JAYCI JOY'S JOURNAL OF MIRACLES (part 1)

July 30, 2007

HI! Sorry I haven’t written to update you guys lately – I have kept mama and daddy really busy. We went to have blood work done last Thursday and mom caught a virus while we were there. Wouldn’t you know she gave it to me so here we sit in the hospital again! I told mom she should’ve worn a mask like I did and none of this would’ve happened. Maybe she’ll listen next time. Hopefully we’ll get to go back home today – we just have to wait for Dr. Habersang to release us.

We have to be at the hospital next Thursday, August 9th to begin my 3rd round of chemotherapy. Dad got to see the results of my CT Scan and X-Ray from yesterday; they had to do both to make sure I didn’t have an infection in my already handicapped lungs. He said Dr. Turner was very pleased with both of them. The fluid and stuff around the tumor has disappeared and the tumor is less dense than it was originally. The tumor is basically a lump of calcium and Dr. Turner says it will take a long time to disappear but he is pleased with the progress I have made so far.

Now on to the good news and fun events that have occurred during the past 5 days!

Grammy Ju and Gramma still visit me daily. Mom and I both look forward to them coming! They have taught me how to sit up, roll over, and walk as long as someone is holding my hands. I am waving, saying “HI,” and blowing kisses again too. My speech and physical therapists are very pleased with my progress and Dr. Habersang says I am “IMPRESSIVE”! The therapists in Friona are doing exactly what mom has been doing at home and think our trips to the hospital will only keep me sick. They advised mom to get in contact with ECI (Early Childhood Intervention) so a physical therapist, occupational therapist, and speech therapist specializing in pediatric care can come to my house and work with me. We hope they can begin soon! I want to keep “impressing” everyone!

I’ve had a few other visitors since I’ve been home too. Granpops, Grandad Jack, and Dodi see me quite often – I love it when Granpops takes me for walks! I also got to see my Nickels’ cousins through the fence. Mom and Aunt Kayla wouldn’t let us play because I was still neutropenic; Jaegan and I thought they were completely out of line and both expressed our opinions about it. J Brittany and Kinzi Jo, my neighbors, brought me some more really cute, soft outfits last Saturday and Jacey McDonald and her mom brought me a Care Bear on Sunday – it is so good to see kids; I can’t wait ‘til I’m able to play with them again! Mom and Dad keep reminding me I have to be well to stay on my chemo schedule and the faster I complete my chemo schedule the faster my cancer will be gone and I’ll be ready to go full blast again!

Mom and Dad took me to Clovis to buy groceries on Sunday. They made me wear my mask and ride in my stroller the whole time but I didn’t care. It was so good to do something normal again! There is still a world outside my house!

I also got to go to my Gramma and Granpops’ house on Sunday. Can you believe all my toys were still there? It was sooooo good to see them. Gramma even gave me a haircut – everyone tells me how much better my hair looks now and it doesn’t get in my eyes either.
I am doing really good – I wish you all could see me now! I just have to remember what mom and dad said about staying well and limiting my outside contacts and know that when I’m cancer free I’ll have a big party and invite all of you so I can personally THANK YOU for keeping me in your prayers all this time. Jesus is the reason I’m doing so good you know.

Mom is going to try to do better and email more often. She’ll make sure she keeps you updated during my next chemo round! I just don’t give her any free time at home anymore – I have a lot to learn to get back to my old self and think I need her constant attention and help to get me there!

I LOVE YOU ALL BUNCHES!
Jayci Joy


July 27, 2007

Hello Everybody! I’m doing GREAT! I did a good job at the hospital yesterday – that numbing cream works great! I really just cried at the presence of the nurses, not the stick to draw my blood. We still haven’t heard the results of the tests yet, but mama says no news is good news. We should hear something by this afternoon. I’ll make sure mama lets you know as soon as we find out!

I’ve been keeping everyone really busy around here. I think I should have constant attention and get really frustrated because I can’t do the stuff I used to be able to do. I am making progress though! I can sit up by myself for a little while and am rolling everywhere! Mom’s goal is to have me walking again by Christmas – she hopes I’ll be crawling in a couple months. Life will be so much easier when I regain some of my independence! The physical and speech therapists should start coming to my house next week. Hopefully, they’ll speed the learning process up even more!

I can’t wait to see all of you! It’s great to be home but I’m used to going places and seeing people all the time! As soon as my counts come back up I’ll be ready to play!

Gotta Go! This computer stuff is only fun for a little while!

Love,
Jayci Joy


July 24, 2007

What an AWESOME 48 hours I have had! I am doing so good! Being home is the BEST THERAPY any girl could have! I am rolling over and holding my head good now – I’m even trying to learn to walk again! My Granpops is going to come over tonight and start teaching me to walk again – he will hold my hands and walk me for hours you know! Grammy Ju and Gramma have me picking up my blocks and putting them in the container where they belong and doing all kinds of stuff like that. I’m going to be the strongest, smartest girl around before long! What can I say except: “I can do all things through Christ who strengthens me!”
I still don’t like taking my medicine and give mama and daddy a hard time every morning and night! They just don’t understand how bad that stuff tastes! Bath time is fun again! I just love the sponge Grammy Ju found for me to lay on. I’m glad I’m back in my old routine of taking 2 baths a day – they make me feel so much better!
I go back to the Dr. on Thursday for lab work – please pray it turns out good so I can come back home until my next chemo round!
I LOVE YOU ALL and can’t wait to see you!
-Jayci Joy

