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Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him, and He will make your paths STRAIGHT.

Thursday, January 27, 2011

Greetings faithful friends and prayer warriors,
I guess it is well over due for an update on Amelia. Most of you know that Amelia is in desperate need of a bone marrow transplant. What you may or may not know is that we are in the fight of a life time to get her to the hospital that is the best in the world to treat her rare disease. We have worked with University of Minnesota for nearly 8 years now, after all it is where Marshall our oldest son received his transplant 7 years ago. Well things have change a bit in 7 years. The hospital no longer wants to accept Amelia as a patient because she does not have enough insurance coverage. Her cap for her transplant with our current insurance is only $300,000.00, the hospital in Mn estimates the cost to approach somewhere near $800,000.00.
So this is where we are, our insurance is a self funded insurance company run by the Louisiana Sheriff's association, we are trying, begging and pleading with them to raise that cap for her up to either 750k or 800k. They have that ability because they are self funded, it is do they want to? Amelia needs to go to transplant like yesterday, yes there is another hospital that we could use and don't get me wrong they are on the back burner as a back up in the event that we hit every brick wall that we cross, but this hospital (Cincinnati) just does not live up to Minnesota's success rate, right now Minnesota has a 100% survival rate for children 10 and under!! ( Amelia is 10 and will be 11 in June) Cincinnati has lost about 6 children with Fanconi Anemia with in the last 7 months, I just don't want to be there. I am not saying that Amelia will have a sure 100% survival rate, because there is only one who knows that. I am trusting in Him to lead us down the right road and I know that He will be there for us no matter where we go, but also feel that He is wanting us to fight to get her to the best place possible and not to give up yet.

We have taken her out of school and placed her on hospital home bound. Her counts are just too low for me to allow her to be in school with out close supervision. We want her "healthy" meaning free from any kind of colds, flues or viruses. That in it self is a challenge for me!! She is a very social butterfly and well I can only handle so many I'm boards. ;)
I am writing again to ask for you prayers on several fronts. First and foremost for Amelia and her health and that she can hold out long enough for us to fight and get to Minnesota. Her current counts are not great at all and dangerously low, but we will check them again on Monday and if they are still low we will need to move to get her a red cell transfusion and if that happens she will need surgery to insert a port into her chest in which to receive them. Second that this fight with the hospital and the insurance comes through for her SOON! That those that sit on the Louisiana Sheriff's association has a heart and realize that they are making a life or death decision for an innocent child. Strength for me to keep pushing to get her the very best care in the country and knowledge to know when the time has come to get her anywhere and comfort for me know that I am doing the very best that I can for her and her health and just for any and all decisions that I have to make that I make the right ones and don't second guess my self with them! I thank each and every one of you in advance for your prayers, they truly mean a lot to our family.
Please feel free to forward this email to your friends, family or any one.
Thank you.

Trusting in Him,
Kelly & Tyren Bennett
Marshall, Amelia and Nathan

Well a lot has happened since the last time I updated. A little with the insurance, we have the hospital and Louisiana Sheriffs Association (we think) in negotiations. The hospital came up with a price for the LSA to view and approve? Now weather they will approve it or not is a big question. The board meets on February 4th. We should know with in a week or so after that if they are going to increase her cap. Please pray that they make this come true for her.
Reason being......we can no longer wait to move to transplant. She needs to go! If the board approves her we will be leaving in about the middle of March for this transplant to happen....her counts have seriously fallen, not what I was expecting in the least bit at all. We are checking her hgb weekly. At last count her hgb had dropped to 6.8. I am trying to keep her as still as possible easier said than done. I have been a roller coaster of emotions.
Amelia meet her teacher and has started her school work. The hardest part of us is trying to get her to understand that she just can't do things like she use too. We try to avoid crowded areas with her, again easier said than done.

Monday, January 10, 2011

Fight of a lifetime.....

Greetings friends, prayer warriors and faithful followers,

I'm not really sure of where to start here. First let me just start by saying, We have come to the decision that it is time to pull Amelia out of school. It was a tough decision, but with her current counts and knowing that transplant is, one way or another, 6 months away, it was a much needed choice. She hasn't been too sick and we want to keep it that way and we know that this is cold and flu season. We just want to avoid her from getting anything that could hinder her health or the transplant for that fact. So prayers there are needed all the way around.

on to the second front, the insurance, we are still fighting to get this child the coverage she needs to get to Minnesota for her transplant. We need to get to Minnesota, in my heart and soul that is where I know that she will have the best chance at surviving. With that being said, I was in conversation with Dr Wagner and we were talking about some of the new Obama laws that have been taking affect. One of which is the law stating:

Restriction On Annual Dollar Coverage Limits

In general, employer plans can't impose annual coverage limits of less than $750,000 for "essential" health benefits, including hospital services, drugs, emergency services and maternity and newborn care. The maximum limits increase every year and they are eliminated in 2014. These limits apply to new individual policies, too.

