Are you giving
HOPE a hand?

October 26th Kennedy returned to MCG to have her monthly procedure. This trip was a bit different though. Dr. Donahoe had previously spoken with Kennedy's mom and wanted Ginger to perform the procedure under his supervision. Dr. Donahoe believes that this would be beneficial in case of an emergency then Ginger would be able to change the suprapubic tube herself.  The procedure went well and Ginger completed the task. Kennedy was a very good patient and knew her mom was scared. Kennedy did not make a peep. She kept her pain to herself so her mom could do the procedure. Afterwards she complained of being in a lot of pain but all went well. Kennedy rested the remainder of the day and returned to school the next morning.  Many prayers were offered and lots of encouragement. Thank you to everyone!

Kennedy was honored to sing at the 5th annual Concert in the Park. This year's concert was the release of Carmela Spikes-Williams' new CD Mount Up.
Check out Carmela's website http://carmelawilliams.com/

 



To  see the photographs from One Ride for Hope CLICK HERE

Kennedy goes GLOBAL! Kennedy boxes are in 12 salons in Japan! Thank you to a
good friend Yoshie Matsuda! (Kennedy's mom went to college with Yoshie).....

FIRST DAY OF SCHOOL! - Kennedy's first day of school was not only amazing because she is going to the middle school this year but also because this is the first year that she has started school on time! Have a great year Kennedy!


Get your copy of the Toombs County Magazine at the Vidalia Downtown Association Office on Church Street beside the Pal Theater and check out the article on Kennedy!
Page 32

Kennedy has appeared on The News at 6, Mid-Morning Live with Sonny & Jodi and The News at 7 on WTOC Channel 11 Savannah-  She has also appeared on Pineland Cable with an interview during the Pinetree Festival Parade.

7-20-09 K

Makayla, Lacey and McKenzie show
their support for Kennedy as she performed in the singing
contest -Meadows Musician- on May 18th at Sally D. Meadows

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4-11-08
Kennedy had to rush to MCG in Augusta because her supra-pubic tube was stopped up. Her doctor replaced the tube in his office. Poor Kennedy had a rough time while the doctor attempted to replace the size 14 tube with a size 18 which is bigger- the tube is inserted through a hole which has been cut in her stomach wall all the way down to the bladder-She cried out in pain and it was heartbreaking. She returned home that afternoon and followed up with Dr. Foust the next morning for blood-work and she received x-rays at Meadows Regional. Kennedy is going to be seeing an orthopedist because the surgery she had when she was 4 on where the broke her pelvis in 4 places has caused her to have one hip higher than the other and this has caused her some difficulties in walking straight. Her heals are taking a beating and she continues to be sore everyday.

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4-11-08 Kennedy lands in the ER of MCG!
Friday evening brought fear to Kennedy. While taking a shower Kennedy's supra pubic tube came out of her bladder. Apparently she had received a nic in the tube and the balloon on the inside (that holds it in) deflated and caused the tube to back out of its tract. After speaking with the physician on call- he suggested we meet him at the ER at 9am Saturday morning. The tract had already began to close and the doctor had to use a smaller size tube and was a bit forceful to get the new tube inserted. Kennedy tolerated the procedure well and returned home later that evening.

4-4-09
Kennedy was excited at all of the participation in the JUMBLE SALE @ Fairview Baptist Church in Lyons! She had a fantastic day-

4-2-09
Kennedy returned to MCG today for her monthly procedure of changing her tube. She had a harder time this go around. She was in a bit more pain than usual.

3-23-09
Kennedy participated in the 8th annual Shellman Bluff St. Patty's Day Parade. Pictures can be viewed at http://kennedyjoiner.shutterfly.com/

3-5-09

Kennedy returned to MCG today for her monthly procedure. She tolerated changing the tube well. The upcoming surgery of the bladder was discussed as well as her self esteem. As if she did not have enough to deal with just being a regular 5th grader Kennedy faces issues concerning her outward appearance and how she compares to other girls.

2-27-09

Krispy Kreme Doughnuts • The Greater Tattnall Junior Board of Directors completed its fundraiser for Kennedy by selling and delivering delicious Krispy Kreme doughnuts on Friday, February 27th. MANY THANKS TO ALL INVOLVED IN THIS EVENT!!! 

