Merry. Effing. Christmas.

Hey, guys.

So. Christmas Day. The big birthday. That's just fantastic.

Hope everyone is having a merry day. I am an emotional blob. Dad is getting on my nerves, Mom is in a baking frenzy, and my sister is being.....my sister. UGH!!!! I just wish this Christmas was all that I wanted it to be. Not that it was bad on any terms. I'm home. Out of prison. Able to eat. Able to breath. I had so many plans for my first Christmas home. And they were almost all shot down. Not by anyone in particular, but.....I was gonna make a really cool gingerbread farm. With cows, and pigs. And a haystack. I was gonna decorate everything. Hang mistletoe. bake a bunch of stuff. Have my sister stay over Christmas Eve, and we would wake up on Christmas morning and open gifts and take pictures. I bought special pajamas. We were gonna make french toast.


Ruined. All of it.


I'm a being a snively brat. But.....it was gonna be fun.


Now it's over. I'm in my room, listening to my iPod on my new iHome. I should be happy. Relishing in my new gifts. Drinking hot chocolate. Reading my new books. Checking out what I can buy on Amazon with my gift card. Plotting what I can buy with my $100.00 check from my grandpa. But no. I'm in here pouring my heart out while my dad is driving my sister home, and my mom is God-knows-where doing God-knows-what.


Merry. Effing. Christmas.

Okay. I know. I can hear your cries or protest to my not posting in F-O-R-E-V-E-R. But, I'm back, and that's all that matters, right? .....Right? That's what I thought. Well, I have been very busy. School has been very hectic, we are trying to finish up stuff before the quarter ends (Dec. 1) so I have been kind of negligent toward my blog. I was thinking I would start off where I left off, but I will have to post the pictures when Dad gets home (since the pics are on his laptop) but here goes:

We woke up bright and early in order to fit everything in that we needed to before going over to NJ. I am getting a lot of this jumbled up since I don't have it written down....ohmygosh. Something just dawned on me....I can view the itinerary! Be right back.......Okay. Saturday October 4. We went on a bit more of the bus tour to Central Park. There I picked out a pretty palomino pulling an emerald green and white carriage, and we proceeded to take a nice relaxing (if jolting) ride through Central Park. Very pretty, like an old English forest in the middle of a bustling city. We got on the bus again, then went to the famed Carnegie Deli for lunch. Oh....My.....Goodness. Our sandwiches were....oh, about 6-8 inches tall. full of meat. Yumm-y. From there we went on the bus again and rode over to Radio City Music Hall. That was cool. We walked a little ways and ran into this giant firefighter thing. So Dad broke out his patches and handed out a bunch of them. We left that, since we got there as it was ending, and passed Rockefeller Center. I believe from there.....oh dear, I think we did this all different days. oh, well. When Saturday was over we drove to New Jersey, and hung out talking at U. Jim's and A. Lisa's house. We all went to bed, Brandon on the couch downstairs, me on the floor next to him (I fell asleep watching a movie). We woke up, and hung out eating donut holes while Brandon and I played with the dogs. Then we all got dressed and Aunt Lisa, Brandon, and I went to the mall. I got a few shirts and stuff, Brandon got a game at Game Stop. We ate some really good pretzels, then went back to the house. We got ready, and then headed out on the bike, trike, and mustang (I think it was a mustang). We passed into Penn., New Hope, to be exact. We ate lunch, looked around at a couple of shops. Then it was "that moment". You know, when you were just getting to know someone again after not seeing them for so long, and the time is over when it feels like it just began. So we packed our things into the car and headed out. Um, I can't really remember....oh yeah. That night was perfect for the Empire State Building. So we went up, and up, and up some more. then we got off the elevator, turned the corner, got into another elevator, and went up, up, up some more! Then we were finally at the top. I had a meltdown because I was tired and sad and, just blech. So then the clouds started rolling in, so we went down down down, around a corner, then down, down, down some more. We looked at a bunch of posters from the King Kong movies, then left to go home (hotel). Monday we went to....somewhere. Let me check....ah. we went to the Mesa Grill (Bobby Flays resteraunte). Now for the funny story:

Before going to Mesa, we went to St. Patrick's Cathedral. It was so.....wow. all the stained glass, the marble, the figures, it was so majestic. Unbenownst to me, Mom lit a candle praying (for my sake) that Bobby himself would be there, though I was steeling myself for the most probable outcome (that we would NOT be there). So we got there at 5 p.m., and they don't start seating until 5:30 p.m. So I went to the restroom (mostly to pass the time). My path passed the kitchen I looked in there, and saw a red head I was very familiar with. I kind of started hyperventilating, and so I went to the restroom, splashed water on my face, rearranged my makeup, and took a few deep breaths. I went out to where Mom was sitting, and kind of squeaked "he's here!!!" and she kind of got this empathetic/sympathetic look and said "No, Honey." I said "Um, YEAH he IS!!!" and pointed toward the kitchen. Of course he had passed and was nowhere to be seen. Then I kind of thought maybe I saw what I wanted to see. So I went and sat down. Mom came in a few minutes later and nodded her head. I started crying because my dream came true. So we sat down, ordered our food, and sat there, high on adrenaline (at least, I was). So our food came, we ate. We sat more. Ordered dessert, ate it. The manager came out a few times to see how we were, and came out and had me go pick out a cookbook. As we were looking through it, he came. It was the most amazing feeling of my life.
And here I'm going to end it, because that's how I roll. Night nighty nighty night. I LOVE BOBBY FLAY!!!!

Okie Dokie. And it continues....


Friday the 3rd (also my sis' 21st b-day) we started out the day on a tour bus. This was pretty fun. We went all the way to the end of the line and got off at the ferry. We took the ferry to....anybody? Can anyone guess? If you guessed anything but the Statue of Liberty, you were wrong. We checked this out (pics can be seen soon). We them ferried over to Ellis Island. Brandon might have found his Polish ancestor. We didn't. Dad's family came from Mexico, and moms probably through Boston (from Ireland). Anywho. after this we met Aunt Lisa and went to this cute little Mexican bar (kind of any oxymoron, but hey) and had some refreshments. We then walked down to the whole business district (correct me if I'm wrong Aunt Lisa) and explored down there. YES I DID SEE THE STOCK MARKET BUILDING!!! Very cool. I also got pics with the swat team guarding it. No joke. We then walked through a bit of Chinatown, and ended up eating at a nice little restaurant in Little Italy. We parted ways only to meet again the next night.....which will be continued tomorrow (this is where you come in NJ Family!!!)

Hope my cliff hangers are keeping you all on the edge of your seats!!

Does anyone know who this man is???

My hero, yes.

But has anyone else heard of him?

Soooooo. I have had quite the week. I planned to blog every day of it, but our room was 10 $ a day from Internet access, and frankly, I was too busy having fun. I know you may feel a bit hurt, but that is not what I meant. I could never be too busy for my BBBFATL (Best Bloggin' Buddies Forever And The Like). Anywho. As many of you know, the last week was being spent in NYC for my Make-A-Wish. Questions, anyone? Why of course!

Q: What is everything I had hoped for?
A: Yes, it was more than I ever imagined

Q: Did I miss my friends and family?
A: Are you joking? of course I missed my BBBFATL!! (refer to parenthesis above)

Q: Did you see lots of weird people?
A: Um, Hello. I went to New York City. I think we all know the answer is yes.

Okay, enough with the whole asking-yourself-questions-because-nobody-can-physically-ask-them-right-now thing. Kinda creepy. And it reminds me of split personality disorder. Not cool.

Well, the majority of the first day of the trip (also my b-day) was spent traveling. We met Brandon (my mom's dad's wife's son. Mom hates it when I call him her step brother, and I hate it when people call him my *shudder* step uncle. He's only a year and a half older than me!) at SeaTac Airport. We went to our hotel, settled down and unwound after our flights. Got all perddied (prettied) up, and went to Birthday Sup/Send Off Party at the Space Needle. Went back to the room to get a goodnights sleep. Got up waaaaay too early (earlier than the cocks, some would say) and caught a five and a half hour flight to Newark, NJ (they say to never ever fly into the New York Airport, it's supposed to be a madhouse). They actually had a limo waiting for us to transport us to our humble abode for the week. We stayed in...wait for it....wait for it....Times Square DoubleTree Suites (Hilton). That first night we settled our luggage, then went out for a jaunt. Stopped at the M&M's World Store. Did some drinking (taking in the city). Ate at a really cool Irish Pub called the Pig 'n' Whistle.

Okay, I'm getting mighty tired, so I will continue this little novelette in the morning, yeah?


Wonderful. Nighty Night!

