Queen Mom & Princess Shantel

CHRISTMAS IN HEAVEN

2009-12-24T08:16:00.004-05:00

MERRY CHRISTMAS MOM!

We know you are having the best Christmas ever singing with the angels, worshiping the Lord and experiencing Heaven first hand.........The true meaning of Christmas!!!

The tears come often and in buckets, the hurt is beyond words.......we miss you terribly!!! Our Christmas will be difficult this year but we know you are in good hands.......I mean who better to take care of our Mom but God himself!

We love you Mom and will see you soon!

RUNNING FOR MOM

2009-11-09T17:41:00.002-05:00

This is so cool. This man is a very close friend of my parents. He owns a company called Chariot Eagle Industries and has factories in Florida and Arizona. He runs the Boston Marathon with the Dana Farber Team. Last year and this year he ran with my Mom's name on his jersey. Very emotion for our family. Thank you Bob!!

"Tell Bernadine I once again am running the Boston Marathon in her honor. When I am in Boston I get to go to the dinner honoring all the Dana Farber runners, some of who are survivors, and the kids and adults from the area being treated at DF. Through most of my years I just didn't realize the courage and amazing attitudes of those affected with cancer.
Of course I will continue to pray and think of Bernadine and all that you guys are going though. God's richest blessings."

Bob

SWEET 16

2009-11-08T17:20:00.013-05:00

So, how do you celebrate your 16th Birthday when you're a patient at Duke Children's Hospital?
Well, with a very fun Karaoke party of course!!!

Shantel's Birthday is on Nov. 11th so we had her party this past Saturday in the lobby of the Children's Health Center. Our theme was music and fun......and did we ever have both!!!!

Mr. Skid is a professional Karaoke man. He was just AWESOME!!! Mr. Skid does karaoke every Thursday night on the children's unit. He has this incredible mixer and interacts with the crowd with singing himself. I think Shantel is his biggest fan! She loves Thursday night Karaoke and Mr. Skid knows what she sings and has it already cued up. Thank you Mr. Skid for being a part of Shantel's special day!

Now I have to tell you about Spencer. He works in Radiology. Spencer was like our Master of Ceremony. All I can say is he is the most hilarious, funny, energetic, fun, happy, creative, entertaining person I have ever met!!! Thank you Spencer for getting everyone in the party spirit!

You may be wondering about the three cakes. They each have a story. The middle cake is Shantel's and we put a picture of her being silly at home playing her guitar and dancing around. The cake on the right is her "babies" cake. Shantel had only lived with us for about 6 weeks before her 13th Birthday. One of the things we did for Shantel when she came to live with us was to think of something that was special and just hers. We came up with going to Build A Bear on each birthday. So her bears have the same birthday as she does. The cake on the left is Molly's, Shantel's dog. Molly we rescued so we don't know her age so we guessed with the help of our Vet. Molly turns 3, and you guessed it, her birthday is on Nov. 11th. So three cakes is our tradition.

Here are some pictures of our sweet girls 16th special day. Thank you all for making it so very, very special!!!

Shantel primping for her party

Shantel and Spencer

The princess singing Karaoke

Dr. and Mrs. Majure, Shantel's primary Pulmonologist

Former Duke nurse Andrea came from Washington DC

Shantel loves Karla, one of her RN's and Atia, CNA

Dr. Majure,Andrea and Charlotte w/ Shantel doing Proud Mary

"Proud Mary" with Charlotte.......really getting into it!!!

Jamie her Respiratory Therapist boyfriend

Awesome music man, Mr. Skid

BOO

2009-11-01T16:45:00.004-05:00

Halloween at Duke Children's........Thank you to all the Nurses and staff that make holidays so special for the kids!!

Here is Shantel with her dog Baby (Baby always goes to the hospital with Shantel) leading the Halloween Parade. The bike she is on is a special bike for kids with pulmonary issues. It's almost like self propelling. Shantel called it her limo.

Fun was had by all!!!

Shantel leading the parade

Shantel and Hannah Montana
AKA Caroline, Child Life Specialist

Here comes the parade!

Trick or Treat!

ONE YEAR.....AND WHAT A YEAR!!!

2009-10-01T19:31:00.003-04:00

You know that saying "life can change in a second"? Well, I can tell you I know about that first hand!

One year ago today, October 1, 2008, was the worst day of my life ......no, seriously it was! It's not just a saying! I flew to New York to spend the weekend with my Mom after what was to be a routine gall bladder removal. What happened late that afternoon wasn't supposed to happen.......The Dr's. found a rare and deadly cancer. I'll never forget the abrupt way the news was given to me and my Dad. Basically the bottom line was to take her home and let her get her things in order. He wouldn't even say that she might live till Christmas. He offered no alternatives, no hope.

WOW, October 1, 2009...........We celebrated life with dinner at Red Lobster! We celebrated the fact that Dr. in NY didn't know that GOD is hope, that prayer works and miracles do happen! The shear fact that Mom is still alive today is because GOD is the GREAT PHYSICIAN!!!!!!

Life as our family once knew it is forever changed. Dad and Mom live with me many weeks at a time while Mom undergoes treatment. Their world turned upside down. Dad had limited his ministry work and they've been uprooted from their home. The countless trips to Duke are too many to tell, the unbelievable amounts of meds given, the side affects of chemo and infected drain lines, the crazy amount of testing each week, the stress of getting those test results back, and the list goes on. The five of us kids have all dealt with it differently but have been united in doing what's best for Mom. We've amazingly been able to keep positive and upbeat and really embraced the each day is a gift attitude.

And what opportunities would have been missed if we hadn't taken the "Prayer Changes" attitude. All the Dr's, Nurses, staff we've come in contact with at Duke, other cancer patients, random people we've met in stores, etc. that we've been able to demonstrate that our GOD is an AWESOME GOD!

So, our family knows life is unpredictable, changes in a second and the future is unknown.......but we have chosen to live it to the fullest with the understanding that God knows what is ahead and has our best interest in mind.

Mom...........we celebrate with you this incredibly difficult year you've had and your wonderful spirit and look forward to many more years!!!

GIVING THANKS

2009-09-24T19:32:00.004-04:00

THANKFUL......

** Thankful Shantel's small bowel obstruction is gone
** Thankful Mom received a very good CT scan report today.......some spots are gone and the
rest have continued to shrink
** Thankful to have a job I actually like
** Thankful for the best family in the world
** Thankful God does answer prayer
** Thankful God loves me
** Thankful for Duke Medical Center
** Thankful to live in the USA
** Thankful for great friends
** Thankful for my dog......well, most of the time :)
** In all circumstances give thanks IThes 5:18

LET IT FLOW !!!

2009-09-22T11:24:00.003-04:00

SING TO THE TUNE "LET IT SNOW".............

The weather outside is cloudy and Shantel is going potty,
so since we're on 53, let it flow, let it flow, let it flow!!!! :):)

NO GO........GOLIGHTLY

2009-09-21T19:49:00.003-04:00

Some things never end........or in our case come out the end!!! :) Shantel is in a very serious situation at this time. She has a small bowel blockage which is a condition CFer's have to watch out for. We have been very fortunate to have avoided any serious blockage until yesterday. Her stomach is 36 inches around after 2 gallons of Golightly that didn't go and she is in severe pain. Last night they talked surgery which would be extremely dangerous for her......like life and death dangerous. So we want to avoid that option!! So today off we went to radiology for an enema.......and don't think it's like the enema's you are familiar with! It's a pickin missile!! Thanks to morphine she doesn't remember it and has been able to sleep this afternoon. Late this afternoon she had some small (oh so small!) success so we were very encouraged! Tomorrow we do it all again! We are praying that God will keep her safe as we navigate through another hurdle.

TODAY'S UPDATE

2009-09-16T22:39:00.002-04:00

Thank you everyone for thinking and praying for us today. It was a very long day but a good one.

Shantel's heart cath is one of the things on the checklist for her transplant. They also wanted to make sure nothing had deteriorated because she has been having some issue with high blood pressure recently. It was a good report. Her numbers have improved since her last cath so the meds they have her on are working. If I told you the med is Viagra would you believe me???? :)

Mom's chemo went fine. Her numbers continue to be stable. This is the first time I've actually gotten to go to chemo with her. Wow, what an operation and such a busy place! Next week is an eight week checkup with CT scan, blood work, etc. These checkups are always stressful for all of us because it's the checkups that tell us if the cancer is spreading and how things are going.

