New Lungs and Recovery

As most of you already know Leah had a double lung transplant on December 22, 2010. She has done marvelous with recovery and was released from Duke on December 31, 2010 and resting comfortably at the apartment in Durham, NC.

She still has stitches and staples in from the surgery but is continuing her rehab on a daily basis and seems to be adjusting well to her new lungs and to all of the new meds. Some days are harder than others but per her doctors she is right on schedule of where she should be. Leah is scheduled to see the Doctors tomorrow so if this changes I will try to keep everyone updated for the family and I am sure Terri will also update her facebook page.

The days are very busy for the family and I would assume they will continue to be for a while. Please continue to pray for Leah and her family through this next phase of their journey. I know the they appreciate all of the donations, support, prayers, cards and gifts that have been sent and everyone who has will continue to be a playing part in her recovery. Leah and her family feel so blessed that so many people love and care about them and it helps get them through the harder days that they have faced and may continue to face ahead.

Leah is such a fighter and I think everyone knows that now! I am still in shock and disbelief that it happened, how well she did in the hospital, that she got released less than 2 weeks post transplant and is still thriving. What a special gift she is and how lucky are we that we got to go through this experience with her. God is truly great! I believe in miracles now and I also believe in the miracle of prayer.

I was there with the family the night of the transplant and I am giving my own view of what I saw from a mother and the feeling of watching Terri when the doctor came out to say "your daughter came through with the flying colors and she is doing well", was a moment in my life that I will never forget. As Terri, cried, jumped for joy and at one point I thought she may even start doing kart wheels up and down the hallway of the hospital, I could only think to myself that maybe this family can once again regain some sort of normal life. Peace for Leah, Peace for Terri, her brothers, all of her extended family uncles, aunts, etc. and her boyfriend Nathan who has been absolutley wonderful to her through all of this.

Now that I have a son of my own I could not even begin to imagine what Terri has gone through herself as a mother. What must have been going through her head during that 7 and half hours of surgery and what relief she must have felt when the news came that all was well. I was proud to be in the same room with her at that moment because to me she became what I like to call a mommy hero. I could only hope that if I was faced with the same challenges that I could hold myself together in the same manner that she did.

I apologize in the delay of getting the blog updated but with the transplant and the holidays it was difficult to find the time to sit down. It has also been hard to comprehend what took place and that the fight was won and she made it, she did it!!

If you would like to send cards or gifts (please no fresh flowers per the doctors) the mailing address to the apartment is below:

4225 Larchmont Road
Apt. 307
Durham, NC 27707

If you would like to make a donation to Leah's 65 Roses Fund the mailing address is below:

Citizens & Farmers Bank - Varina Branch
Attention: Paula Tiller or Charlotte Thornton
c/o Leah's 65 Roses Fund (please make checks payable to this fund)
2651 New Market Road
Richmond, VA 23231

God Bless!!

Update from Dr's visit today

First I would like to thank all the sponsors, promoters, volunteers, players and other contributors for making the poker tournament for Leah a huge success. Together we raised a total of $8,948.50! This shattered our original goal and Leah and her family are so thankful to all of you!!

Leah is still currently active on the transplant list. She is keeping up with her rehab and going to regular doctor visits. Her pft's are down 15% this week, and her weight is also down to 96lbs, she is still having fevers on and off. The doctors at this time still feel it is best to keep her out of the hospital and resting at the hotel that they now call home. The doctors want to see her again in two weeks IF she has not received lungs by then. She did find out she will need to undergo surgery about a week after the new lungs have been transplanted because of the severe acid reflux she is having.

Please continue to keep Leah and her family in your prayers.

Thank you for the outpouring of love and support!

If you would like to send anything directly to Leah or her family the mailing address at this time is:

Staybridge Suites
Attn. Terri Kuykendall
3704 Mount Moriah Rd.
Durham, NC 27707

If you would like to make a donation to Leah's 65 Roses fund, please see below:

Citizens & Farmers Bank - Varina Branch
Attention: Paula Tiller or Charlotte Thornton
c/o Leah's 65 Roses Fund (please make checks payable to this fund)
2651 New Market Road
Richmond, VA 23231

Leah Update

Update from Terri Kuykendall -

**GREAT NEWS**My insurance company has officially APPROVED Leah's transplant and she could be listed as early as today!! We're sooooo excited! Thanks so much for all of your prayers. Please pray for Leah to be put on the transplant list today. ♥ ♥ ♥

PS
If you would like to send Leah a card or note of encouragement, she will be at the following address at least until Dec. 8th...
Staybridge Suites
Attn. Terri Kuykendall
3704 Mount Moriah Rd.
Durham, NC 27707

We will update the address if anything changes.