For more information on the Greater Tattnall Board of Directors please contact: avery582@hotmail.com or cindydelg@gmail.com or call the Chamber at 557-6323 or 288-1132.

1-8-09 

Kennedy returned to MCG today for her monthly procedure. Although not scheduled for an ultrasound, she was required to undergo one prior to her appointment with her physician. Dr. Donohoe performed the replacement of the suprapubic tube. Kennedy assisted! After deflation of the internal balloon on the tube, Kennedy removed the tube herself. Dr. Donohoe replaced the tube with a new one and then broke the news to us. The ultrasound revealed that Kennedy's kidneys are not growing. 

 Her little kidneys work so hard to keep her system flushed that they don't have time to grow or have a break to "put on weight". 

He has decided to give it 6 months and then he will take another ultrasound. If a surgery date has not been acquired from Wake Forest for the bladder regeneration surgery then he is going to plan a surgery to increase the size of Kennedy's current bladder. To do this, he will be required to use another piece of Kennedy's intestinal tissue.

We are praying for FDA approval between now and June for the new bladder.

We are also praying for success of the upcoming fundraisers.

Ginger M. Joiner

12-04-08

Kennedy returned to the doctor in Augusta at MCG today. The supra-pubic tube was replaced today. Kennedy tolerated the procedure well.

Kennedy will be attending the Harvest of Love fundraiser presented by Vidalia Community Hospice. She will be a featured guest and will participate in raising money for the "Little" Jose Gutierrez Memorial Pediatric Fund. This benefit will be held Saturday, November 15, 2008 at 7pm at the Vidalia Community Center. There will be a silent auction, dinner and entertainment. The attire is a semi-formal. For information or tickets please call 537-0063.

11-13-08

Things have leveled out for the time being. Kennedy has had 3 trips to MCG in Augusta to have procedures since August. This last trip she did extremely well with her procedure and was able to return to school the next day. (First time that has happened. Usually she in the bed the next day, or two.) We are in high hopes that things will start moving for her very soon. 2009 is just around the corner..... we are getting excited!

8-29-08

Yesterday nearly destroyed who I am as a person. My heart shattered into a thousand pieces. You always hate to see your children suffer but to go through what she went through yesterday was almost unbearable.

We rushed to Augusta yesterday because the suprapubic tube ceased to drain. (we later found it was stopped with a LARGE blood clot) Dr. Rhee and Dr. Donohoe each tried to flush the catheter as I had been instructed to do but was unable to get anywhere with it. 

Desperate measures had to be taken and it became imperative to remove the clogged tube and replace with a new one. The only problem lie in that the tract had not been forming but for 2 weeks (it needs 6 weeks before changes should be made)

Dr. Donohoe took a guide wire and ran it down the side of the suprapubic tube, took the other tube out and ran a new tube down over the top of the wire.

This sounds relatively simple. Sounds a bit painful too.... a WIRE?????!!!! However, there is no way to explain what happened in that room. Before the procedure to change the tube, Kennedy was on the phone with the Russell family and Pastor Glenn. Unbeknownst to me, when the doctor came back in and got started, I somehow did not hang up the phone and they heard the entire procedure. My phone eventually died....... I later received this email sent out by them.........

Thank you for the "instant" prayers that many of you prayed. Kennedy was in extreme pain as they were trying to change her tube and couldn't sedate her. Her little screams over the telephone were overwhelming to me and I knew as a mom, Ginger needed prayers and the doctor too. Within minutes of the mass of prayers pouring out for Kennedy, Ginger and the doctor, her procedure went through, her pain subsided and they have left Augusta and are on their way home. 

I actually got down the road from the hospital and pulled over into a parking lot, got out of the car, left it running, and sat down on the asphalt and cried…..(obviously I had to hold it together during the procedure)

There are no words to describe the bravery this child exhibits. I believe that we are all going to see a difference with Kennedy as we have remedied the problem, identified the sources and are assessing the situation. 

2 more appointments and then we go back to the once a month schedule, I will be glad to get back to some organization and security…. if that makes any sense.

Again, thank you all because I was scared but I got a text from a friend that said I had nothing to be afraid of because of this verse: 

1 Peter 5:7 says to cast your anxiety on Him for he cares for you (not a direct quote, just the part I remember)

We are home and she is in good spirits. 