PLEASE VOTE FOR DUKE CHILDREN'S!!!

2009-09-12T22:02:00.003-04:00

http://xbox.childrensmiraclenetwork.org

If you get a minute log on to this link and vote for DUKE CHILDREN'S HOSPITAL. Children's Miracle Network is giving the top 3 voted children's hospital's the ultimate game experience.

I know first hand how much this means to the kids at DUKE!!!

YIKES!!!!!! HIGH SCHOOL!!!

2009-09-01T22:17:00.003-04:00

Can you believe Shantel started 9th grade? Here she is at the Duke Hospital School with one of her teachers this year is Mr. Jeff.

Shantel loves math, reading and science. She started social studies last year and has really enjoyed learning about the election, where the president lives and lots of other cool things.

The teachers really care about the kids at Duke and take a lot of time with them. I think it's so neat that they do all sorts of really cool things to make learning fun. Shantel really excels under them.

Duke Hospital School Teachers ROCK!!!

TWO STEPS FORWARD......10 STEPS BACK

2009-08-31T17:11:00.004-04:00

Couple of updates for you. Shantel is back in PICU. They moved her today after she started having some difficulty breathing yesterday. The Dr. said today she isn't moving any air through the airways so back on continuous nebulizers and heliox.

Mom has an infection at her drain site that won't heal so they came back to NC on Thursday for a Friday appointment. The Dr. put her on Cipro for the weekend and today she had a followup appointment. The meds appear to be working so they continued the Cipro and added a couple other drugs. She'll have another checkup on Thursday.

Nathan, Heather and the kids came over Saturday to spend the day. We had a wonderful time cooking out and hanging out.

Please continue to pray for Shantel that her breathing will stabilize until Nov. when she can have her transplant at Duke and for my Mom that the infection will heal so she can continue chemo.

UPDATE 8/19/2009

2009-08-19T18:15:00.004-04:00

Well, we are still in PICU and Shantel seems to be showing small signs of improvements each day. She is still on high doses of steroids and continuous nebulizers which they have slowly reduced the amount. The positives are she is awake more and eating. Last night she even played bingo.......every Tuesday night is bingo night for the kids. The Dr. said her air movement is better but she still struggles to breath if she moves too much. Her heart rate is slowly coming down as is her rate of breathing.

Mom is doing well. She wasn't able to have her chemo this week because her drain site became infected. She's back on antibiotics and it's clearing up. Her blood counts were good as was her cancer maker test. Dad and Mom have been enjoying their summer in NY. They will be coming back to NC in Sept. when Mom has here check up and is scheduled for a stent replacement.

Our lives are day to day.......sometimes minute to minute......but as my Dad reminded me just the other day that God loves Mom and Shantel more than we do and He has the perfect plan for them.

SUNDAY UPDATE

2009-08-16T18:43:00.003-04:00

Respiratory failure aren't the words you ever want to hear! Her CO2 numbers are coming back good so hopefully the treatments she is receiving now will keep her stable. They are still keeping a very close eye on Shantel. She had a good night last night....minus the fact we made many, many trips to the bathroom and bed changes thanks to Golightly! Oh, if you don't know what Golightly I trust you'll never need to know!!!!! :)
Her heart rate and respiration were better last night but started going up again this afternoon. We were very excited because she ate some spaghetti O's, was a little more talkative and played on her Webkinz some.
Please keep her in your prayers. She's not out of the woods by any means.

SHANTEL UPDATE

2009-08-14T20:53:00.004-04:00

Shantel is pretty much the same today. Her heart rate is high as is her respiration's. She is still on high doses of steroids and continuous albuteral and heliox. She sleeps most of the time because it wears her out to work so hard to breath. They are watching her closely. Honestly, she has everyone concerned.

On a positive note her CO2 levels were ok .........and she wanted Spaghetti O's !! :):)

We certainly appreciate all your prayers and thoughts and thank you all for your kind words of encouragement.

ROUGH DAYS

2009-08-13T17:02:00.003-04:00

The past two days have been difficult for Shantel and today they have moved her to PICU. She is having to work very hard to breath so they have given her 3 doses of 60mg of steroids (YIKES) which messes with her sugars.....at one point today her sugars were so high the machine didn't read it! She has also been put on continuous heliox, a combination of helium and oxygen, and albutural. Working this hard to breath wears her out so she has been sleeping a lot. We know she's in good hands at Duke with nurses, Dr.s and staff that care about her and take excellent care of her. We also know she's in the best hands with God and His timing will be perfect for her lung transplant. It's just so hard to wait!!

PARTY DOWN !!!!

2009-08-04T15:58:00.003-04:00

This is what a "SUGARLAND" party at Duke looks like!!

So, here's the story. Three years ago when Shantel came to live with us she was able to attend school. I would take her each morning and on the way we would listen to my IPOD which has my favorite group Sugarland on it. One morning I didn't have it on and as we got closer to school she says "Mel, put on "Settlin" and I'll be your backup singer." So it became our routine. Every school morning I put on Sugarland's "Settlin" and Shantel would sing at the top of her lungs as my backup singer. What was even funnier is that she had been watching the video on CMT and would do the motions also!

We took Shantel to a Sugarland concert when they came to our area. I was able to get seats 12 rows back.......it was awesome!!!!! Little Big Town opened for Sugarland. Shantel loves them also so it was a really special night. She stood on the chair the entire concert and danced and sang at the top of her lungs!

Last night Sugarland had an hour special on ABC so I asked Shantel on Friday if she'd like me to come up and we'd have a "Sugarland" party. She was all excited and planned the details. Being in the hospital so much means you have to think up fun things to do. Shantel decided we need to have Japanese food for dinner so I stopped at our favorite place and brought up the food. She thought we would also need popcorn so I took up a box of popcorn to pop. She had gotten all her meds taken and treatments done early so we could enjoy the "party." We ate dinner, she showed me her new webkins on the computer and played a game of Yahtzee, which I unbelievable won cause I rarely beat Shantel, all before the concert started. When the show came on we sat on the bed next to each other and sang the songs and laughed.

It was a special time!

Shantel showing off her "rock star"
bad self!

At the Sugarland concert with her new shirt

GREAT REPORT

2009-07-31T16:05:00.002-04:00

This summer Mom has being having her chemo treatments up in New York so they can be at home. She still does her follow up and check ups at Duke every six weeks.

Wednesday Dad and Mom flew in to Raleigh. What started as a 6:30pm arrival ended in a 1:00 am Thursday morning arrival. Yankee weather!!!!! Very long day for them.

Thursday Mom had six week visit with Dr. Uronis and all the blood work and CT scan that goes along with each check up. This was her first follow up since starting this round of chemo so we were all anxious to see the results. Great news!! The spots they saw on the last CT have diminished and even shrunk significantly!!! All her blood work was well in range, she hasn't lost any weight, and no new spots. The Dr's are really elated and honestly a little stumped by Mom's great results.

As I sit here and write this I can't help thinking how awesome our GOD is. Rarely does chemo work on gall bladder cancer and here Mom is defying the odds. There is no cure but how great is it to have the treatment working!! What an opportunity both Dad and Mom have had to be a witness of our GOD's love and perfect outcome for HIS children. One day when Mom was receiving radiation a lady commented to Mom how she had noticed she always comes to clinic with a smile on her face. Isn't it incredible that even in the middle of the worse days of your life God was still showing through Mom.

Me......I'm cautiously optimistic.......and thrilled beyond words that Mom will have more time with us!!!!!

OH CRAB!!!!

2009-07-29T14:28:00.004-04:00

One of Shantel's favorite things to do when she comes home is to go eat crab. Sunday we had a great time watching her eat 2 lbs. of crab!!!

JULY 4TH........DUKE STYLE

2009-07-10T12:04:00.006-04:00

One of Shantel's favorite things to do while she's in the hospital is "Playroom Time". Since she is on contact isolation she gets one on one time with Carolyn, the Child Life Specialist.

In the morning Shantel was very busy decorating the playroom with Carolyn for the 5th floor July 4th ice cream celebration. For lunch we joined the awesome nurses of 5300 for lunch. They did a pot luck and we brought a July 4th tablecloth, put it on Shantel's bed and made a picnic of it. It was great fun......and the food was incredible!!!!

