Hello everyone,

Well, it’s been 12 days and no word from Johns Hopkins about Tyler’s surgery. The Greenville news is still trying to contact Dr Rodriguez’s because they have to talk to them before they can run the artical on Tyler in the paper. Dr. Rodriguez’s sectary said that they are trying to get Johns Hopkins hospital to reverse the decision and accept Tyler’s medicaid. She said it would take a little while and that I should not give up.

Tyler is still hurting in his jaw and leg and still taking a lot of pain medication. His new jaw is made and aiting for him at Johns Hopkins. Did you all know that there are only about two or three doctors that can do what Tyler needs done to his jaw? I feel that these doctors can fix Tyler’s jaw. I pray that we can get this done for Tyler to have a normal life. It just wasn’t meant to happen on the 16th of June. Only God knows why. I was so up set but know that I need to be counting my blessings and be grateful that Tyler is here with us, There are a lot of kids a lot worst than Tyler out there. A lot of family’s don’t have there babies .Thank you all for your prayers and donations. What money he has is in the bank and will not be used except for Tylers medical needs; for Maryland Johns Hopkins or MUSC Hospital, which ever one he needs to go to.

Tyler has to stay under a doctors care at all times. Thank you for the card and letters this is so much appercated. It helps so much to know you care. So from the botton of my heart, thank you. Please sign Tyler’s guest book to let us know you were there, and most of all, please keep Tyler and our family in your prayers.

*THIS IS STRESSFUL,EMOTIONALLY, FINANCIALLY
SEND SNAIL MAIL:
TYLER TUCKER C/O DARLENE COX
PO BOX 14386 GREENVILLE SC 29610*

Tyler’s family would like to thank all who have donated to help Tyler and his family. They would also like to clarify, for those who donated to CaringBridge.org, how those donations are used.

When you donate at the CaringBridge website, the donations are used to keep the site going for the wonderful services they provide to families struggling will serious illnesses. The site connects families and brings them comfort and hope in hard times. Below is a statement from CaringBridge about how the funds are used:

Your gift supports the mission of CaringBridge: to bring together a global community of care, powered by the love of family and friends, in an easy, accessible and private way. While funds are not provided directly to families, your gift helps those using the free service stay connected while they heal.

When donations are made through TylerTucker.com, they go directly to Tyler’s family to help with medical care and traveling costs. This gives the family the vital funds they need so Tyler can see his doctors, who are three hours away from his home.

Thank you again for all of your love, support and prayers.

SURGERY IS ON HOLD FOR NOW

Hello,

Bad news. I am sitting here tears running down my face; I can’t stop crying. Poor Tyler, I had a call from Maryland Johns Hopkins Hospital. They will not accept out of state Medicaid. We were told that they have to cancel Tyler’s surgery. What’s left? What else can we do??? It took over a year to get this surgery!

We were packed and ready to get in the van when we get a call from Dr. Rodriguez’s office. First we were told that Dr. O’neal hadn’t sent his paper work to the Medicaid office; so we got on the phone to Dr. O’Neal’s office. Thankfully, he got on the ball and faxed everything that was needed and within hours, a lady by the name of Mavis had it approved.. Well, we are ready to go once again and then another call from Dr. Rodreiguez’s office telling us they wouldn’t accept SC Medicaid. Dr. Rodriguez is going to try a higher official and get the decision reversed, BUT, that may take a month or longer.

How could they do this? They had already made Tyler’s $2000 jaw. I was told by the secretary Courtney that Dr. Rodriguez will be calling me. We are devastated! We have letters saying that no Doctor in SC can help Tyler We also have an email note from Dr Rodriguez’s office saying that they will accept SC Medicaid if Medicaid will pay for Tyler to be taken out of state. Now all at once Johns Hopkins won’t take SC Medicaid. I know that God has a reason for everything but I just don’t understand; Tyler needs help and we are running out of options.

