Sunday, April 29, 2007


[big sigh]

In many ways this weekend was good. Bucketloads of bright sunshine can sear through dingy, gray clouds like nothing else, both literally and figuratively. Chad helped Jordan Sheetrock 90 percent of Jordan & Lacie's basement. Ran errands for Dad. Mowed for Mom. Wedding shower for a cousin. It's feels good doing stuff for others, seeing the progress that giving makes.

Normal still feels numb, though, almost as if we're "playing normal." Sunshine's underbelly hangs shadows on us, a cooler version of what pours upon the rest of the world. And no matter how you try to distract yourself, reminders pop up like dandelions. The living room window at Jordan & Lacie's new home perfectly frames the neighbors' two very young children riding bicycles. Another neighbor has a brand new baby. Kyrie's soft-bite baby spoons are still in the silverware drawer. An end cap in Target displays glittery, girly Mary Janes. Oh, the list goes on and on.

There's a Johnny Cash lyric that sings, "I taught the weeping willow how to cry," and it seems as if we're all experts now on liquid pain. Drop by drop, I'm sure Jordan and Lacie could water Kyrie's flower garden with the tears they've shed. Weeping is the only self-producing release valve that I know of for the pressure sorrow causes. It builds and builds, starting with the ache in your gut or the golf ball in your throat. You feel it rise into your lower jaw as you try to bite your lip. The stinging in your nose and burning behind your eyes signal your broken heart to pump pain from itself, through your blinking eyes, spilling down your cheeks and onto your steering wheel or your pillow or your desk or your lap or your spouse's shoulder. Maybe it's a quiet, shaking cry. Or maybe it's a guttural, sobbing cry that knocks the wind out of you. For this kind of sorrow, the sorrow that the entire world says is the worst to experience, one bout of crying may subside, but another undoubtedly is on its way.

As much as we don't want to keep waking up when we're enduring long-term pain, we do; we keep waking up. Amazing, isn't it? We keep waking up, we keep breathing, even though we think it would feel better not to.

In my opinion, suffering's only peace offering is grace, a gift hard won and often gladly exchanged for never having been pained at all. This grace is what allows others who have greatly suffered to enter that sunny world again. It's what raises their arms to hug someone who has just begun suffering. And as I see it, the only way to arrive at some sort of peace or grace is to barrel through. There is no shortcut or detour. Maybe this means crying 100 times a day if you have to or shouting Kyrie's name into the sky or shoveling up your yard or avoiding children for awhile or keeping her photo in your pocket or talking aloud to her or even yelling your prayers to God. The good, bad, ugly and holy. Whatever gets you through today, one day closer to her heaven.

Thursday, April 26, 2007

Long Weekend

Chad and I are motoring to Wichita today for a long weekend with the fam. Jordan & Lacie have worked on Kyrie's flower garden in their yard, plum full of pink flowering plants. Dad is working on his wall shrine for Kyrie. Chad is legitimizing some Kyrie-inspired ideas that I had hoped to share this week, but next week looks more realistic. I, too, have been working on some Kyrieness of my own, and it sounds like many of you are as well. Love all the walk ideas! Yes, yes!

Erin wrote something in her comment this week that has been echoing in my ears ever since I read it: Go, Kyrie, go. And so many of you have said that she's made you change your behavior in little ways, more appreciative ways. So I was thinking about all the little things I could do today that would honor a child, this child, your child. Came up with 100. And it's not BIG things that, honestly, we should probably be doing, too, like adopting crack babies and joining the Peace Corps and ending pollution. Just ordinary decisions that culminate into extraordinary goodness.

Oh! And since today is a Thankful Thursday, my itty, bitty thing for which I'm thankful is the color pink.

