Archive for 2011

When a child is diagnosed with a chronic and life-threatening condition, the whole family suffers. Such a condition could be anything from cancer to heart problems to cerebral palsy or the need for an organ transplant, with care that often can be only obtained at major pediatric hospitals. Families that have to drive hours to clinic visits and are often separated for long periods of time during hospitalizations because the cost of lodging for the entire family is too great. The treatment for these conditions is normally expensive, and many families do not live in the same city as the hospital and clinic where they are seeking care of their child. Furthermore, even if the treatments are largely covered by health insurance, the South Carolina insurance won’t pay for medication or walkers and other supplies that Tyler needed in Maryland. The associated costs of travel and lodging can be overwhelming for many families, not to mention the physical, emotional, and relational toll that is taken on the family.

We are going to Maryland the 14th with an appointment on the 15th. We are driving because we cannot get a flight. Please say a prayer for Tyler and our family. This is so depressing, both mentally and financially. Tyler’s jaw must be looked after, and it has to be in Maryland. Dr. Rodriguez has to see Tyler. His legs are doing well, but he has a lot of pain in them when trying to walk. Yes, walk! Tyler is walking slowly, but walking. Say a prayer that all Tyler’s pain will go away and pray that the next surgery will be the last one for a while. We need to get him over this surgery. God, please make it all go away. It’s so hard to watch my boy suffer the way he does with all the surgeries he has to have. His little body is mutilated, scars where he’s been cut all over. He’s now had 47 surgeries.

Tyler’s one strong little 11 year old, what a trooper. God has been with us all the way. We still need donations. We have to travel, and Tyler will be having another surgery in a few months. Thank you to all Tyler’s angels for your love and support. I thank God each day that you all are here for our family. We love you all.

And now can you all believe Christmas is only a few weeks away? I finally got the tree up and hope to have a wonderful dinner with my family. I have not asked for help with Christmas except for the elves of Charleston with Courage Kids. Nathan will not be getting anything from them . . . just Tyler and his brothers.

God bless.


FROGgin’ (F.R.O.G. – Fully Rely On God)
for
Tyler


Tyler Tucker c/o Darlene Cox
PO BOX 14386
Greenville, SC 29610

Hello Everyone.

We are suppose to take Tyler back to Maryland, but we got a call today that we cannot get a flight with Children’s Flight of Hope. They have maintenance the week of the fifteenth, so now I don’t know what we are going to do. We will have to drive if we cannot find a flight, but that takes money we don’t have for gas and food. Tyler has to go to Maryland to see Dr. Rodriguez because his surgery site looks bad and he is weak.

This is so stressful right here at the holidays. We need any help we can get. If you can help us, please do .You can donate at tylertucker.com using the donation button, or mail us at

Tyler Tucker c/o Darlene Cox
PO BOX 14386
Greenville, SC 29610

or use my pay pal at ">.

This is the seventh time we have had to go to Maryland in the last year. Gees. I will keep my faith and know that God  will provide the help we need. I hope you all read the Greenville news. Tyler was in it and you can read it at tylertucker.com.

I already called the RMD  House and asked for a room for a few days. I’m going to call the social worker at the hospital see if she knows anything we can do. I hate to keep asking people for help, but without help, Tyler won’t get the help he needs so bad. He’s a really sick little boy. He’s been throwing up and so tired.

Tyler had three operations while we was in Maryland. They cut his jaw from ear to ear and then they cut his leg to get muscle for the jaw from his knee to his hip. Then they cut the other leg on both sides of the knee to get the rods out.

Please keep praying for Tyler. He needs those prayers. I just wish I could make this all go away. Once again, thank you for all your love and support. It’s what has kept Tyler here with us. All the cards keep a smile on Tyler’s face. No matter what you done, we are so grateful. Don’t forget to tell you kids you love them. This could be your child. You never know what tomorrow will bring. God bless, we love you all. 


FROGgin’    (F.R.O.G. – Fully Rely On God)

for

Tyler

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Tyler Tucker c/o Darlene Cox
PO BOX 14386
Greenville, SC 29610

Hello,

Tyler is doing well, he sees Dr. Rodriguez tomorrow and if he says that it’s okay, we will go home on Friday. Tyler’s really wanting to be home. He’s still on a lot of pain medication. We will take Tyler home and try to make things normal for him. He will get to spend Christmas with his brothers and Nathan. And we thank God for all the many blessings that he has given us. And for all of you that have prayed so hard for him. God hears your prayers

Tyler’s neck is still bleeding and he has to keep gauze on it. His neck was cut two inches further than the last time. His legs are doing well. He cannot walk, but I think he will in a few weeks. Tyler said he missed his homebound teacher Mrs. Bright. We called her and Tyler talked to her. He loves Mrs. Bright. He also wanted to talk to Debbie at Courageous Kids. He wanted to tell her he loved her. She was so surprised. She loves TyTy so much.