Jayci Joy amazes us everyday! I think she progressed 2 months in 2 days! She’s holding her head good, rolling over, sitting up in her chair at the bar, feeding herself, trying to relearn to walk. . .the list goes on and on! I can’t wait to show her off on Thursday! Her doctors will be so impressed!
The only side effect we’ve noticed from the last round of chemo was nausea – but only about 12 hours worth! PRAISE GOD! Our Jayci threw up her toenails night before last – but as quickly as she started throwing up, she stopped. GOD ANSWERS PRAYERS!
Again, we are so blessed to live in a community so generous and caring. It seems like every time we turn around someone else has done something to help us out. We cannot THANK YOU enough for the food, cards, gifts, savings accounts, house and yard work, kind words. . .and especially the prayers!
“No eye has seen, no ear has heard, and no mind has imagined what God has prepared for those who love him.” 1 Corinthians 2:9
We know he has GREAT PLANS for our Jayci and all of you!
God Bless You All!
Guy and Kimberly


July 22, 2007

I’M HOME! Chemo went GREAT Friday night and my doctor’s let me come home yesterday afternoon! WOW! You all must have prayed really hard for me! THANK YOU! It’s soooo good to be home again. I slept really good last night and have played all day. My house smells so good (thanks everyone for getting it ready for me) and my yard looks pretty too (thanks again)! I’m trying very hard to get up to speed again – my physical and speech therapists should start visiting me next week at home. I have to go to the doctor on Thursday for some lab work – if all looks good I should be able to stay out of the hospital until my next chemo round begins August 10th. I will have to go to doctor appointments every now and then though – they have to make sure I stay healthy! THANK YOU for all the prayers – my nurses and doctors are amazed at my progress – I just keep telling them I am a MIRACLE – an act of God!
Love,
Jayci Joy


WOW! The past 48 hours have been amazing! Our Jayci is doing WONDERFUL! Chemo went great – we can’t even tell she’s been through another round! She hasn’t thrown up too much, been fussy, slept more than usual or anything – GOD IS GREAT! We were so surprised the doctors released us yesterday! They continue to rave about Jayci’s progress – they and we know and tell all it is the prayers being sent up for her! She can hold her head for longer periods of time now and is starting to roll over. She can even feed herself! We still have a long way to go but have complete faith that God will heal her body and she will be the same Jayci she was before this all began. Unfortunately, Jayci will not be able to accept visitors until Thursday for sure, hopefully her white blood count will be back up to normal by then. Jayci is our biggest gift and accomplishment thus far in life and thanks to the power of prayer by everyone and by the grace of God she is slowly returning to normal. Thank you all from the whole of our hearts and please keep our daughter in your hearts, for our journey is not complete yet. God bless you all and please know how much we appreciate you.
Love,
Guy and Kimberly


July 19, 2007

“And now the Lord is the Spirit, and where the Spirit of the Lord is, there is FREEDOM. (from the hospital, from tubes, from cancer. . .)” II Corinthians 3:17

This day was the best ever. Mom and dad took me on an adventure. First we went for a ride in the suburban to Chick-Fil-A; there was a certain wonderful comfort in being back in my car. We came back and I was able to visit the Ronald McDonald house where Grammy, Gamaw and sometimes mom and dad stay. It is great, especially the back yard where they have a nice swing set that me and mom swang in for a spell. After that, I had to come in to their room for a two hour nap. Being fully recharged, we walked down the hill from the house to the park with a river running through it. Dad pulled me in my new wagon with a canopy over it (thanks Gamaw) down the walkway to a nice shady tree where I sat in the grass by the river with mom and fed the ducks bread. Those ducks were so cool. Next, we finished celebrating my day out by blowing bubbles (thanks dodie and happy birthday love, love). I am eating and drinking like a horse and my arms and legs are cooperating more and more. I can sit up on my own for short periods and I rolled over all by myself. My hair is really starting to fall out but mom says that is part of it and it really doesn’t bother me. Well I have to get plenty of rest tonight because tomorrow I start round two of chemo, gotta whip that cancer you know. Oh by the way, mom and dad saw and compared today’s x-ray with the old one and they could see a significant shrinkage. Thank you Jesus, and thank all of you friends. Love you all, goodnight and god bless.
-Jayci Joy