1. Hug.
2. Use your turn signal.
3. Grow flowers.
4. Pick up trash.
5. Go for quality not quantity.
6. Read.
7. Read aloud.
8. Pick a charity & donate consistently.
9. Pick a charity & volunteer consistently.
10. Take lunch to a friend.
11. Send a letter.
12. If you can sing, sing.
13. If you can organize, organize.
14. If you can paint, paint.
15. If you can care, care.
16. If you can encourage, encourage.
17. If you can build, build.
18. Take photos and give them to your subjects.
19. Extinguish blight.
20. Wave to your neighbors.
21. Stop gossip.
22. Take extra flowers to a nursing home.
23. Organize a clean-up effort.
24. Buy local.
25. Ignore yucky “entertainment.”
26. Learn a craft.
27. Teach a craft.
28. Memorize and pass on your favorite poem.
29. Memorize and pass on your favorite psalm or proverb.
30. Take your car to youth car washes.
31. Buy something at a bake sale and take it to someone lonely.
32. Plant trees.
33. Remember that someone’s birthday.
34. Share your garden’s produce.
35. Visit.
36. Look for a child in need to whom you can give your child’s clothing.
37. Hold the door open.
38. Make a new friend.
39. Smile.
40. Let a car into your lane.
41. Rescue a mutt rather than buy a pedigree.
42. Eat dinner together at the table.
43. Laugh out loud.
44. Examine your “latte factor” and decide where that money could be better spent.
45. Comfort the sad.
46. Encourage the disheartened.
47. Conserve.
48. Hire an adult with a developmental disability.
49. Donate blood.
50. Get & use your library card.
51. Become a “block parent.”
52. Donate coloring books to hospitals.
53. Shovel snow or mow the lawn for an elderly neighbor.
54. Mentor.
55. Recycle.
56. Attend high school theater productions.
57. Cook a homemade meal for your family.
58. Teach your children to cook your favorite recipe.
59. Pick & master a new hobby.
60. Teach your hobby to children or to the community.
61. Give a “thank you wave” when someone lets you into their driving lane.
62. When it comes to stuff, remember that less is more.
63. Notice.
64. If you’re feeling bad about your behavior, apologize.
65. Use your manners, i.e. please, thank you, excuse me, etc.
66. Listen.
67. Listen to another perspective.
68. Listen to musical virtuosos.
69. Thank a farmer.
70. Thank a custodian.
71. Thank your parents.
72. Thank God.
73. Get interested in something that’s meaningful to you and good for others.
74. Drive slower through school and construction zones.
75. Have patience when driving slower through school and construction zones.
76. Don’t assume the worst about someone.
77. Give another family a Thanksgiving meal.
78. Be a Christmas angel to those in need, even it means having less for yourself.
79. Discuss the bible.
80. Choose to work with joy.
81. Assume nothing about another’s character by his or her clothing or hairstyle.
82. Bless a sneezer.
83. Make yourself feel someone else’s pain.
84. Prepare.
85. Choose one day of the week that’s TV free in your home.
86. Accept gratefully, even if it’s less than you expected.
87. Be careful with your words.
88. Take 10 minutes to think about someone else’s life.
89. Recognize and nix manipulation and corruption.
90. Walk for those who can’t.
91. Pray.
92. Don’t jump to conclusions.
93. Research and appreciate your ancestors.
94. Allow another’s path to be different from yours.
95. Right a wrong.
96. Picnic.
97. Go fishing.
98. Appreciate.
99. Be authentic.
100. Do a good work without expecting anything in return.

Wednesday, April 25, 2007

Something different.

You've probably noticed the new banner. Jordan asked if I could change it. So difficult.

Love seeing the seeds of action being planted. Yes, please, if something settles onto your heart as an idea for doing good, please do it. Frankly, that is the sole source of comfort I'm finding lately.

A dear friend of mine called this week for a long, tearful, soothing chat, and she said something that I haven't stopped thinking about. Maybe you will agree. We talked of different loved ones who have passed on and how we still love them and think of them often, but she said, "Something about Kyrie's passing is different." She says that she can't stop thinking about Kyrie, Jordan and Lacie, and that most of each day during the past two and a half weeks have been spent crying and talking about Kyrie with people who come into her office at her church. These people--again, people who've never met Kyrie--are mourning, are touched in a visceral way. Commentators here on this blog are feeling that, too.

Something different.

Getting back to work for me has been strange. Just a few minutes ago, a freelance designer came into my office smiling and asking about the beautiful little girl in the photos that I have hanging on my bulletin board. I said, "That is my niece." I couldn't bring myself to say it in the past tense.

I'm not the same person who came to this office last month. I'm different. Everything else, though, is still the same. Some days I resent business as usual. Yesterday at a stop light, I nearly got out of my car to pick up and throw back the cigarette butt that the driver in front of me flicked from his window. Never one to allow a lot of schmucky junk into my brain, I now have zero tolerance for materialistic commercials, belligerent radio hosts or plain, ol' greed. I just don't have room for that stuff when matters of life and death prevail my thoughts.

Still wrestling with God's promises, but most days there is a moment where I am awash with peace when I think of Kyrie, like a divine surf swelling and rolling up and over my confusion then taking it out to sea. I hope that tide will erode today's hard feelings.

Although I may never be convinced of the price Kyrie paid for me, for us, to do better, there are many good deeds being worked in Kyrie's name, just like Susan's annual Easter bunny visits. Did you know that Jordan's LoveBox colleagues collectively donated 51 of their own vacation days to him? What an amazingly generous way to help him and Lacie through the aftermath. And members of Aldersgate Church sewed together a prayer quilt for Kyrie. And a talented knitter from Cheney's United Methodist Church hand made a prayer shawl for Lacie. And the owner of Fringe Salon is leaving the door open for Lacie's position; whenever she's ready to come back, she can. And the quilt raffle is still continuing as planned to help with those looming medical expenses.

Good stuff.

And maybe that's what this site can become: a repository for documenting good works. Wouldn't that be great? How wonderful it would be if humans could get addicted to doing good instead of any number of the downward spiraling vices.

More ideas to share tomorrow.

Monday, April 23, 2007

Kyrie's "greater purpose" begins.

