grace. God is on the move, He has been and will always be on the move!


 


With love,


Kiley Daniels

August
17
2020

Community, Beauty, & Intimacy

It has been a really rough week for me, I’m not going to lie to you all. All my friends left for college. I was supposed to be going to MU right now. I was supposed to do a lot of things that I will miss out on. It’s been really hard to say bye to everyone I grew up with and that has been here for me through the thick and thin. However, I’ve also been grateful for this group called 20 Somethings at PV. They are a wonderful group of young adults that meet at PV on Thursday nights. It has been really nice to be able to just be in community again, and they welcomed me in with open arms just like Jesus would. 

 

AND


I started losing my hair this weekend. It was really hard at first. I kept saying my hair is a part of me and I would be ugly without it. But with time I came to realize that I am beautiful with or without my hair. 1 Peter 3:3-4 says, “Your beauty should not come from outward adornment, such as elaborate hairstyles and the wearing of gold jewelry or fine clothes. Rather, it should be that of your inner self, the unfading beauty of a gentle and quiet spirit, which is of great worth in God’s sight.” We tend to always focus on our outward appearance but we should be focusing on our inward appearance. When was the last time you checked where your heart was at? When was the last time you let go and let God? When was the last time you actually didn’t ask God for anything and just listened? God has all the wisdom in the world and more, so if we listen maybe we will learn more than if we just talk His ears off.

 

Also, just in case you guys weren't aware, I started a Youtube channel. It is called Jesus Above Everything. Feel free to check it out! Below is the link to my first video.

July
30
2020

July 30, 2020: Radiation Day 1

This morning is day 1 of radiation for Kiley. We are headed to KU for treatment. We are thankful for the prayers and recognize this big answered prayer: Kiley was accepted into the trial yesterday. (The one that we originally thought she didn’t qualify for). There was a discrepancy in lab results between two different labs over the same test. Our neuro-oncology doctor at Children’s Mercy, Dr. Ginn,  appealed the trial decision and the lab results confirmed she was a candidate for the trial. 
Her treatment consists of:
Monday through Friday radiation at KU with Dr. Rotondo for the next 6 weeks (it’s a quick appt minus the driving)
Twice Daily Veliparib - pill form not infusion, this is a phase 2 trial med (Kiley has a weekly appt at Children’s Mercy with Dr. Ginn to monitor medication effects)
Twice daily Kepra- anti seizure medication (precautionary)
Also on anti-nausea medication 
Temozolimide and Veliparib will be used together post-radiation. 

We are thankful for your continued prayers on our journey. 
God’s got this!