He’s such a trooper and Dr. Rodriguez said he was so proud of Tyler. He says Tyler will have to have more surgery in about three months, but that he sees a bright future for Tyler. I hate that not all the surgery was done, so now Tyler could get a break, but Dr. Rodriguez is doing what’s best for Tyler. He said this is a temporary fix, that the plastic fixture he put in cannot stay in TyTy’s jaw. He said pray hard that if the bone from dad works, Tyler may never need another surgery after the next one is done. Or at least not until he’s a lot bigger.

The Medicaid wouldn’t pay for Tyler to get a walker. They said that we had to pay up front for one, and we did finally get a wheel chair. We ended up paying for Tyler’s medication, so we only could get what he had to have until he gets back to SC, so his Medicaid will pay for it. They told us at the hospital that they didn’t have a contract with SC Medicaid for medication. Anyway, it’s taken care of.

We were spending thirty dollars a day at the hospital for dinner. It was really high cost there. We were using our Subway gift cards for lunch. Ashley said she never wants to see a sub again.

We are so grateful that people cared about Tyler and our family and have helped us.

This nice lady Katrina and her husband brought us dinner one night to the hospital. She’s from Coles Foundation. She was so sweet, and we loved her visit. She also brought us a donation and balloons for Tyler. We sure thank her and are so grateful. We thank all of you for all your prayers, love and support, no matter what you did, we thank you. Tyler has a long way to go, so please keep him in your prayers.

We will be getting ready for the next surgery, so we still need donations and prayers. If you would like to help Tyler and his family, please donate at tylertucker.com or use my pay pal, . Also, you can send in mail.

I promise all the money goes in to Tyler’s account for his medical care and trips to Maryland. These trips really cost. Tyler will have to come back to Maryland in three or four weeks for a checkup this is a long way, but Dr. Rodriguez said he has to see him. Tyler will have a doctor in Greenville that will check him also, but cannot treat.
We were not able to get a flight back home, so Papa had to drive all the way here with Nathan, and will be driving us home. It took him eleven hours to get here. We sure thank the flights of hope for getting us here. We were told that Tyler’s jaw had so much infection, that if we had waited another day getting here, he possibly could have died.

Also please pray for Tyler’s buddy Dylan Kirby. He’s having jaw surgery on Dec 15 at MUSC of Charleston. He’s 16 and needs your prayers.

I am doing great. I walked up to the market place today and wasn’t even tired. Last time I walked, I couldn’t hardly breath and wasn’t able to walk around the place after I got there. I still have a lot to lose, but losing seventy pounds sure has helped me. I have gone from a 4x to x-large, and I feel so much better.

Pease hug your children what if this was your child. I pray you will never have to see your child go through what Tyler has. And it’s not over.

So please pray, pray, pray. Thank you all for all the prayers.


FROGgin’ (F.R.O.G. – Fully Rely On God)

for

Tyler


Tyler Tucker c/o Darlene Cox
PO BOX 14386
Greenville, SC 29610

Greenville News 11/27/2011, Page B01

Boy undergoes 47th jaw surgery

Last-minute hitch prompts change in operation plans

By Liv Osby

Staff Writer ">

It wasn’t the surgery they’d planned, but Ty­ler Tucker underwent
another operation last week as part of the continuing efforts to
repair his damaged jaw.

It was the 47th surgery for the 11-year-old Greenville County boy.

Tyler underwent his first surgery as a tod­dler in 2002 after being
diagnosed with an ag­gressive cancer. Chemotherapy and radiation followed. The disease and treatments destroyed much of his jaw.

So once the cancer was in remission, doctors twice took bone from his legs to create a new jaw, but both attempts failed, leaving him in a lot of pain, as well as unable to speak or eat normally.

Then in August 2009, a titanium plate was implanted into Tyler’s remaining jaw bone to provide structural support, allowing him to eat and communicate better, and attend school.

But as he’s grown, his jaw has shifted, push­ing the plate sideways so that it nearly broke through the skin near his ear, causing more pain, and more trouble speaking and eating, too.

“The plate was fixing to come through his skin … and something had to be done,” said his

See TYLER, Page 4B

Article Continued Below

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See TYLER on Page B04

TYLER

Continued from Page 1B

mom, Ashley Nance. “They couldn’t just leave him like that.”

To resolve the problem, doctors originally planned to take some bone from his mother’s leg to fashion him a new jaw, said Dr. Eduardo D. Rodriguez, a plastic and reconstructive surgeon and chief of plastic surgery at the University of Maryland Medical Center’s R. Adams Cowley Shock Trauma Center, where Tyler has been treated.

When she turned out not to be a match, though, Tyler’s father, Richie, was tested and found to be a match. So the plan was to take leg bone from him, Rodriguez said.

The operation, which was months in the planning, was scheduled. And the family made arrangements to travel to Maryland and stay at Ronald Mc-Donald House for two months.