Several weeks ago, I received an e-mail from my beloved middle school art teacher, Ms. Frakes, who now works in the Andover school district. A friend of hers, who happens to be the grown daughter of my dad's closest neighbors, dresses as the Easter bunny each year in Clearwater, and she was asking if Kyrie would like a special visit on Good Friday while in the hospital. This was before the MRI. Yes! Jordan and Lacie thought Kyrie would really love something like that.

Susan (a.k.a. Easter bunny) had been keeping up with this blog and had everything set up with Wesley for her visit. The following is a portion of her subsequent e-mail:

Then...the news came that Kyrie was going home on Thursday. My whole mindset changed. I just couldn't seem to think of anything else but your sweet niece and family. And the tears came and went. Came and went. I called the hospital to see if Renetta had told the other kids that the Easter Bunny was coming on Friday night. She said no, she hadn't. So I told her I just didn't feel I could do it. I apologized. And begged out. But...that did not dismiss the thoughts of Kyrie for me. I slept on it. Tossed and turned. Played it over in my head. And finally came to the conclusion on Friday morning that I could do nothing for Kyrie directly, but there were 28 other children stuck in the hospital over Easter weekend and I could do something for them.

So I made the call to the hospital.

Tried to explain my crazy emotional self and ask if the Easter Bunny could yes, please...come visit on Friday night? Renetta graciously said yes! to Dollar Tree I went on my lunch hour. Found tons of fun stuff for the precious patients I was going to visit. And, at 7:00 PM on Friday night, the Easter Bunny and her friendly assistant, Ms. Frakes, arrived at Wesley Hospital to spread what Easter Cheer they could to some well-deserving children. I had a basket filled to the brim with stuffed bunnies and stickers, and Ms. Frakes had a big duffel bag over each shoulder filled with puzzles, posters to color, crayons, bath toys, butterflies on sticks,books, CD's, and misc. Easter items. the bottom of my Easter Basket, a picture of Kyrie Thome.

She would be with us this evening, even if in a small way. We mentioned to several staff members that we had originally planned on coming to visit Kyrie....and a soft smile and knowing look in their eyes appeared. I am guessing she touched the hearts of the staff at the hospital as well.

No one should ever "have" to be on the pediatrics floor. Ever. But....everyone should go to visit. To give something of themselves to those children. To read. To deliver toys. To dress up as something silly and entertain. Something. Because the appreciation that one takes from there, is humbling. Appreciation of health. Appreciation of patience. Appreciation of healthcare professionals who are able to do that job day in and day out. Appreciation for the parents who He has given sick children to take care of. Appreciation for Life.

It is usually a given that a smile will appear on a child's face when he/she sees the Easter Bunny. But the smiles that appeared on the adult faces, was just icing on the cake Friday night. The furrowed brow on dad. The pale face of mom. The tired eyes of a grandparent. We saw all of those. But to be able to see a relaxed smile on these burdened adult faces...and so very many "thank you's!"...made me wonder why I had hesitated to come. Maybe that is where the saying "Dumb Bunny" comes from?!

The experience left such a positive impression on both Ms. Frakes and me. Awesome!

Needless to say, I do believe that the Easter Bunny visit to the Wesley Hospital Pediatrics Floor was a success...and it was done with great love and in honor of, Miss Kyrie.

This is a tradition I hope to continue every year...and every year I will go knowing that a little girl who I never had the privilege to personally meet, led me to other little girls and boys who might need a little Spring cheer that an appreciative Easter Bunny will gladly deliver.

My thoughts and prayers are with you and your family Megan. How lucky Kyrie was to have you...and how lucky we all have been to have been touched by her.

Susan Jae Eckel
"Easter Bunny"

Friday, April 20, 2007

Collecting more thoughts.

Been thinking a lot about how much we value goodness and about what exactly it takes for people to change their lives. When does a story about a sick little girl stick to your soul in a way that changes old, self-centered habits?

How many times have we heard of a neighbor or distant relative or news story of someone enduring something tragic? How many times do we hear "life is short" or "make a difference"? We know, we know, but do we do anything about it? Don't we just sit on the couch/do our jobs/talk on the phone/push the shopping carts and watch a few other people make a difference?

Several of you have said, and I agree, that Kyrie's life has a greater purpose, which is to say that I, you, we, they, must be changed for the better, do something for the better to make her nebulous "greater purpose" true. Quite a call to action, no?

I work with a guy who lives in a rough part of K.C. I just found out over lunch today that each summer he coaches softball for about 30 kids ages 6 to 15. Just random kids. It's not an organized league. He buys them t-shirts (He's not even close to being "well off.") and gives them a place, time and something to do to keep them out of trouble. Just him. Just because.

Thinking about some exciting ideas that I'd like to share probably next week.

In the meantime, here's a story about an experiment designed to see if people notice and value goodness. Very telling.

Thursday, April 19, 2007

Amateur Theology

In the last week, I've thunk myself in circles. Round and round, I keep asking questions that no one can answer. I've asked God those same questions and still no answers. I consulted the good book and ran across passages of "ask and you shall receive" and "He will not forsake you," but sorrow has consumed my ability to fully believe that right now. And then I feel guilty for doubting Him.

