A Girl and Her Dog.

For Christmas, Papa Thome gave Kyrie an ENORMOUS plush hound dog puppy in honor of Elvis, my dad's come-to-stay-stray dog on his farm. What else would you name a hound dog? Last summer, Kyrie & Elvis became friends while Jordan, Lacie and Kyrie were living with my dad as their new house was being built in Valley Center.


Kyrie has grown to adore this giant piece of fluff. They watch Baby Einstein together. They take naps together. They understand each other. On Monday night, one day home from the hospital, Kyrie insisted on sleeping with her puppy. And right now, if that's where she wants to rest, that's okay with absolutely everybody.

Hospital Photos

Here are photos from last week in the hospital. Kyrie's left eye isn't tracking well with her right one, and that could be a result of swelling or the tumor. You can tell that Kyrie isn't keen on her hospital stay, but Jordan & Lacie say that her spirits and appetite have greatly improved since returning home. Wa-hoo!



Daddy, Kyrie & Mommy.



Mommy, Nana, Kyrie & Daddy.



Sleeping like a lamb.



Kyrie coloring with markers for Mommy.



Mommy & Kyrie.

"Home again, home again, ..."

They made it home! Kyrie, Lacie and Jordan left the hospital yesterday and arrived home around 3 p.m. Aaah, sweet comfort and relief. Jordan said that Kyrie wasn't eating well at the hopsital and that as soon as they got home, she pointed to the pantry and said, "num-num." Two rounds of baby food later, they could all tell that she was relieved to be home. And they're set with a ton of antiseptic cleansing foam, Purell dispensers and a box of face masks at the door.

Sometime today she'll have an appointment to meet with her oncologist. This week, "Doctor Daddy & Doctor Mommy" will administer injections into her leg to build her white blood cell count.

New pictures to come soon!

Almost good news.

This first day and night of chemo were rough. Out of a sound sleep Wednesday night, Kyrie became explosively ill, both top and bottom. Thursday was a little better, but still lots of vomiting. Yesterday, she wanted to sit in her new Bumbo, a special booster-seat-like chair that helps infants learn how to sit up. Last night was better than the night before, very restless but no vomiting. This round of chemo was heavy duty; now we just wait to see if it's holding the tumors at bay.

This morning she was hungry, which I think is fantastic! The doctors say that she cannot have any leftovers or any food that is more than an hour old. After an hour, bacteria begins breaking down food, and those bacteria aren't our friends right now. Another new pathogen factor is the hospital's pediatric floor itself. Currently, the majority of the patients on Kyrie's floor are there due to respiratory infections. Not good. The nurses are wearing masks when they come in Kyrie's room. The doctors say that she will be much safer at home, which could mean that Lacie, Kyrie and Jordan MIGHT be able to go home tomorrow, although they'll nearly have to hold their breaths to get outta the building.

Feels like we'll all be holding our collective breath to see if this chemo works. Please, please, please, Lord, please allow this chemo to work.

Clorox, Purell, Lysol and such.

Since chemotherapy compromises the immune system, the window of opportunity for visiting Kyrie is nearly closed. Her chemo regime significantly decreases her white blood cells, red blood cells and platelets, which leaves her extremely vulnerable to becoming sick at the slightest germ. Platelets help our blood to clot when we have a cut or scrape; Red blood cells help deliver oxygen to tissues, and the white blood cells, well, we should all be thankful we have those guys. White blood cells are like our internal immune system's army; they identify and eliminate pathogens (bacteria, viruses, fungi, etc.) either by attacking or by engulfing and then killing microorganisms. And pathogens are everywhere.

We come in contact with millions of microscopic bacteria, viruses and general cooties everday, and it's our skin, hair, mucus, immune system, etc. that keep most of those airborne and contact germs from really getting us. Think about how many tiny germs are on our fridge handles, door knobs, keyboards, cell phones, purses or at our schools, shopping malls and grocery stores. Ever step into a public restroom? What's on your shoes?

