CHECK-UP

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

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

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.

STILL IN STEP DOWN

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.

GOOD AND NOT SO GOOD

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!

WHAT A DAY

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!

OUR LITTLE SUPERSTAR

check out the superstar of the family! :)

YouTube - Harlem Globetrotters Visit Duke Children'

BREAKING THE SCALES!

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.

Almost a Week

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!

S & P....

........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!!

BACK AT DUKE

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.....

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

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

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

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.

can you believe.....

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

left: Christmas 2008

above: first day of school Sept. 2006

Shantel

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.