Justin's battle with Lemierre's Syndrome: February 2012

Friday, February 24, 2012

Fundraisers

Many of you have contacted me in the last 4 years and have expressed to me your thoughts of this horrible disease. Some of you are survivors, some of you family members of lost loved ones and some just learned about the disease through our efforts. First off I want to thank you all for contacting me and expressing your thoughts and encouragement to us. It's because of all your emails and comments that we have continued our efforts and our fight against this disease. For the last 4 years our fight was to make people more aware of this disease, in the hopes it would reach Dr's so we could diagnose this faster. The past 4 years I have been in contact with Dr Robert Centor. Many of you already know him and his website. www.medrants.com He has spent over 30 years studying pharyngitis and all those nasty bacterias. I approached him in Jan asking if he knew of anyone doing a study or needing funds to help start a study and coincidentally that is when he told me about what he has going on. He has a new study going on right now for Fusobacterium necrophorum pharyngitis. This is what he had to say about his new study "We hope to describe the signs and symptoms of fusobacterium pharyngitis. Currently too many physicians withhold antibiotics from adolescents and young adults with significant pharyngitis. We want to change the approach to adolescent and young adult pharyngitis and hopefully prevent the development of Lemierre syndrome." He needs funds to help run this study and I told him we would be willing to help. Many of you have contacted me asking how to run or set up a fundraiser in your area. Since we are the only Charity or Non Profit for Lemierre's it is very hard for us to set up a walk that happens in cities all over the US. I just came back from a fundraiser a company held in PA last weekend. It was a huge success and it will really help towards our goal in this study. We have done a few fundraisers here in St. Louis that have been great we held a Walk, a paintball tournament, a dance, the event at Hidden Valley a few years ago was fun and brought in the largest donation we have received yet! If any of you have ideas of how we can get others involved in cities all across the the US as well as in the UK we would love to hear them. Please email me as soon as you have an idea. If any of you want to set up a fundraiser in your area but do not know how to start or what to do I would be willing to share my thoughts and opinions with you. Any ideas or thoughts you all have would be greatly appreciated! Thank you for your emails, thoughts, prayers and helping us fight this battle!

Monday, February 20, 2012

Our trip to PA

Chrissy and I made the trip to PA this past weekend to accept a donation from a company whose employee developed Lemierre's this past Nov. Every year this company holds a fundraiser for a charity that hits close to home to one of their employee's. This year they chose us since their employee/friend Marc developed lemierre's not too long ago. Everyone was very nice and I love that they do this every year! This was their 22nd year holding this fundraiser. Every year they choose 3 men and 3 women and they hold a BBQ lunch and bake sale and instead of the employees paying for the food they put the money in the canister of the person they want to win. I'll give you one guess on who was crowned King, Marc! ;0) I will post pictures as soon as I receive them. This donation they gave to us is really going to help with our first research study!

Yep that's right Dr. Robert Centor is starting a research study on why young adolescents developed Lemierre's, why the Fusobacterium necrophorum grows with some of the patients with sore throats and not the others...? We are going to help fund this research which means we will be holding fundraisers in the very near future. I am also putting together a database in my Yahoo account with every person who has contacted me in the last 4 years in regards to lemierre's. I will be sending out an email to every person in that database asking for their help in fundraising. Hopefully I will be done with this by the end of this week. We need ideas. As well as help holding some of these fundraisers in other parts of the U.S. Maybe your company has a charity they donate to each year, maybe this year it could be to us to help with this study! Or maybe you want to hold a BBQ or a walk or some other event to help us raise funds for this study. We would really appreciative of any ideas or any thoughts anyone has. Check out Dr. Centor's blog at www.medrants.com Thank you!! Lots of love, Tammy