Here are some pictures of Shantel decorating the playroom.

Ms. Liberty herself!!

Making signs

A job well done!

Shantel with Carolyn, Child Life Specialist

50 YEARS

2009-07-06T13:57:00.019-04:00

HAPPY 50TH ANNIVERSARY TO OUR WONDERFUL, LOVING, AMAZING PARENTS!!!!

On Saturday, June 27th, 2009 we held a family gathering to honor our amazing parents as they celebrated 50 years of marriage.

It's a special time when we all can get together as a family and we had a fantastic week! We held a reception followed by a huge cook out and ended the day with a campfire on the hill with s'mores and snow cones. The rest of the week was filled with many fun activities........trips to Cooperstown for pizza, shopping for souvenirs, going to the Farmers Museum and Baseball Hall Of Fame, getting ice cream, going swimming, playing with cousins and just hanging out.

There is nothing as special as family.......enjoy each and every moment you have with your loved ones.....take advantage of every opportunity you have to spend with them......don't miss a minute!

Enjoy a few of the hundreds of pictures we took over the week.

June 27th, 1959

Dad pinning on Mom's flower

June 27th, 2009

Scott holding Mom's wedding dress

Man.....what a good looking bunch!!!!!!

Dad, Mom with Grandma Rachel

(Grandma is 93)

The cutest Grandkids ever!!!

Scott, Kristy, Alex, Parker, Landry and Luke

David, holding Ella, Kathy, holding Elijah,

Lauren and Kelsey

Nathan, holding Madeline, Heather with Hannah,

and Rachael

Grandpa and Rachael

Signs the Grandkids made

another sign

The Grandkids made reserved seating for

Grandma and Grandpa at our picnic

David making his famous smoked ribs

Nathan doing the hamburgers and hot dogs

Tim hanging out

Cutie Ella

Mom, Dad and Grandma Rachel enjoying our

picnic

Cool Dude Alex

S'MORES, SNOWCONES, CAMPFIRE FUN!!!!!

2009-07-06T13:33:00.016-04:00

More fun from our week with Dad and Mom.

Nathan's baby, Hannah Grace, 8 weeks old

Landry and Colden

David and his oldest, Kelsey

Snowcone fun!

Kathy and Lauren

Luke

Kristy, Luke and Parker

Mom, Scott and David's little boy Eli

Grandpa and the boys from Texas

Nathan, Heather, Rachael, Maddie and Lauren

Kristy and Parker

Grandpa with Ella, Rachael and Landry

Mom loves the s'mores!

LOTS OF UPDATES

2009-06-21T08:39:00.006-04:00

This household has had a busy week!! Shantel was able to come home from Duke!! WOOHOO!! She has been doing well so far. She has a Home Health Nurse that is with her during the day while we work. She came home on IV's and that's a 24 hour process. I take the night routine and Deb does the morning. Shantel has 3 IV's every 6 hours and pills every 2 hours. She does breathing treatments 3 times a day with extra treatments as needed. One of our "traditions" is when she comes home we take her to eat crab legs. That girl can down 2 lbs. by herself!! So we have done that and we've gone to Walmart once to get a new Nintendo DS game. She had a transplant clinic visit Friday which went very well. Other that that we try to keep her inside as much as possible. Molly (the crazed Labradoodle) is so happy to see Shantel. She just comes over to Shantel and lays on her back so Shantel will rub her belly. Shantel just loves that dog!
We are so happy to have her home!!!

Mom had her 3rd round of chemo this week. She does well but gets sick on the 2nd day after treatment. Otherwise she feels pretty good and looks great! She tires very fast but that's to be expected. Dad and Mom left today to go back to NY for a few weeks. Mom will continue chemo up there but return to Duke for all her Dr's visits and checkups. They will be celebrating their 50th wedding anniversary on June 27th. All the kids and grandkids will be there. Will be great fun!!

Please continue to pray for them both. For Mom that the treatments will work and for Shantel that the lung transplant will come soon!

shattered

2009-06-05T21:18:00.000-04:00

For those of you that have just begun reading my blog I thought I'd repost how we started our journey into the horrible world of having a loved one with cancer.

that's the only word I have for Oct.1, 2008.......shattered. This is a day I'll never forget, although I'd like to! Mom went in for what was to be a routine gall bladder removal and was diagnosed with cancer. Mom had asked me to come up for the surgery. So being the favorite daughter (for those of you that don't know us, I'm the only daughter!) I went to NY for a few days to help out. My brother David picked me up from Albany airport and took me down to Cooperstown hospital. We got there about 2:00 and Mom was scheduled to be out of surgery soon. David hung around to see Mom but had to leave to get back to work that night. It was getting to be 4-4:30 and both Dad and I were getting uneasy about the length of time the surgery was taking. We both knew if they had to open her up instead of doing laproscopically like they had originally planned it would take longer. I think we both knew if that was the case it was going to be a longer recovery. I don't think either of us were thinking something terminal.....at least I wasn't.
So when the surgeon came to get us he took us in a small room. Now he may have been a good surgeon but he had zero people skills!! In a nut shell he told us Mom had gall bladder cancer, it was bad, there was no treatment that works and to take her home so she can get her affairs in order. BHAM.....there it was.....my Mom's going to die. No offer of second opinion, no nothing.....just take her home.
I use to wonder why people sometimes do odd things when they get bad news. Now I know! You think of the dumbest things.....like not getting to go to a restaurant or a store.....just dumb things. Your mind goes numb, you wonder why people keep going about their business. Then you go in overdrive and now all these things have to be done and everything is urgent and everyone has plans, etc.
Dad was a mess which made me nervous because I had never seen him so distraught. I knew I had to call the family which wasn't exactly on my "things I'd like to do in my life" list. We somehow managed to pull it together and went to meet Mom as they took her up to her room. This hospital is old and they have double rooms which means she had a room mate. The room was very small and no room to sit. I pulled up a chair and squeezed it by the bed. The nurses kept telling me that I'd need to sleep in the family room and couldn't stay with Mom. Needless to say I stayed with Mom! She was very groggy and I wasn't trusting the nurses to take care of her! Mom doesn't remember much about the hospital stay which is probably good.
Nathan flew in from NC. David picked him up and they came to the hospital. Tim lives close and came when he got off work the next morning. Mom's sister and 2 nieces drove from NC to spend the weekend. I was fortunate to be able to ride back with them which gave me an extra day to spend with Mom. Scott came to NC when Mom started treatments.
I believe God moved me to NC and had Deb working at Duke for this exact reason!! (along with Shantel) Deb went and found people she knows who referred her to the best Oncologist. She also got the name of the best surgeon who specializes in this area. She got phone numbers and Dad called and an appointment was made for the end of Oct. with Dr. Hope Uronis. Dad and Mom have moved in with me for the time being. I've given them my room which is very large and has a master bath. We call it their apartment. They have two comfy chairs to relax in and I set up an area for Dad to set up a little office. It's been nice having them here. I'd prefer it to have been under different circumstances but this is what it is so we're making it as fun as possible. Molly the crazy labradoodle had to get use to them but she likes them here now!
Treatments of radiation and chemo started the first part of Nov. and ended on Christmas eve. Mom has done fantastic throughout this first round. She's been really tired and her hands have black spots on them but otherwise she's done great! The Dr's are pleased with everything so far. Mom now has a break until Feb. 2 when she'll go back for the checkup, scans, blood work, etc to see how the first round has done. Depending on what the tests reveal will determine the next steps.
Please continue to uphold Dad, Mom and our entire family in prayer. This is extremely difficult for all of us. I think we've all done well so far....or at least we're acting like it!

FIRST ROUND IV CHEMO

2009-06-05T16:47:00.003-04:00

Mom had her first round of IV chemo today and all went well. I can't begin to describe to you just how awesome the people at Duke are! They were so good today, giving Mom lots of information, explaining everything, just making her feel calm and secure. The process was painless and afterwards Dad and Mom went shopping and out for lunch.

Monday she has an IV port put in and Thursday will be the 2nd treatment and follow up visit with the Dr. Mom's veins are hard to find so it's a necessity to have the port so they can administer the chemo through the port instead of an IV in her arm.