July 17, 2007

HELLO! It’s been the greatest day ever! I slept really good last night, got to take a REAL, SPLASHY BATH this morning, got to wear my new, beautiful dress Aunt Billie Jean made for me all day, am getting stronger and feeling better everyday, and the best news – I HAVE A NEW BABY COUSIN!!!! Jonathan Eugen Smith (We’re gonna call him Gene) was born about 2:15 this afternoon. He weighed in at 8lbs. 3.4 ozs. and was 20 in. long! Uncle Timmie said Aunt Lidia and Baby Gene are doing great and they should be able to go home in the morning! Mema Betty is going to stay with them for awhile. I’m soooo jealous! I can’t wait ‘til I’m well enough to play with Ana again and I’m sure Baby Gene will be just as fun!
I have some other GREAT NEWS! I AM TUBE FREE! I pulled my feeding tube out during my bath this morning – it’s okay though ‘cause I’m drinking and taking my medicine like a big girl! I’m ready to eat too but Dr. Kim said I have to wait until tomorrow to do that. I’m looking forward to eating my yogurt and green beans again! It’s been nearly a month since I’ve eaten real food you know!
Dr. Habersang is back and has a nice tan from his trip. I blew him a kiss this morning! He thinks I’m doing great! Dr. Reguira is also proud of me. We are on schedule to begin round 2 of chemotherapy this weekend. Please pray that I don’t get sick or lose control of my arms again. I really, really want to come home next week! For now, I’ll have to settle for a day pass on Thursday. Dr. Kim said she’d let me out for the day as long as I wore my mask and promised not to go anywhere other than the Ronald McDonald House and outside. I can’t wait!
THANK YOU ALL SO SO MUCH FOR THE PRAYERS! The nurses and doctors agree I AM A MIRACLE! Jesus takes such good care of me!
It’s time for my evening on the balcony! Talk to you again tomorrow!
Love you lots!
Jayci Joy

Hello! Jayci has had the best day yet! She gets stronger by the minute! She is nearly able to roll over and can hold her head for a few minutes before letting it fall now. She is learning to blow kisses and wave bye-bye again – her smile melts all who meet her. She has captured the hearts of the entire hospital! I cannot go anywhere without being asked about my sweet Jayci. Her physical therapist works with her twice a day now – I’m sooooo proud of the effort Jayci puts into it. She WANTS to get better too! We are excited about feeding her real food tomorrow! I know she’s ready – tonight I was eating M&M’s in front of her and couldn’t figure out why she was crying. Grammy Ju was trying to calm her when Gramma picked up a package of M&M’s for herself – Jayci reached for the candy and let out a huge wail – we all felt terrible, yet relieved! Jayci’s favorite candy is M&M’s - God has shown me that Jayci will be whole again soon! All she needs is time.
We are all looking forward to Thursday! I cannot wait to take her for a walk around the park! It’s amazing how I cherish the simplest things these days!
We are continuously in awe of God’s AMAZING work! Jayci Joy is an angel on earth – we can’t wait to see the plans HE has for her! She has already touched so many lives in so many ways!
We’re praying for chemo to go well and hope we can come home next week. We know we still have a long road ahead of us but know that God will carry us through as long as we keep our FAITH and TRUST in him. We cannot thank you enough for your continued thoughts, prayers, kind words, etc. . .you are all like a fresh breath of air everyday!
Love,
Guy and Kimberly


July 16, 2007

Hello everybody, I’ve made my mom and dad very happy today. I started off by sleeping nearly twelve hours last night. I am more alert to my surroundings and my arms and hands move more easily. I can reach out and grab stuff that I am interested in and I can nearly sit up by myself. I can almost roll over and my dad thinks that I will be able to hold myself up on all fours in a day or two. Oh yeah, we did a test today to see how well I can swallow today (which I was very good for, I didn’t cry or get mad even once) and well lets just say if it was a test in school, I would have made an A. They put me in a seat that looked and felt like my car-seat and it had an x-ray machine on both sides. They took an x-ray video of my mouth and throat while I ate and drank different things. The first thing mom let me try was chocolate pudding. I didn’t care what it was, I wanted it. I leaned forward toward the spoon and gobbled it up. I barely even tasted it before I swallowed it. Then I tried some applesauce and some Gatorade, I did great especially considering the fact that they were putting barium in my food and drink for the x-ray, that made it taste funny. When I got back to my room I drank four ounces of apple juice, it was so cool and sweet all I could do was smile. It sure felt great to have my bottle back and to finally have something wet to drink after twenty two days. I spent my two hours out on the deck tonight which I just love and I am now lying in bed waiting for Mr. Sandman to come. I’m getting sleepy now but I am excited about what tomorrow will bring hopefully I will grow much stronger and more mobile. Two other things are also on my list of hopefuls tomorrow, mom says I might get a real bath in the tub since they deaccessed my i.v. port today, and if I eat well and have a good bowel movement they will take out my feeding tube. That’s the last tube you know. Ok I can barely keep my eyes open now just want to say that I love you all and I appreciate you pulling and praying for me, I know that I am not alone.
And one more thing, would you mind praying for my Aunt Lidia tomorrow? They are supposed to induce labor so my new baby cousin, Gene, can make his appearance into the world!
Love,
Jayci Joy


July 15, 2007

HI! It’s been another GREAT DAY! I slept really good last night and got to see my Granpops, Grandad Jack, Papa, GiGi, Aunt Patti, Mema Betty, and Aunt Jan today! I also got to go out on the balcony for an hour and a half tonight! I’m really tired and have a big day tomorrow so I’m going to make it short and sweet tonight. Please pray that I pass my swallowing test tomorrow. When I do I’ll be TUBE FREE! No IV’s, no feeding tube, nothing! HOORAY! It would be awesome if I could eat on my own for a few days before I start chemo again on Friday. I also really need the doctors to figure out how to make me poop at least once a day before chemo. – keeping that chemical in your system for too long can cause ulcers and all kinds of tummy problems you know. Jesus is my strength and I’m getting closer to going home everyday! Maybe I’ll even make it by the end of the month!
Love you all!
Jayci Joy

