CHRISTMAS IN HEAVEN

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

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

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

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!!!

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

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 !!!

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

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

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!!!

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!!!

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

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

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

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

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

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 !!!!

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

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!!!!

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

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