It's a very emotional time for our family so we covet your prayers.

CHEMO BEGINS

2009-06-04T14:45:00.004-04:00

This has been a very emotional day. Mom had a check up this morning with her Oncologist and there have been some changes. The CT scan found two spots on her liver and some "undefined" spots near the stomach lining. Mom's blood work was all good and her tumor maker test was in range but because of the spots on her liver they will begin chemo tomorrow. Not really the news we were praying for.

On Monday they will implant an IV port to administer the chemo. My understanding is chemo is very hard on the veins. Each treatment will be 1x a week for about 90 minutes. She does 3 weeks chemo, one week off. The goal is to keep the cancer in check. Dr. Uronis is very confident Mom will handle these treatment well. The Dr's statement was that Mom has already shown she's beaten the odds for this type cancer and done well so far so there is no reason to think she won't do just fine with these treatments. Mom won't lose her hair and she should have very little side effects which is all good news.

This report, although we knew it would come at some point has been very difficult.....especially for Dad. We thank you for your prayers and ask that you continue to pray for Mom and our family.

CHECK-UP TIME

2009-05-30T20:32:00.004-04:00

Dad and Mom will be traveling back to North Carolina on Monday. They had a three week break until Mom's next check-up so they took advantage of it and went back to NY. Mom has been feeling really good so we hope that translates into positive check-up results on Wednesday and Thursday. My sister-in-law Kathy had Dad and Mom's house all clean and sparkling with fresh cut flowers waiting for them when they arrived in NY. My brother David has been helping Dad plant flowers, mow and get the place straight after the winter. Dad and Mom have had a wonderful time these past three weeks.
But now it's back to reality and back to Duke. Wednesday Mom will have all her test done......blood work, tumor maker test, CT scan, etc. Thursday will be the consult with Mom's Oncologist, Dr. Uronis. We have been praying that things have stayed stable and Mom won't have to start chemo just yet.
Please pray for Mom as she goes through another round of test.....not only the physical stress but the emotional stress. Mom been very strong though this but as time goes on she is starting to get a little weary.

MAKING THE GRADE

2009-05-28T18:55:00.007-04:00

Shantel has done excellent this year in school. School you ask? How does she go to school when she lives at the hospital? Well, the Duke Hospital School of course!
There are some awesome teachers that teach school to the kids that spend extensive amounts of time hospitalized. They are employed by the Durham public school system.
Ms. Trish has been Shantel's regular teacher for the past three years. Shantel has excelled under her guidance especially in reading. She has exposed her to history which Shantel seems to enjoy, but math is still her favorite subject.
Katie is the most awesome science teacher in the whole world!!! If I would have had Katie when I was in school I would be aaaaaa..........something scientific! Katie has done all sorts of cool things with Shantel. They've written a book, learned anatomy, started a flower business learning about plants, flowers, and money, been to the science museum, had three science fairs and a bunch of other cool things.
This years science fair was the comparison of Shantel and Molly's (Shantel's dog) body parts. They enlarged a picture of Molly and used clay as parts like liver, heart, stomach etc. She drew an outline of a person and placed the same insides on that picture. Then Shantel gave her presentation about the likenesses and pointed them out on the display. Several nurses and staff of 5300 attended. Shantel did a great job!! Then Katie presented her a ribbon which she is very proud of!!
Thank you Duke teachers for all you do!!!!

A ribbon for her hard work

The presentation

Molly's insides

Shantel's insides

We love Katie, Shantel's science teacher

And we love Trish, Shantel's regular teacher

MY MOM, MY BEST FRIEND

2009-05-10T18:13:00.004-04:00

This is a perfect day to share some memories during my life of my Mom and me. I only wish I had been smarter in the past and made everyday Mother's Day! It makes me feel very sad that a terminal illness makes things so clear.
For those of you that don't know me here's a short background. My parents are Missionaries with Word Of Life. I am the first born and only girl. I have four brothers. We have lived in many different areas of the US and made many friends........but my Mom has always been my best friend!!!!
Some of my earliest memories are when we lived in NY. My Mom got me up in the middle of the night to watch a lunar eclipse. I also watched the first man walk on the moon. We tried to catch wild kittens rigging a plastic clothes basket, propping it up with a stick and attaching a string that went around the corner where we were hiding and bribing them with milk. When they would go in for the milk Mom would pull the string and the basket would fall down. We never did catch a kitten but we came close!!! When I was in 1st, 2nd and 3rd grades I tried out for a singing group called Little Singers. We wore blue pleated skirts and white blouses with the letters LS. Mom always made sure my outfit was pressed perfectly. As a matter of fact my Mom always made sure all five of us kids clothes were always ironed. I remember eating hot shredded wheat with butter for breakfast, watching the deer eating in the field across the road on snowy days, selling sweet corn, and going to Grandpa and Grandmas for Sunday dinner. I remember my Mom bringing home my brother Scott from the hospital. She wore a blue dress with a "B" pin.
I once tried to win a contest at church for bringing the most visitors. I wanted that Bible so much! I was in the third grade. Mom helped me call people and kept track of it for me.
I have lots of memories of going grocery shopping with Mom. That's where to this day I look for cans that aren't dented, picking items from the back, figuring the price to get the most for your money, how to bag items together. Mom would make her grocery list by aisle so she could get done faster!
Dad traveled a lot in his early days with Word Of Life. Since I was the oldest I was allowed to stay up later. Mom and I liked to make a can of Oyster Stew soup and watch Barnaby Jones. This was our special time.
Mom always did special things for us. She once made me red curtains for my room because I was on a red, white and blue kick. Friday night was popcorn and board game night. Even with five kids Mom always found time for fun.
I attended a Christian School my last three years of high school and then Cedarville for college. Mom made my clothes back then. I remember going to the fabric store and looking through patterns and picking out fabric. I now appreciate what all went into making clothes for your teen daughter with four other kids running around. I don't think either of us have been to a fabric store since!
The worst day of my life (up until Oct. 1 when Mom was diagnosed with cancer) was when I left for college. I can't even describe how horrible it was leaving. Now that I look back I would have changed that part and gone to college closer to home.
As an adult my Mom and I have gotten even closer. We can do anything together and make it fun. One Mother's Day I took her to St. Thomas. We had so much fun! One time we did a girls outing on Sanibel Island with my Sister-in-Law Kristy, Deb, and Mom. We can have fun just sitting and talking without doing anything. We can get to laughing so hard we almost wet our pants. We've had some great family vacations! I've been to Arizona with just Dad and Mom. We've gone to Texas to see Scott and his family, we've been to Disney many times and I've been to Florida to just stay with Mom and Dad while they were at Word Of Life. When I go to Florida there are always a couple things we always do. We have to go to the beach as much as possible to watch the sun set and eat grouper at this restaurant on the beach. We almost always go over to Orlando to Disney Village for the day.
Mom loves to go shopping! We usually make a day of it going to lunch and looking at every kids shop in the mall. You see, Dad and Mom have 11 grandkids that they are crazy about and Mom now has to look at every kids shop! It's gotten to be a running joke because she never brings the kids sizes with her so she is always calling my sister-in-laws from the store for sizes.
I've had the privilege of being with her and helping her afterwards during her hip replacement and two knee replacements. It was always hard to keep her still!!
Life has a funny way of changing fast. On Oct. 1, 2008 Mom went in for a routine gall bladder removal and was diagnosed with gall bladder cancer. This came out of no where. There were no signs, nothing in her blood test, scans or Dr.s visits. Nothing. Nathan and I have been trying to get our parents to move down here (North Carolina) for a long time. This is not how we envisioned spending time with our parents. The end of Oct. Dad and Mom moved in with me as Mom began treatment at Duke.
We still do as much as possible. Mom gets tired quickly but I have totally enjoyed having them here. They are using my room and we call it "the apartment." Thank goodness Deb can cook!! Even Molly the crazy Labradoodle has gotten used to them. It's fun to come home from work and be able to sit down to talk.
Mom feels good most days and we try to do things at least a few times a week. I took them to the Farmers Market and Mom loved it so I see that more in our future! They go over to Nathan and Heather's and Mom spends time with her sister. I'm taking every advantage to spend time with her......not the way I had planned but the way it is. It sounds so over used, but it's in the small stuff that makes things so special.
So, Mom, thank you for EVERYTHING!!!! I love you so, so much!!!!