Hello! Jayci has had another awesome day! Dr. Habersang should be back tomorrow – we are anxious to hear his comments on the events of the week. Jayci took her last dose of methadone tonight! PRAISE GOD! Now she only has to take Tylenol as needed and Magnesium Citrate and Zantac for her stomach as needed! When she passes her swallowing test tomorrow we’ll be able to start feeding her! Once she eats we’ll be able to deaccess her port until Friday and will take the feeding tube out for good! Our Jayci will be “TUBE FREE” for 4 WHOLE DAYS! I’m praying we’ll at least be able to take her on a walk around the park before chemo starts again. I’m so proud of the progress she’s made! She truly is a miracle!
Someone shared the following verse with us –
We thought we’d share with you.
Love,
Guy and Kimberly


July 14, 2007

HELLO! Today has been another GREAT DAY! I sucked on my pacifier all day, starting grabbing more stuff with my hands, and played with my hair all day long! I slept a lot today because I had a rough night. My tummy really hurt because I was way too full! I finally got relief this morning and rested most of the afternoon. Gramma took me on a long wagon ride and we’re going to sit on the balcony later! I LOVE getting out of my room! I’ve been in it soooo long, it kinda feels like a jail cell! Please keep the prayers coming! I get a little better everyday!
Love,
Jayci Joy

Hi! We’ve had another good day! Jayci gets a little better everyday! She plays and laughs and tries a little harder to use her hands all the time! We are sooo proud of her! She is going to do a swallowing test on Monday and the doctors are going to let her start eating if – not if; WHEN - she passes it! We are all ready for the feeding tube to disappear! Dr. Habersang should be back by then too; we’re hoping she gets strong enough to at least go across the street and walk around the park before her next round of chemotherapy starts next Friday. Thank you all so much for your generosity – we will never be able to repay half what has been done for us!
GOD’S WORK IS AMAZING! Just look at the picture and short video of Jayci; we’re astonished at how far she’s come in the 10 short days she’s been off the ventilator! Please keep the prayers coming and God Bless!
-Guy and Kimberly


July 13, 2007

Well it’s been a great day, I feel a little better each day it seems. Today I can move my arms and hands a little more and I am less irritable. I got my pacifier back and figured out how to use it this afternoon which is great. I also got to go outside and meet some other cancer patients, they were very inspiring and gave me great confidence. We had a painting party together, their paintings were great and I feel that mine was pretty dog gone good too, especially considering the fact that I had to use my feet ‘cause my hands will not do what I tell them to yet. I also had special visitors today too. My cousin Kennedi came and it felt soooo good to see her, I hope to see all my youner cousins very soon too, I just have to get a little stronger first. Also I had a visitor all the way from Dallas. It was my aunt Patti Hunter, she brought mom and dad and me some nice gifts. And finally, I got to see my Poppa and G G Marilyn. That’s always a treat especially since Marilyn had surgery on her knee only yesterday. Ok I am starting to get tired now but like I said today has been great and I am growing confident that each day will make me stronger and more back to my old self. I love you all and miss you greatly.

Love,
Jayci Joy Nickels

P.S. (I start chemo again next Friday the 20th so I can still use those very thoughtful prayers.)

GOD IS GREAT! Today has been full of BLESSINGS! Jayci loves to suck her pacifier again, says “HI” and growls like she used to, and has started moving her arms even more! When Kennedi came she wouldn’t take her eyes off her – a sight Daddy and I both needed to see. She definitely knows the difference between friends and strangers. Dr. Nandu watched her interactions today and feels that maybe our Jayci just needs time. He also said he and the other doctors are unsure why her arms aren’t working they way they should. After today, Guy and I are confident she will make a complete recovery; it will just take time. THANK YOU for all the emails, letters, and PRAYERS! They make each day brighter! Please keep sending those prayers our way! We know GOD is the reason Jayci continues improving!
- Guy & Kimberly



(WRITTEN THURSDAY, JULY 12, 2007)

HIDEE! I just have time for a quick update tonight. It's been a really busy day and I'm tuckered out! My MRI went good today; the doctors didn't see anything and they even said my Chiari malformation is smaller than it used to be. J
So. . .now it looks like we sit and wait and HOPE my arms continue to move more everyday and my interactions with people continue improving! The doctors don't think I have neuropathy from the chemotherapy anymore, they just think the nerves that control my hands and speech are numb or something. My dad can explain what they said soooo much better than I can; I'll get him to write as soon as he has time. I'll talk to you soon!
Love,
Jayci Joy