Oh my goodness gracious! I can't BELIEVE I haven't updated in over a month! hopefully i haven't bored my faithful readers to death! Well, let's catch up on what's gone on...

School is pretty good. very rhythmic. progress reports come out on Friday (fingers crossed).

I went on my LA trip at the beginning of the month. It was soooo unbelievable!!! I mean, everyone there could relate to everything that everyone went through. It was kinda sick, but we were comparing who's port scar was better (bigger, badder). We actually met G.W. Bailey, Phillip Keene, Micheal Paul Chan, Kelle Wallet, Annie Cusack, and the big finale, LUKE PERRY!!! It was soooo awesome. I got interviewed by a news channel, AND a newspaper reporter! We got to ride from our hotel (the Sheraton Universal) to the set of the Closer (on Monday nights at 9 on TNT) in a police escort that only the president gets!! I got to ride in a GT Mustang Convertible! OMG, it was SO COOL!!!

We are headed to NYC in a coupla weeks!

Well, that's about it, gotta go make some No Pudge Fudge brownies!

Toodles, my loves!

Hey guys. This is where the whole teenage life thing comes in. I just got out of my first day of high school! It was very cool. I saw a bunch of my old friends. I have some pretty cool teachers. Its nice to be back in to school. It makes me feel....dare I say...the N word. Let you know when more interesting stuff comes up. This will most likely be at the end of the month when I go on my Sunshine Kids trip. TTFN!

P.S. It was Dad's b-day last Tuesday, and moms is tomorrow!

Well, I've decided to keep this bad boy in motion. If anyone wants to keep reading, i will mostly be blogging about how teenage life is treating me. And highschool. and maybe some peotry. Please keep reading, but I understand if you don't want to.

Okay, I kind of need some feedback here. Ruth just shut down the "cancer blog" for good. She had good reason though. She is finalizing with her cancer. Am I done? I sure as heck hope so. But Should I keep this blog for petty things that happen in a "normal" teenage life? Or should I count it as an omen to keep blogging on a blog that was originally made to tell the progress of a deadly illness? Like I said, I need feedback. Peace homies.

Oh...my....gosh! We just got back from a trip out towards Prince William Sound in Whittier. We went out with our friends Pat and Carrie, they were on their boat and we were on ours this time (the picture of me holding up the halibut, that is on Pat and Carrie's boat last summer). I am pretty sure all of my Alaskan readers have heard the "26 glacier cruise": song on the radio at some point in time, even in you didn't know it. Well, we saw almost half of those 26 glaciers, plus multiple more tiny ones. And hundreds of waterfalls. We saw dozens of otters, even a baby seal! It was kind of surreal, being so close to nature. There's just nothing that can compare to hearing the crack of a glacier calving, or seeing a mama otter with her baby floating on her belly. Not to mention the fishing! We caught some rock fish, a few dogfish, a few Irish lords, and Carrie caught a 59" long halibut! They also put out some shrimp pots, and the only thing I can say about fresh caught shrimp, is that I may never be able to eat frozen again! Man, and when we were just basking in the sun, looking out over the green-blue water smooth as glass, and the deep green mountains surrounded by glaciers, I had a total appreciation for God (not that I didn't already, don't get me wrong! I just mean in a different way), and the way he made the earth. We will have some pics on our Picasa album, and maybe you might get a hint of what I'm talking about!

Mwaaa! (big slobbery kiss)
loves yas!

Okay, folks. Lots of stuff to say, and not enough time...who am i kidding? I have all day! Anyway, here goes:

Camp Was AWESOME!! Completely everything I could have hoped for. I actually got me meet more kids my age that are like me. It was a Hawaiian theme. We had luaus, and leis, and anything else Hawaiian that starts with l. We were also split into tribes. I was in the teen tribe, a.k.a The Pina Coladas. There was a talent show, and a fashion show, and it was just awesome. I did a high ropes course. It had a heated pool. It was just completely right on.

I got a Rockband!! It is sooo much fun! Totally and completely rad.

Um, maybe I was fibbing about having sooo much to say, cuz that it!!
Love yas!!

WARNING, MAY CONTAIN SPOILERS FOR THE MOVIE THE HAPPENING!

Good morning, all, and what a fine one it is. The.....ohmygosh......SUN is out!!!! First friggin' time in the month of June!!! But I'm not just commenting on the fabulous Monday; I have a warning:

NOBODY PAY A DIME TO GO SEE THE HAPPENING!!! We watched it yesterday, and that was such a waste of 25 bucks! It was about plants getting mad at the humans for polluting the Earth, and they started releasing toxins that made people commit suicide. Odd movie, not worth MY money!!!