TODAY'S PROCEDURE

2009-05-07T20:29:00.003-04:00

Today Mom had her stent replaced. Everything went fine and she's home resting. Dad and Mom plan to leave sometime tomorrow for NY by the way of Nathan's. Dr. Uronis, Mom's Oncologist, wants to see Mom the first part of June so they will be coming back to North Carolina for her check up.
Thank you for remembering Mom and our family in prayer. She's doing great!

MOM UPDATE

2009-05-06T18:25:00.002-04:00

Mom has been doing very well. Her blood work this week and her cancer marker test are all holding steady. She gets tired quickly so we pace ourselves when we do things. The past couple weekends I've taken Mom and Dad to the Farmers Market where we bought beautiful hanging baskets for the porch and flowers for the barrel out front. The next weekend we went to the big Flea Market at the Fairgrounds......amazing the junk that sells!
Tomorrow Mom has her stent replaced. This stent has lasted 4 months. Pretty good. Then they will be heading to NY for three weeks. Mom will be starting her second round of chemo in June so she wants to get some things from NY before then.
Please continue to pray for Mom.

BABY HANNAH GRACE

2009-04-26T13:40:00.010-04:00

CONGRATULATIONS to my brother Nathan, sister-in-law Heather, and big sisters Rachael and Madeline on the birth of Hannah Grace. She's a cutie!!!

Dad and Mom with the kids

Mom and baby Hannah

Rachael loves her sister!

Maddie loves being the big sister

Proud Mom and Dad minutes after the birth

APRIL.....ORGAN DONATION MONTH

2009-04-19T19:33:00.003-04:00

I'm writing this post with many emotions. April is organ donation month which holds a very special place in our hearts. With Shantel number 1 on the lung transplant list we are very mindful of what that call means. It's joy and anticipation of the opportunity for an extended life for Shantel, it's sorrow for a family that has lost a loved one.

Two and a half years ago when Shantel came to live with us, I knew transplant would most likely be in her future. It wasn't until I spent many, many hours at Duke on 5300, one of the pediatric units, did I come to appreciate the need for healthy people to take organ donation serious.

If you, or someone in your family has never had the need for medical care on a consistent basis or if you've never known anyone that has been in that situation, it's not something you would think much about. I would like to take this opportunity to encourage you to think about organ donation for you and your family. We are never prepared for a sudden or tragic death of a loved one but the reality of life is that death happens. What an awesome way to honor someone's life than by giving the gift of life to someone else! We will forever be thankful and grateful to the donor family of Shantel's lungs!

It's easy and simple to become an organ donor! Here are some web sites so you can read all about donation. http://donatelife.net/, http://unos.org/, and http://cff.org/.

HAPPY EASTER 2009

2009-04-11T19:01:00.005-04:00

Happy Easter!!!
As I've been driving this week I've had a lot of time to think about Easter and how it's taken on a different meaning in my life this year. It's been incredibly sad knowing my Mom will eventually die from this cancer as will my little girl Shantel of Cystic Fibrosis. I now understand how sad God must have been seeing his only Son die so we might live. What point has really hit me this season is how unbelievably wonderful it is to know we as Christians have something to look forward to after we die......Heaven!!! I honestly can't even fathom how you go through the sickness and death of a loved one without this! Knowing the emotions and feelings I go through on a daily basis and I know they'll be in Heaven, I can't wrap my head around how someone without this hope manages.
So, this Easter if you're reading my blog and don't have this hope of a future in Heaven with our risen Lord, I strongly encourage you to consider knowing where your future will be and ask Christ to be Lord of your life.
John 3:16 - "For God so loved the world that He gave his one and only Son. That whosoever believes in Him should not perish but have everlasting life."

CHECK-UP

2009-04-09T19:07:00.005-04:00

Today Mom had a check-up with Dr. Uronis. She had blood work done first and then her appointment. Yesterday she had an ultrasound. Very good check-up!!! :):) Her blood work is fine, her bilirubin is good, no new tumor growth and all her swelling is gone. Great news!!
The next steps will be an appointment with the surgeon and deciding when to start the next round of chemo. She's feeling really good and we are pleased with her report!!

Shantel's PIC line is still working fine so they haven't had to put in a new IV port. The Dr.'s have decided she will remain in the hospital until her transplant. This makes us very sad because we love having her home and she does so well at home. With her being on Albuterol every two hours and continuous at night, sugars going up and down and not being able to be on steroids in preparation for transplant, it's safer for her to be at Duke.

Thank you all for your prayers.

LOTS GOING ON TODAY

2009-04-06T13:20:00.003-04:00

We have a lot happening today. Shantel's IV port has stopped working so they will be putting in a pic line....that's a line treaded into a vein, usually in the arm, so IV meds can be run. A port is something Shantel will need to have but if the pic line works for now a new port can be put in at transplant.
Mom may be headed to Duke depending on what the Dr. says. She's been having a sharp pain in her lower side off and on for a couple weeks. It doesn't last long, just more annoying. Last night she had major pain and then started having blood in her drain line. She feels good but gets very nervous now when anything happens.
If you get a minute please pray for Mom and Shantel and for wisdom for the Dr.'s who are taking such great care of both of them!

STUBBORN PORT

2009-04-03T18:02:00.004-04:00

Today Shantel's IV port decided to stop working. The nurses and IV team have been working on it all day to try and get it to work but so far no go. This isn't a good thing because is will most likely mean they will need to put in a new port......which means surgery. Always risky for a CFer.
Please keep her in your prayers.

PRETTY FEET

2009-03-23T17:02:00.002-04:00

Today Mom's sister, Linda, came over and spent the afternoon with Mom. They had lunch and then went out for a while. But the best part is Mom now has pretty feet! :) Linda gave her a full pedicure which Mom really enjoyed. Thanks Linda!

STILL IN STEP DOWN

2009-03-20T19:28:00.002-04:00

Shantel is still in step down and on continuous albuterol. They have to get her steroids down in order for them to safely be able to do the transplant. What this means is that the steroids help keep her airways open and without them she moves less air through her lungs...........translation - hard to breath. Rx: continuous albuterol. This means she is confined to her room and she gets very bored. Luckily they have great child life people that keep her entertained with crafts and projects. She's into Webkins so that keeps her busy. She also has homework and loves movies and we try to come up with new stuff to keep her occupied.
We continue to pray that the transplant will be soon.

FUN DAY

2009-03-20T19:14:00.003-04:00

Mom and I spent the day together and had a great day. We had breakfast together, then I took her out for lunch followed by a little shopping and coffee break. Mom is feeling much better. She just gets extremely tired and fatigued. Her infection at the drain site is healing and her color looks good.
Now she just has to decide what we can do tomorrow!! :)

GOOD AND NOT SO GOOD

2009-03-16T18:52:00.005-04:00

GOOD.......Mom is feeling much better today. She had an appointment with Dr. Uronis and the CT scan revealed nothing new. The Dr. added another antibiotic and Mom doesn't have to go back to Duke till next week. Her apatite is returning and her color is better.
NOT SO GOOD.......Shantel was admitted to step down today. She is on continuous heli-ox (combo of helium and oxygen) and albuterol. Her lungs are very inflamed thanks in large part to this crazy weather. She's only been home for 8 days and was very upset she had to go back in the hospital........well she was mostly upset to leave her dog Molly!

BETTER DAY

2009-03-14T18:03:00.003-04:00

Mom is feeling somewhat better today. This morning her temperature was 102 and she hadn't slept much during the night. By mid afternoon the Cipro, Tylenol and pain killers started kicking in and she was up walking around. She isn't experiencing sever pain now just a lot of soreness around the drain sight and she's slept on and off all day. We're hoping tonight will be a night of restful sleep.