Hello! Tonight our sweet angel interacted with us more than we could have hoped for! We were taking our evening walk and found a large mirror in the therapy room. We stopped to show Jayci and began talking to her in the mirror. She began smiling and kicking her legs. We constantly remind her of things she used to do and say and tonight she actually tried to complete one of her old tricks! For those of you who know Jayci, she plays with her tongue and makes a noise that sounds like: "Deedle, Deedle." Guy reminded her of it and she stuck her tongue in and out several times then smiled at her daddy! What a sweet, sweet sight! She was also able to find her daddy, mommy, and baby Jayci in the mirror when asked! God knew we both needed tonight! Our baby girl is getting better and we have been reassured she'll be up to her old tricks one of these days!
The MRI was clear today! PRAISE GOD! The doctors seem to think there is an issue with the nerves controlling Jayci's arms and speech – Dr. Turner and Dr. Nandu gave us a great explanation that Guy will have to tell you about when he gets a minute; Jayci was not exactly happy at the time and I was pretty distracted trying to console her. They don't think it is neuropathy anymore. The only bad news we heard today was the only thing they can do for her is to wait and hope things continue improving. How long? Who knows. . .we are hoping for days, weeks, or even months at the longest. Both Dr. Nandu and Dr. Reguira seem to think her symptoms are a result of the night her ventilator tube was pulled; a night I was hoping we would soon forget.
It looks like we are going to be in the hospital for quite awhile. Jayci is unable to swallow anything without aspirating. We are trying to get her to suck on her pacifier (something she was rarely seen without in the past) then we are hoping to try a bottle soon after. Once we can get her to eat I think we'll at least be able to bring her home.
Dr. Harbersang will be back next week; we are anxious to hear his opinion. After visiting with him Guy and I are going to decide whether we go to Dallas or stay here. Please pray for Jayci's continued improvement and for wisdom for the doctors and Guy and I to make the right decisions on Jayci's future care. God is GREAT and continues providing the strength we all need to make each day special!
Love,
Guy and Kimberly


July 11, 2007

HIDEE! I have had a pretty good day! I only got in trouble breathing a couple times and the nurses were able to calm me down quickly and fix me with only a breathing treatment! HOORAY! The only bad thing is the nurses told me I couldn't go on wagon rides outside anymore for awhile – they think I'm allergic to something out there and that's why I get into breathing trouble. Darn! Dr. Nandu has been consulting with other doctors and they all said my MRI and EEG look good. They don't know why I can't move my arms or hold my head and body. They think it may be neuropathy (pardon my spelling) – something going on with my nerves. Dr. Nandu is talking to more doctors in Dallas and I might even get to go there if the doctors in Amarillo can't help me feel better! Dr. Nandu is going to run another MRI test with dye and do some kind of nerve test tomorrow. He has been working really, really hard to figure out how to help me get better! I am responding more and more and even smile and laugh at times! I've been pretty cranky today – Dr. Nandu thinks it's because I'm nearly completely off my pain killers and sedatives and am beginning to feel more. My throat really hurts and I try not to swallow which makes mama and daddy really upset. They are afraid I'm going to aspirate again. I am doing better and really appreciate all the prayers. Jesus helps me do better everyday!
Love,
Jayci Joy
Hi! Jayci is using more higher level thinking skills everyday! THANK YOU JESUS! She shows emotion – cries appropriately, recognizes familiar faces, shows stranger anxiety, etc. Her doctors are working tediously to figure out why she has little strength in her arms.
They think it might be neuropathy (pardon my spelling – I haven't had time to do any research yet). By the way the doctors are talking, I think neuropathy is when the patient's nerves are inflamed and irritated and it can sometimes be degenerative. Jayci will have another MRI done at 4:00 tomorrow. This MRI will be done with dye – they are looking at her spinal column and a few other things. . .I'm so tired I can't remember everything he said! SORRY! I'll make sure to find out all the details before the test tomorrow! They are also going to do some kind of test on her nerves – not an EMG (it would be too dangerous because her white blood cell count is so low and the risk of infection from the needle pricks is too great). So. . .we sit and wait once again. We are hopeful the problem will be found and a treatment or therapy is available here. However, Dr. Nandu has recommended we go to Dallas Children's Hospital if appropriate care is unavailable here. Dallas has wonderful oncologists, pediatricians, pediatric neurologists, etc. all under one roof, AWESOME! We are ready to do whatever needs to be done to provide the best care for our sweet angel. Thank you again for the prayers! Things look better everyday. There isn't a tense or scary moment that passes when we don't feel some relief, some calming sensation and are reassured of God's presence in Jayci's room. He is healing our baby girl! We'll keep you informed of our situation as information becomes available!
Love, Guy and Kimberly
They think it might be neuropathy (pardon my spelling – I haven't had time to do any research yet). By the way the doctors are talking, I think neuropathy is when the patient's nerves are inflamed and irritated and it can sometimes be degenerative. Jayci will have another MRI done at 4:00 tomorrow. This MRI will be done with dye – they are looking at her spinal column and a few other things. . .I'm so tired I can't remember everything he said! SORRY! I'll make sure to find out all the details before the test tomorrow! They are also going to do some kind of test on her nerves – not an EMG (it would be too dangerous because her white blood cell count is so low and the risk of infection from the needle pricks is too great). So. . .we sit and wait once again. We are hopeful the problem will be found and a treatment or therapy is available here. However, Dr. Nandu has recommended we go to Dallas Children's Hospital if appropriate care is unavailable here. Dallas has wonderful oncologists, pediatricians, pediatric neurologists, etc. all under one roof - AWESOME! We are ready to do whatever needs to be done to provide the best care for our sweet angel.
Thank you again for the prayers! Things look better everyday. There isn't a tense or scary moment that passes when we don't feel some relief, some calming sensation and are reassured of God's presence in Jayci's room. He is healing our baby girl!
We'll keep you informed of our situation as information becomes available!
Love,
Guy and Kimberly