Thank you

Update from Leah's mom

Below is an update from Leah's mom Terri:

Leah Update: After spending 6 days in the hospital at Duke, Leah was released this evening. She's still weak and the IV antibiotics make her so nauseous, it's almost impossible to eat. Her doctors are hoping she can get a few more rehab sessions in before she is listed, they're still waiting for my insurance to approve the transplant. Once she's on the list, things should move quickly & Leah will have new lungs SOON!


**Below is a reminder and information in regards to the Poker Tournament for Leah. I ask everyone to please come out and support her and this journey she is facing.

Location:
Cullen's Cove
6233 Mechanicsville Turnpike
Mechanicsville, VA

Charity No Limit Texas Hold'em Poker Tournament
Sunday, November 21st, 2010
Registration starts at 11am
Tournament Play starts at 1pm

...THIS WILL BE A NON-SMOKING EVENT!!!!

This is a fundraiser event for local Richmond Beauty Leah Kuykendall who suffers from Cystic Fibrosis. Come play your favorite game while helping this beautiful, young 18 year old girl fulfill her own life long dreams while facing this terrifying, terminal disease. When children with Cystic Fibrosis are first taught how to say the name of their disease they are told to say "sixty-five roses". Leah has tattooed a rose and the words "sixty-five roses" over her left lung as this has special meaning for her. In keeping with that, Leah's Sixty-Five Roses Fund has been established to assist this family with the expenses of her double lung transplant surgery, medicines, travel, housing and numerous other expenses not covered by insurance. THANK YOU FROM LEAH, HER FAMILY AND FRIENDS AND MAY GOD BLESS YOU AND YOUR FAMILY.

Entry Fee: $25
Re-Buy Option: $15
Add-on Option: $15

PRIZE POOL WILL GO AS FOLLOWS
1. $1000.00 cash
2. $500.00 cash
3. $200.00 cash
4. $100.00 cash
5. $50.00 gift card
6. $50.00 gift card
7. $50.00 gift card
8. $50.00 gift card

Raffles, 50/50s Drawings, Gift Certificates and all kinds of prizes from local businesses will be given away throughout the tournament.

We would like to recognize the sponsers we have so far in making our prize pool and this tournament possible.

CLINGMAN & HANGER
S.P.E. ENTERPRISES
RUTHERFORD PLUMBING
ROYAL FLUSH POKER LEAGUE
CARPET AMERICA
STEVE ALLEN (STATE FARM SANDSTON)
CULLENS COVE
KJLC LANDSCAPING

This list will continue to grow. It is not to late to get your buisness involved

If you are not a poker player or cannot make the event, but would like to contribute donations can be mailed to:
Attention: Paula Tiller or Charlotte Thornton
c/o Leah's 65 Roses Fund (please make checks payable to this fund)
2651 New Market Road
Richmond, VA 23231

A Huge Thanks and The Poker Tournament

A poker tournament has been planned in order to raise funds for Leah's double lung transplant. It is being held at Cullens Cove located in Mechanicsville, Va. Leah has gotten a new fight in her, she is amazed at the outpouring of support, love and concern that everyone is showing. This is the kind of thing that will keep her motivated and her spirits lifted high to get her through the challenges she is going through and will continue to go through for some time.

She has started the program at Duke to prepare her body and mind for the transplant. They are currently staying in a hotel until they can secure an apartment. She has enjoyed reading the comments and thanks for taking the time to read her story. She spends most of her days at the Duke Center for Living Campus where they have her exercising her body and listening to lectures in preparation for the transplant.

Leah and her family would like to thank everyone for there support and donations that have already been made in honor of her. They would also like to send a special thanks to the following people and business's for all of the hard work and contributions they have made to making the poker tournament a sure success:

Cullens Cove
Royal Flush Poker League
Clingman & Hanger
SPE Enterprises
Rutherford Plumbing
Carpet America
Steve Allen
Brain Gill
Rob Hazelwood
Ashley Michalosky
Diana Gill

Donations can be sent to:
Citizens and Farmers Bank - Varina Branch
Attention: Paula Tiller or Charlotte Thornton
(checks can be made payable to)
Leah Kuykendall's 65 Roses Fund
2651 New Market Road
Richmond, VA 23231

There will be more updates to follow.