Justin's news article in the West Magazine

This was taken from http://www.westnewsmagazine.com/news02.html

Rockwood student dies rapidly from little-known disease
By Diane Plattner

In April, Eureka High School student Justin Rodgers began to complain of a severe sore throat and was dead approximately one month later from an unfamiliar disease. Now, his mother hopes to spread awareness about the deadly disease.
Justin died in the early morning hours of May 12, the day after Mother’s Day, after losing a battle with Lemierre’s Syndrome, a serious bacteria that is not well-known and even doctors are prone to misdiagnose the disease. Unfortunately, Rodgers’ doctor was among that group after initially diagnosing him with strep throat on April 11, said Sheryl Rodgers, Justin’s mother.
“Justin had said, ‘Mom, this is the worst sore throat I’ve ever had in my life,’” Rodgers said.
She said that Justin’s doctor took no throat culture and gave her son medicine for strep throat. She said her son’s condition worsened over the next few days during which he had increased high fever, chest pain and a lump in his neck. On April 14, Rodgers took her son to St. Anthony’s Hospital, which transported him overnight to Cardinal Glennon Children’s Hospital where he underwent extensive testing, including X-rays and blood work, Rodgers said.
Rodgers said that hospital officials diagnosed him with Lemierre’s Syndrome, a bacteria that can surface after mouth trauma. Last July, Justin was in a car accident that resulted in mouth injuries that required him to get major dental work, including a recent new tooth. In addition, Justin had suffered a broken nose just before the onset of his sore throat, his mother said.
“I wonder if all this woke up the bacteria, which was already living in the body,” Rodgers said.
The last time Rodgers saw him fully awake was a few days later, when hospital officials decided to place her son on a respirator and sedate him with drugs.
“He was out of it but still with us then,” Rodgers said. “He would frown when the doctors worked on him. So he had some responses.”
However, Justin’s lungs kept collapsing, prompting hospital doctors by April 25 to place him on an ECMO machine to help rest his lungs and heart. Doctors at that point also put him into an induced coma, Rodgers said.
“At that point there was no response from Justin,” Rodgers said. “Still, I talked to him and rubbed his sore spots to let him know we were there.”
By Mother’s Day, Justin was leaking too much blood, prompting doctors to decide to remove him from the ECMO, a move they said was risky if his lungs were not healed enough.
“Once they took him off the ECMO, Justin’s face was getting gray,” Rodgers said. “He was holding his own for a few hours, but then he starting going downhill.”
Justin died early the next morning following Mother’s Day with his immediate family, including three older siblings, by his side, Rodgers said.
“He was our baby,” Rodgers said. “I think the hospital tried to keep him going so he did not die on Mother’s Day.”
The tragedy is not the first for the Rodgers family. They also lost a 4-year-old child in a horseback riding accident and had a stillborn child many years ago, Rodgers said.
“I thought God could not possibly do this to us again,” Rodgers said. “I asked why again, why us. But there is no answer. Here we are walking on egg shells again.”
Rodgers said she was at least thankful that Justin’s funeral was so big that people were standing outside, a huge tribute to his life. She also hopes to honor his life with a campaign to help spread awareness about Lemierre’s Syndrome, which she said often hits people between the ages of 14 and 25. It is not spread by kissing but instead lives in the body, she said. Her goal is to make people, including doctors, more aware of its symptoms so they are not mistaken for strep throat.
“I do not want Justin to have died in vain,” Rodgers said. “This is one bad bacteria. It is very serious. People should not treat it lightly.”
To learn more about Lemierre’s Syndrome, visit the Rodgers’ family Web site at lemierresyndromejrodgers.blogspot.com.

The meaning behind the Camouflage

We thought that the camouflage colors would fit in perfectly with helping us describe Lemierre's Syndrome. This disease hides in other illnesses and is very hard to diagnose. That is why some lose their battle b/c it just simply takes to long for Dr's or other medical personnel to diagnose patients. In Justin's case it took almost over 2 weeks from the first day he was ill to diagnose him with Lemierre's Syndrome. This illness hides in your body and disguises itself as other illnesses sometimes mono, strep throat or just your average viral infection.

Justin's Bio ~ from Tammy

Where do I start! This is Tammy Justin's oldest sister, I was 11 when Justin was born. I was so excited; any little girl that age wants to have a baby in the house to love on. & that is exactly what I did. When he was old enough to talk he called me mommy! Any time my mom would punish him he would say "I'm gonna tell my Tammy!" There was one song that my mom, my friend Sarah & I would sing to him to calm him down. Justin the Bee!Justin was always happy & always got what he wanted "because he is the baby" my mom would say. LOL As I moved out and started my own family Justin & I started growing apart. What 19 year old wants her 8 year old brother hanging around? ;0) I will never forget when I told him I was pregnant with Allen (my oldest). He looked at me & said "YES, I'm gonna be a dad!" We immediately set him straight! "No, you’re going to be an uncle." But he was more then an uncle to my little one, he was like a big brother. He loved teaching Allen new things & they use to aggravate the living daylights out of each other! I use to get so frustrated w/ Justin. "LEAVE HIM ALONE" I use to say. He would get Allen all hyped up.Justin's hobbies are wake boarding, snow boarding, hanging out with his friends & family, listening to music & anything else a normal 17 year old LOVES to do. He was always happy & out going unless my mom or dad wouldn't give him what he wanted!! ;0) He was amazing on the water w/ that wake board & watching him on that tube was so funny! He was honestly your typical teenage boy that loved to get in trouble & have FUN!