Trouble in Paradise

Okay. I know I don't usually title my posts (only when the parentals comment for me), but this is big. So, I sometimes mention a friend of mine. Some of you know her, Michaela. Well, we had a teensy, weensy, itty, bitty arguement. It ended in her calling me stupid and me calling her a brat (I thought my comment wasn't that big of calliber on the insult scale). Now I am in fear for our friendship, and I am........dare I admit it........scared. I don't want to lose her. What should I do???

"heavy sigh" Hi everybody. I don't think I should bother with posting anymore. Hardly anyone comments. It makes me feel so left out. Just because I'm healthy doesn't mean I don't need some lovin'. I know I'm boring, but stay with me here. I will be more chatty when I can get a life instead of moping around. "heavier sigh than previous heavy sigh"

Oh dear. I haven't been a very good girl about posting, have I? Oh well. I did have reasons. No one has commented in forever. I figured my fame had worn off. There is still hope though, right? Anyway. enough groveling for one post. I am proud to announce I will be able to go to public school part time next year! And we are getting our doggy back tonight! Just keep in mind I DO need reassurance. Goodnight then.

Sorry, all. Mom shut down the computer before I could polish off and post my post. It was basically about how I have made an "awesome playlist". It has everything on it. But to other subjects that most of you will think are important. Yesterday I had a bronchiolavage. They stick a tube down your throat into your lungs. They squirt some saline, suck it back up, and repeat a few times. Th ey thought they saw some..........stuff....on my CT scan, and my PFTs (pulmonary function tests) were down 10-15%. Oops. Guess I didn't study hard enough. Well, we won't know much about these results for a few days, and others for a coupla weeks, then the others for a coupla months. Peace.

Howdy all. Sorry about the neglection (a new word of mine), I just haven't had much to say. I'm sure this will disappoint some of you (NOT MICHAELA!!!), but I decided not to go to the dance. I know, I know, I was soooo excited. But I've come to realize that until high school, most dances consist of guys on one wall, girls on the opposite, awkward space in the middle, for 3 hours. I decided I could spend my time better. Like watching the PBR. Or Flavor of Love reruns. Or, my best one yet, MOBILE HOME DISASTERS!!!! (it's a new show on CMT. Those of you with cable, check it out!!) BTW, tomorrow I am being confirmed. Most of you know what that is, some of you will be there, and very select few who do read my blog that are my age will be fellow confirmees. Will update later (I am such a liar!!!)

Ports, Pics & Hickmans????

Our trip to Seattle was supposed to fix Kayla's Port problem.
Well it worked for less than 72hours. Kayla woke me this morning with her port site dressing full of blood & I assume heparin.
After checking into Providence this morning, the nurse was changing her dressing, out of the catheter came saline solutions. Four days post port surgery & she had to be de-accessed & reaccessed.
Has anyone had this much trouble with Central IVs? This poor girl can't seem to catch a break in this area.
Please pray for her port to work & her pain minimal
Thanks & God Bless.
Jeneice & Rick

Mother's Day!!!

Well, it's Mothers Day. This is the one day of the year we pamper, wine, and dine our mothers. The one day of the year the weight of the world is to be lifted off and carried by others. A salute to you, and a recognition for all that you do!!!!


P.S. We are home, we are well!

THE PAIN!!!! I am back at RMH. You already know most of the stuff. I couldn't keep anything down last night, so they kept me. Still feeling queasy, and in a bit of pain but otherwise I'm peachy keen!!! So sorry, but my wit is nauseated, and tired, and in pain. My wit will be wittier next post!

Post Port

Kayla is feeling better this afternoon. She is being discharged. Her infusions have been re-scheduled for Monday in Anchorage. We will be going home tomorrow evening. Kayla will add her wit when she gets out.
Thanks for the prayers.
Jeneice & Rick

New Port

Hi everyone.