No less than 76 prayers each day poured from my heart for Kyrie's healing, more than I've ever said for anything. A friend of mine said that she was in her church prayerfully begging, begging--bigger & louder than she has prayed for her own children--for Kyrie. Where did all of our prayers go?

Course, all this thinking loops over and around bursts of salty tears and the new cavern in my gut. As each day passes, I feel further from her. I don't want anyone to forget her. A week has passed since her funeral. Two weeks since Jordan and Lacie took her home from PICU. Whether I like it or not, forgetting is a symptom of time, like floating is to a bubble. But ... I suppose ... technically, I'm getting closer to her, right? I'm closer to my biological end today than I was yesterday. We all are, which means we'll get to see Kyrie and everyone else in our lives that we think we've lost soon rather than later.

And that brings me to the one thing that I don't question: Kyrie is with Jesus. She is in the place of perfect, holy love, a place where we all want to be eventually. Upon that truth, all my questions must fall. A) There is a heaven. B) She's there. C) I want to be there with her and with Him. D) Jesus tells me to have faith, to believe and serve Him to get there. E) So I must have faith, believe and serve until I get my answers face to face.

Aah, faith. Within even when you're without.

Tuesday, April 17, 2007

Kyrie's Photos

For Kyrie's service, we edited together a slide show of pictures from her short 19 months on this earth, each one a sweet gem. Originally, the slide show was nearly 13 minutes long. YouTube only allows for 10 minute videos, so I had to edit even more. Grueling.

Click here to view.

Sunday, April 15, 2007

Kyrie's Service

Family Church made for a beautiful setting for Kyrie's funeral service. Through the front door, we put together a beautiful display with a special quilt from Kyrie's room and a four-panel photo collage.

The bundles and bouquets of flowers were simply beautiful.

The service began with "Visitor from Heaven," a song by Twila Paris. The pastor read scriptures and led us in prayer. Pastor Baker shared many memories of Kyrie from Jordan and Lacie, including letters written to Kyrie from both of them before she was born. Then we all tried to sing "Jesus Loves Me." I've never sounded worse.

I put together a video montage of Kyrie photos that was also played at her service. Jordan has asked that I share that with you all, so look for a posting with it soon.

The pastor read letters to Kyrie written by Jordan and Lacie after she had passed, too. None of us, including Pastor Baker, made it through without tears.

After the closing prayer, we all silently made our way to the parking lot for the funeral motorcade to the cemetery. The mortuary hired funeral escort vehicles that were spot on. These three lighted, sirened para-police vans were incredible at stopping traffic, holding intersections and gently guiding the mile-long stretch of cars to the cemetery. A job very well done.

All of Kyrie's uncles were her casket bearers, and once they placed her carefully under the tent and after a few words were said, her visitors released pink balloons into the cloudy sky.

No one said a word. We just watched the sprinkling of pink balloon slowly drift further and further upward.

Funerals seem to turn memories into blazing images pressed against the inside of our eyelids. Mere glimpses of the beloved, moments you may have missed, take on new importance, new meaning. In this case, not only is it Kyrie, but it's also what she represents. I think of every parent who has lost a child and what they remember.

Papa Thome shared some of his reflections with me:

Some Things I Remember about My Granddaughter, age 19 months.

1) Her dadda knew for a long time that he wanted her, even before he met her mommy.
2) Mom's due date was around the first week of September--Labor Day--how appropriate.
3) Born with dark hair and blue eyes in family of blondes girls. How beautiful she would be, a brunette with blue eyes. But the hair began to lighten, naturally, just like her dadda's did when he was a baby.
4) Her "spider crawl," just hands and feet, no knees--she could go faster that way. And her first adventure: climbing up the stairs from the basement and being a little stinker about it.
5) Kyrie's first birthday party and Great Nana and Great Papa's: a house full of people and Kyrie the star attraction. Presents and gifts that could equal three Christmases and Kyrie trying to boogie to a musical birthday card.
6) Her first steps at my house just after her birthday when she would try to walk to the patio door to see "Woof-woof," Elvis the stray hound. With her face pressed against the glass, Kyrie wanting to go out and Elvis wanting to come in.
7) Christmas 2006, when she met her first crush that I know of, a big stuffed, soft, fluffly pup named Dog. He was with her till she left us.
8) The day Jordan told me that there was something different going on and to pray for her. They were going to the doctor.
9) The insuing days at the hospital with the news, none of good, but there was still hope.
10) One special day at the hospital, after being poked and prodded, she looked at me with those big, baby blues and said, "Papa." I didn't catch it at first, but Lacie did and repeated it to me.
11) And today, as a multitude of pink balloons lifted to the sky, I think I hear "Papa" again.

Friday, April 13, 2007

New post tomorrow.

So consumed with family togetherness right now. Sharing many "wow" moments from all of your generosity. And to those of you who have done things without us knowing, like donating to the medical fund collectively or anonymously--we'll never know precisely what you've done, but we'll never forget it either.