In the next five to 10 days, Kyrie's immune system will hit a new low. So, even when they go home in a few days, Jordan & Lacie are asking that people refrain from physical visits and contact. One of the most incredible things about love, prayer and care is that you can still feel it even if you're on the other side of the planet.

Without the opportunity to visit with them in person, commenting on this site is more useful now than ever.

New photos to come in the next few days.

Chemotherapy begins TODAY.

In an effort to thwart this tumor as quickly as possibly, the doctors have opted to begin Kyrie's chemotherapy treatments this afternoon instead of tomorrow. Especially since the lumbar puncture and scan showed another tumor in the lower part of her spine, which affects the bladder, kidney and lower extremities. Two types of chemo will be administered, vincristine and cytoxan, the latter being a very powerful drug that needs to be flushed out of her body quickly with detoxing adjuvant, mesna.

Over the next 36 hours, Kyrie will get as much of this chemo as her body can handle, and the doctor said that her hair will be gone in just three treatments.

Like many of you, I've been constantly thinking of and praying for Kyrie since this began. Today, might be a good day to pray a little louder.

Thanksgiving.

Who knew that we could celebrate Thanksgiving on Ash Wednesday?

With just one week into Fringe Salon's fundraiser for Lacie & Jordan, we have much for which to be thankful. Thanks to your generosity, the giftbasket raffle (I hear that the giftbasket is really swanky!) has raised just over $1,000. Hooray! And we still have three more weeks to go!

This fundraiser really means a lot. Earlier this month, when Kyrie was in the hospital the first time, after just a week, the hospital's billing department called to say that the Thome family had already met its deductible and were wanting some exhibit of payment. As God would have it, a good samaritan visited Kyrie that day—it was the first time that person have ever met Kyrie—and handed Jordan & Lacie $200. Jordan gave it to the hospital straightaway. Can you believe that? I love it when God makes His goodness obvious.

And guess who learned two new words this week? Kyrie said "girl" for Mommy and "boy" for Daddy. Wa-hoo!

Maybe a hug or something.

If you're in the Wichita area and might be around Wesley hospital in the next week, Lacie and Jordan would love a visit. Sometimes, understandably, people don't want to be in the way or may feel like a visit would be an intrusion, but Jordan said that a new face sometimes helps the time pass. Plus, they both really could use the support. I don't think they're up for a cavalcade, but when you're feeling a little blue, isn't it nice to know that you're not alone?

And for those of you who aren't geographically close, you are welcome to leave a comment (just click on the pink "comments" word at the end of any post. If you don't have a Google account, they'll ask you to create one with an e-mail address and a password of your choice. That's it. Totally free. Completely secure.) Jordan said that they can't believe how many people who have never even met their family are praying for Kyrie. They check this site every day and would like to meet the people for whom we are so grateful.

We have our work cut out for us.

The biopsy results are in.

Kyrie has been diagnosed with a PNET, a primitive neuroectodermal tumor, more specifically an "embryonal tumor with abundant neuropil and true rosettes," according to the pathology report. Her diagnosis is extremely rare—less than 100 cases a year in the U.S., which makes data and prognosis infomation sparse. Yes, it's malignant. Yes, it is fast growing, which actually makes it more likely to respond to chemotherapy treatments—the only decent thing about a fast-growing tumor.

Her procedures for her Hickman line and lumbar puncture went well. Her shunt is almost working too well, though. They didn't get much CSF from her spine, so they might have to do another tap tomorrow.

Chemotherapy will begin Thursday, and the first round will be inpatient. There are several types of chemo that they're going to try, the first being administered two times a day for two to five days followed by a two-week respite. They'll do another MRI to see if that kind of chemo worked. If not, onto the next one. The doctors will teach Lacie & Jordan how to administer and flush the meds through her Hickman line so that she'll be able to do some of her meds that come along with chemo at home. So in the next few weeks, right next to the milk and leftover macaroni in their fridge, you could see her medication packs. (*Correction: Kyrie will not be getting chemo at home, just other assorted meds like anti-nausea, etc.)

