August 25, 2007 at 12:58 PM EDT
I will post more information later to let you all know what transpired. At ~12:08 this afternoon Kyla became an angel in truth. I will post arrangements when they are made.
She is at peace and free.
Stephanie
| August 24, 2007 at 09:33 PM EDT |
The reason I asked who was up praying that early this morning was for this reason: at 5:42 this morning our phone rang for the third time. Three phone calls right on top of one another. Caller ID came up PRIVATE. There are only two people we know of that would call us with PRIVATE but they would never call that early in the morning. Each time Randy picked up the phone and said Hello there was only white noise.
We thought of one thing - Randy's dad was calling from heaven to tell us that Kyla was going today. As the day wore on, we knew today wasn't going to be the day but in three days [three phone calls] Kyla will turn 10. Those of you that have been on this carepage for quite some time know how things happen to us on birthdays and holidays. So perhaps Monday will be the day.
Now, here is another take on what came to my mind today. That at 5:42 this morning, God called us to say our prayer is going to be answered in three days. That on Kyla's birthday she is not going to celebrate her spiritual birthday, but her real 10th birthday and she is going to be cured!
It is difficult to know because we see with our eyes. We do know that Kyla is dropping some in her potassium because she is getting the muscle cramping again. Our gut tells us to take her up to Hershey to get her levels checked on Monday. We are also giving her water via a syringe in small amounts. We feel like we're starving her to death... I will pray specifically tonight for some guidance there in what we should do.
If there are any more messages out there from prayer warriors let me know! I wonder if the phone will ring again in the morning.
God bless,
Stephanie |
August 21, 2007 at 05:23 PM EDT
Post 1 of 2:
We were up bright and early this morning to get our family pictures taken. The cover for our proof sheet is up in the photo gallery. In a way it was very poignant and solemn but I wanted to have one last set of professional pictures done with our angel. Cindie does such an incredible job. And we even got Kyla with her eyes open for a few shots! They are supposed to be available on Leer's website, but the ID and password aren't working right now. I'll check on that so I can share the pics with you. It's very difficult to do a family portrait with Kyla in her current state, but we managed and she looks beautiful and peaceful. Randy and the boys wore their black suits with purple shirts and ties and I wore a purple blouse, in honor of our little princess. Kyla is dressed in her gown that she will be laid out in.
Yesterday began Week 5 of our 1-3 weeks left for Kyla's time. We continue to ride the roller coaster. There are times when her breathing is so shallow that we think “today is going to be the day”, and then Kyla turns around and starts breathing better again. LORD, I just want her to wake up and say, “I feel so much better, Mommy. Can I have something to eat?” There are more times when her eyes are open, and I think that is due to her no longer being on any medication other than her decadron. She does not appear to be in any pain, and I know she can still feel pain. When I bathe her and have to get under her chin it's very uncomfortable for her and she lets me know it. Today she even moved both her shoulders in protest when I moved her neck rolls. Randy and I just wish we could do a memory dump of everything she's thinking of these days and weeks. Is she asking God to heal her, or is she asking Him to bring her Home? I still don't feel that she's given us the “look” that she's done fighting. And so I continue to ask God to give us a miracle. While she still breathes there is hope. This is between Kyla and God. We will wait with her and take care of her as long as it takes.
 Yesterday we managed to go out for a while - all 5 of us. Kyla took her customary co-pilot position in the truck (the front passenger seat), and we ran some errands. We stopped by the church to get my teaching materials for Sunday School this year, but only one copy was ordered. Our next stop was at the Learning Source store in Camp Hill to pick up some items for Sunday School. We won't need any attendance charts for years to come! Then we drove over to the Capital City Mall and picked out a chain for Randy's purple cross. We took turns going into the different locations while one of us stayed out in the truck with Kyla. We also picked up our wallet-sized pictures of Kyla from Cindie and went to Hanover to get something from Lowe's and some Ritas. Once we finally made it home I made a meatloaf for dinner with mashed potatoes. Yumm!