Thursday, April 12, 2007

A beautiful goodbye.

A ginormous thank you to all of you who were able to make it to Kyrie's vigil and/or funeral. Lacie was afraid that people might be too busy to attend, but with a motorcade to White Chapel Cemetery that was over a mile long, I don't think there was anything to worry about. So much support. That's what they need right now.

There are still so many wonderfully generous things that people are doing--Jordan, Lacie, the family, everybody are awestruck by all of the good works that people are giving. The flowers alone--thank you so much to everyone that sent all the immaculate arrangements. The florals made the sanctuary so special. The food has also been tremendously helpful. Nobody feels like going to the grocery store. And nobody feels much like cooking right now either.

For those of you unable to make it, I have a few photos that I can share. Please check back tomorrow or over the weekend.

And that's another thing ... many of you have asked about the continuation of this site. Right now, it's staying. I never expected that I'd be posting for a mere two months, so the postings may become less frequent but wholly forthcoming nevertheless.

Uncle Chad and I have been doing some thinking, too. We don't want all this sorrow and pain to be for nothing. Something big, something good, something lasting has to be done--that's just our way of dealing and understanding this mire of tears and loss. If any of you have ideas, please feel free to share. At this point, we're open to anything.

For me, today was a wrenching closure laced with thick strands of pure gratitude. Thanks you for those strands.

Monday, April 9, 2007

An invitation.

Jordan and Lacie have been especially strong through the last 48 hours. You wouldn't believe how dedicated they are to making Kyrie's funeral beautiful. So it is with a heavy and hopeful heart that you will choose to still be in this with us. I know some of you may question the appropriateness of attending if you do not directly know Jordan, Lacie or Kyrie, but they want you to know that this is their chance to hug you and thank you for all of your prayers. If you have loved with them, cried with them or said a prayer for them, you are welcome to be there for Kyrie.

As of right now, here are the arrangements:

Wednesday, April 11
Prayer Vigil & Visitation
6:00 p.m. to 8:00 p.m.
Family Church
(formerly Family Worship Center)
11135 W. Kellogg
Wichita, Kansas

Thursday, April 12
Memorial Funeral Service
10:00 a.m.
Family Church
11135 W. Kellogg
Wichita, Kansas

Flowers are certainly welcome. Kyrie was just learning and loving to smell flowers. And, I would like to gently remind you that these medical bills are still cruelly rolling in. Any contribution to Kyrie's medical fund would be appropriate as well.

I must sound like a broken record by now, but thank you, thank you so much.

Sunday, April 8, 2007

A Prayful Letter from Papa Thome

There are no words that I can say to those many of you who have visited this site. I want to thank you all for your generous thoughts, prayers and gifts for my son Jordan, his lovely wife Lacie and especially for that beautiful precious baby, Kyrie Dawn.

That little miracle of a baby girl has given us so much happiness and joy in the so little time that she has been with us. She has fought a hell of a fight against absolutely overwhelming odds, and we pray that God has those angel wings ready for her when she comes to Him. I can see her now as the angels take her away. She is smiling back at us in that litter ornery, impish way of hers, and is saying to us, "see you later!"

I have seen a young couple's love grow to a mature, selfless love for each other as they care for their own baby Kyrie. May the Holy Spirit come to them and give them the strength they will need in the future. We have dedicated our precious little one to Jesus Christ, our Lord and Saviour. We have baptized her in the name of the Father, the Son and the Holy Spirit through the powers vested in us by His church. We pray by all that is holy and sacred that we may one day be with our precious baby girl child again.

In closing, may I once again say through this grandpa's tears, thanks to all of you from the bottom of our hearts.

May I submit:

The Day the Angels Came
a grandpa's prayer and poem for Kyrie Dawn

Wednesday, April 4, the day we heard of the explosive growth of the tumors

Alas! O, Lord what is it that I hear?
Is it Your angels coming for our Kyrie Dawn?
O, please Lord, keep them at bay--
If just for one more day.

Thursday, April 5, Holy Thursday

O, Lord, what is this I hear?
Is it that You need another little angel to be near?
O, please Lord, please Lord, don't take our Kyrie dear.
Could You please keep Your angels away,
and we could have her just one more day?

Friday, April 6, Good Friday

O, precious, sweet Jesus, is this the day?
No, no, dear Lord, not today--
This is Your day that You died to save.
Again, please Dear God, let us be selfish
and keep sweet Kyrie another day.

Saturday, April 7, Holy Saturday Easter Vigil

Thank you dear God in heaven
for yet another precious day--
For we all know things will be done your way.
Little Kyrie Dawn is fighting so very hard--
Yesterday she three her ball three times
till her tiny arm got tired.

Angel of God, my guardian dear,
To whom God's love entrusts her here,
Ever this day be at her side
To light, to guard, to rule to guide. Amen.