Tomorrow Kyrie will be sedated for a "hearing test," a test that doesn't really check her hearing but checks electrical impulses sent to her brain.

As if these past couple weeks weren't obvious enough, this is an extremely serious condition, one that requires colossal help: mine, yours, theirs and His.

Baby Blue & Heartbreak Pink.

Big day today. Lots of testing and news to come. Stay tuned.

Aside from a sterilized playroom or maybe a balloon animal from a visiting clown, hospitals aren't much fun for kids. In between naps, it's been Baby Einstein, maybe a blip of Noggin TV, some renditions of "Twinkle, Twinkle Little Star" and a couple bites of mashed potatoes. Jordan asked my mom to pick up some markers for Kyrie. Markers aren't something you'd usually want a 17-month-old to have, but sedation, wounds, stress and vomiting can take a lot out of a little person (anyone for that matter). So much energy and strength has been drained from Kyrie that this typically vibrant, and sometimes ornery, tiny girl doesn't have the strength to make a crayon work. It takes a wee bit of pressure to get the colored wax to leave a mark. We just don't have that wee bit today.

So markers it is for now. Can't wait for the crayons to come back.

Recovering again.

Kyrie is out of PICU and slowly but surely recovering in a regular room. She went in for a baseline MRI today to set the reference point for her future MRIs. She's much more sore this time because of the drainage tube that was threaded under her skin and the cut made to secure one end of that tube into her tummy.

Monday looks like the day for another round of sedation procedures: the Hickman line for her chemo treatments and a lumbar puncture, which is another name for a spinal tap. The CSF retrieved during the puncture will be analyzed to see if any of the tumor cells have moved into her spine. If you're needing something specific for which to pray, let's pray that the CSF test comes back clean. ;)

Word is that the biopsy results are back, but the doctors haven't visited with Lacie & Jordan about them yet.

Thank you again for all of your tremendous support. Jordan and Lacie have both mentioned to me several times how amazed they are that so many people are willing to care, willing to be in this with them. Thank you, thank you, thank you.

Tubes.

Seventeen months old.
Two brain surgeries in 13 days.

Kyrie is recovering again today in PICU at Wesley hospital in Wichita. Yesterday afternoon, Lacie and Jordan took her back in due to weakness and semi-responsiveness. She'd been vomiting consistently for three or four days, so when she got to the ER, getting an IV in her was difficult. The nurses tried both arms, both legs and each time they'd find a vein, it would collapse due to her low blood pressure. They went for a PICC line instead, a peripherally inserted central catheter inserted in a peripheral vein, and then pushed through increasingly larger veins, toward the heart, using ultrasound and fluoroscopy to guide insertion and to confirm placement. Kyrie was so dispondent that she didn't even flinch.

After another CT scan, Kyrie went in for surgery late yesterday afternoon with her neurosurgeon to insert a ventricular shunt,a tube that is surgically placed in one of the fluid-filled chambers inside the brain. The self-produced fluid around the brain and the spinal column is called cerebrospinal fluid (CSF). It seemed her brain was producing the CSF, but not reabsorbing it perhaps as a result from tumor or surgical scarring, which caused excess pressure. So, now there is a tube where one end is in her brain, and it runs out of the skull, under her scalp, down her neck, through her chest and empties into the abdomen. Jordan says that this is permanent, and as she grows (she's nearly three feet tall now), she will need more of these shunt surgeries to lengthen the tube.

[big sigh.]

She now has two incisions on the back of her scalp. Warning: the following photo may be alarming for some of you to see.




This is the incision from her first surgery. There is now ANOTHER incision on the other side, about half as long. She's back on steroids and morphine. Most likely, they will be in the hospital for another week to 10 days. While there, she'll also have the Hickman line put in (probably Monday) and possibly start treatments after that. Still waiting for the pathology report.