But just days before the surgery, it was discovered that Tyler’s dad has a common virus — Epstein-Barre virus, or EBV — that could cause Tyler to develop lymphoma because he must take immunosuppressive drugs
after the surgery to prevent rejection of the donor bone, Rodriguez said.

Plan A was scrubbed.

“It was hard after all the planning. But in the end, it’s what’s best for Tyler,” Rodriguez said. “Patients who are going to be on immune suppression, and who are EBV-negative, have the potential of developing lymphoma. And the risk of him developing lymphoma was significant, especially with his past history of cancer. It would be horrible if he ended up developing lymphoma.”

But Tyler was suffering. Something had to be done.

So in a 12-hour operation Monday, Rodriguez’ team removed the old implant, which did push through the skin in the OR, he said. They then implanted another jaw bone fabricated of composite material and took a
flap of tissue from Tyler’s left thigh and transferred it to his right cheek to provide coverage over the implant. Rodriguez and his team have volunteered their services for all the surgeries while the hospital accepts Medicaid. Because of his condition, Tyler is uninsurable, Nance said.

Once he’s healed, he should be able to eat again, Rodriguez said, and have less pain. “We reconstructed a replica of what it would look like with the leg bone,” he said. “I think he’ll be comfortable for quite some time, better than before.”

It’s hoped that the bone transplant surgery can be performed in several months, he said.

Nance said Tyler came through the surgery well. He will be in the hospital about a week and at Ronald McDonald House after that.

“They lined him back up and filled in that side of his face. And they opened his ear back up and everything,” she said. “But he’s really swollen. No matter how many surgeries they have, you don’t get used to seeing them like that.”

Rodriguez said if everything goes well, the family should be able to return to Greenville by Dec. 2.

And while he’s missing Thanksgiving, at least now he’ll be home for Christmas.

“He’s so tough. He’s a great kid,” said Rodriguez. “The thing that pleases me the most is he’s growing, getting taller. Our future is bright.”

TYLER’S STORY

To follow Tyler’s progress, go to www.caring­bridge. org/ visit/tylertucker

Powered by TECNAVIA  Copyright (c) 2011 The Greenville News 11/27/2011

Things here are not good. Tyler had a bad night. He had some pain yesterday.

They tried to take the breathing tube out but he couldn’t breathe on his own. After many tries, he finally did start to breathe on his own, thank God.

They cut Tyler from one side of his ear almost to the other ear and grafted skin from his leg and hip to fill in his jaw. They also took the rods out of tiles’ leg where it had been broken in the last operation. The only trouble is that all he put into Tyler’s jaw cannot stay but has to come out. It’s a temporary fix, for up to a year.

Dr. Rodriguez said he couldn’t do the bone transplant because the medication Tyler would have to take after could cause him. So before that surgery, Tyler has to be tested. They are running a test today to get Tyler’s blood to get a positive reading on Tyler’s blood. Dr. Rodriguez said that he wants to do the bone transplant in three months (that was supposed to have been done yesterday). Dr. Rodriguez said that until everything is right, he would not take a chance on Tyler getting that cancer back and it killing him.

Please pray for us. Tyler is at the Baltimore, MD hospital ICU children’s floor. Our address here is

RMD HOUSE, DARLENE COX FOR
TYLER TUCKER
2303 NORTH HWARD STREET
BALTIMORE MD, 211218
PHONE 1-410-366-4024, ROOM 211

Most of all, we need your prayers. The surgery Tyler had yesterday was 16 hours. I don’t know how long he will be in ICU.

ANY ONE THAT CAN DONATE, PLEASE DO. If you don’t want to send money, please send gift cards.

Thank you to everyone who has donated. You are saving Tyler’s life.

Ashley got three little slices of turkey, mac and cheese, and scoop of rice. It was almost nine dollars. We had to get a cab to get to store and it was $15 there and $15 back. We also have to pay for some medication that Tyler and Ashley had to have. Medicaid wouldn’t pay because it’s out of state. It will pay on Tyler’s as long as he’s in the hospital. When he comes to the RMD House, it won’t pay for his medication, so yes, we need money. I don’t even know how we will get Tyler home when it’s time. I don’t know if he can fly because of the flight jerking on landing and takeoff. I’ll have to rent a car, maybe to get him home. We’ll worry about that later. He’s sure not going anywhere for a while. I’m going right now to the hospital that Ashley stayed in last night. I will update more as soon as i get more information.

If you live in Maryland, drop by and visit Tyler.
Thank you all, we love you!

I sure am missing my little Nathan, Ethan and Jayden, Papa too. Richie is taking really good care of them, but it sure hurts to be away from my boys.

Pray, pray, pray for Tyler and our family.

FROGgin’ (F.R.O.G. – Fully Rely On God)

for

Tyler


Tyler Tucker c/o Darlene Cox
PO BOX 14386
Greenville, SC 29610

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