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| 442 August 21, 2007 at 05:22 PM EDT |
Post 2 of 2:
Oh, I almost forgot! We also designed the scholarship we're going to set up early next year at Bermudian Springs High School. We stopped by the school and saw the superintendent to get the info we needed. It didn't take long to come up with how we want to set up the scholarship. Of course, it will be called the Kyla LeeAnne Miller Memorial Scholarship. We have some pretty specific criteria for consideration regarding GPA, career path, etc. And the scholarship will end in 2019. Ryan will be in the Class of 2019, and from that point on the students really won't know who Kyla is unless they had an older sibling in school with her or one of the boys. Since we can set the scholarship up however we want to Mac will get 50% of the fund in 2018 and Ryan will get the rest in 2019. But the boys have to meet some criteria, too, or else we'll select another student based on the original criteria. As far as I know the school's business office will manage the fund. If they can't I suppose we can just put the money into CDs or something then and manage it ourselves. The interest rates stink on CDs though.
 Last night we averted a major disaster in the house! We're getting quite a bit of rain these days. After we got home last night Randy went to get a tool from the basement and happened to check on the sump pump. The water in the pit was about four inches from the top, the water was HOT, the pump was on, but no water was leaving the pit! As Randy went to put in the old pump to figure out what was wrong with the new pump and get it exchanged at Lowe's (we just got the pump in April), he took a look in one of the pipes. Wouldn't you know it... a rubber bouncy ball was stuck in the pipe!! We almost buried Ryan before Kyla!! He was throwing the ball around about a week ago and lost it. I guess it rolled into the pit and when the pump tried to suck the water out it also sucked up the ball! I really don't mean that comment about Ryan, but the LAST thing we need is another flood in the basement!
Our hospice nurse was here today to check on Miss Kyla. Her lungs are clear and her heartbeat is regular. Her pulse was a smidge higher than the last visit, and she is still peeing. So, we wait.
Well, I guess that's it for now. I really should go and put some laundry in the washer and tidy up the kitchen. Just not really motivated to do anything.
God bless!
Stephanie |
Can you believe it?! Over 200 people signed up for Kyla's wake! How incredible!! I'm really tickled purple about it :) If you haven't signed up on the counter above, please do so. St. Paul's is getting everything noted for what needs done... we'll be ready for y'all. And this is just for the meal! The service is going to be standing room only; it just shows how many people Kyla has touched over the last few years.
I updated the photo gallery. Today I picked up the marker that Baughman Memorial made for Kyla's prayer garden. It's beautiful. Heavy, but beautiful. Randy brought it in the house since the garden platform isn't made yet. We took pictures of Kyla with it, so I posted those on the carepage. There's also a shot of Auntie Barbara in there with Kyla at Children's Hospital in Pittsburgh. It's a shame I wasn't able to get more family photos from the weekend, but the family wanted to give Kyla and us some space at the hospital.
For the most part Kyla's condition has not changed. She hadn't pee'd in about 48 hours so I thought her kidneys stopped. Her eyes are starting to get very shadowed now. This morning at 4am she was breathing so shallow that we thought today was going to be the day she went to Jesus. So we got her in the tub at 4:20, got her dressed and took her downstairs around 5:30. Randy and I got on our computers and around 7:00 we were snuggling with her on the couch. By then her breathing was back to a pretty normal rhythm. So today isn't the day. The hospice nurse was here, and Kyla's lungs are still clear. And then I checked her pull-up - and she DID pee! Soaked through her PJs to the pad on the couch! Last night she opened her eyes when we took her up to bed, and she REALLY focused on me and Randy. And then she YAWNED! Twice! She yawned again today, opened her eyes a few times while we moved her. I know that we're supposed to encourage her to go be with Jesus, but we can't yet bring ourselves to do it the way we should. We keep telling her how much we love her, and when she seems to be looking at us I tell her if she wants to keep fighting that's OK, but she doesn't have to fight for us. I want the decision to be hers and hers alone. Does that make sense? Because I'm still praying for that miracle for her! I can't stop! Not when there's still hope. My faith in God gives me that hope. Only when I know the end is here will I tell her to go be with Jesus for Mommy and Daddy. The nurse and pastor told us this could go on for a couple of weeks yet. Ugh! Not that I want Kyla to go, but honestly, it's exhausting just sitting around doing nothing and waiting. Yet on the brighter side it still gives me time to try to change God's mind, and I am grateful for that opportunity more than words can express.
