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Tyler’s Story

Welcome to Tyler's Caringbridge page.Tyler is in remission from Rhabdomyosarcoma. He is still facing many surgeries due to complications from the cancer. Please read my story to find out more about Tyler. Please be sure to leave us a note in our guest book letting us know you were here.
Hope love and prayers.Together we can save
Tyler Tucker

 JUST LETTING YOU NO THAT DONATIONS OWN THIS PAGE DOSE NOT GO TO TYLER ,IT GOES TO KEEP CARING BRIDGE PAGES RUNNING SO IF YOU WONT TYLER TO HAVE THE DONATIONS PLEASE SEND TO PAYPAL TURPIN10648@GMAIL.COMOR MAIL TO  TYLER TUCKER C/O DARLENE COX  PO BOX 14386 GREENVILLE SC 29610 


At Christmas, just after Tyler turned two he fell on a small toy car and scratched his jaw. The jaw swelled and by New Years Day we had to take him to the hospital. The hospital staff said that Tyler needed surgery to remove a cist. Doctor Wilson did the surgery and came out with tears in his eyes. He said that the problem was not a cist, it is cancer and that he sent a portion of the extracted material to the lab to have it analyzed. The results came back as Rhabdomyosarcoma of the Mandible. When the results arrived, January 30, we were called to his office and he cried with us. Tyler was admitted to MUSC immediately. We felt this couldn't be happening to our baby not Tyler. The staff at MUSC has been wonderful and we were like family. We learned to love everyone there. Tyler has stolen the heart of everyone on Floor 7b.
Tyler was having trouble breathing because of his jaw so the Doctor's decided a tracheotomy was needed. At the same time, Tyler's jaw fell so the medical staff had to wire the jaw shut. Then he couldn't keep feeding tubs in forcing them to replace the tube six times.
After radiation and chemo Tyler underwent surgery again where they took a bone from Tyler's leg and transplanted it into the jaw. Shortly thereafter it was diagnosed that the cancer have moved to his lungs. Both lungs were infected. Tyler lost the upper right portion of the right lung and chemo seemed to clear up the left lung, as a result of this surgery a chest tub was inserted. Tyler was so strong that he went walking down the hall with that chest tub. Doctor York said she wants a picture of Tyler to go over her desk. She said that he was the strongest kid that she had ever seen and that he was her miracle baby.
It has been really hard on our family. Ashley only twenty three and can't work and Tyler in and out of doctor offices and all the trips then and now. But God has been with us and he has got us this far. Tyler had four staff infections while he was in the hospital, which encompassed most of 2003. We took a camper and stayed in it at Lake Air campground so we could be with Tyler and Ashley.


Tyler is now in remission. This doesn't mean he is cured or better in anyway.

Sadly The cancer has done so much damage to Tylers little body.

He has been through 59 surgeries.as of 2014 We will have to take him to MUSC or University of Maryland  for his entire life. He will spend his entire life going through this he will never be 100% better as the doctors told us. He has had a lung removed, and 1/2 of his leg bone tooken out to replace his jaw. Now his jaw replacement isn't working with the leg bone so they have to fix that soon. Not only this he tends to get sick often. He won't be able to do things like normal kids cause of these things. We also have been told he won't eat like other kids, and maybe never able to have a baby when he is older.

The cancer he had isn't like most common cancers we have only found 5-6 other kids (This isn't 100% accurate, but the amount is very small in the USA we are just going on what we have found on the net.) Alot of them have had it come back or passed away from it sadly . Tyler wasn't suppose to live is what the doctors told us. We are very lucky to have him I know he is gonna make it!!!!!!


The chance of Tyler's cancer coming back is very high, but we think he will be fine cause we are trying so hard to get so much support for him, and having the whole world caring about him. We have hope, and Tyler is a warrior!


Be sure 2 leave a note in my Guest book.
Poor Tyler's been through a lot and could sure use some cheery mail to remind him that he's special and loved by God! Share a little joy with Tyler by sending him some "happy mail."



Latest Journal Update

prayers needed for tyty

hello every one just wonted to post to the last  guess book entry.

every word I wright  is  true on  Tyler's page I would never post any thing that wasn't true

it dose not say he had that many surgeries in two years.it says  has had sixty nine surgeries in all 

  it says he's had to make the trips to Maryland

the surgeries was in Maryland / Charleston and Greenville  and not all own his jaw part own his legs. and mouth

the skin hanging from his eye is from so many surgeries and his eye has fluid they told us here in Greenville

  that if this doesn't go away  there will have to do something .    the picture's posted are not resent ones

all can be verified with the doctors in Maryland    so just give me a call at 864 834 8785

at one time Tyler was going to Maryland ever month . them ever three months and  now things have all changed  

and the doctors have done just about all they can do .so he wont go back for six more months

 Tyler doesn't  up date page because he can not spell that good . YES Tyler has schooling  he has home bound

because the doctors thinks that is best for Tyler

 his cruise in went good  even though it started raining .we love love you all and thank you so much

to the lady that wrote this . as i have said before I do the best I can  ,and if you don't like what's written please just stay off Tyler's page . if you are worried about us getting donations Tyler hasn't gotten donations own line in a while  .We go through enough with out your post  I love Tyler with all my heart  . As far as pain management  they had no car and couldn't get him to Atlanta since it was almost four hours from home. mom Ashley couldn't get the Medicaid van  most times when Tyler needed itI 

 I should ignore  the person that wrote this . but this is our page and we are suppose to post what we wont . 