Tyler has no Doctor. Because of his 37 surgeries no one is willing to treat him. Dr. O’neal and Day have already given up on Tyler; they say that there is nothing else they can do. So we don’t know where he will get his pain medication. He has refills for only two more months. Eating hurts Tyler and he wakes up kicking the walls some nights in pain he lives on pain medication. His little legs hurt for hours afterwards when he goes out to play. He would like to be able to jump on a trampoline or wrestle and play with his brothers. But he has to be careful because his bones are soft and break easy. He just wants to be a normal little boy.

The Greenville News is coming on Monday to do a newscast about Tyler. Just maybe a doctor here in Greenville will see it and know how to help TyTy.

I want to thank all of you that helped with money and gas cards for Tyler’s trip to Maryland. You gave us piece of mind that we could make this trip and not have to worry about lodging, food and gas. I PRAY Maryland changes its mind and does surgery on TyTy, I promise I will be keeping all the money in Tyler’s account. It will not be spent except for medical care for Tyler. We know that with our this surgery Tyler has a very limited future.

Thank you for your prayers for Tyler. Also please say a prayer for me that my health will stay good, so I can be here for Tyler. I went to the doctor and was put back on blood pressure medication. All this has been so stressful.

Donations for Tyler can be taken to any South Carolina Sun Trust Bank. Give them the name Darlene Cox for Tyler Tucker. It will be put in his account. You can also use PayPal, using my email address (click on the “Donations” tab).

Hello,

Well it’s seven more days till Tyler’s surgery. I want to ask that all of you please keep Tyler and our family in your prayers.

I known that God has been with us through 36 surgeries and he won’t let us down on number 37. Tyler told me he wasn’t afraid. I told him I was glad and if he wasn’t scared then I wouldn’t be. I told Tyler that I would get my strength from him because he’s so strong and brave. What a trooper!

As I look at Tyler and his little skinny fifty-eight-pound body, his little face, and think about the way he can’t sleep at night. He can hardly eat and his little legs are giving so much pain. I feel that this operation is the right decision. It’s our chance to give him some kind of normal life. I want him to be happy, play, jump, run and smile; go to school like other children his age do. It seems like all he does is sit playing video games and watching movies.

I have told his mom, Ashley, he doesn’t need to be playing video games all the time but, she says there’s not a lot he can do…without his legs or his jaw hurting him.

I want to thank each of you that have helped to see that Tyler gets to Maryland to have his surgery…it dosnt matter if you donated a dollar or a hundard dollars it is all appreciated. Thank you for your cards and books, movies and games. Tyler loves getting snail mail. There’s not a lot that makes him smile but getting mail does!

Donations for Tyler can be taken to any South Carolina Sun Trust Bank. Give them the name Darlene Cox for Tyler Tucker. It will be put in his account. You can also use PayPal, using my email address (click on the “Donations” tab).

We have a gas card that was sent to us.

THIS IS STRESSFUL,EMOTIONALLY, FINANCIALLY
SEND SNAIL MAIL:
TYLER TUCKER C/O DARLENE COX
PO BOX 14386 GREENVILLE SC 29610

I want to take a minute and thank a few people that brought a tub to my house to soak and message Tyler’s legs. This was a wonderful thing to do for Tyler and it is helping him.

Thank you Joe, Deddie, Mr. Banks and Steven. Thank you for Loving and caring about Tyler.

Its helping with the pain, Thank God.

Prayer works so please storm heaven for Tyler. He’s going to have a rough week next week.

We love you all.

To receive blog updates please register with the website click here to register It’s quick, and very easy.

Note to myspace friends:
Just wanted to let everyone from myspace know we are trying to keep all the communication and comments on this page. The reasons why is due the fact with myspace I have to go through a BUNCH of spam, and it takes hours to get anything done. I also want to make sure everyone gets a response to questions or comments. Which I couldn’t deliver at myspace cause it was only one person managing his account. Here I’ve invited more of our family so we can all help respond, and manage things. This does mean myspace questions, or comments will rarely go answered, sorry. So for future Tyler updates, and comments please bookmark this page.

If you have any questions feel free to ask!

Hello,

Things here are okay. We are getting ready to take Tyler for his jaw replacement in Maryland. He only has two weeks until it is time to go and we still don’t have a place to stay there. I have called the children’s house but they still don’t think they have a place. It will be okay. Tyler’s going even if we have to stay in the van. I pray that Tyler will be okay and that we won’t have to stay too long away from home. This is going to be between a 15-18 hour surgery and we will be there a while I am sure.