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| 440 August 17, 2007 at 09:27 PM EDT |
POST 2 of 2:
Well, time to get going. Today was a Kyla-Movie-Marathon Day, where we put in movies all day that Kyla liked to watch. Right now she's listening to High School Musical 2. We also did another hand casting of Kyla's hand in plaster. It came out so awesome that it's too bad we can't reuse the mold. We'll be making some more tomorrow. Late this afternoon I ran out to the store with the boys. I'm hiding in my office room now because they just drove me nuts while we were out. I didn't want to be away from the house too long, but you know how it goes. I ended up at the memorial place first, then Hanover. I was gone for four hours and was not happy about it. But at least I got what I needed so I don't have to run out in the next day or two. I just want to be home.
Thanks to Uncle Steve, Anita and Sigma Kappa for your recent “gifts”! They are so appreciated. The Air Force Sgt. that visited us earlier this month stopped in with his dad, and the council of carpenters did a 50/50 drawing and split the money with us. That was go great! I was able to restock Randy's beer today.
Oh... and some last notes. I won't give specifics because I don't have permission, but please say some prayers for a young lady named Carrie. She is in Hershey going through pretty strong chemo and has developed a lung infection. And some of you wanted to know the name of the friend of Kyla's teacher who was just diagnosed with cancer. Her name is Maggie. I do have permission to post her name so that prayers can be said for her.
God bless!
Stephanie
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August 15, 2007 at 05:32 PM EDT
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The last time that Kyla spoke out loud she said she hoped that she would be able to stay with us for a long time yet. We are surrounded by people speaking to us about preparations for death. Although we have given many of our plans for Kyla to the people asking, I am still praying in my heart that she receive her miracle on earth. For her last words were “I hope so.” And so for Kyla - not for me - do I continue to ask God to change his mind and spare Kyla's life here on earth. She briefly opened her eyes today a couple of times, and even though I don't think she could “see” I told her several times that I was still asking God to change his mind because that is what she told me she wanted. I continue to read scripture to her and pray with her. It does bring Randy and me much comfort knowing that Kyla is not in any pain. Even though her breathing goes into different patterns throughout the day her lungs are still clear.
I may write more later tonight, but for now I'm going to close out this post. I am actually making something for dinner - nothing too complicated. The Aiello's are coming over tonight for some prayer time with Kyla.
You will also notice below a new counter. I will be displaying this on my posts. I only got a count of about 40 people when I asked for emails on who would attend the meal after a funeral service. So, now I am going to use a counter. For those of you that are planning on joining us for a meal after the service, please click the counter ONCE PER PERSON ATTENDING. This is NOT a hug counter, but a counter to see how much food needs prepared. Only click this counter if you know for sure you will join us for the meal. All are welcome to join us, but we will only prepare enough for the number of people that click the
counter.
God bless!
Stephanie |
August 13, 2007 at 09:59 PM EDT
OK, Gang. Just a really quick update. I'll post more when I get time. Here's the story...
On Saturday we decided to drive out to Baden, PA, to surprise my mom's family. They were having a party for the oldest brother who is turning 70. About 20 seconds after we got Kyla into the building she went into a full-blown seizure. 911 was called and we were transported to Sewickley Valley Hospital, which is near Pittsburgh. Kyla's seizure lasted a little over an hour. Once they got her stabilized and had a ct-scan and chest x-ray done she was transported to Children's Hospital in Pittsburgh, where we stayed until today.
The short story (in my words and opinion) is that since the cancer affects the part of the brain that controls body temp part of her body spiked a fever and this caused the seizure. There is a possible sign of infection with the shunt, but the cultures are not done growing and the liklihood is small. Kyla also had a dangerously low level of potassium so they pumped her up with that and anti-biotics.