UPDATE

After almost a week at home, Kyrie was admitted back into the hospital this afternoon. She's been very nauseated for the last several days, not keeping much nourishment in her system at all. Today, she was especially weak having difficulty opening her eyes fully. Seems it may be more than dehydration. I just got word that she's being prepped for a 5:30 p.m. (CST) surgery this evening to have a drainage tube inserted into the brain area. I don't have all the details, so I don't know what kind of fluid is accumulating nor do I know how long the drainage may last.

I'll update the update as soon as I know more. Prayers graciously accepted.

A valentine.

This is one of Kyrie's baby photos, and it's one of my favorite photographs of all time.


Today, when love is centerstage, I see so much in this snapshot—sweetness, hope, family, future, divine gifts, husband & wife turned father & mother, guardian angels, peace and so much love that it bubbles over the edges of your heart like sugary, marshmallow fluff.

Sleeping babies seem like something that God would send as His valentines. I'm glad He sends those out more than once a year.

What's in a name?

Some of you have asked how to pronounce Kyrie's name. Excellent question. Long "i" sound, long "e" sound, like "K-EYE-ree," and the emphasis is on the first syllable. It's interesting, though, that her name is spelled just like the Greek word "kyrie," which in Christian liturgy means "Oh, Lord" as in "kyrie eleison," meaning "Lord, have mercy." So, I guess, even her name is a prayer. Cool, huh?

Course, "Kyrie" is also that '80s hit by Mr. Mister.

I'll post as soon as we hear about biopsy results.

"Little Cindy Lou Who, who was not more than two."

Over the holidays, Kyrie's Uncle Chad started calling her Little Cindy Lou Who from the original The Grinch Who Stole Christmas. Her hair had finally grown to the point of springing pigtails, and she is at that age where she's filled with wide-eyed wonder. Curious to explore yet fully aware of how far Mom & Dad are. Such a great age to watch. Plus, last October she began walking ... and running as fast as her glittery Target Mary Janes would take her.

Today is different. A bit less hair and her left arm and leg are still affected by the swelling in her brain. No walking or running yet, but the doctor says that may improve soon. In the meantime, she'll still be Little Cindy Lou Who to me.

That list over there.

Have you noticed how much the prayer list list has grown? Amazing! Every few days it seems like I get another e-mail from someone saying that their entire church or organization has added Kyrie to their list--people who may have never even met her. That's powerful.

Some of you may know that my dad, Kyrie's paternal grandfather, battled lymphoma in 2004 & 2005, after a 20-year remission from his first battle with that cancer. He's also a member of the Clonmel-Schulte Knights of Columbus, which he has called to request that his name be taken off their prayer list and replaced with her name. So bittersweet.

As you head to church or during your quiet time this weekend, we just want you to know that we deeply appreciate each and every time you include her name in your thoughts. "Thank you" is our prayer for you.

30 Days to Raise.

Both LoveBox and Fringe Salon, Jordan's and Lacie's employers respectively, have been extremely understanding through recent events. Sometimes it's good to remember that bosses, employees, VPs, managers and worker bees aren't merely positions—they're people grappling perfectly imperfect lives. It's so good to be gentle with each other, especially in tough times.

Speaking of good, Fringe Salon (a super-cool place to do your 'do) is hosting a fantastic fundraiser for Kyrie's ever-looming medical expenses. Beginning on Valentine's Day, Wednesday, February 14, 2007, Fringe will host a raffle for 30 days. Just $5 gets you a ticket to win a fabulous Waterfront Gift Package. In case you're not familiar with the Waterfront Shops, check 'em out here. So if you're overdue for a haircut and you want to help out, hey, two birds, one stone, you know?

Still waiting for biopsy results. Maybe today or Monday.