Being there with Tyler is the most important thing to me right now. We don’t have but a few dollars to take with us but God will provide. He always has. Please pray for Tyler and our family.

THIS IS STRESSFUL,EMOTIONALLY, FINANCIALLY
SEND SNAIL MAIL:
TYLER TUCKER C/O DARLENE COX
PO BOX 14386 GREENVILLE SC 29610

We took Tyler to a car show to raise money for Courageous Kidz-A Safe Haven for Kids with Cancer. He did great. They auctioned off a small four-wheeler and then it was given back and auctioned off again! Well, a lady got it and she said she wanted Tyler to have it. He finally felt like riding it and was on it all day yesterday. He was having a day of fun!

I thank God that we got to see him play and have fun before his surgery.

No matter if the world is coming to an end, if the President is Black or White, Blue or Red, if the economy is good or bad…. Those kids STILL have to undergo chemo, radiation, doctor’s appointments, throw up, have a fever, miss school, etc… here’s a poem that was in tylers journal”

“I watch you playing,
Without a care.
It’s hard to believe
The cancer is there.

You look so bright,
So happy and well.
If someone new met you
They couldn’t tell.

Your strength is amazing,
Your courage so strong.
You’ve fought this disease
So well for so long.

It’s from your strength,
that I draw mine.
I know you will come through this,
It’ll just take time.
Carry on smiling,
I will too.
Through the hard times
I’ll carry you.

You are my world,
The air that I breathe,
I know in my heart
You’ll never leave.

Keep strong my love,
The battle has begun,
But with your strength,
It will be won.”

With Tyler’s surgery approaching fast, we still have no idea where we will stay or how we will pay for the cost. I have put it in Gods hands.

Tyer is still in a lot of pain, but he is eating a little better. He still has to take a lot of pain medication, which breaks my heart. It is a shame for a little guy like Tyler to have to take all those pain medications. It makes him hyper-active, but it does help a lot with the pain.

It seems so wrong that he should need so many operations; this is number 37! But I know it is necessary for him to have any kind of real life and be able to eat normally. Right now, Tyler weights 58 pounds. He should weigh around 89 pounds. He will still need more surgeries as he gets older. After the surgery, Tyler will still need after care at the Hospital in Charleston, so we will be making a lot of trips up there.

The surgery will take between 15 and 18 hours. I am asking for your prayers for Tyler. Please begin a chain of prayers for him!
I have prepared the things you all have sent for Tyler, like coloring books and crayons, so he can have something to do at the hospital. Tyler still loves getting snail mail, so please keep those letters coming. Thank you all so much for your support. We love you all!

TYLER TUCKER C/O DARLENE COX
PO BOX 14386 GREENVILLE SC 29610

Hug your children, tell them you love them every chance you get.
Remembe?r that children are a gift that is given to us and we need to make every moment a memory and never take anything for granted.

THIS IS STRESSFUL EMOTIONALLY AND FINANCIALLY.

PLEASE KEEP SIGNING TYLERS WEB PAGE AND STORMING HEAVEN FOR HIM. WE COUNT EACH TIME GUEST BOOK IS SIGNED AS A PRAYER. IT MEANS A LOT TO TYLERS FAMILY.

A prayer from a friend for Tyler:

Dear Lord I ask that You place Your healing hands upon sweet Tyler and help him get rid of any sickness his little body is fighting right now. Please Lord he needs You so much right now. Send down a few extra angels to make sure he is protected from anything that might jeopardize his full recovery. He is fighting so hard Lord and I know only You really know the true extent of it but I have so much faith that You will come through for him.

Please Lord I am begging along with so many others for a miracle with little Tyler’s name on it. I know only You have the power to give this little boy back his life Dear Lord and I am asking You to do just that. Let him be healed and give him the chance to lead a healthy, long life.

Dear Lord he has already suffered so much and I just pray that You keep the cancer in remission and show the doctors that miracles are real and they happen everyday to sweet boys like Tyler.