After discussing what we wanted to do, our goal was to get Kyla back home. So here we are. Kyla's journey is about at an end. Her breathing is changing and is even a bit different from earlier today. Her face is pale now and getting cool. Our little angel is going to get her wings soon. I'm still praying this is not so and will continue to beg God until she takes her last breath.
I need to go. I know it's late, but I want to bathe her to get all the goop out of her hair. Keep praying, prayer warriors!!
Love,
Stephanie
| August 10, 2007 at 04:55 PM EDT |
 Hey, all! I just wanted to make a quick post. Recently we've seen some people post messages to the Message Board, and they include personal information like phone numbers. For your own privacy, please do not post this kind of information on carepages. My contact information / email address is listed under the Contact Info link; you can email me personally if you want to give me a phone number or an address. This is for your own protection. I've been copying messages with that kind of information to a document and deleting those messages from the Message Board. Thanks for your cooperation in this.
Miss Kyla has been sleeping most of the day, and she has not really eaten anything yet. We got a new pain killer for her and I gave her a dose. Well, it zonked her out. So once it wears off we're going back to the motrin and just giving her the pain killer when she absolutely needs it. I gave it to her because she slept so good during the night that she didn't have any motrin in the middle of the night.
Just two more quick things to say. I put away all of the new purple and black clothes that I bought in preparation for the worst. I don't think we're going to need them:) And I saw another sign today in the sky. It was a thumbs-up cloud!
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| August 09, 2007 at 05:11 PM EDT |
 The last 24 hours has been so wondrous for us. At about 7:30 last night Kyla totally surprised me by talking! I was feeding her and her leg kept cramping up. So I told her something along the lines that since she couldn't tell me where the pain was it was hard for me to find it. When I said I was “doing my best. OK?” she answered back, “OK.” I was floored! What a gift from God that we received last night! I also got a “Yes”, “I hope so”, “Wow!”, and “Hi, Daddy,” out of her! She was awake for about 2 hours last night. She even went outside in her wheelchair for the prayer vigil. By the way, the “I hope so” was in response to me asking her if she was going to stay here with us for a long while.
 Believe, everyone. Believe in the miracle. Forget what you see with your eyes. See with your hearts. Read the Word, know the Word, trust the Word. Remove the doubt from your heart because of what you see with your eyes. I said a long time ago if there was anyone that could beat this ugly disease it will be Kyla. She is fighting strong! Her vital signs are still excellent. She is now able to eat three small meals a day (baby food) and we are getting more fluid into her now to re-hydrate her. Today, she went to lunch with us to Hoss's! And she is moving her bowels again!
I believe, LORD. I believe that the miracle is starting LORD. It began by seeing the mark of the angel on her arm. My faith in You is abundant, LORD. Victory will be Kyla's, LORD! We praise Your name, LORD, and thank You for Your mercy.
Your servant,
Stephanie |
| August 08, 2007 at 02:51 PM EDT |
Post 1 of 2:
 This morning Kyla had the mark of an angel on her upper right arm. It was upside down. The head was the shape of a heart and the wings were long and closed like a larger heart. I know that the mark was caused by the way she slept on her arm, but I just don't believe in coincidences anymore. I haven't for some time. The mark of the angel on Kyla's arm tells me what I have never doubted... that she is wrapped up in God's love. Kyla also squeezed my fingers this morning to tell me she is still fighting to live. She is not giving up yet. She recognizes that she is hungry, but she can't eat a lot. We can get her to eat one jar of baby food twice a day, and we can get her to drink one or two bottles of liquid a day as well. The breath of God is sustaining her. For the most part her color is still good. Her hands or feet get cold at times. She feels pain again but it is not as severe as it was a week ago. We gave her one dose of morphine last Saturday but have not repeated it since. We have seen that when Kyla is in a brief period of being alert she can focus her eyes a little better on us. And she can still give us her Kyla smile. Her vital signs are still good; there is no sign of imminent organ failure.
