Greetings,
We are waiting on paper work and that paper work is going to take a little while, but we have made some tentative plans.We will leave to head to Minnesota shortly after Easter. We had to push it back a week or so because of a major thing, they are opening a new hospital in Minnesota. I was told that if we go in before the switch she would have to be transferred over to the new hospital and any one who has been through a transplant before will know that is not something you want!! She will have no immune system what so ever and I just don't want to take a chance like that. Which that should give them plenty of time to get all the paper work done and the donor narrowed down and ready to go for transplant day.
I think it works out a little better for the kids because, now they will only be missing the last two weeks of school. I still need to go and talk to Nate's school to see if when the time gets closer if they can give me some of his extra work to get it finished and to the principal to see if we can get the last two weeks excused for him. One good thing is he is a straight A student and I think he is more than capable of handling the extra work. When I told him that he wouldn't have to go to a new school in Minneapolis he was so happy. Nathan is an extremely shy boy and can't stand new and change. He was starting to panic about going to a new school, even though I tried to explain to him that it wasn't a big school it was going to be a little homeschool right there at the Ronald McDonald house. I also and glad to have it work this way for both he and Amelia, because we get out of school early in May and I don't think they(Minnesota) gets out of school till some time in June. I want them to enjoy what little bit of a summer they will have. This way too, if Nate is feeling OK he can visit with Amelia and play with her in the hospital! They are best friends, I heard them talking about it yesterday. It was so cute!!
On the home front we have Marshall home sick again. We are taking him back to the doctor this morning, he sound worse than the last time, which was about two weeks ago and he missed a week of school for it. This time I don't think he is going to be able to miss a week of school! He has play practice tomorrow and they need to run the show so he will need to be there. There is truly NEVER a dull moment here in this house, some times its hard to even stop and catch your breath!! Amelia is also going to go and get a finger stick so we can see where her hemoglobin is and if things are pretty much the same we will wait and get a vein puncture CBC on the 1st of March, if it looks worse than before then we will get one sooner. Please pray that her counts continue to remain stable, not just for this one but until we leave to head to Minnesota.
Well gotta run to get ready for the doctor, I'll let ya know how things work out.
Blessings!

It's official......

We're going to Minnesota!!!!!!!!
The Louisianan Sheriff's Association board met today and I am so happy to say that effective March 1st they will be increasing her transplant cap to $800,000.00!!! We have all been crying with such joy....Now I can start getting my "ducks" in a row.
I am not sure when we will be leaving. I am thinking that it will more than likely be shortly after April 1st! There is a lot of paper work that needs to get done! We still need your continued prayers and support as the road is a long and hard one, I will do my best to keep you all up dated!

Blessings,
Kelly

Sitting on pins and needles......

Greetings,

Sorry for the lack of updates, it has been crazy busy here. Amelia did a finger stick last week to see where her counts were. The good news is that her hemoglobin moved up just a bit to 7.1. Up is up and I will take it. She has been a moody little thing and I understand why, one she doesn't fell good and second of all she is so extremely nervous about what is going to be happening in the next few months or so. I've tried to reassure her there is nothing to worry about, but how can I reassure her when I can't reassure myself.

Today the LSA meets, I have no idea what time, I also have no idea where or if I will even hear anything today. I hate the not knowing. I need to know where we are going because there is so much that I need to get together to get organized and this not knowing has me so up in the air and I feel that my mind is a cluttered mess and I just can't seem to think straight, I now know what it means to be in a fog, cause I really feel like that. Too much going on at one time, too much to take care of!! I like organization and schedules! I'm so unorganized I have no idea of what to even cook.
I also hate sitting here on pins and needles waiting to hear what their decision would be. So many emotions bottled up inside, I wanna scream, I wanna cry and most of all I can't do any of it with Amelia around, I can't and won't let her know that I am feeling this way. She needs to think that I know what I am doing!
Oh her health from she is doing fairly well. The doctor said we could wait till the 16th of Feb to get counts again. Amelia is happy with that decision.
Nathan too has been real clingy, I think he knows that somethings are getting ready to change but has no idea of what or how.