WHAT A DAY

2009-03-13T22:25:00.003-04:00

This has been a very looooong day. It started at 6am and we just returned home from Duke...10:25pm. Last night Mom started having pain in her side where her drain tube is. By this morning she was in intense pain and running a fever. The Dr. was called and they went in to find out what was going on. By noon they were on their way home with a diagnosis of at the drain sight and a CT scan scheduled for 7pm. Shantel had a transplant clinic visit at 9:30am which means we are up at 6am for treatments. We didn't get home until 4:45 and then we left for the CT scan and just returned home. Like I said.......loooooong day!
Mom was put on cipro, a strong antibiotic, and is feeling slightly better this evening. She is exhausted and has a Dr. appointment Monday for the CT results.
Shantel is doing very well. Her pulmonary function tests were up and they didn't hear any crackling in her lungs. They told us they have had a couple lungs available but they refused them because they weren't to their standards. I'm impressed with how picky they are.
Keep praying for them both!

SO SO

2009-03-10T19:50:00.002-04:00

Yesterday Mom had her second follow up visit since she ended chemo and radiation. The results aren't as good as we had hoped and prayed. Her blood work was all fine, a little anemic but otherwise good. The blood test that shows her cancer markers was on the high side again. Which all means that the chemo and radiation did what it was designed to do but she'll need to start another round of chemo here soon. Dr. Uronis has scheduled another blood test and visit with her for March 26th. At that time the next course of treatment will be decided.
Please pray for both Dad and Mom. Mom is a little discouraged tonight and Dad is trying to put on a "happy face". I think they will be going to Nathan and Heather's this weekend. Seeing the grandkids always lifts their spirits!

OUR LITTLE SUPERSTAR

2009-03-10T19:17:00.002-04:00

check out the superstar of the family! :)

YouTube - Harlem Globetrotters Visit Duke Children'

FOLLOW UP VISIT #2

2009-03-07T12:57:00.004-05:00

Monday morning Mom has her second follow up visit at Duke since ending chemo and radiation. She feels great and we have been praying that this visit will give the same positive results as her first follow up. They will do blood work to check her cancer markers and then a visit with her oncologist, Dr. Uronis for next steps. I'll update you after the visit.
Please keep us in your thoughts and prayers Monday.

BREAKING THE SCALES!

2009-03-06T18:19:00.004-05:00

Can you believe this little girl now weighs in at a whopping 100 lbs??!! (thank you steroids!!)
This is all great news! The more weight she puts on now the better she'll be post transplant when she'll need the weight for the recovery process and rehab.

FUN IN FLORIDA

2009-03-02T13:47:00.004-05:00

Here are some pictures of Dad and Mom having a good time in Florida this winter

Nathan, Heather, Rachael and Madeline at Disney
with Dad and Mom

Dad and Mom at the Strawberry festival

Mom's a Jimmie Johnson and Jeff Gordan fan.....

she looks like she got caught trading teams!!!

TO THE TOP

2009-02-26T16:21:00.002-05:00

This afternoon the University Of North Carolina Children's Hospital pediatric transplant coordinator Becky called to tell us that with Shantel's numbers she has been moved to the #1 spot on the transplant list. Please continue to keep us in your prayers as this is all very exciting but also stressful.
For those of you that know me know I'm not big on "unknowns". I like consistency and knowing what's going to happen. With all that has happened with Shantel and my Mom I'm pretty sure I better learn what God is trying to teach me!!

WHAT LOVE LOOKS LIKE

2009-02-24T08:48:00.002-05:00

valentines day at cheesecake factory

BIRTHDAY PRESENT

2009-02-20T14:01:00.003-05:00

One of Mom's Birthday presents was a two night stay at Myrtle Beach on their way to Florida. Their hotel was right on the beach and the view was awesome!! Mom and Dad had a great time walking on the pier, eating seafood, strolling on the beach and enjoying the view. It's always a good time when you can go to a tourist destination without the tourist!!!

enjoying the fresh seafood

AWESOME view from their hotel balcony

LISTED

2009-02-16T15:35:00.003-05:00

Today we got the call from UNC that Shantel has been listed to receive a double lung transplant. Now we begin the waiting, the anticipation of "the call." After two years of talking about the fact that someday she would need a transplant, reality is here. All very exciting and very scary! It's a huge surgery, a long rehab and lots of variables. Keep us in your prayers as we start yet another "first" in our lives.

SWEET VALENTINE GIRL

2009-02-15T16:15:00.004-05:00

We have become very creative when it comes to celebrating special occasions at Duke. So for Valentine's Day we decided to do a little lunch for Shantel and her friends (also Duke patients) Chelsea and Chris. Happily Chris was able to go home. Neither of the girls had any idea what we were doing. We just told them to not eat lunch and have whatever treatments, etc. done by 1:00. Now Shantel and Chelsea are not allowed to be very close to each other so it was a bit tricky to come up with how we could do lunch without them in the same room. Just so happens Shantel's room is across from the nurses station so we set Chelsea (in the blue shirt) up there and moved Shantel's table to her doorway and that way they could talk to each other but not be that close together. The tables were decorated with a red table cloth, a red rose, heart plates and napkins and gifts. The menu was wings from East Coast Wings. The girls were so excited and had a great time! I want to say thank you to the staff on 5300 for always going along with our wild and often times crazy ideas we come up with to keep life in the hospital as normal and fun as we can.

Our sweet little Valentine Shantel

Shantel's friend Chelsea

ONE HOT MAMA

2009-02-15T13:11:00.004-05:00

Mom had a wonderful and busy birthday weekend. Nathan's little girl Rachael's birthday is the day after Mom's so there was plenty of "partying" going on! I fixed a shrimp dinner the day of her birthday and then there was a party at Nathan and Heather's and then a lunch at Olive Garden with Mom's sister and niece's. Great fun all weekend!
Doesn't she look beautiful!!!

Almost a Week

2009-02-05T17:18:00.003-05:00

We almost made it a full week out of the hospital! Shantel is really having a hard time. When she walks, moves or coughs she struggles to breathe. She was readmitted today. Please pray the insurance will hurry up and sign the form needed for her to get on the transplant list. That's all we are waiting for now. On a positive note her two little hospital friends, Chris and Chelsea are also in the hospital so she'll have someone to talk with. She can got to the playroom and do things like karaoke with Chris. With Chelsea she has to sit in a chair outside Chelsea's door to talk to her. Even with the restrictions and being gowned, gloved and masked they all have fun!

Happy Birthday.......

2009-02-05T17:14:00.001-05:00

TO THE BEST MOM EVER!!!!!

WE LOVE YOU VERY MUCH!!!!

Answer to Prayer #1

2009-02-02T18:44:00.003-05:00

Today we spent an entire day at Duke clinics for Mom's first follow up visit since completing radiation and round one chemo. Of course we were all a little nervous. The day started with an 8:15 blood draw and then it was off to a CT scan followed by lunch then a visit with the oncologist and radiologist.
Dr. Hope Uronis is Mom's Oncologist. We saw her first. She started to give some basic information but Dad stopped her and asked for the bottom line results. She laughed and said most of her patients say the same thing when she tries to do dialog first. So bottom line......Mom's cancer hasn't spread, moved or grown. Her cancer makers went from 60 to 11 which is fantastic. They couldn't see on the CT scan the spot that was outside the gall bladder originally which is great news!
Dr. Czito is Mom's radiologist. We saw him next. He mostly said the same as Dr. Uronis but he added something rather interesting. He said it's hard to tell at this point just how viable the tumor is.......what that means is it could be dying, it could just be there.......they just don't know because it's still early.
They both were exceptionally pleased with the results and how well Mom responded and is doing. Tomorrow Mom has an appointment with the surgeon to see if there is any possibility of getting that gall bladder out and the drain tube that goes with it. Both Dr's. have said that is extremely unlikely but they are going have the consult to be positive. That's what's so awesome about the Duke Dr's. They cover every avenue thoroughly to make sure they don't miss anything.
Next steps will be made on Friday when Mom sees Dr. Uronis again to discuss the surgeons consult. More than likely it will be a blood test monthly to keep track of the cancer makers and more chemo. Of course that could all change if the surgeon says he can operate!
Thank you all for keeping Mom and our family in prayer. Please continue to pray for us and the Dr's. as they map out next steps. Right now Mom is feeling great and doing fantastic!! We know God is in the healing business. We also know God has a much bigger plan and our little ideas don't hold a candle to it!
I'll keep you posted :)

On the road again

2009-01-30T17:26:00.003-05:00

Seems like just yesterday Dad was packing the car for their trip to Florida. Now it's packed again for the trip back to North Carolina. Time flies when you're having fun!!! And they have had a GREAT time in Florida! It was a much needed break from the stress of the past few months and the daily trips to Duke for treatment. But like all fun it has to come to an end and it's back to reality. Monday it's back to Duke for Mom's first follow up visit. The day starts with an 8:15 appointment. It will be a long day with scans, ultrasounds, blood work and meetings with the Dr's. We have been praying that the outcome of her first round of chemo and radiation will bring very positive results. She has been doing awesome and feels great. Nathan and I will be going Monday with her and Dad. As you can guess we are all very nervous so if you can remember to pray for us Monday morning that God will calm those nerves and give us a peace as we get the results and plan the next steps.
Now on a selfish note......I'm glad their coming home!! I've missed them!!!