Additional provisions take effect on or after Sept. 23 for new plans offered by employers or purchased by individuals since March 23. These include requirements that insurers:

--Cover the full cost of preventive services that have the highest recommendation of the U.S. Preventive Services Task Force.

--Allow women to see an OB-GYN without a referral.

--Do not make plan members pay higher co-payments or coinsurance for out-of-network emergency services.

For more information about the provisions that take effect for plan years beginning on or after Sept. 23, go to

Now from my understanding of reading this means that as of September 23 2010 when our policy renews in July that her transplant cap should be increased to $750,000. So trying to figure that out we called the Sheriff's office department of health ins trying to see if they new if that was indeed the case, because if that is our goal date than we would do all we could do to keep Amelia "healthy" and be ready to go to transplant at that time.
Well this is when we go fired up, the insurance rep that we talked to said she didn't know that she would call the Louisiana Sheriff's association's rep/liaison and see what she could come up with. Well below is a copy of the email that I received from her....
Mrs. Bennett,

Below is the response I got from the LSA's representative:

"As of now, nothing has changed. Therefore, if she tried to get an approval - BCBSLA would deny and so would the LSA. And since the Bennett's have exhausted their 1st level and 2nd level appeals regarding this benefit - they have no other channels to go unless they wish to obtain an attorney and sue the LSA.

As far as the max being lifted this renewal - as you may know, the Obama gunk has several issues and each issue has a different date to be effective through 2014. I have no idea if the "lifting of maximums" is scheduled for this year or in 2012, 2013 or 2014. As soon as I/the LSA know(s), each parish will be made aware.

Sorry I could not offer any "better" news for the Bennett's but as of now, there is nothing they can do."

I'm really sorry. If I hear or find out anything else, I will let you know. Our prayers are with your family.


Well that just put gas on the fire for me! First I have no idea how we have exhausted our first and second level appeals. If calling and asking them to let us use her lifetime maximum is an appeal well then they need to re-look at their policies! The to flat out state that we have nothing left to do but to get an attorney and sue them!! What a cold hearted bitch to have written this!!! To tell a parent that no you can't do anything about it, to have to sit and watch your child dying. How cruel can some one be. If this was going to be her response I think she could have and should have done it with a little more tact!!! I am so beyond pissed right now. We immediately called the sheriff to request a meeting with him in hopes that he may have some kind of info for us and to also inform him that we are going to the media with this, the insurance commissioner and where ever else need be if it comes down to an attorney then so be it!!!
She called the laws, Obama gunk, but more importantly isn't it her job to know these things. I, just a stupid house wife and mom, found the law why can't they. They are hoping that we are going to crawl under a rock so they can get out of paying anything...well this mamma isn't going away. I'm taking Amelia with me to every meeting that we have. The first one up is the Sheriff tomorrow, and if we get the chance to appeal in front of the sheriff's association she will be there front and center to look all those old retired sheriff's in the eye and have them tell her no!!! They are going to tell it to me they are going to tell them no there is nothing that we can do to give you a fighting chance at saving your life!! If they can sit there and tell an innocent child that they can not or rather WILL not help, then they are not men at all!!!!

you look at this face and then have the guts to tell her no there is nothing we can do to help you fight for your life....

We have a fight on our hands so, I am asking for some much needed prayers. Prayers for this to resolve in our favor so that Amelia can get her need transplant in Minnesota where they have a 100% survival rate for children under 10 years old. Prayer for Amelia's health and counts to continue to hold till we get the answers we need, pray for my sanity and for the strength, and wisdom to keep the fight going, not just for my child but all children who are not receiving the proper care because the insurance companies just wanna make their pocketbooks fatter!!
Thank you so very much.

Sunday, January 9, 2011

up date coming!!!

Got a doosy of an update coming I hope to get it up tomorrow...I'm too stressed and tired right now! But know that we need your prayers...we may be getting the local media and an attorney involved!! I'll do my best to update you all tomorrow!
Good Night all!