We have still been making preparations, though. We all have our clothing picked out. On Sunday our pastor gave Kyla the Lutheran equivalent of last rites. It was later that evening that Kyla began to pull out of that coma-like state. I have never met a stronger person than Kyla. She continues to amaze me.
I am going to include a new slide show of some recent pictures that we've taken. We snuggle with Kyla in bed until after 10 in the morning. Then we usually put her in the shower. After she's dressed we take her downstairs to the couch, where she stays until it's time to go back up to bed around 9:00. She loves being snuggled with. She loves listening to scripture and to princess stories. Sometimes we take her out to the pool to float in her pool chair. She really likes that.
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| 433 August 08, 2007 at 02:50 PM EDT |
Post 2 of 2:
I have been setting my alarm to wake up at 5am these days, but I have not needed it. I'm still waking up at 4am-ish, so I've been opening my study bible and reading to Kyla for at least 30 minutes. This morning I read her the first six chapters of John. I have many devotional books that I've been reading, but I am reading scripture to her in those early hours and then praying silently afterwards. Tonight there will be a prayer vigil outside our house. Here is the article from The Evening Sun:
A candlelight silent prayer vigil will be held tonight at the home of Kyla Miller, a 9-year-old Lake Meade girl who is dying from brain cancer.
The vigil will take place from 8:30 to 9:15 p.m. outside the home of Stephanie and Randy Miller, 16 Burnside Drive.
Those who participate are asked to cover their cups or globes with purple wrap or marker so the light will shine in Kyla's favorite color.
I will be outside during the vigil as well - using a flashlight covered in purple seran wrap. Tomorrow night I am going to a healing service in Seven Valleys - the one I took Kyla to twice before. I am going to ask for intercessory prayer. Last evening friends of ours came over to the house and we did a prayer circle for Kyla, too. We read her scripture and then prayed from our hearts. We continue to pray for full healing for Kyla.
Lastly I wanted to let you all know that Randy has decided to stay home from work. I'm glad he came to that decision. This is a time where we need to stand together as a family. And Kyla needs him as much as I do. There will be a financial burden because of this, but the Lord has provided for us thus far and we trust in Him to continue to provide for us. The Blue Knights are sponsoring a ribbon sale for Kyla. I don't have the details of that yet, but they just voted on it last night to sponsor the sale. The Knights of Columbus (I think Abbotstown) has been thinking of doing a spaghetti dinner, but I haven't heard on that recently. I got a call from another church this morning that would like to donate any money raised during a fall festival in October to Kyla's fund. So these little things will help. But Randy's place right now is here at home with us.
I'm going to close out this post now or I will never get it posted to the carepage. I have to get outside to do some trimming and mowing for the prayer vigil. Love to all...
Stephanie
2 Kings 20:5 "I
have heard your prayer, I have seen your tears, surely I will heal
you."
| August 07, 2007 at 02:34 PM EDT |
I know I have been very remiss with not posting any updates. I started to draft one but just have been snuggling with Kyla. Kyla seemed to only be in that coma-like state for about 22 hours. She is waking up for very brief periods again and taking in a little nutrition. We are sticking with the pedialyte/pediasure stuff but have now added baby food into the mix. I will update more later.
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| 431 August 05, 2007 at 11:31 AM EDT |
Another quick update to let you know that Kyla is resting very peacefully. No pain meds - she won't open her mouth. But she has no pain right now. Not even when we got her out of bed and into the shower.
I do want you all to know that I am not giving up! Call me stubborn, but I told God this morning that I refuse to accept NO for an answer for divine healing.
Thank you all for your continued prayers. Never give up! That is what it means to have faith! Keep praying!!
Love,
Stephanie
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| 430 August 05, 2007 at 05:28 AM EDT |
This will be very short. We believe that late last night Kyla slipped into a coma. We are asking at this time that there be no more visitors to the house. I know that Kyla is strong, but I believe this will be a quick and painless journey for her. You cannot imagine the anguish that Randy and I feel at this moment. My heart has never hurt this badly before.
Stephanie |
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