Please Lord give Tyler a chance to spread the word about miracles from Heaven and give him a chance at a real life. Only You can give him this gift. In Jesus’ name I pray, Amen.

Wednesday, May 6, 2009 12:19 PM, CDT
UPDATE: Turns out Angel Flights will not be a option so we will drive there.

So we move on from one thing to another!

The social worker called, as did Angel Flights. We were accepted, as long as the weather is good and there is no problem with the pilots being out sick. We are only allowed to take 25 pounds of luggage on board for all three of us! There is just no way for us to manage that. The plane is really small and can only take so much weight. If I had some flyer miles, I would use those. Maybe if I wasn’t so fat!

Anyway, it looks like we will have to drive instead. That way we will have a way to get around when we arrive in Maryland. The social workers are trying to get us a children’s house for a place to stay, but there is no guarantee. I am concerned about what it will cost us to stay down there.

The social workers says it is much more expensive there than here in Greenville. Motels cost $89 per night, even with a hospital discount. Staff at the hospital pays $100 a month just to park. We will be there for a week or two, so the cost could run in the high hundreds. Not quite sure how we will manage to pay for that.

Whatever it takes, I have to be there with Tyler. His surgery will be 15 to 18 hours long. It is scheduled for June 16th, six weeks from now. They told us that Tyler will probably need a tracheotomy and a feeding tube. I really hope we can get by without the tracheotomy. That is so painful for him and he is already in so much pain.

Please help us out if you can. Here is the address:
TYLER TUCKER C/O DARLENE COX
PO BOX 14386 GREENVILLE SC 29610

P.S. Just let me know if you need the phone number for Angel Flights. I’ll send it right over to you.

Hello, Tyler is still having so much pain in his legs and jaw. He hasn’t been able to go to school. When he gets there, they call for us to come get him. Tyler’s surgery is about eight weeks away. I pray that this will help his jaw and he will be able to eat, that maybe his trainer, Joe, will have some answers for his legs.

I have contacted the social services at John Hopkins to try to get an angel flight for Tyler and his mom and me, but I have not heard back from them. We found childcare for the babies while we are in Maryland for the surgery. I know Tyler will be needing our attention.

It will be hard to leave the little ones at home. Nathan is so sweet. He’s a good baby. Jayden and Ethan are also little sweet hearts (all boy). Please keep us in your prayers. Tyler needs them and our family needs them.

This is all so stressful. Please pray for all the others out there that are hurting that are watching their child suffer. Even if the cancer is in remission, some of the children still go through so much. This will be the thirty seventh surgery for Tyler. God bless, we love you all.

Hi Everyone,

Tyler is having a really hard time. He can hardly eat and his legs are hurting him badly. We took him to school yesterday but he was only there a few minutes. Tyler had to take medication for pain before he went to school and it made him sick, so his teacher gave him a cracker the cracker hurt his jaw trying to chew it so they had to call us to come get him.

We notified his dentist and she said until he gets his jaw surgery she can’t do anything to his mouth and we should take him to the ER. Ashley told her that they would just give more pain medication and send him home. He has pain medication already. Dr. Oneal was called he said he will have to readmit him and put a feeding tube in if he does not start eating. Give it a little while, try to get him to eat something. He does not want to put a feeding tube in before Tyler’s surgery if he can help it.

Next step, called Hopkins’s and was told to try to get something in him even if it was soup; that they really need to try to wait till his surgery date if they possibly can. Darn. This morning, same thing. Tyler wakes up four in the morning crying with leg pain. D.r Gross says he does not understand why his legs hurt. I can. The screws are loose and the bones are gone.

I really worry about Tyler he only eats a few things now and he can hardly eat at all. His little face is getting worse. I pray that this surgery is the answer and that we will be able to get him there. THIS IS STRESSFUL, EMOTIONALLY, FINANCIALL, so please put our family and Tyler in your prayers. As my friend from Courageous Kidz always tells me: put it in God’shands and it will all be okay.

We love you all and if you want to send Tyler a card please send to

TYLER TUCKER C/O DARLENE COX
PO BOX 14386 GREENVILLE SC 29610