Kayla went in at 3:45 to replace her port. It is 8:50, she is in recovery. We should be taking her to the RMH across the street. She is supposed to have infusions tomorrow morning at 8:45. I'm thinking we may not make it. I worry about giving her 2 heavy duty immunosuppresent drugs only 12 hours after surgery. Her doctors think it will be okay. I say, "We'll see how she feels tomorrow!" We hope to fly home Saturday evening.
I will post tomorrow.
P.S>
Please pray for our friend Angel. He is only about 7. He has Leukemia and is weight is only about 40 to 50 pounds. He is not eating very well. They admitted him on Tuesday.
God Bless
Jeneice & Rick

Well, I've decided to go. I think it would be fun to see all my old school mates. I AM in Seattle, but I should be back home in a few days. It has been so hectic, I haven't found the time to update, but here I am. I am scheduled for my port replacement surgery on Thursday morning, but my fellow patienteers know how THAT is. Not much else to say. It was almost 70 degrees yesterday. Oh..........my.........gosh. It was sooooo nice. Everyone loved that it snowed up there last Friday. I have been able to drop in and see all my old hospital peeps. I am still trying to convince the parentals to let me go see my night nurses (they come on shift at 11!) Not much else to say. Hope all is well up in the north country! Much Love!

OK, quicky post, but I really need some opinions. Colony Middle School is having their annual spring dance for their eighth grade. I want to go really bad, and my mom says I should. I am not sure, though. It is my home school, but I don't go there and homeschool instead. What does everyone think?

Update

Hi Everyone.

I thought I would update everyone on Kayla's Medical stuff. She has actually been living life like a teenager. We Love it.
She has labs weekly. Infusions monthly. She had 3 on Monday. Unfortunately her port has quit working. It took 3 1/2 hours & 7 sticks to get an IV started. 10 1/2 day. The best part was being able to come home & sleep in our own beds.
Norman, the hospital moose made a visit & Kayla ate lunch with child life & friends she made when she was inpatient at Providence (Aug. - Oct. '07).
We will be making a trip to Seattle the first week in May. She will have numerous tests & will be having her port replaced. We hope to only be there for about 10 days. We have to be back for her Sisters graduation on May 15Th.
They have put her transplant on hold for an undetermined amount of time. Her Rheumatologists and her Pediatrician are keeping a close eye on her. We will update the medical part during her visit to Seattle.
Thank you for all your Prayers
Jeneice & Rick

Okay, so I was thinking all of today what I would post tonight. I recently read this book, an autobiography, called Welcome Home, Davey. (it's an awesome read, try it.) Well, he was in Vietnam, and was injured. (that's all I will tell you, really, try it). His mother had something wrong with her, and she instilled in him the verse "those who suffer shall also reign with him". Whenever I start to feel sorry for myself, I think of this verse. How true it is, and how, in our own time, we all will reign with him. Again, read the book!!!

Ding Ding Ding, we have a winner! Ruth was right, it was the last supper. how about Good Friday, and Holy Saturday? I know I'm late, but as the tried and true saying goes, better late than never, am I right? And for extra credit, how about someone mentioning Easter Vigil? (no way would I know all this on my own. I must pay tribute to Wikipedia! Ha!) We know you know Andy!!!! Ha just teasing! Post more tomorrow, toooo....tired..............to............think..........any........more!!!!!! =~]

So sorry I didn't come on yesterday. By the way, it was Holy Wednesday yesterday. Anyone know what that means? If you said it was the day that Judas betrayed Jesus, then ding ding ding! you are a winner!! If you said anything else, well, YOU WERE WRONG!!! But don't feel bad, there are still four more days left for you to guess right! Speaking of who can tell me what Maundy Thursday means???? I'll check back tomorrow to see who guessed, and who guessed right or wrong!! Love, much!

Howdy all! Happy Holy Week!! Or not so happy, depending on how you want to look at it. Today, as some people may not know, is not really a part of Holy Week, but there is something called Monday Gospel. It is about the anointing of Bethany, in the book of John, Chapter 12, verses 1-9. I'm pretty sure, if I remember correctly from last week in church, Bethany was the place that Lazarus lived. Not his sister though, his sisters' names were Martha and Mary. Mary had wiped an expensive oil on Jesus' feet with her hair, I guess to thank him......my, haven't customs changed over the......millenniums!!! See you tomorrow, maybe. I will see you Wednesday, since it is a designated Holy Day, and I must keep y'all educated!!! Much love!
Kayla

Can't be long, but I just wanted to keep everyone up on my now boring life. Not that I'm complaining, boring is fine with me! Michaela and Katrina, two of my best friends, came over and spent the night last night. I felt sooo bad though, I fell asleep at 10, and they didn'tgo to sleep until midnight! That's what relaxants will do to you though (on my part!) Gotta go, Michaela is nagging me to play Wii with her! Later!