Speaking of Nate, he has his Father/Son cake bake on Monday night for Cub Scouts. The categories were, of course, things having to do with cub scouts, Saints and gross out. Nathan decided to do a gross out cake.... He wanted to do a toilet.... so here are a few pictures of his.....

yes it was a toilet cake with both in there and a bit of toilet paper...needless to say it was pretty gross!!!




And here is the first place winner in the gross out category


He was so proud of his trophy!!
Well I'm off to figure out something to cook....taco's anyone?
As soon as I hear anything on this screwed up mess of insurance I will be sure to post an update.
Blessings,

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.

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 healthcare.gov.

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.

Sincerely,

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.
Blessings,

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!

Time of year...

Is it possible to love and hate the same time of year? I do! I love the holidays, of course who really doesn't love them? I hate the anniversary that is right around the corner. I think it came flooding back to me as I laid down to get Nathan to go to sleep. You see his room was once Marshall's room. It has changed a bit but not a lot. We had carpet in there back then and now we have hard wood floors, there is a different bed in there now. The paint is newer but still the same basic color and the wallpaper border is still the same for almost 12 years now(dinosaurs), which will change soon. Anyway as I was laying there in the bed with Nate all kinds of memories from 8 years ago came flooding back. Well it's not quite there yet on Jan 11th to be exact will be 8 years. I was remembering how the night started. Marshall was sick with a cold and yucky coughing and all. The night progressed and he started to throw up some blood, not a lot and he has extremely low platelets and I was not that worried...but as the night went on I just remember him saying weird things and then BOOM, it hit me like it hit him...I called the pediatrician and told her, this was like at midnight and she said what I think deep down I already knew...get him to Tulane Hospital ASAP. She asked if we wanted her to call an ambulance, but Ty figured he would get him there a lot faster than them, as first they would have to find us in the woods. When we got to the causeway we payed the toll and told the toll booth lady we were on our way to the ER she notified any police that were working on the bridge that night so if they saw us they would know what was going on...it's at a time like this that having police officer training is very helpful. When we reached the south shore we just went ran red lights and all we thought for sure that some police man somewhere was going to follow us to the ER, but no we were lucky. When we arrived at the Er they were ready and waiting for us. Thankfully one of our favorite police friends was working (we had met him just a few weeks earlier) and was so helpful. The doctors already suspected what was wrong but didn't tell us till it was confirmed and they worked quickly and it is that quickness and thoroughness that they took that I am thankful for today that my son is still alive!! I don't think I will ever for get that night. Ty was so worried not only about Marshall but me as well as I was pregnant with Nathan and was an extreme high risk pregnancy. We were told that who ever needed to get there need to get there now! We called my mom and dad and they came with Mimi quickly. You see it was also their anniversary!
Any way lets just say the next 48 hours or so were so critical, he had had brain surgery to repair a massive brain hemorrhage, lets just say the doctors were NOT optimistic at all. The gave us no prognosis what so ever and all they could tell us is we did what we could do and now time will tell. Time did tell and God preformed a miracle, because in just a few days he was out of the PICU and in a regular room walking talking and learning to eat again. To this day doctors are still amazed at him they told us with the kind of damage to the brain, that he should have been a vegetable basically. The left side of the brain was so swollen that you could hardly see the right side on the CT scan (they showed it to us). The center line of the brain is not suppose to move.
Anyway that is the main reason that I hate this time of year it always bring back those memories, and yes I am thankful that God granted that miracle and he is still here. As a mom though, and all you moms and probably dads too know....I HATE that he even had to go through anything like that!!! So when we call him Mighty Miraculous Marshall...you kinda know why!
Sorry to ramble but I just had to let it out....I'm so thankful it has been 8 years!!
On the home/health front they all seem to be getting over their nasty colds and we will be get Amelia's counts done on the 3rd of Jan.
Keep praying for them and thank you for your prayers they mean the world to us and if anyone knows the power of prayer it is I!!
Blessings,