Have a blessed day.

Leah's Journey

A blessed event happened on January 14th, 1992, Leah Pullin Kuykendall was born. Her parents, Kevin and Terri, welcomed their daughter into this world with joy and excitement. She would be joining her two older brothers, Josh, who at that time was 10years old and Hunter who was 2 years old.
Six weeks later, this family’s happy world was shattered when their beautiful baby Leah was diagnosed with Cystic Fibrosis. Cystic Fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. When mucus clogs the lungs, it can make breathing very difficult. The thick mucus also causes bacteria (or germs) to get stuck in the airways, which causes inflammation (or swelling) and infections that lead to lung damage. There is no cure for Cystic Fibrosis and most patients only survive into their early twenties without a lung transplant.
The family was determined not to let this disease overtake the gift of life that this precious child was given. For the first 15 years of her life, it was pretty normal for a CF patient, she took her pancreatic supplement with every meal and snack she ate, her vitamins, 3 times daily aerosolized medicines that she would inhale through a nebulizer and after the nebulizer, airway clearance treatments. She was only hospitalized a few times during those years and there always seemed to be plenty of people to help with the daily treatments. Between her parents, her brothers, babysitters and neighbors, everyone was trained and always willing to give Leah what she needed to ensure she kept as healthy as possible.
Leah was like any normal kid with the exception of the treatments and meds before meals. She dabbled in almost every sport – recreational soccer, cheerleading and recreational basketball. She was on the swim team for Creekwood Neighborhood and Walton Lake and during her first years at Midlothian High School she played softball.
At the age of 15, Leah’s health started to take a small dip. Eventually, these small dips became more like huge scoops. She is 18 now and during the last three years she has been hospitalized on average five times a year with those hospitalizations lasting anywhere from one week to a month. She has also had to be on home IV meds and treatments increasing from three a day to four or more, making it impossible to go to school. At one point last year she was placed on a ventilator. Through it all, Leah persevered and met her personal goals of holding a job, driving her car, attending her Senior prom and graduating from high school (not a small accomplishment even for the healthiest of kids).
We are now at the present day where Leah is beginning the journey of receiving a double lung transplant. With this journey comes the reality that Leah will have to work hard to get her body and mind ready for this procedure and move away from her home for a minimum of six months from what we have been told. This also presents a whole new challenge for her family. Josh has moved back to his mother’s house to assist in making sure everything there is kept up. Hunter is going to be moving to Duke to assist his mother in being a caregiver (two must be listed) for Leah. Leah is blessed to have two older brothers who have never shown anything but support for their sister during her lifelong battle. They have risen to every challenge, supporting her and doing everything from running schoolwork, clothes and food to and from hospitals, helping with all treatments and just keeping her company on lonely days spent at MCV. They will now rise to this newest challenge and put their life on hold to ensure that they are there for their sister.
Another daunting challenge for this family will be the astronomical costs associated with having this lung transplant that are not covered by medical insurance. Many of the treatments and drugs that Leah will require to survive this transplant and ward off any rejection of the lungs are not covered. In addition to those medical costs, Leah and her caregivers will have to have a place to live in Durham, NC so that she can be available for all of the preparation and ultimately the transplant surgery and recovery. Her Mother will have to travel to and from Durham many times in order to be able to keep her job here in Richmond and most specifically keep the all important medical insurance.
When children with Cystic Fibrosis are first taught how to say the name of their disease they are told to say “sixty five roses”. Leah has tattooed a rose and the words “sixty five roses” over her left lung as this has special meaning for her.
In keeping with that, Leah’s Sixty-Five Roses Fund has been established to assist this family with the expenses of her surgery and recovery that are not covered. These expenses will include treatments and medicines that are not covered, living expenses, travel expenses and other incidentals necessary to make things easier for Leah as she goes through this process. A bank account has been established for this fund at Citizens and Farmers Bank - Varina Branch. Any and all contributions to this fund will be used for these purposes and for Leah’s benefit. Contributions can be mailed directly to -
Attention: Paula Tiller or Charlotte Thornton
c/o Leah's 65 roses fund
2651 New Market Road
Richmond, VA 23231
We ask that you take a deep breath (which Leah can’t do right now), reach into your hearts and pockets and give whatever you can to help make Leah’s dream of new lungs come true.
THANK YOU FROM LEAH, HER FAMILY AND FRIENDS
AND MAY GOD BLESS YOU AND YOUR FAMILY.