July 10, 2007

Hello Friends! Today has been a good day! I actually got to go outside for a little while! Grammy Ju and Mama made me a little chariot (they put my carseat in a wagon) and pulled me all over the place. It was great seeing all my friends outside my room! The only bad thing about it was I had to wear a dumb mask – it's hard to breath with that thing on you know! My physical therapist even did my therapy outside! She is really nice and is teaching me how to hold my head and body and move my arms again. She was impressed at how much my eye tracking skills have improved since yesterday! I will continue working hard and know I'll be up to my old tricks eventually! I just keep telling mama and daddy to give me some time – I've been through a lot you know! I also got to wear my pretty new dresses the last couple days. I must look very pretty because everybody takes time to come visit me when I'm wearing them! I'm so lucky to have such wonderful doctors and nurses! They make sure I'm given the best care everyday! I need to take a little nap now – I know the doctors will want to do more tests later! Please keep praying for me!
Love,
Jayci Joy

Hello Again! We received the preliminary EEG and MRI results and they both look good. The tech. who performed the EEG said he didn't see any seizure activity and Dr. Reguira said the MRI looked okay to him – he has a friend who is a pediatric neurologist in Austin who is looking at the MRI and Jayci's file with him. Hopefully we'll have a complete report back soon. Until then we will continue physical and speech therapy. Jayci finally let me hold her yesterday without crying or throwing up! She is even visually responding to us now! Today Judy and I got her to laugh by tickling her toes – such a sweet, sweet sound! Her vitals are picture perfect and we have gone nearly 36 hours without oxygen! The chemotherapy is working – the mass is less dense now and her white blood cell count is starting to increase again! GOD IS GREAT! Our concern now is neurological. We don't understand why she isn't moving her arms, sucking, trying to make sounds (besides crying) or responding very much to stimuli – she is very withdrawn. We have faith that God will give Jayci's incredible doctor's the knowledge they need to figure out what's going on. Sometime today would you take time to pray for all of us? Please pray for Jayci's body to continue to heal, for positive EEG and MRI test results, for Jayci to begin using her arms and trying to speak. Would you pray for strength for Guy and I; pray that we remain HOPE-FULL and patient as the doctor's run more tests on our precious angel. It is prayer that has kept Jayci with us and prayer that gets us through each day. Jayci has definitely taught us the importance of living each day as if it were the last! Again - we cannot thank you enough for keeping us in your thoughts and prayers! You are our strength!
Love,
Guy and Kimberly


July 9, 2007

Hidee!
I have been keeping my mom and dad really busy so I asked gramma to write this update for me. On Saturday, I had a pretty good day until late afternoon. I am having trouble swallowing and I choked. The doctors said it was like I was trying to drown, so my throat constricted - I gave everyone a real scare, they worked on me for several minutes and had to give me a combination of helium and oxygen to get me breathing again. Everyone was really worried - and the doctor had to give me steriods to help decrease the swelling in my throat. I had may last dose Sunday evening - The steriods have helped and now I am able to breathe on my own again. I still need mama to remind me to swallow, but I am getting better at it.

Today I will have a bunch of tests done - mama says one is an EEG and the other is an MRI - they are trying to see why I just can't seem to respond and move my body very good. Your prayers have helped so much and today I really need them - please keep sending them my way. I want to get better! Please pray for my mom and dad too - they are getting pretty tired and they need to see me get better.

I will let you know how my tests turn out - don't forget to pray today! Please forwatd this to all my friends.

Love,
Jayci Joy


July 6, 2007

Good Morning! I had a really good night last night because I finally pooped!!! I even let mama sleep in the chair beside my bed as long as she would hold my hand. I am breathing completely on my own now and only have to have breathing treatments every 4 hours - YEAH!!! I started physical and speech therapy yesterday and am already making some progress. I can move my head from side to side and am able to control my arms and legs a little. I am starting to move my mouth a little and mama keeps telling me I have to start sucking soon - she's been doing some crazy stuff to my face to build my facial muscles back up. I keep telling my mama and daddy that I have been in bed a long time and have been through tons of trauma - it's going to take some time and patience to get back going again. My bloodwork came back okay this morning except now everybody has to wear masks, aprons, and gloves when they come into my room. I thought they were all crazy until mama and daddy explained that my immune system is obsolete and I absolutely cannot be around other people's germs or I'll get really sick again. I definately don't want that to happen. I'm down to only 1 IV sedative and they are trying to wean me off of it too. I kinda liked not feeling pain and am having withdrawals from all the medications I've been on. My nurses told me that it would take a couple days for me to get better and not be so fussy. Gramma, Grammy Ju and Uncle Chris and Aunt Lora bought me some really toys to start stimulating my muscles and brain. My therapists said it was important for me to be stimulated to get my brain and body working again. Mama and Daddy are hopeful that I'll be able to hold my head and body again soon. I just keep telling them to give me time - a girl needs a break every now and then you know!

Please keep sending your prayers my way! I have a long road ahead of me and know I'll need Jesus to keep carrying me through!