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Comments

10 Comments

Kim Kirby
By Kim Kirby
Thinking of you Tyler and Darlene and family. Don't pay attention to the naysayers, just keep doing what you're doing. They say they care, but they should walk a mile in Tyler's shoes before making unwanted suggestions. They have no idea what it's like leaving the house when you're in chronic pain. Being a chronic kidney stone sufferer, I completely understand... both how hard it is to focus on school or work when you're in so much pain, and dealing with all the unwanted suggestions from people who say they mean well, but really just can't help putting their noses where they don't belong. I even get flack from my own family doctor at times! Two stones ago, I asked for a note for work because I was in too much pain to go. She looked at me and said, 'You look fine, you're not writhing in pain. Other people take T3s and go to work.' Finally after I burst into tears and basically had a temper tantrum, she wrote me a note. A week later, I was back in her office. I plopped a small clear container on her desk containing the 9 mm stone I had passed at the hospital while on an IV with morphine. All she could say was 'Wow, no wonder you were in pain.' No apology, no nothing. So as you see, I get it. Fortunately I pass my stones and then I have a reprieve for a few months. I can't even begin to imagine what it must be like for Tyler living with this pain every day of his life. Courage and strength to you both!
Joyce Nosker
By Joyce Nosker
Praying for Tyler and you.
June Junko
By June Junko
I'm praying for dear Tyler.....and for you and all his family too ! :) Much love and many hugs from, june
kathy konrad
By kathy konrad
You do seem to attack anyone who comments with helpful suggestions. I never saw anyone post that Tyler wasn't real and yet you always make mention of that. If Tyler's reading skills are that bad at age fourteen, perhaps he should be in a regular class. Is his current homeschooling done by family or by certified instructors who come to the home? Schools are required to help students with physical and emotional disabilities at no cost to you. Learning to read better would open up a whole new world through books. Social interaction with others his age would also be beneficial. Continued prayers for Tyler.
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Brandon & Karen **
By survivors — last edited
Two years ago when talking about him going to Maryland May 24th you said he had 50 surgeries. ... So I am sorry but when you say 69 .. That means he's had 19 surgeries in two years. I got the number from actually reading and paying attention to the journal.
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Tracy W.
By Tracy W.
Prayers. I've crossed many states for DD'S care. Medicare is national and if the family is struggling like your posts say co-pays should not be an issue. It's called income based free care. Also it is illegal to refuse live saving and quality of life that severely impedse treatment.
Considering his mother's medical issues from car crash etc.
Sounds like hospitals are saying nothing more can be done which is a horrible thought too accept but at some point his comfort must be put before the families need to keep searching for help. I speak from being there. The worst thing in the world is too acknowledge we must make our child as comfortable as possible and hold on to those days
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Brandon & Karen **
By survivors...keeping hope@alive — last edited
Last year you said he had 60 surgeries ... So that is 9 surgeries this year. I looked back and it increased by 20 surgeries in the last two years. I wasn't being ugly ... I don't care if you get donations online. You should set up a gofundme account since you need everything funded for gas, food, medicines, clothes, medical care .etc.. You can advertise it everywhere ... And people can actually see what is donated and the goal you have... Since rented vans are $2000 .. Maybe you could raise some more and go buy one .. Or the 40 grand .. Or the tax money for your land, legal costs, computers, insurance..Christmas, birthdays, etc.. I was just trying to help. Tyler needs an education if he has trouble spelling. It would do him good to go to school and have professionals assisting him with therapy. It's got to be lonely to be 14 and home all the time. You guys need to stay positive for him. Give him positive outlook. Look how far he has come and from everything he has been through. Attitude is everything !! There's always hope ... Also no one said he was fake .. You've said that a few times. I said he looks good despite all he's been through. When people look at the paperwork and what is written about my surviving cancer patient which I was the primary caregiver .. They can't believe that he looks so good. You attack people all the time for commenting. You want to take things negative that are not negative ... Despite what is written on paper is not calling him a fake. It's saying despite his records he looks good. He looks normal. You want positive .. You can't get more positive than giving him a compliment. I have followed Tyler for years now and pray for him. You attack people on caringbridge who are here to support. I know what it takes to take care of a family with limited resources and we WORK ... Medicaid is a state and federal program .. They work together and negotiate fees with hospitals and if they take it then it's the same price wherever you go... Medications are too. Maybe you don't know that but it's TRUE. WE HAD TREATMENTS IN MULTIPLE STATES SO WE KNOW !!! Good luck to Tyler and I hope that he continues to have a positive outlook .. And will be able to do more in the future.
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Sarah Nixdorf
By Sarah Nixdorf
Thinking of you.
Www.caring bridge.org/visit/sarahnixdorf
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Shelly Jermyn
By Shelly Jermyn — last edited
Prayers to Tyler and your family.
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Deb M.
By Deb M.
Thoughts and prayers to the whole family! May G_D hold you in his loving hands. May he guide those who can help here on earth to your door. May he look over Ty and may all his needs be met.
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