Ginger M. Joiner

8-22-08

Kennedy has been recovering at home. She has limited day activity. She has gone to school two 1/2 days and one whole day. It has been a struggle to keep up with the work but the school has been super nice to her. We go back to the doctor to have the stitches removed on the day after labor day. Then we will start back with the once-a-month trips to Augusta provided all is going well. 

If you would like to send Kennedy a message her email is princesskennedy1@yahoo.com and can be found at the bottom of this page under e-mail.

Thank you all for the prayers and please continue to pass the website on to others. 

Ginger M. Joiner

8-16-08 / 10:30AM

Good Morning Prayer Chain. In case you haven't been informed, Kennedy had another surgery at MCG yesterday. Kennedy has such a positive attitude this morning. We are listening to the Christian Music station on TV and she is playing her nintendo while I try to get some work done. She seems to be in minimal pain this morning and her color is looking good. They are trying not to give her any pain medicine because the nurse gave her toradol yesterday on top of the morphine. Toradol is taken from the body by the kidneys and her kidneys don't work too well so it may take a while for the body to rid her of that medication. As I was typing the Dr. came in (actually 2 of them). I gave her some lortab as they were about to perform a procedure on her. They took out one of the tubes from the bladder and she is really upset. She has 6 nylon stitches and a large tube coming straight from the bladder. We are being released in an hour or so. They are just about to take out her IV. Please pray for travel mercies as motion (bumps) always make for a tough trip. Please pray for my back as I have to lift her in and out of my car. 
We should be home around 2pm.

In Christ,
Ginger M. Joiner

7-24-08

We return to MCG to have the catheter removed. The procedure went well. The stitches were removed and we returned home. Around 9 O'clock that evening, Kennedy was in severe pain. I gave her some pain medication and she got a shower. After her shower, we noticed a small drip around the incision site, which quickly became a stream. I called the hospital. Almost immediately Kennedy's doctor called me from home. We talked several times between then and midnight, montoring this situation. At midnight, the decision was made to go back to MCG. By 2am, the urine was gushing from an opening along the incision line. 

Turns out the pressure from the bladder the first go around had caused a "fistual" to form. (Basically a hole that had not healed as the stitches held it all together, this hole did not close)

Kennedy was taken into surgery on Friday. A new catheter was placed in the bladder to keep the pressure off until the fistual could heal.

Currently, Kennedy is hanging out at home. She is really depressed right now. She hates being immobile and hates the way the tube feels. She is in a bit of pain and her bladder has spasms that cause pain. 

One sad part is that the tube will need to stay in for a month and she is worried about starting school on the 11th with a urine bag strapped to her little leg!

Please continue to pray and pass this website information along. 

God Bless!

7-17-08

As much as I want to say this is my sleeping angel (and she is) it is hard because I keep seeing this beautiful peaceful angel in agony during this last episode. I have never seen such a thing as I did this time. 

Kennedy had surgery today and had a bladder stone the size of an acorn removed. Everything went smoothly and we got to go home later that day. Around 10 o'clock that evening the tube in her bladder that was draining the urine became stopped up. The bladder could not drain, the pressure built up and the incision site breached and urine began to pour from her stitches. We rushed to the emergency room in Augusta. God was so merciful with travel that night because the road was clear and the moon was full. We made it there without going excessively fast (ssshhh 70) in an hour and a half.....I can see it right now in my mind Kennedy lying there beating herself in the face with her fists because she was in sooo much pain with no hope of instant relief. The Emergency Room at MCG was expecting us and took her right on back. I felt like a skilled ER nurse as we worked on Kennedy. Finally, relief. Her bladder drained the equivalent of a 20 oz. coke! We finally got to the room around 3am. After close evaluation though the night and the next day, Kennedy was allowed to go home.