Love,
Jayci Joy

Hello! Jayci is doing pretty good this morning! We finally got rid of enough tubes to see our sweet angel again! During the next 24 hours the dr.'s plan on weaning her off everything - good news! We just have to make it through withdrawal time. Constipation has become a big problem. The only way Jayci can flush her body of the chemicals from chemo. is through urinating and pooping. The dr.'s have said that the longer she goes between bowel movements the more likely she will develop ulcers in her stomach and bowel - not good. She started physical and speech therapy yesterday - Guy and I are working to stimulate her muscles and brain - Jayci doesn't exactly enjoy this, but she is already showing some improvement. She is like a newborn again; she has to learn how to hold her head and body, suck, etc. We are confident she will make a full recovery; it's just going to take awhile. Please continue sending up prayers for her - we would not be where we are without God's help! He continues to give us the strength and courage we need to help our sweet Jayci recover!
God Bless!
Guy and Kimberly


July 5, 2007

HIDEE! Today is the first day I've been really aware of the things that are happening around me and I don't like it one bit!!!! I have vampires for nurses and my doctors insist on showing up right after I fall asleep to poke and prod on the places that already hurt. My tummy hurts really bad because I haven't pooped in awhile and mommy and daddy said something called "chemo" was making it feel that way. I also don't understand why my arms and legs are limp - mama and daddy say it's because I've been asleep for over a week, but I think they must be making that up because I would NEVER, EVER sleep that long!!! My throat also hurts because I guess I've had a tube in it for several days as well. It just hurts everywhere!!! Mama and Daddy must have lost their minds to let all this happen to me! They keep telling me that everything will be okay and I'll get to feeling better soon. They also tell me that people all over the world are praying for me to feel better - that means I will feel better really, really soon because I've learned that Jesus heals all things. I think I need to take another quick nap before the vampires show back up. I miss all of you and can't wait to see you! Mama is going to type now.
LOVE, LOVE,
Jayci Joy

Today is the eleventh day of our hospital stay. Jayci becomes more responsive as the sedatives wear off and we are beginning to see some traits of our little angel's personality reappear. She is extremely weak and we know it will take quite awhile for her to regain her strength. Last night was pretty rough. She is alert enough now to know she is sick and doesn't understand what's going on. The chemo has made her nauseated and her muscles are flacid due to our long hospital stay. The hospital staff was very kind and brought in a regular hospital bed instead of a crib so Guy and I can hold and comfort her. It's so hard to see her sweet little body hurt. . .we find comfort knowing God is working extra hard to kill the sickness in her body. The x-ray's continue to improve, the bloodwork is picture perfect, now we just have to be patient and trust God to continue his miraculous work. THANK YOU all so much for everything you've done for our family. . .we know that the prayers are working and can't wait 'til Jayci is able to sit up, smile, and say "HIDEE" again. We'll continue keeping you all informed!
Love,
Kimberly


July 4, 2007

The dictionary defines a miracle as: such an effect or event manifesting or considered as a work of God.
Mama and Daddy tell me daily I am MIRACLE - a work of God. Every breath I take, every move I make, is proof that Jesus answers prayers.

I'm getting better everyday! My tubes are gradually disappearing - (YEAH!) - and I might even get to have my ventilator tube pulled this afternoon! I think that's the best INDEPENDENCE DAY gift any girl could receive. All of the swelling has disappeared; Mama says I look like Jayci again. I am very weak and am resting quite a bit. I'm also still heavily sedated - my nurse is surprised I'm moving around as much as I am. I am able to open my eyes and look around the room some - Lizzie, the "child life" specialist - brought me a DVD player so I can watch movies from bed. My body is reallly sore for all the poking and proding it's been through, but mama keeps saying she's going to hold me as soon as the ventilator is gone! I think both of us are past ready for that! (The mass in my right side continues shrinking - my lung has more capacity everyday!)

I hope you all have a HAPPY FOURTH OF JULY!
Please keep praying for more MIRACLES for me - they continue occuring!
I LOVE YOU!
-Jayci Joy


July 3, 2007

Hide do! i just wanted to send you all an update to let you all know how terriffic I am doing! Yesterday I had an MRI done to check for brain damage from the respirator incident. It all went really well and I don't have any damage! Your prayers are working! They did however find out that I have something called Arnold-Chiari Malformation but it is nothing to worry about and if I do have any problems with it later in life we will deal with it then. They also did a coagulation test and there were no clots found anywhere. Right now my organs are all working very well and I am starting to open my eyes every now and then to take a peek at mom and dad to make sure they are still here. They are weaning me off of the ventilator and they will probably take me off of it tomorrow! Yeah! Clap.. Clap..! So keep praying because I really want to go home!
Thanks for everything!
Jayci Joy


July 2, 2007

ROUND ONE OF CHEMO. COMPLETE!!!! HOORAY! Today Dr. Habersang deaccessed my port so it has time to heal before my next round of chemo. beginning on July 20th. I am doing better - the more lines that disappear the better things get. :) I am beginning to wake up and move around some - Dr. Habersang continues decreasing my paralytic and sedative so I can get strong enough to wean off the ventilator. I am going to have an MRI done today to check my brain and size/position of my tumor. We know the chemo is working; the tumor is visibly smaller on x-ray. PRAYER IS POWERFUL!!!!
(Mama is working on setting me up a website for updates - she'll let you know when it's up and ready.)
I LOVE YOU ALL!
-Jayci Joy