Guess who's home ...

for a couple of days anyway. Kyrie's doctors think that she might heal better and faster if she can relax a little bit. Every time the door to her hospital room would open, instant buckets of tears and dread. She's been poked and prodded so much in the last 10 days that she's conditioned to anticipate the pain. Poor thing. Can you imagine? So she's been switched to oral meds for a few days before she has to go back in for the surgery that will install her Hickman line, an intravenous catheter used for long-term medications. She also had her first physical therapy session yesterday before she left the hospital. And last night, she was able to sit up in her highchair and eat a bowl of nee-nee—that's macaroni to the rest of us. ;)

For those of you wanting to know about donations, please see the bottom of the page for new news!

Stealth Health

NASA gave us Tang, and it looks like GPS navigation and missle-tracking technology might give Kyrie and the doctors a better chance at fighting this tumor. During her crainiotomy, the neurosurgeon used "stealth" techonology, which works by generating a 3-D image of a patient's brain (or spine) with the placement of adhesive fiducials around the head. A computer program used her CT scans and MRI scans to align those results with the 3-D image of her brain. The neurosurgeon virtually sees through tissue to place instruments at the precise location of the surgical site. Kyrie's doctor said that he could see her tiny brain nerves! The computer can also show surgeons what part of the brain lies just in front of them—before they get there. This prevents accidental contact with blood vessels, nerves and other important parts; contact could cause brain damage.

And when Kyrie needs radiation, maybe the doctors will be able to use this: "Called computer-mediated stereotaxic radiosurgery (CMSR), the new technique combines software adapted from Cruise missile guidance systems with robotic manipulators and a high-powered X-ray machine. Before surgery, a CAT scan generates a detailed three-dimensional map of the target. The robotic arm then compares its own X-ray images with the mapped target, tracks and locks onto a tumor, and delivers a dose of radiation without harming surrounding tissues, says Stanford physicist Richard Cox. As a result, physicians may be able to kill off some types of cancers without opening a patient's skull or spine, Adler says."

Go God & science!

One more thing.

In times of medical trouble, well-meaning people can accidentally deliver inaccurate information. With hope, this site may alleviate that. I'm not a medical professional nor do I proffer to be, but I will post accurate information. Now, information may change, so please check back periodically, if you're looking for the most current assessment.

Thank you.

I wish you could comprehend exactly how much your thoughts, prayers, support and comfort have meant to our family over the last week. Our cups runneth over with appreciation. And I credit you, our dearest friends & family, and God with last Friday's surgical success. Kyrie made it, and frankly, I can't bear to imagine any other outcome.

Now begins what could be a long and winding road, one that, with your continued thoughts and prayers, could end up joyful. How cool would it be if we could all look back on this, shake our heads and think to ourselves, "Thank you, God, for getting us through that."?

I'm just an aunt, an aunt with a computer, and I figured that we might as well make all this e-technology useful by keeping everyone updated on Kyrie's progress. As I see it, this is OUR progress. Most likely, this blog will become an inadvertant study of the power of prayer. I want you to clearly know what your thoughts and prayers are doing. There can be very real results from quiet pleas and whisperings that may seem like lost vapor.

Long after the newness of the situation has worn thin, she'll still need you. A year from now, two years from now--we don't know--she'll still need you. And who knows? Maybe she'll grow up to be the OB nurse that delivers your great-grandchild or a member of the prize-winning research team that discovers a cure for pediatric brain ailments. Maybe she'll grow up to be the mother of more kind and helpful people, just like you.

Again, thank you. Please feel free to leave comments. (Totally free. You'll have to register with Google so they can track you down if you leave icky messages. Just your e-mail address and a password.) I'll try to update as often as I can, at least once a week, perhaps more. Biopsy results should be in today or tomorrow.

Here are some photos of the past week:


Daddy, Mommy & Kyrie the day before surgery.



Kyrie & Nana Jan riding in the wagon on the Peds floor.



Mommy & Kyrie coloring.



Taking a rest.



Post-crainiotomy in Wesley's PICU.



Recovering.