Sunday, April 8, Easter Sunday

Dear God in Heaven, Your angels came last night,
As we all knew that someday they might.
They came around the hour of seven
to take our precious one to her
special place in heaven.
Sweet Jesus, we know that you, too, love the little ones,
so to You we give You our little Kyrie Dawn--
And in the end, it is always Your will that will be done.



Saturday, April 7, 2007

The angels came.

From day one, this is the post that I didn't want to write.

Kyrie had such a hard day. Since this morning, she had been struggling and gasping but wanting to stay with her Mommy and Dadda and Nana. Not really moving that arm that had been going non-stop for so long. They cried together all day, thinking each breath was her last. And then she'd gasp, and they'd all gasp.

Yesterday, Lacie tried to pick her up to hold her, but Kyrie looked like as if it was painful to move. This evening, after struggling for 12 hours, Jordan just wanted to hold her, so he gently picked her up and held her in his arms. She calmed immediately, so comforted by her Daddy's strong arms. Ten or fifteen minutes went by, and Jordan handed Kyrie to Lacie. Not ten seconds later, cradled in her Mommy's warm embrace, Kyrie took a big breath and opened her eyes--both of them, neither of her beautiful blue eyes were wandering or weak anymore--and a tiny tear came from Kyrie's eye. Then, she was gone.

She waited for Lacie to hold her. So tragic. So beautiful.

Underneath That, Kyrie's hands are holding Mommy's. Hospice is coming when they're all ready.

Oh, God. The sorrow is so overwhelming. I know she's running now. She's not trapped by a tumor anymore. She can smile again and laugh again and be silly again.

It's taken me a while to get this ready for you. I so want you to know, but it feels like once I post this, it makes losing Kyrie real.

You have no idea how much your caring has meant to this family. We talked about you all this evening in Kyrie's room, how good your goodness has been. As humans, we typically walk around each day in denial about well we're doing in the world. We think we're good people; we think were doing enough. You have all shown us and each other that we should care BIG everyday. We should be doing our best everyday. This reminder of my daily best came from Kyrie. She has created goodness that will be in my heart until the day that I get to see her again.

Quiet Time

Jordan and Lacie are just being with Kyrie this morning. Breathing is just getting so hard for her.

With Easter tommorrow, I know people are busy with family and events, but please continue to think of them, please continue to pray for this little family.

Friday, April 6, 2007

Good Friday

Kyrie gave us quite a scare earlier today, but right now she's doing such a good job of hanging in there. She has been such a fighter through this whole ordeal. We definitely know that she can hear us. Jordan put a small ball in her hand and everyone told her to throw it--she did! Three times!

Everyone is sitting around her in her room. We talk, we cry and we watch her.

And everyone here--the whole extended family--thanks you for all the comments. We have the computer up, and we check often. Jordan printed today's comments and passed them around to visitors and family that are stopping by. Thank you for that. We know how hard it is to find the words to offer some means of comfort. Seeing that you're still watching each day makes everyone here feel loved. It's good to care, and it's makes us feel better when you make us know that you care.

A Letter from Jordan

Oh God, where do I even start?

Kyrie is such a blessing to our lives, though we only her for such a short amount of time I am forever touched and changed having been her father. Even through all this pain I still thank God for every moment I was allowed to be with her. Lacie and I really believe that every day is a gift. Lacie lay with Kyrie last night sleeping on “Dog” with her, watching as she struggled to breathe. We watched Kyrie until our eyes wouldn’t allow us do it any longer. With every short breathe we wondered if it would be her last.
I can’t even describe the pain we feel right now deep in our hearts. Being her “Dadda” has forever changed me. Her little life has touched us both in ways only a parent would understand. As we spent the early morning talking last night, we remembered all the “Special” times we shared with Kyrie. Kyrie use to make it a game to sneak under the counter and pull Daddy’s toe hairs while I would try to eat at the counter. I would let out a little squeal and it would make her laugh so hard. Or the many mornings I would wake up to a little set of fingers pinching daddy’s “ouchy”. Well she quickly learned that daddy’s ouchy’s were “Boo Boo’s. Lacie thought it was the funniest thing how I would wake from a deep sleep to her pinching and they would both giggle.
There are so many precious moments that we shared with her, and I can truly say I don’t regret any time we had with her. From the time Kyrie was born she was our entire life. Lacie and I both wanted to spend every moment we could with her. I would hurry home from work to play with her and even got in trouble a few times for getting her wound up. Once Kyrie started walking it wasn’t long and she began running. Every where she went, Kyrie would run. And it was so cute to watch her run behind me every where I went. Run half hop, it was adorable. Since Kyrie’s first surgery she hasn’t walked or even crawled.
When the time comes for her to leave us, I believe she will be running to God and he will accept her with wide open arms and show her the love that Lacie and I have for the last 19 months.

There are soooo many things Kyrie didn’t get to do. Like lose her first tooth, or skin her knee learning to ride a bike, Prom, Children of her own. Life just isn’t fair. My heart is so heavy and I cannot write any more at this time.

Thank you to all who have been praying for Kyrie, and to those who have left comments for our family. It has really lifted us up knowing that so many people care and have been touched by Kyrie’s little life.