7-3-08

Today we returned for a follow up visit with Dr. Donohoe. It has been four (4) weeks since Kennedy had the suprapubic catheter removed. We were hoping for an easy visit. After the ultrasound, we saw Dr. Ortiz (a normal visit) He got updated labs. (drew her blood and got a urine sample) Then we went on to Dr. Donohoe. He said the ultrasound showed an object in the bladder and he needed an xray. He called Dr. Ortiz and put the labs on STAT! We went down to radiology for three (3) views of the bladder. After returning to Dr. Donohoe's office he came in with "good news and not-so-good news". The good news is that Kennedy's creatinine is down to 1.6 from 1.7. That is a steady tenth of a point drop since April. We are shooting for 1.0. BUT, she has a bladder stone. Unfortunately for Kennedy because she caths through her belly button, she has to have this surgically removed. The doctor will make ANOTHER incision and place a scope into the bladder to locate the stone, then he will use a "grabber" tool to retrieve the stone. July 17th at 7:25a.m. in Augusta at MCG. Here we go again! 9 surgeries in 10 years. She is upset about this news. I tried to tell her that she was not ready to be healed. When the timing was right, God is going to touch her and heal her and then she is going to have quite a story to tell. Please be in prayer for her, again. 

As always, in Christ,
Ginger

6-2-08
On June 2nd Kennedy returned to MCG in Augusta. Dr. Donoahoe praised her and her family for the wonderful data that was collected during the study. He said that it was the best he had seen. Kennedy had to thank the collaboration of folks that helped out with the study. Every day Rebekah Russell would come over at 10am and collect the data, then Amber Wright would handle the 2pm collection. Everyone pitched in this time... friends, family, church family.....and much prayer! Dr. Donahoe removed the suprapubic tube! 

The scary part began! Kennedy entered into another study that required MUCH more attention and data collecting. She is currently scheduled to return to MCG on June 23rd for an ultrasound and July 3rd for the results of the study.

Kenny can't swim yet but is enjoying her summer floating in the pool:)

This is a tough study. Kennedy is required to drink 12 oz of water every 2 hours and go to the restroom on her own every 3 hours. To say the VERY least it has been difficult. Kennedy has gotten discouraged a few times. She has cried and been down about her life, but we keep on praising the Lord and are learning how to tackle big jobs - one step at a time!

4-21-08

Kennedy returned to MCG for a suprapubic reinstatement. For general knowledge, let me explain. Kennedy has a tube (suprapubic) This tube goes directly through the skin of the lower abdomen and directly into the bladder to drain it continuously. The insertion of a suprapubic tube is a "last resort" to help drain the bladder. Since Kennedy does not have a urethra tube. Which is a tube which connects the urinary bladder to the outside of the body. So she can't not go to the bathroom as other girls. 

She gave labs again and the results were much better. The creatinine was 1.8 but the proteins in the bladder were down. PLUS, her kidney function was at 30-40%.... which is up from the 25% in August 2007....

we do not go back until June 2, 2008 and have not heard anything from Dr. Atala yet. We have patience though. Until then we will continue our routine... gobs of meds in the morning, shots during the week, lots of water and cranberry juice..... softball on Tuesdays and Fridays, church on Sundays and Wednesdays and pray pray pray!

3-31-08

Kennedy returned to MCG for an suprapubic reinstatement. Her blood work was still up a bit. The test results from the month long study did not produce a positive result therefore the option of removing the bladder tube was lost. Kennedy's creatinine was 1.8 and her hemoglobin was 10.2....

Kennedy started softball. It is a bit more of a challenge this year as she has to wear protective gear around her waist to protect the tube coming from the bladder down her leg.... not too comfortable and the action of swinging the bat ALL the way around is not too "pleasant" in Kennedy's words.....

Good Luck with Softball SuperStar!!!!

2-25-08

On February 24th Kennedy had an ultrasound done in Augusta that looked fantastic. Her blood work was not the best that we hoped for. Her creatinine was 1.9 which was up and her hemoglobin was a 10.  We are keeping a diary for the next four (4) weeks on certain factors to her complicated equation. She will go back on March 31st for another ultrasound and blood work. The doctor has opted to hold off on any surgeries right at this point and she has been given  clearance to play softball this season.

Thank you for the continued prayers.

2-3-08

Kennedy was baptized today at the FAIRVIEW BAPTIST CHURCH (Pastor, Glenn Russell) in LYONS at 4PM. NORMANTOWN BAPTIST CHURCH Pastor, Don McClellan officiated. It was a joyous occasion with a crowd of friends and family present.