S & P....

2009-01-26T16:31:00.006-05:00

........AND IT'S NOT WALL STREET!!!!

Shantel and Parker.

Parker is my nephew who lives in Ft. Worth, Texas. When my family was all here for Christmas Shantel and Parker formed a little friendship.....which to me was very cool! One of the things I always have worried about it the fact that Shantel has never had any friends that aren't adults. Her entire life has been in and out of the hospital. She rarely has had the opportunity to attend school long enough to form friendships and when she is in the hospital she is on isolation so she's not allowed with other kids.

The night Shantel came home from Duke for Christmas Parker had stayed at the house to meet Shantel and stay with her and Grandma. Kristy and I had gone shopping and Dad and the rest of the boys went to a ball game. When we came home they were upstairs playing a game and talking. After they left for the night Shantel couldn't stop talking about Parker. She kept saying how nice he was and when she was doing her treatments he left the room but kept coming back to check on her and he even brought her a drink. Of course Shantel is a Nintendo nut so that was right up Parker's ally! So when Parker got his Nintendo for Christmas they really had something in common. So the other day Shantel is playing her Mario game and says with a huge sigh, "I need to call Parker." I said "you need to call Parker, why?" ......... "well, he's the only one who can get me unstuck from level six" Who knew!!!!!!

Thanks Parker for being so sweet and so thoughtful!!! Your a special kid!! I'm so proud of you for being so kind and wanting to hang out with Shantel!!

Tea...for two.....plus 90....

2009-01-26T15:26:00.004-05:00

..........was the surprise Mom received last week!!! She had been telling me she was going to a Bible study and woman's tea with Julie Witchie and she was a little nervous because she didn't know a lot of the ladies. See, you have to know my Mom. She hates being the center of anything and I think she was more nervous that she hadn't seen a lot of these people since her cancer diagnosis and she didn't want to have people fussing over her. We all encouraged her to go and have a good time......which she always does once she gets out. Plus we knew it would be good for her to be around other people.
Well, to Moms surprise the tea was in her honor! She was very shocked and surprised.....as were all us kids since Dad kept it quiet!!! There were 90 some women there and they had a great time. They presented her a basket full of cards and notes and a couple gifts.
Thank you Ladies at Word Of Life RV Park for making a special day for my Mom!!! You will never fully realize how much it meant to her!!! This has not been an easy time for her but she has totally enjoyed the fellowship these past three weeks being in Florida!
Please continue to pray for her. The future is a little scary for all of us right now but we know God has a great plan!

BACK AT DUKE

2009-01-24T18:40:00.002-05:00

Shantel has been admitted again at Duke. We were so happy to have her home for the past seven days!! Her CF is just so advanced at this point that small things like temperature change can make it difficult for her to breath. We pretty much have this going to the hospital routine down pat! Shantel just amazes me. She faces every set back head on and never complains. She's more worried about leaving her dog Molly than she is about herself! I remember when we told her Mom had cancer. She was going through a third round of kidney stones and was in step down. The kid was in unreal amounts of pain and on painkillers but she was more concerned about how Mom was doing. She's just that way......super kind, considerate, always thinking of others and sweet!
We had our first transplant clinic visit yesterday. More to come on that!

LET IT SNOW.....

2009-01-21T15:57:00.007-05:00

Snow isn't a common event here so it was pretty exciting to see 4 inches of the white stuff. Shantel was BEGGING to go outside but since it would have put her into broncho spasms that was a no! So the next best thing was to take pictures through the window......not exactly the same but still fun. Molly wasn't sure what to do at first. After she figured out she could eat the snow it was a whole different ballgame! All I can say is thank goodness I live in North Carolina and snow is rare!!!

A Very Merry Shantel Christmas

2009-01-17T15:03:00.006-05:00

We had a super fantastic Christmas! Shantel was discharged from Duke on the Monday before Christmas.....something we were very thankful for but wasn't for sure would happen. Although Duke does wonderful things for the kids that have to be there over the holidays it's a whole lot nicer to be home!!! Shantel was so excited to see all the decorations and the presents under the tree. She's so funny. She remembers small things like the Bath and Body peppermint hand soap we used last year and drinking egg nog. Shantel and Deb were able to come over to Nathan's for a few hours on Christmas day. She was very excited to see all my nieces and nephews. Seems they had a little Nintendo DS game playing going on!

Thanks to all our family and friends for making Shantel's Christmas so special! We are so blessed to have this precious little girl in our lives!!!

Shantel with her dog Molly

Christmas day at Nathan's

Her favorite group....Little Big Town

Now I can have my camera back!

Shantel, Angie and Friends

2009-01-16T19:06:00.005-05:00

Shantel had a very special Christmas surprise this year. Angie, a good friend and a step down nurse came to Deb and asked if her church group could "adopt" Shantel this year. This group of friends takes 3 or so kids that are hospitalized over the Christmas holidays and brings them gifts.....not just physical presents but the gift of love. We had so much fun meeting new friends and hanging out.
Thanks Angie and friends for taking the time to show God's love and make a little girl feel so special! We love you all!!

Angie's church group with Shantel

Angie's husband with Shantel

Angie and Shantel

very cool gifts!

Home

2009-01-16T14:11:00.003-05:00

We are so excited......Shantel gets to come home today! She'll be coming home on IV's and will have a nurse while Deb and I are at work. It's a pretty intense medication and treatment schedule so it forces us to be very organized! Next Friday we have an appointment with the transplant team and it looks like she may be listed at that time. We'll keep you posted.

Florida

2009-01-15T21:14:00.002-05:00

Dad and Mom are spending the next couple weeks at Word Of Life Florida. Since Mom has a small break from her treatments it was the perfect time. When they arrived they found fresh fruit, juice, breakfast danish and some other food already in the refrigerator. Thank you to the kind people at the Word Of Life park for being so thoughtful! They are having a wonderful time seeing friends and going to the beach to watch the sunset. Monday they are heading to Disney with Nathan, Heather and the girls.
It's been a long couple months and I'm so thankful Mom is feeling so well that they could do this! As much as I miss them a change of scenery is just what was needed.

We love Sarah

2009-01-14T16:03:00.007-05:00

The Saturday before the elections Dad, Mom, Nathan, Heather, Maddy, Rachael, Scott and I had the awesome opportunity to attend a Sarah Palin rally in Raleigh. As you can see Mom and Dad were two of about 10 people that had the privilege after the event of having their picture taken with the Palins.

It was pretty amazing.....here is a lady that might have been the VP of our country and she took the time to talk with Mom and Dad, didn't act rushed and told Mom they would be praying for her. David sent me a photo of Sarah and I had 5 8x10 copies made and she signed all 5! Nathan had his signed picture in their living room and one morning Rachael (who's 3) got up, saw the picture and said "oh, Sarah Payton....she's so pretty!"

Too bad Sarah Payton's not VP!!!!