Thursday, April 5, 2007


Oh, Lord; Oh, Lord; Oh, Lord.

Kyrie, Kyrie, Kyrie.

Everyone got home before noon today. Kyrie is in her room on Dog with That and Momma and Dadda. The arm kept going all afternoon, right now, though, it's a little harder for her to control, to move. She tried to open her good eye once this afternoon, but hasn't tried since.

We saw the MRI of her head and spine. This cancer has just taken over. The cancer cells used the cerebral fluid to travel all through her brain and up and down her spine leaving pieces of itself to grow.

She can still hear you. She's still in there. She's trying to tell you things. She felt for and found Momma's nose and honked it and then tried to find her nose. Nana curled beside her and with everything she had, Kyrie yelled, "Nana!" She keeps feeling Dadda's hair and whiskers. In one quiet moment, with just the three of them, Kyrie blew kisses to Momma and Dadda.

Her breathing is irregular and labored. Lacie & Jordan are doing everything they can do to love her to heaven, to be with her as she finds her way.

It's hard for me to type you these things because these are the most intimate moments of their/our grief, but I want you to know for whom you are praying. I want her short life to matter in a way that makes me and you different, better than we were yesterday.

Oh, Lord; Oh, Lord; Oh, Lord.

Kyrie, Kyrie, Kyrie.


Dr. Rosen came to Kyrie's bedside this morning in PICU. He gently said that the chemo that they gave Kyrie was this best and biggest to treat this tumor. There are other chemo treatments out there, which Jordan and Lacie are welcome to try, but they would most likely make the inevitable worse. The brain tumor has grown into the majority of those valleys and crevices of Kyrie's little brain, pushing and consuming. The best option is the hardest.

She's down to 17 pounds. She hasn't opened her eyes, but she can hear you. She moves her right arm up and down a lot, always holding That. Sometimes she shakes her head "no, no, no," a little mumbling. She cried out as Jordan and Lacie got her dressed to go home. Her facial muscles can't tell you anything, but I think she's uncomfortable.

Hospice is coming in this afternoon. They'll administer the morphine. Jordan and Lacie are experts now at doing everything else.

Dr. Rosen said that once Kyrie is home, it isn't a matter of months or weeks; it's a matter of days. Evil is so damn fast.

So, I'm at a loss to accurately describe any of this for you. A dozen adults sobbing around a long, tiny body whose arm moves up and down holding a blanket. She just got here and now we have to figure out how to say goodbye. It isn't fair. It isn't right, and right now I really think His plan stinks.

Jordan and Lacie are great parents. I mean FANTASTIC. Never, ever have I heard them complain about getting up in the middle of the night with a baby. Never did they whine about diapers or making bottles or toys all over the house or the expenses or crusties in her nose or staying at home instead of going out or anything. They cherished the moment. They were grateful. They shared. And when she got sick, they stepped up to the plate. They comforted, they questioned the doctors, they rallied, they learned to give the injections, clean the line, give her IV food, watch her vitals, everything.

And to watch them even today, they are beside her, talking to her, crying, loving. And the rest of us are beside them all, talking to them, crying, loving.

Nothing makes sense right now. How many times does God have to hear Lacie cry, "I don't understand."? You love God. God gives you pain, and in the end, you're supposed to love Him for it. What? Where's the positive reinforcement? And why would He do this to people who already believe, love and follow Him? And I know that "We aren't meant to understand His will," but why would He make pain like this a riddle, a game? And why isn't His will doled out fairly?

I dunno. I wish I could console them, myself and you. I'd gladly exchange the prayers for peace, comfort, continued faith and sustainment simply for healing.

Please stay with us. The next several days are going to be a heavy load.

Going Home

I just received word that Kyrie is going home from the hospital this morning. Please note the Prayer to St. Jude below:

Prayer To Saint Jude

O most holy apostle, St. Jude, faithful servant and friend of Jesus, the church honors and invokes you universally, as the patron of hopeless cases, of things almost despaired of. Pray for me, I am so helpless and alone.
Make use, I implore you, of that particular privilege given to you, to bring visible and speedy help where help is almost despaired of. Come to my assistance in this great need that I may receive the consolation and help of heaven in all my necessities, tribulations, and sufferings, particularly for Kyrie Thome and that I may praise God with you and all the elect forever.

I promise, O blessed St. Jude, to be ever mindful of this great favor, to always honor you as my special and powerful patron, and to gratefully encourage devotion to you.


Hoping for Hope

As Megan's husband and Kyrie's uncle, I will do my best to stand-in and update the site. No additional news as of yet. Prayers are needed more than ever and we continue to hope for hope. Thanks to everyone for your continued thoughts and prayers.

Wednesday, April 4, 2007

More about today.

Kyrie is receiving her blood transfusion this afternoon. She still hasn't opened her eyes, but has moved a little and mumbled words.