1-14-08

Hello everyone! It is my understanding that all of Toombs County is on pins and needles waiting on this update! AMEN! I am going to write on top of the other e-mail that I sent so that if it gets forwarded the information is still attached. Ok. Well, KENNEDY IS NOW A PATIENT OF DR. ANTHONY ATALA! You can just imagine my face as we pulled up to this place and read this large sign that said Wake Forest University Baptist Medical Center Let me see how I can explain all of this so that it is understandable. According to Dr. Atala he must finish his clinical studies with the spina bifida patients first before moving on to bladder extrophy patients. He has been working on that since 2006 and more than likely he should finish that up this year and start on bladder extrophy patients next year. (that is what Kennedy has).

I know that it seems a long way off BUT if we had not of gone it would have been longer. You see, Dr. Atala is only conducting these studies on HIS patients. She would not have been able to get a new bladder anytime soon by not being his patient since Dr. Atala is the one the FDA has approved to do the research. He has Doctor's all over the country calling him and asking him to see their patients but he is unable to at this time. He has to finish the clinical studies on the spina bifida patients, start the study on the bladder extrophy patients, all the while he is growing HEARTS in the lab!!!! WOW! Technology. God's hand at work!

So, I am guessing, 2006 thru 2008 for spina bifida, 2009 thru 2011 for bladder extrophy and then he will be at the stage on the implanting the regenerative hearts they are working on now..... so busy man..... he ordered a urodynamics study of Kennedy's bladder which will be performed at MCG in Augusta within the next few months. She is going to be required to have a surgery to increase the size of her bladder, which is what we have been postponing to see what the time frame on the new bladder would be. This is to get her through until she gets her bladder sometime in 2009 or so. That procedure will be done this year. She has had this done 2 times before and it is AWFUL!!!!! They take a piece of her small intestine and wrap it around the bladder to give it more size, since hers does not grow. Anyway, there is allot happening and still a LONG way to go.

While we were sitting in the appointment a doctor called from New York asking Dr. Atala to see his bladder extrophy patient, a 6 month old little boy. He told the doctor to get him on in to see him because the list was growing and only a few would be able to get in the first stages of the study. That right there made me feel much better about making that trip. The point is that Kennedy is now on his list (near the top)!

I still have a dozen questions and will have those answered over time but just know the bladder is just the beginning. She will then have some reconstructive surgeries for her urethra tube etc. and then we will address the kidneys.

Currently, Kennedy is scheduled to be Baptized on February 24, 2008.

Once again, thank you for the prayers and for getting the word out!

I have attached a couple of pictures too.

Oh, on a VERY light note... Kennedy thinks Dr. Atala looks like Mr. Bean.

Love to all,

Ginger

1-11-08

Dear Friends and Family:

I am not surprised but humbled at the fact that God is supplying our needs. A medical fund has been set up if you know of anyone that is wanting to make a tax-deductible donation they can. All donations should be sent to:

A tax deductible donation can be sent to or made at:

Altamaha Bank & Trust Company
P.O. Box 489
206 Jackson Street
Vidalia, Georgia 30475
memo: Kennedy Joiner benevolent fund 130740

Kennedy Joiner Benevolent Fund
PO Box 1455
Vidalia, Georgia 30475

A non-tax-deductible (gift) donation can be sent to or made at:

Peoples Bank of Lyons/Vidalia
P.O. Box 386
113 N.E. Broad Street
Lyons, Georgia 30436

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Peoples Bank of Lyons/Vidalia
2301 1st Street
Vidalia, Georgia 30474

Kennedy Joiner Benevolent Fund
PO Box 1455
Vidalia, Georgia 30475

If you would care to donate through PayPal. Donations ARE tax deductible.

This is a very touching thing for me. I know not what will happen on Monday nor can I answer any of Kennedy's questions but we both rest assured that God is in control. (Number 1 we didn't think this would be an option till she was at least 13) so this is much sooner than anticipated but she is in need of a new kidney and nothing can be done until something happens with the bladder.

Please continue to pray for this Angel..... this Princess of the King. what am I talking about!!!!! THIS WARRIOR OF THE KING!

WOW!

Some people have started prayer chains and I appreciate that! So feel free to forward this email as it has her story attached. ok, I know this is general but I promised to keep everyone updated and I can only do that through e-mail and text messages so, if anyone wants to be on the list please have them e-mail me so that I can have the address.

Thank you to all. God Bless You!

Ginger