Okay, so I know it's been awhile, but I'm back now. See, this is why I don't keep a journal. I can'[t keep it up. And besides, there isn't anything teribly exciting going on in my life right now. Well, except for the fact that I'm home! Oh, I gotsta go! Lata!

Oh......my.........gosh. Okay, how long is the line for people waiting to slap my hand?? I am sooooo sorry, but we just, well, we, um, oh, darn, why not just say it: I have no excuse. I have been lazy, and that is why you have all been left anxiously waiting for over a week. And that is the reason there should be a line 10 miles long of people, all waiting to slap my hand and scold me for leaving you all uninformed for so long. Well, not a whole heck of a lot I can do about it now, except beg for your forgiveness, and move right along. Okay, so first off, mom got in fine! Her flight was supposed to be getting in early, but as I'm sure any of you that have flied Alaska Airlines, they were delayed and ended up getting into Seattle on schedule. Darn good for Alaska Airlines, I must say, since they seem to consider getting to their destination on the same day arriving on time! Okay, enough raving about A.A., and on to the next topic. It is now a week and a day of being parolled, and so far so good. I have labs twice a week, and depending on how those look is how we time different treatments. For instance, this past Tuesday I got a draw that didn't look so great, so bada bing bada boom, Rimicaide on Thursday (which was really screwed up, they couldn't get my port accessed, then once it was, they couldn't infuse the med, since they couldn't get any blood return to let them know they were for sure in a vein. They finally got access almost 2 hours after my infusion was supposed to have started!). Now the next one is on Monday, so hope hard and pray harder that my results will look better than the previous one! So, I think I've covered all topics, at least that I can think of this late (yes, 10 p.m. is late for me, when I got up at 7:30 a.m. That is the earliest I have gotten up since getting out! Yes, sad but true!) Alrighty then, I guess this is goodbye, and I won't make any promises on when the next update will be, since I may be away from internet access for a few days. I will try to let y'all know what the results were, and if not, then later on this week for sure! Toodles!

Oh...........my..............gosh. I canNOT beLIEVE I haven't updated in a week!!! Well, I could have had a little help, hint hint (Dad has been breathing that down my neck for the past three days, "you need to update your blog; you'd better update your blog!)!!! Anywho, I guess it doesn't really matter how or when or who gets on here, but it kind of does matter what we're on here for. This post is actually a really, really, really, important one. I.................AM................OUT!!!!!!!!
Yes, I am really out of the hospital! A free woman, that's what I am!!! We made our goal, out before 100 days!! How AWESOME is that?!??! Okay, now that I told everyone, I'm gonna go and enjoy my newfound freedom (and dad is now breathing down my neck, "I'm hungry, let's go eat" and I am kind of hungry!!) So, I will probably be on next tomorrow night, to let y'all know mom made it back saftely. See ya lata!!! Lotesa Love, Kayla

Out of Surgery

Hi Everyone.
Kayla made it out of surgery fine. They were abble to do everything laproscopicly. They removed a small section of her bowel. She will not be able to eat or drink for another few days. We hope & pray this fixes the problem. She will be recovering for 6 - 8 weeks before we can talk with the Fred Hutch. We are all needing a break before we start that long process.
We hope to make a trip to Nevada & come home for awhile. The rest of Kayla's disease process have been keeping in check. Hopfully we can start reducing a lot of her meds, like the steroids!!!
Well Thank you for all the prayers. We ask for continued prayers.
Take Care & God Bless.

Hi everyone!!! I know, I know, big shocker, but this is actually Kayla updating her own blog! Sorry it's become such a rarity to heaqr from me personally, but they've been switching meds around and screwing with my sleep schedule. Hopefully soon I will regulate soon, and be a human again, and not some kind of nocturnal creature of the night! Well, surgery has been decided for tomorrow sometime, so start praying now!!! Not that any one of you has ever stopped, what am I thinking?!??! We just want for it to go smoothly, that they won't have to do anything more than a laproscopic incision, that it will heal properly and they won't have to go the alternative route (sewing my intestine to my stomach wall, and I'd have to poop out of a bag for a small amount of time........EEEEWWWW!!!). That the weekend will be quiet and I can recover peacefully, and start building up my diet, slowly. Unfortuantely, I will most likely not be up to blogging, but of course Mom or Dad will advocate for me, as always. Gonna go now, but I love you all, and I know yoiu all love me!!! Peace, God Bless!!!! Kayla.............out.