Jordan said that the MRI showed tumors growing all up and down Kyrie's spine, in the cracks and crevices, and he was told that "it's one of the worst cases they've ever seen." The tumor in her brain is twice as big as the original tumor, before the surgery.

As far as a next step goes, Dr. Rosen will be seeing Jordan and Lacie tomorrow morning. Jordan said that he and Lacie wouldn't be opting for radiation because it's very painful (it burns the cells) and would leave insurmountable brain damage. No matter what, after Dr. Rosen's visit, they'll be leaving the hospital, either to pack for a trip to St. Jude's or to make her comfortable at home. Those last five words claw at my eyes and rip at my gut.

I'm heading to Wichita this evening, so I may not post like I normally would.

Words fail to convey the pain right now. It doesn't make sense, it isn't fair and even weeping an ocean couldn't alleviate the hurt. All I can do right now is ask that you not leave them. Please continue to pray. That's all we've got.
Each one of my fingers feels like a brick as I type this.

The tumor in Kyrie's brain is twice as big. The tumor in her spine is also larger.

Before Kyrie's MRI this morning, her hemoglobin was low, so they were looking at a blood transfusion this afternoon. Now, I don't know what the plan is. We're waiting on Dr. Rosen, Kyrie's oncologist, to come in.

We're hoping for hope.

Moments away ...

Okay, today's the big day. We'll know more about the cancer that Kyrie is fighting. Are the tumors growing? Are they the same? Are they shrinking? Signs of stroke damage? Fluid? Lots of things to check.

I know each one of you has a life full of complicated needs warranting prayers. You may have children or grandchildren of your own, health issues of your own, situations in your immediate family that need divine guidance or any number of conundrums that need your help and attention. You care. You give. So, when you take a moment to step aside and think of Kyrie or when you include in her in your spiritual practices, you are not only a caregiver in your own circle of influence, but you become a caregiver for humankind. And even if it weren't Kyrie, I know that you would be doing the same for anyone vulnerable, anyone who needs your help. The whole What Would Jesus Do? You're doing it. Thank you, thank you, thank you.

I'll post today's progress as it arrives.

Tuesday, April 3, 2007

9:00 a.m. Tomorrow

Kyrie's MRI is schedule for 9:00 a.m. tomorrow.

She still hasn't opened her eyes yet today. Doctors say that with severe, intense seizures, sometimes it takes children days or even weeks to come out of it completely. Or ... Kyrie may have had a stroke. Earlier this morning she stopped breathing for 10-15 seconds which could indicate a stroke. She had an EEG today, too. Jordan and Lacie do not have the results of that yet. The MRI tomorrow will check for signs of a stroke, plus look at her spine and brain tumors.

Even with all of that, this afternoon has been a bit better for Kyrie: no seizures, and Kyrie felt around for That and put it to her face. Soft mumbling for "mamma" and "dadda."

Please keep the prayers a'comin'.

Still in PICU

Kyrie's surgery went without complication yesterday. Such a relief. The end of her cerebral drainage tube was clogged (with proteins? scar tissue?), so the surgeon cut off the end, fitted the tube with a new tip and thread the tube back through Kyrie's body. She is not on a ventilator but has an oxygen mask close by to keep her O2 level up, which has dropped every now and then. Technicians took a chest X-ray, and everything looked fine.

She still hasn't woken from yesterday's procedure. A few small, mild seizures yesterday. A little mumbling "mamma" and "dadda" and reaching for the hoses around her chest, but she hasn't fully snapped out of it yet. And that's okay for now. Rest heals.

There's talk of doing that ever-elusive MRI tomorrow. Depends on how today goes. After she comes out of PICU, she'll likely still be in the hospital a few days for monitoring.

Thank you for continuing to be with Kyrie, Lacie & Jordan through this, especially during the last 48 hours.

Monday, April 2, 2007


Kyrie returned to the hospital yesterday.

After more than a week of vomiting, restlessness and weakness, Kyrie began having seizures yesterday. Jordan and Lacie rushed back to the hospital Sunday afternoon, thinking she was having a reaction to her new anti-nausea meds. After a quick CT scan (They thought to do a MRI last night, but something about on-call staffing problems ...), they discovered that her fluid drainage line was clogged and as a result she had been building fluid for over a week.

They were going to prep her for surgery last night, but her seizures became much worse. Jordan said that he and Lacie were told that they got there in the nick of time. Kyrie's heart rate reached 200+ and she was running a 103 degree temperature. In an effort to remove fluid and pressure, a doctor punctured her tube. Her neurosurgeon arrived and drained off even more fluid for a grand total of 75 mL. They tested the fluid and there is some infection, perhaps from the abdomen area. She continued having seizures until early this morning.

She is being prepped for a 9:00 a.m. surgery to either replace the drainage tube or to insert an external drainage tube. We're not sure which. Either way, Kyrie will be on a ventilator when she wakes up.

And here's the salt in the wound: Had she completed her MRI as first scheduled last Wednesday, they would have found the fluid and avoided this current peril.

We don't know if they will do the MRI today or not. Probably not with all the other things happening.

More news as it comes in.