July 1, 2007

Hello Friends!
I am slowly getting back to the point I was a few days ago. Mama and Daddy are very "HOPE-FULL" that I will make a full recovery after Saturday's early morning scare. (Jayci's ventilator tube was pulled out while the respiratory therapists were working on the heater to the ventilator. She is unable to breath on her own without it and CPR was performed for at least 10 minutes before Dr. Habersang was able to re-intubate her. It took quite a while to get her stable again.) Mama and Daddy were not handling the events very well yesterday morning and found themselves giving up hope. Around 8:30 mama had a strange, but calming feeling come over her; she got up, wiped her tears, and began putting her faith and trust back with God where it belonged. The power of prayer is AMAZING! From that moment we have only heard good news. It looks like I have good brain function despite the trauma - we'll know more after a few tests are run AND 72 hours pass. Last night was better. This morning mama seems to think we are back where we started a week ago - a BLESSING! She and Daddy are still scared and are being overprotective of my vent tube, but they both keep remembering God's word: "Fear not, for I am with you. I have redeemed you, I have called you by name, child you are mine. When you walk through the water I will be there, and through the fire. You'll not be burned. You'll not be drowned. For I am with you." Thank you all soooooo much for the PRAYERS, inspiring stories, and kind words. You have all become our life support and continue to remind us that miracles do and HAVE happened. I am a MIRACLE and the three of us are still being carried through the fire and water - there is still only ONE set of footprints in the sand. We are keeping our faith and trust in God and are "HOPE-FULL" things are back to normal soon. Mama wanted to send the following email to all of you - it really touched her and daddy.

I am praying for sweet Jaycie. Unbelieveable. But, this I know: God does all things well. He IS love. He will lead, all we are to do is follow. To go the same direction and to be likeminded with Him. I was talking with an 85 year old war vet and after detailing the traumatic events of his life, I asked him how he survived, quote " I placed my footsteps in the exact place of that of my captain, I did not look to the left or the right. Danger was on all sides. My survival was to follow close behind my commander, trusting him."

His name is Max, a precious Jewish gentleman. Even though He still isn't sure Jesus is the true Messiah, he related to my Chritian walk. I shared with Him "that" is how a true believer lives the Christ life. Placing our steps and trust in the One true Commander. Danger is on all sides, but Faith, Hope, and Love is our uniform.

I love the greek word for Hope often translated in His word;The happy anticipation of something good. Hope is an attitude. A happy one at that! My prayer for Guy and Kimberly and sweet Jaycie is this: Romans 15:13 Now may the God of our hope, so fill you with all joy and peace in believing(through the experiences of your falith) that by the power of the Holy Spirit you may abound and be overflowing(bubbling over with) HOPE. amp. Bible

Don't lose HOPE, as Emory says "if we lose hope those around us will lose hope as well."
Remaining HOPE-FULL for them.

I LOVE YOU ALL SOOOOO MUCH AND WILL BE BACK PLAYING SOON!
-Jayci Joy


June 29, 2007

HI EVERYBODY! I asked my wonderful uncle Pisssssssssss to send a quick email to everyone to once again say "THANK YOU!!!! for the prayers, gifts, visits, phone calls. . ." and also to give you another update. Since this is uncle Pisssssss's first time at this make sure to see who all he sends this to and please fill in everyone he forgot. He said he didn't skip anyone on purpose, he just doesn't know how this works you know. I have also started sharing all the goodies you have sent with the nurses and doctors and they love the chocolate, especially my Dr. Habersang, he is my favorite you know. I think I have them all won over as well, because dad pulled the picture out of his wallet to share with everyone. Now everyone can't wait until they get to see me smile and play.

Since I will be starting chemo now, I won't be able to see you for a while now. The Dr's even told my Mom and Dad that they would have to stay all germ free for me too. Dad has even stopped smoking for me, so say some special prayers for him too. Mom has told me that everyone is really helping out with getting everything ready for me to come home even though it will be a while, so please keep sending your prayers my way - I can feel them working and I know they will help me get home quicker. Jesus loves me and all of you, you know.

Love, Jayci Joy

Here is a message from uncle Pissssssssss:

Hello! Jayci's tests are complete and we hope to know all the results by the end of next week. She just came out of surgery where they put the port in for the chemo, and they are hoping to start chemo as soon as possible. The surgery went well, but it took a little bit longer than expected because they had troubles getting everything perfect. They took some more x-rays and everything is perfect. They are just going to wait until she settles back down and then they will begin the chemo. Once again a good report from the doctors.
Jayci's vitals are all looking very good. She is still on the ventilator at 20% and is still heavily sedated and will remain that way for several more days. They will reduce the paralyzing drug so she can wiggle a little bit to help with the swelling. Other than that, the prayers are obviously working with her vitals and the way she is responding to the treatment thus far. Please continue to pray for the effectiveness of the chemo against the tumor. The quicker the response the quicker she can come off the ventilator and I know we are all waiting for that news. On behalf of Guy, Kimberly and the whole family, thanks for all your love, support, flowers, goodies, and most importantly the prayers. We definitely would not be where we are now if it wasn't for all of you. Thank you very much.
Love, Chris, aka Uncle Pisssssss

Jayci's vitals are all looking very good. She is still on the ventilator at 20% and is still heavily sedated and will remain that way for several more days. They will reduce the paralyzing drug so she can wiggle a little bit to help with the swelling. Other than that, the prayers are obviously working with her vitals and the way she is responding to the treatment thus far. Please continue to pray for the effectiveness of the chemo against the tumor. The quicker the response the quicker she can come off the ventilator and I know we are all waiting for that news. On behalf of Guy, Kimberly and the whole family, thanks for all your love, support, flowers, goodies, and most importantly the prayers. We definitely would not be where we are now if it wasn't for all of you. Thank you very much.


Love,
Chris, aka Uncle Pisssssss