Who is in Charge?

Well, still no definite answers yet. Rheumatology, GI, Pain Management & Surgery are debating Kayla's fate. Surgery Will not do exploratory surgery on Kayla. She is to high of a risk.
She will be getting more tests run next week. Will update again, when that happens
Take Care
Jeneice & Rick

More Questions Than Answers

Hi Everyone.

It has been a while since I've updated, but I am sure you can imagine what a stressful time this has been. Kayla has been on clear liquids for almost three weeks. Throw in a few mg of steroids plus the steroid pulses you have a hunger like no other. One can only eat so much Jello. Kayla has been having an incredible amount of pain. She has been an 8 on 1-10 scale. I have been on my own until last Thursday when Rick came down from work. She has been having a few tests.
Kayla was given a test capsule to imitate a test called ERCP. A capsule with a camera that should come out and give the DR's a good view of Kayla's intestines. The test runs failed. Both the capsules dissolved before they came out. So then it was on to another test called an MRCP ( a very fancy MRI with fancy contrast Kayla had to drink. During the test something was sending a very bright flash image back. Test could not be completed. It seems the latest dissolving capsule had some sort of metal in it. Which just so happens, is still in Kayla's intestines. How or why there is metal in dissolving capsule & why or how it would get stuck? That is a question that has not been answered. The doctors feel the pain medications are slowing down her stomach. Which is fairly reasonable. One problem, Kayla's pain. The latest recommendation for getting of Opioid is an Anesthetic medication that can give a person feelings of being detached, hallucinations and make one of her eyes bounce. The best part is this medication is only administrated by highly trained staff. We would have to move to the Hemonc floor. I am refusing to move. I feel if they were able to give Kayla chemo on the medical floor, they can improvise again.
They are considering exploratory surgery to figure out her stomach issues. Highly risky for more than one reason. She is on 4 immunosuppressents and the area in questions is full of poop and bacteria. Not high on our list.
I will update when I have a real answer. Probably next week. You can text us or email if anyone has questions.
Take Care
Jeneice

The Questions?

Hi Everyone.
Kayla is out of service for a little while. We are still trying to figure out her stomach problems.
Today is day 6 of 9 - 12 liters a day of "Go Lytely". {The name does not fit!!}
Dr Emery has once again consulted with the GI Docs, tomorrow the will do another test capsule. This will hopefully tell us where & what is hanging up. I will update once we have definite answers.
The transplant is still on hold. The Transplant Doctors will not meet with us until this stomach issue is completely resolved.
We hope Rick will be here Thursday.
Andy & Laura came last weekend. We had a great visit. Thank you to the two of them for making the trek from Montana. The weather in the passes was not the greatest.
Take Care
God Bless
Jeneice & Kayla

Ha! I know you are all wondering, what the heck does that post say?! Well, I'm right there with you. I have no clue who these people are, or even what language the are speaking in. But this isn't the first time I've gotten a foreign email on here. Weird, kinda. Whatever. Moving right along.............I haven't been sleeping well AT ALL the past few weeks, so they decided to put me on what's called Ambien, I'm sure most of you know what that is. Night before last, Sunday night, to be exact, was the first time I took it (but I have taken it before, just not recently). That night I had the most horrific nightmare. Some people think this is a ridiculous fear, but I have always had a thing about......................clowns. There are clowns here at the hospital, but they don't freak me out. See, they're not your usual clown. No red nose, rainbow striped jumpsuit, bushy red hair, over sized red shoes, etc. They are more like eclectically dressed comedians. I am just afraid of the classic clown. On with the story.....So I had just taken the ambien, and I was getting really groggy, so I knew it was starting to work. One minute I'm sitting there in bed channel surfing to find something good to fall asleep to (I have this weird thing, background noise helps me sleep. TV, radio, that kind of thing). Next thing I knew, I shoot bolt upright, sobbing and soaked in fear sweat. My dream was about this mass murderer that dressed up as a clown when they were killing the victims. I dreamt that they went around killing anything that was important to me: friends, family, even my pets!! I had to sit through this terrifying ordeal as they one by one brutally killed everyone. Then right before I woke up, it had finished off everyone else, and was headed straight for me!! Then, naturally, I wake up right before. Well, we weren't sure why I had such a bad dream. Our only theory could be the Ambien, but last night proved that it may not be. I didn't have any dreams at all last night. Tonight I'll try again, and maybe it was just some fluke, and I will instead dream about puppies and cupcakes and rainbows. Wish me luck! My stomach is still bothering me quite a bit, so we're still on a clear liquids diet. I'm getting sick of being in here when I feel well enough to be out (not that I'm feeling that way right now-stomach cramps-but I have been). I want to see everyone! I want to see my family, my animals, my friends, I miss my life! I just need to work on my patience skills, I guess. Doesn't mean I can't be unhappy about it, though!!! Sorry to end on such a sour note, but I have typed myself into a huge plate of self pity, with a little homesickness and frustration on the side. Now I'm gonna go try and take my mind off the less happy aspects of my life.....thanks for listening!