Christmas......North Carolina style

2009-01-14T15:46:00.009-05:00

The Bagg bunch:
left: Scott, Kristy, Parker, Alex, Landry and Luke
In the back: Tim, me, Dad and Mom
Nathan holding Madaline, Heather (expecting#3 in April)
and Rachael(in blue dress)
right: David, Kathy and Elijah, Lauren (in pink), Kelsey
and Ella

The kids in their jammies

Rachael(nathan's) with her tinkerbell pez

2008 was our first family Christmas together in a very long time. Nathan and Heather who live in Winston Salem, NC were gracious enough and offered to host the big event......no small undertaking with 10 adults and 10 kids all 12 and under! They worked very hard getting all decorated inside and out.
Scott, Kristy and their 4 boys were the first to arrive on Sunday from Texas. Since Mom's last chemo and radiation treatment was on Christmas Eve they came to Cary first to hang out with Dad. Mom and me. My cousin Melissa and her husband Glen were leaving for Florida for the holiday so they offered their house to Scott and Kristy for those couple days......thanks Glen and Melissa!!! Scott, Dad and 3 of the boys attended a NC State b-ball game, Kristy and I went shopping, Parker stayed home and hung out with Grandma and Shantel, Kristy, Deb and I helped Mom do some baking and they all went with Mom to Duke for one of her treatments and of course had to tour where the number one college basketball is played.......DUKE!!!!
David, Kathy, their 3 girls and little boy along with my brother Tim dodged a snow storm as they made their way from upstate New York. They arrived Tuesday night.
Christmas Eve we have a family tradition of having a little party. We always have shrimp dip, maggot salad (not as bad as it sounds!), finger sandwiches, meatballs in alfredo sauce, hot cheese dip and chips, fruit with this amazing sauce you put over it that Mom makes, cookies, layered salad and hot cider. This year the kids watched Polar Express and the adults got a couple hours of uninterrupted conversation in........which pretty much was the last!!! After the movie the kids each opened one present which was new PJ's and set out milk and cookies for Santa. Dad read the Christmas story from the Bible and off to bed the kids went. We still had stockings to fill and clean up to do before any adults went to bed!
Christmas morning started with breakfast and then we opened gifts. The kids were so calm I couldn't believe it! We started out by taking turns opening a gift and trying to keep up with the paper and boxes. By the end....well you know....stuff was all over the place! It really was fun to watch the kids. They were having such a good time and they were so good! Christmas dinner was awesome, ham, mashed potatoes, I think 4 veggies, a couple salads, bread and homemade pies. We put Scott and David at the kids table (can you guess why) which was set up in the living room and the rest of us were able to squeeze around the dining room table.
Nathan set up a hayride through the "Festival of Lights". This is a state park that they decorate with Christmas scenes with thousands of lights and and you drive through it or in our case we rode on a hay wagon. It was pretty chilly the night we did this but it was so beautiful.
On Sunday my Mom's sister Linda and her husband and our cousin Renee and her family drove over from Raleigh for the afternoon. There's always a lot of laughing going on when we all get in one room!
Some very special friends of Dad and Mom's gave them a gift of a hotel room. This was so perfect for them! With Mom being at the end of her treatments she was very tired and needed to have the quiet so she could rest and the kids got to go swimming at the pool!!
The rest of our time together was filled with trips to the mall, a visit to the museum, putting a puzzle together, talking, watching football, eating, more talking and just enjoying being together. That's the one thing I miss is not being able to see everyone very often because we live so far away from each other. It was awesome being together even in close quarters.
There is nothing like family!!!!

more Christmas

2009-01-14T15:27:00.006-05:00

kids watching Nathan's Polar Express train

Alex(scott's)

Kelsey(david's) holding Madaline(nathan's)

Scott and his friend????

Alex

2009-01-08T21:36:00.005-05:00

This is my nephew Alex. He just turned 12 and is really an impressive young man! I had the privilege of spending some quality time with him over Christmas. My brother Tim and I got up early and would take breakfast to Mom and Dad at their hotel. One morning Alex asked if he could go with us. I told him we would be staying a while and he might be bored but he wanted to go with us anyway. We stopped and got breakfast and headed to the hotel to eat. Well, we ended up spending the whole day together. He swam in the hotel pool, tried out all the equipment in the workout room, we went for a hamburger for lunch and sat in the lobby by the fireplace to eat, had some ice cream, and I think there was an errand run to Walmart someplace in there. He had the opportunity to go to the museum with the other kids but chose to stay with me and I'm glad he did. We had a great time!! Alex is kind, polite and thoughtful. Thanks Alex for hanging out with me.........now if I could just get you to wear a Duke shirt!!!!

Family pics

2009-01-05T14:44:00.004-05:00

The Bagg kids at Dad and Mom's retirement dinner
from Word Of Life.......May 2008
David, Melodie, Tim, Scott and Nathan
Good looking bunch, huh!!!

Dad and Mom.....May 2008

can you believe.....

2009-01-05T14:34:00.003-05:00

.......this is the same child??!!

left: Christmas 2008

above: first day of school Sept. 2006

Shantel

2009-01-04T17:11:00.005-05:00

Let me give some background about Shantel. Shantel came to live with us in Sept.2006 as a foster child. She has been a patient at Duke since she was a baby when she was diagnosed with Cystic Fibrosis. Cystic Fibrosis is a terminal lung disease. For more information on CF please go to the Cystic Fibrosis Foundation website....CFF.org. In Aug.2006 she was admitted at Duke in very poor condition and by Sept. the Dept. of Social Services (DSS) removed her from her home. Deb had Shantel as a physical therapy patient for 8 years and had developed a bond with her and didn't want her to go into foster care to a home that didn't know anything about CF. Plus Deb knew she would be very scared. I'll never forget coming home and seeing this little 50 pound sad little girl sitting in the lazyboy. She was so small! I knew very little about CF except what Deb did at Duke and I knew the kids died so I was excited and hesitant at the same time. I couldn't believe the amount of meds this little girl took! One entire kitchen cabinet was transformed into a med cabinet. Then there was the breathing treatment machines, nebulizer pots, insulin, O2, g-tube feeds, 4 hours a day of breathing treatments, etc.
Needless to say my life as I knew it changed! It really took me some time to adjust to having a child but I was loving it! You couldn't have asked for a sweeter, well behaved child. Shantel had some adjustment issues because she couldn't understand why she couldn't go home. She was always polite but a little sad at the same time. We enrolled her in school and worked really hard to make things as "normal" as possible. She did awesome and made the honer roll. She came home from school one day with a certificate that she made the honer roll. Of course we made a huge deal out of it and she just stood there looking at us funny. I said that's so awesome aren't you excited? She answered me with "what does that mean?" I almost cried. She'd never been told what a good job she was doing in school. Well once she knew what it was all about she worked her heart out and has made the honer roll ever since! I'm the Awana Cubbies Director at church so she went to Awana TnT which she loved. She worked in her Awana book non-stop. She loves going to church. We decided to take her to Build a Bear so she could make something that was just hers and our thought was that it would be her "buddy" and have something to take care of. She named her first bear Princess......and it's a purple bear! She has since added Punkin, Precious and Peanut. Her first b-day party was a Cheetah Girls theme which was very fun. A friend of ours made her cake and a cake for Princess. It was awesome. We had a great time.
Since her future is so uncertain we've tried to do all sorts of different things with her. She's been to the beach, Christmas in Texas, a summer trip to NY, the North Carolina State Fair, took swimming lessons, been to museums, Disney on Ice, the circus, Sugarland, Little Big Town and Martina McBride concerts. She loves to shop, have her picture taken, play Nintendo ds, wii, play on her computer and watch movies. (her favorite is 7th Heaven series which she watches over and over......can I just say I never want to see another 7th Heaven episode!!!!)
Shantel over the past 2 and a half years has turned into a happy, well adjusted young lady who has a tough road ahead of her. In 2008 she spend over 200 days at Duke as her disease has progressively worsened. We have now moved into another whole part of our lives......double lung transplant. She has been accepted at University of North Carolina Hospital to be followed by their lung transplant team until she's listed. Duke doesn't do pediatric transplants so we are fortunate to have UNC also in our back yard. Please keep us in your prayers as we know there are no guarantees. We are praying the transplant will be a success and she'll be given the gift of a few years of a "normal" life.

The reason for this blog.....

2009-01-04T16:31:00.002-05:00

I never thought I'd find myself in the "blogging world" but it seems to be the best route for getting information out to those that are interested. Thank you to my sister-in-law Kristy for helping me get this blog set up.
As you can gather from the blog name the posts will mainly contain information about two very special people that I love dearly......my Mom, who was diagnosed with gall bladder cancer on Oct.1, 2008, and Shantel, a little girl with Cystic Fibrosis that I was awarded legal custody of in Nov.2007.
Hopefully this will be a tool to keep you updated but also as a reminder of how precious and short life is! I trust you will find it not only informative but maybe even funny at times. Our family covets your thoughts and prayers as we travel down this difficult road.