Howdy there everyone! Okay, this is my first official post of 2008! Since it's a new year, we need to start off with a new beginning, right? Well, that plan pretty much backfired right in my face. I was supposed to get out yesterday, but, as always, there is always some reason for me to need to stay. This time it's the Crohn's. Off the subject a little, but speaking of Crohn's, I don't know where this rumor got started, but I still have the Crohn's. Some little birdie has been feeding false information to a few people. Crohn's isn't like a cold, people. There is no "take some NyQuil, you'll be better in no time". It is a disease, and once you get it, it won't just go away. Remission is always a possibility, but you will always be doing treatments for it, and in my case, battling it constantly. Another thing that these birdies are a tad confused about is everything regarding the transplant. WE DON'T KNOW ANYTHING!!!! We won't know anything until at least the 2nd week of January, so don't ask us any more!! We don't know, and don't y'all think I'd tell you A.S.A.P. if there were changes?? Of COURSE I would!!! Okay, well enough ragging on my anonymous misinformant. With the record set straight, I can sign off knowing that whoever chooses to read this will be on the right thought path. Oh, and life sucks right now, since I am now NPO AGAIN!!!! That is a result of the cramps I've been getting the past few days. Just keep praying that things will subside smoothly, and that I will be let out of this prison. I may get in trouble for saying this, but we were going to come down to Nevada and visit before the transplant, since I wouldn't be up to it for a long while afterwards. As some of you may know, my grandma Nonie (Dad's mom) and her hubbie Ralph are watching Gracie for us. She flew down with Nonie when her, Mom, Dad, and I first flew down here in early November. We were gonna drive out to Smith Valley, but Nonie is super super sick, and I obviously can't be around super super sick people, especially now. So therefore, if she doesn't miraculously heal within the next few days, we may not be able to come down. That really really really really REALLY bums me out! I miss Gracie sooooo much! The other day, Christmas I believe, I was on the phone with them, and, being the quirky person I am, I proceeded ton talk to her like I usually do. You know, all dog owners talk in that little baby voice, and they have their special nicknames, etc. So I was talking to Poopsie (that would be the nickname I christened her with), and she went NUTS. As soon as she heard my voice, she started looking around, barking, running around the house, trying to find out where Kayla was, and why she only heard my voice. It was so precious, and heartbreaking at the same time. It was super tough when we found out we may not be able to see her, since we were already looking forward to a visit down there. Of course, we couldn't go to Nevada without going to Grandpa's house. I miss my horse soooo much, I swear I am going through horsie withdrawals. Why couldn't we just skip the sick people, I'm sure you all are asking. Well, the sickness doesn't stop with Nonie. How ironic is it that as soon as I am healthy enough to actually spend some time doing things I want, when we learn I may not be able to go to Grandpa's either! The ironic part being the fact that they, they being Brandon and Trish, have.........omg............get a load of this.......................wait for it.......................wait for it...............S-H-I-N-G-L-E-S!!!!! How un-be-LIEVABLE is THAT??!?!!?!?! Bogus bogus bogus bogus BOGUS!!!!!!!!!!! I am so mad at the world right now, I could scream. I know it will get better in time, but I am sick of time. I want to be better NOW!!!!!!!!!!!! Really, I can't be blamed for feeling like that. Every sick person in the world is entitled to a few of those days, and mine has been long overdue for a while now. It is nice to have somewhere I can go and get peoples advice, and support, and the whole nine yards. I love you guys, you're the best!!! Hugs and kisses to all, and hopefully Next time I write, I will be on my own laptop on my own bed in my own room at the Ron Don House!!! Oh, and silly me, I almost forgot..................HAPPY NEW YEAR!!!!! WELCOME 2008, you'd better be a good year!!!!